Hi Everyone. I didn't blog last night and don't think I will get the chance again later today so just doing a quick catch-up as Jimmy is needing allot of my time at the moment.
Since yesterday afternoon he has not been feeling great. He is constantly nauseous and totally exhausted. The tingling/numbness in his hands is driving him mad. He sits for 15 minutes and then goes and lies down and this last 20 minutes before he gets agitated and then he is up again. He hasn't slept for the last 2 nights either and this with one sleeping tablet at bedtime and another half at around 2am. He is feeling depressed too. And on top of all this, his back is sore again and I am battling to get him to eat anything. Amazing how quickly the day can change. We woke up yesterday morning, had breakfast and then he announced he wanted to go for a walk. I was like yessss!!! We dressed up like snowmen and went around the block and it was lovely to be outside in the fresh morning air and discuss arbitrary things like peoples pavements.
We went through for chemo this morning and I really thought they were going to tell us that we can go home because they are going to reduce the treatment to once a week but we saw Dr McCreesh and she said that they really don't want to slow the chemo treatment down. The more vigorously he can have the chemo the better for his back as he needs to get mobile again. They have added another anti-nausea tablet to his collection and we have to take him off the sleeping tablets and he now has to have 50mg of Trepiline at bedtime but not after 9:30pm. Thankfully there was only us and one other patient in the clinic this morning so we were done in 3 hours. Even the drive home was too much for Jimmy :(
The house is slowly filling as the kids all start trickling in for the weekend. Shame, and Jimmy was looking so forward to watching Shannon play hockey tomorrow morning. Let's hope he is feeling up to it.
My blessings once again are a thank you to Colleen for the tasty Chicken Curry and the lovely surprise visit from Gill with a huge bunch of St Joseph Lillies, one of my favourite flowers.
Please keep Jimmy in your thoughts and prayers and I look forward to being able to blog with some positive news tomorrow or Sunday.
2014/05/30
2014/05/28
Wednesday, 28th May
Chemo went well yesterday, just a very long day. A whole lot of concoctions were added and Jimmy had 6 bags that had to s..l..o..w..l..y drip through. Thankfully this long episode will only be at the beginning of each cycle. It was nice to see our new Tuesday friends again too. I do get a bit frustrated with the whole medical aid system. I went to get his tablets for the next 3 days and it wouldn't go through medical aid because I wasn't making use of the preferred provider. I ask you.....aren't we at Netcare, nearly an hour away from home, because Netcare Hospitals are our preferred provider??
Today is Wednesday.....my girls come for the night and it's lovely having them here. I just love cooking dinner with them hanging around telling me stories of what's going on in their lives and of course my favourite....their antics at school. I don't remember enjoying school so much. I did love school but I don't think we had so much fun and we were all scared of our teachers. I haven't seen them for a week and it feels like a lifetime. We are also looking forward to this weekend as all the kids will be here and the house will be busy with lots of love and laughter.
Even with a sleeping tablet, Jimmy did not sleep very well last night. At about 5pm yesterday afternoon his hands started with the numb/tingling feeling again and it hasn't stopped. From what he has explained to me it must feel a bit like restless leg syndrome. It frustrates him terribly. He is feeling terribly down today too. I am sure this weather has something to do with it. Funny how we were discussing how you sit at work on days like this and wish you could be at home, under a blanket on the couch, watching movies. Well Jimmy is so tv'd out and he isn't really interested in reading a book or even a magazine. I think there is a good South African word to sum up how he feels...gatvol.
I think he was very grateful for the meeting he had with one of his colleagues this afternoon. He really misses the office environment and this gives him a chance to catch up on things. We also had a surprise visit from Jorrie which was lovely. Next time Jorrie, you will have to come on a weekend so that I can have a long overdue catch up with Magda. Quite funny because Jorrie came in through the garage and noticed our caravan and they have just bought the same one. We look forward to a relaxing camp with you guys in the near future.
I phoned Olivia at the chemo clinic this morning to tell her that the feeling in Jimmy's hands is worse and she said she would get in touch with Prof. There isn't anything they can do for it but she also said that she thinks they will slow down the chemo to once a week instead of twice. Of course this has other consequences like the fact that the whole chemo period will be doubled and his back pain will take twice as long to get better. And there I was worried that Jimmy might lie to me about his hands because he wants to get his treatments over and done with. All I can say is that if he is complaining, knowing it is going to prolong everything, it must be very uncomfortable.
Things are really starting to move along with regards to Megan leaving in July and going to work for the Norwegian Cruise Lines. Tomorrow at 2pm we have an appointment with the Italian consulate as we now have her letter of employment, insurance documents and flights etc. She joins the NCL Jade in Venice, Italy and they set sail on the 12th of July. It's an 8 month contact and she is so excited about this adventure which she is about to embark on. My girls are growing up far too quickly!
My blessings today are Kathi and Antony for the awesome homemade steak pie which was delivered for supper last night. I always fancied myself as a not-half-bad-cook but you people are all putting me to shame. It would be nice if a bad cook would drop off a meal to make me feel good ;) :) And then to Steve and Kathrin, thank you so much for the wonderful offer of a little time away in the Farmhouse at Bonnievale River Lodge. This might just be what the doctor ordered.
Today is Wednesday.....my girls come for the night and it's lovely having them here. I just love cooking dinner with them hanging around telling me stories of what's going on in their lives and of course my favourite....their antics at school. I don't remember enjoying school so much. I did love school but I don't think we had so much fun and we were all scared of our teachers. I haven't seen them for a week and it feels like a lifetime. We are also looking forward to this weekend as all the kids will be here and the house will be busy with lots of love and laughter.
Even with a sleeping tablet, Jimmy did not sleep very well last night. At about 5pm yesterday afternoon his hands started with the numb/tingling feeling again and it hasn't stopped. From what he has explained to me it must feel a bit like restless leg syndrome. It frustrates him terribly. He is feeling terribly down today too. I am sure this weather has something to do with it. Funny how we were discussing how you sit at work on days like this and wish you could be at home, under a blanket on the couch, watching movies. Well Jimmy is so tv'd out and he isn't really interested in reading a book or even a magazine. I think there is a good South African word to sum up how he feels...gatvol.
I think he was very grateful for the meeting he had with one of his colleagues this afternoon. He really misses the office environment and this gives him a chance to catch up on things. We also had a surprise visit from Jorrie which was lovely. Next time Jorrie, you will have to come on a weekend so that I can have a long overdue catch up with Magda. Quite funny because Jorrie came in through the garage and noticed our caravan and they have just bought the same one. We look forward to a relaxing camp with you guys in the near future.
I phoned Olivia at the chemo clinic this morning to tell her that the feeling in Jimmy's hands is worse and she said she would get in touch with Prof. There isn't anything they can do for it but she also said that she thinks they will slow down the chemo to once a week instead of twice. Of course this has other consequences like the fact that the whole chemo period will be doubled and his back pain will take twice as long to get better. And there I was worried that Jimmy might lie to me about his hands because he wants to get his treatments over and done with. All I can say is that if he is complaining, knowing it is going to prolong everything, it must be very uncomfortable.
Things are really starting to move along with regards to Megan leaving in July and going to work for the Norwegian Cruise Lines. Tomorrow at 2pm we have an appointment with the Italian consulate as we now have her letter of employment, insurance documents and flights etc. She joins the NCL Jade in Venice, Italy and they set sail on the 12th of July. It's an 8 month contact and she is so excited about this adventure which she is about to embark on. My girls are growing up far too quickly!
My blessings today are Kathi and Antony for the awesome homemade steak pie which was delivered for supper last night. I always fancied myself as a not-half-bad-cook but you people are all putting me to shame. It would be nice if a bad cook would drop off a meal to make me feel good ;) :) And then to Steve and Kathrin, thank you so much for the wonderful offer of a little time away in the Farmhouse at Bonnievale River Lodge. This might just be what the doctor ordered.
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| Thank you for all your positive comments, love and prayers. |
2014/05/26
I just have to add to today's blog....
We have had such positive feed back from the appointment with Prof Novitzky this evening. He is very happy with the results of the first cycle of chemo and everything is running according to plan. They took bloods in the clinic before we saw him so he explained that obviously he doesn't have these results yet, they will serve as the official blood results of the first cycle. He has however seen the history of the bloods taken each day and he is happy. Jimmy is still very anaemic and this is probably why he has been so tired over the last few days.
We discussed the constant backache that Jimmy still has and he said that he is not too keen to do radium treatment as there are too many side effects for the bone marrow. He says that he can see a big improvement with Jimmy's back and we are only over the first cycle of chemo. He suggested we hang in there till the end of the second cycle and re-evaluate then.
He has decided that all the chemo will be done intravenously for the way forward as well as the cortisone which means Jimmy doesn't have to swallow 40 tablets for breakfast each morning again. He is also going to prescribe a calcium injection once a month. At the stage we are still looking at 4 cycles of chemo and not the possible 6. Jimmy has been complaining of numb/tingling sensations in his hands and Prof said that we must keep an eye on this. We need to report any difference to the sister in the clinic each day before chemo and she will phone prof with this information before he gives the go-ahead for the chemo. This is apparently a side effect of the Velcade (one of the chemo drugs), it causes inflammation of the nerve endings. If it becomes a problem then they will slow the chemo treatments down to once a week instead of twice a week.
He also explained some more of the stem cell transplant; once the chemo cycles are finished and Jimmy is in remission they will motivate to the medical aid for a stem cell transplant. This takes 2 to 4 weeks. The only time they wouldn't do the transplant is for clinical reasons like heart problems but Jimmy will constantly be evaluated throughout chemo and he is not expecting any problems like this. The stem cell transplant process takes about 3 months. During this time they will remove his stem cells and freeze them. He then gets a heavy dose of chemo to kill everything that is left and then they do the transplant. He will be in hospital for a month in isolation.
The good news is that Prof says once he has had the stem cell transplant it will take Jimmy back 6 to 7 years. To which I commented that I hope he won't be looking for a new wife! You have to picture Prof Novitzky. He is in his 60's, very tall and Polish and wears a big beige suite......he burst out laughing and in his thick polish accent and a wiggle of his index finger he said to me "you better watch out"!
We discussed the constant backache that Jimmy still has and he said that he is not too keen to do radium treatment as there are too many side effects for the bone marrow. He says that he can see a big improvement with Jimmy's back and we are only over the first cycle of chemo. He suggested we hang in there till the end of the second cycle and re-evaluate then.
He has decided that all the chemo will be done intravenously for the way forward as well as the cortisone which means Jimmy doesn't have to swallow 40 tablets for breakfast each morning again. He is also going to prescribe a calcium injection once a month. At the stage we are still looking at 4 cycles of chemo and not the possible 6. Jimmy has been complaining of numb/tingling sensations in his hands and Prof said that we must keep an eye on this. We need to report any difference to the sister in the clinic each day before chemo and she will phone prof with this information before he gives the go-ahead for the chemo. This is apparently a side effect of the Velcade (one of the chemo drugs), it causes inflammation of the nerve endings. If it becomes a problem then they will slow the chemo treatments down to once a week instead of twice a week.
He also explained some more of the stem cell transplant; once the chemo cycles are finished and Jimmy is in remission they will motivate to the medical aid for a stem cell transplant. This takes 2 to 4 weeks. The only time they wouldn't do the transplant is for clinical reasons like heart problems but Jimmy will constantly be evaluated throughout chemo and he is not expecting any problems like this. The stem cell transplant process takes about 3 months. During this time they will remove his stem cells and freeze them. He then gets a heavy dose of chemo to kill everything that is left and then they do the transplant. He will be in hospital for a month in isolation.
The good news is that Prof says once he has had the stem cell transplant it will take Jimmy back 6 to 7 years. To which I commented that I hope he won't be looking for a new wife! You have to picture Prof Novitzky. He is in his 60's, very tall and Polish and wears a big beige suite......he burst out laughing and in his thick polish accent and a wiggle of his index finger he said to me "you better watch out"!
Monday, 26th May
Well, if I thought Saturday morning was a lazy one then I'm not quite sure what to call Sunday morning. We remained in bed quite late and watched the tennis on tv. It really is so nice that Jimmy can lie in and adjust the bed to suit his comfortability.
We had only been up about 20 minutes when Rohan and Patsy phoned to say they popping in for tea with delicious croissants. It's always nice to see our dear friends. We did the whole shower rigmarole and then Will and Sheila phoned to say they on Oukaapse Weg, can they pop in for tea? You know how good your friends are when you can to say yes but can you please bring milk. I had been shopping and had forgotten to buy milk, and this with a shopping list too!! We haven't seen the Ellis's since they got back from their Bali holiday, so it was lovely to hear all about it. Sheila still has her tan and they've been back nearly a month already.
I had to return a DVD this morning and Jimmy said he wanted to come with so I seized the moment. We got him a new pair of jeans and a casual jacket for winter as he is feeling the cold which, for him is very unusual. He is even wearing thermal vests to keep warm.
We see prof this evening at 5pm for Jimmy's pre new cycle of chemo checkup and then tomorrow morning we start with the second cycle of chemo.
I hope you all have a fantastic week xx
We had only been up about 20 minutes when Rohan and Patsy phoned to say they popping in for tea with delicious croissants. It's always nice to see our dear friends. We did the whole shower rigmarole and then Will and Sheila phoned to say they on Oukaapse Weg, can they pop in for tea? You know how good your friends are when you can to say yes but can you please bring milk. I had been shopping and had forgotten to buy milk, and this with a shopping list too!! We haven't seen the Ellis's since they got back from their Bali holiday, so it was lovely to hear all about it. Sheila still has her tan and they've been back nearly a month already.
I had to return a DVD this morning and Jimmy said he wanted to come with so I seized the moment. We got him a new pair of jeans and a casual jacket for winter as he is feeling the cold which, for him is very unusual. He is even wearing thermal vests to keep warm.
We see prof this evening at 5pm for Jimmy's pre new cycle of chemo checkup and then tomorrow morning we start with the second cycle of chemo.
I hope you all have a fantastic week xx
2014/05/24
Saturday, 24th May
My gosh, the days are really just rolling into each other and I am losing track of where we are. Not having the girls here adds to this feeling too as I don't drop and fetch them from school or sports anymore. Jimmy has been home for almost 6 weeks already. On Thursdays I still get that little excited feeling about the weekend being around the corner but I have to say that this morning when I woke up it wasn't that nice to realise that it was Saturday and that our day will be just the same as it is any other day. I look forward to when Jimmy is strong enough so we can drive up to my folks for the weekend or go away somewhere close or even to Imhoff Caravan Park in Kommetjie for the weekend.
Yesterday was a pretty normal day but a nice break from having to go through for chemo treatment. We had a lovely visit from Edward, thank you for taking the time to pop in during your busy day. Jimmy has been very tired lately and a bit pale. He has even been going to lie down and have a sleep in the afternoon. I had to wake him up yesterday evening at 6:15pm because I was scared he would have trouble sleeping last night. We got take aways for supper and then watched a DVD, this is becoming the Friday night ritual.
Oh boy....how could I forget? I had to defend myself with a broom stick against a huge spider. Jimmy spotted it, sitting on the ceiling above my head. He didn't actually say anything but I could see from the look on his face something was amiss. Needless to say, Jimmy disappeared to the other side of the kitchen and stood watching with his hands in his pockets. As I brought the broom closer it was wiggling its 2 front legs back and forth. It fell off the ceiling and landed on the floor right in front of me and I was just about to klap it with an almighty shot of the broom when it jumped forward. I've got goosebumps just thinking about it. Of course once it was all over I did find myself wondering if spiders live in pairs!
I couldn't believe the weather when we woke up today. I had planned a surprise outing for this morning. Stan and Michelle were going to join us but we had to cancel. For those of you reading this who don't live in Cape Town....it is pouring with rain, very dark and cold and the weather bureau warned against 70km p/h gale force north westerly winds. It is howling outside, even our roof trusses are creaking. Unfortunately I can't spill the beans (I never know if and when Jimmy is going to start reading the blog) as we have taken a rain check on the outing and hope to do it some time soon.
Jay Jay popped in for a visit again this morning, it's always nice to see him as he is always happy and has lots of stories to tell and he brings lekkergoed. The milk tart was lovely! I showered Jimmy in the late morning which exhausted him. He has been so strong and now he is quite weak again in the last two days. We were warned that this would more than likely happen as the chemo treatments move along but I didn't think it would happen this early in the treatment. He is complaining allot about his back again too.
We've had a very lazy Saturday, it actually feels just like a Sunday. I cooked early and we ate supper at 3:30pm. We really are starting to act like a retired couple, next thing we'll be eating jam sandwiches for supper. Jimmy is watching the Stormers beat the Cheetahs which is being played at Newlands. Shame, I know he is wishing he could be there.
Yesterday was a pretty normal day but a nice break from having to go through for chemo treatment. We had a lovely visit from Edward, thank you for taking the time to pop in during your busy day. Jimmy has been very tired lately and a bit pale. He has even been going to lie down and have a sleep in the afternoon. I had to wake him up yesterday evening at 6:15pm because I was scared he would have trouble sleeping last night. We got take aways for supper and then watched a DVD, this is becoming the Friday night ritual.
Oh boy....how could I forget? I had to defend myself with a broom stick against a huge spider. Jimmy spotted it, sitting on the ceiling above my head. He didn't actually say anything but I could see from the look on his face something was amiss. Needless to say, Jimmy disappeared to the other side of the kitchen and stood watching with his hands in his pockets. As I brought the broom closer it was wiggling its 2 front legs back and forth. It fell off the ceiling and landed on the floor right in front of me and I was just about to klap it with an almighty shot of the broom when it jumped forward. I've got goosebumps just thinking about it. Of course once it was all over I did find myself wondering if spiders live in pairs!
I couldn't believe the weather when we woke up today. I had planned a surprise outing for this morning. Stan and Michelle were going to join us but we had to cancel. For those of you reading this who don't live in Cape Town....it is pouring with rain, very dark and cold and the weather bureau warned against 70km p/h gale force north westerly winds. It is howling outside, even our roof trusses are creaking. Unfortunately I can't spill the beans (I never know if and when Jimmy is going to start reading the blog) as we have taken a rain check on the outing and hope to do it some time soon.
Jay Jay popped in for a visit again this morning, it's always nice to see him as he is always happy and has lots of stories to tell and he brings lekkergoed. The milk tart was lovely! I showered Jimmy in the late morning which exhausted him. He has been so strong and now he is quite weak again in the last two days. We were warned that this would more than likely happen as the chemo treatments move along but I didn't think it would happen this early in the treatment. He is complaining allot about his back again too.
We've had a very lazy Saturday, it actually feels just like a Sunday. I cooked early and we ate supper at 3:30pm. We really are starting to act like a retired couple, next thing we'll be eating jam sandwiches for supper. Jimmy is watching the Stormers beat the Cheetahs which is being played at Newlands. Shame, I know he is wishing he could be there.
2014/05/22
Thursday, 22nd May
It's amazing how day by day Jimmy just seems better and more like the Jimmy we all know. Another excellent night's sleep too. He even says his back doesn't seem as painful since we got the new bed. It's all so positive and I am loving it!
It was so nice having the girls for the night last night, our home felt normal again.
Jimmy had a lazy morning in bed. I went to drop the girls at school and got him a treat chococino take away which he had in bed and then he got up at about 9am. Megan treated us to Mcdonald's Muffins with hash browns for breakfast too....thanks Meggypegs.
Jimmy had a conference call this morning and did some more work. I can even hear the difference in his voice when he is on the phone now. It was such a lovely day today with no wind and rain and that nice, warm winters day sun, so we spent some time sitting on the veranda baking like lizards in the warm sun. I took Jimmy shopping in the wheel chair to look for some king pillows and pillowcases for our new bed this afternoon and then when we got home he had a snooze. It was also very nice having Megan come with us and spend the day with us today. I think I might try and plan an outing once a week, during the week, for a change in scenery.
The best thing about tomorrow is that it is chemo free Friday! (big smile)
My blessings today were Colleen who dropped off a big bowl of stew, we can't wait to warm this up for supper...thank you very much.
It was so nice having the girls for the night last night, our home felt normal again.
Jimmy had a lazy morning in bed. I went to drop the girls at school and got him a treat chococino take away which he had in bed and then he got up at about 9am. Megan treated us to Mcdonald's Muffins with hash browns for breakfast too....thanks Meggypegs.
Jimmy had a conference call this morning and did some more work. I can even hear the difference in his voice when he is on the phone now. It was such a lovely day today with no wind and rain and that nice, warm winters day sun, so we spent some time sitting on the veranda baking like lizards in the warm sun. I took Jimmy shopping in the wheel chair to look for some king pillows and pillowcases for our new bed this afternoon and then when we got home he had a snooze. It was also very nice having Megan come with us and spend the day with us today. I think I might try and plan an outing once a week, during the week, for a change in scenery.
The best thing about tomorrow is that it is chemo free Friday! (big smile)
My blessings today were Colleen who dropped off a big bowl of stew, we can't wait to warm this up for supper...thank you very much.
2014/05/21
Wednesday, 21st May
So here we are, Wednesday already and we are at the end of the first cycle of chemotherapy which means we have Friday off.
Chemo went well yesterday. It was our first night of sleeping back in our bed and Jimmy slept through again. We ended up leaving later as we cuddled in bed and only got up at 8am. Before I couldn't even lean forward to give Jimmy a kiss because his back was so sore and his body would go into spasm. We left at 8:45am, the traffic was much lighter so it only took us 35 minutes to get through to UCTPAH. There were 5 other patients on a Tuesday cycle and it was very nice to meet them all. A bit like an AA meeting (not that I have ever been to one) and we will see the same people each Tuesday while they are being treated. It was great chatting to them. Amazing how you meet different people from all different walks of life with one common factor, Cancer. There is even a couple there from Kirkwood who are renting accommodation in Cape Town so that he can have his treatment. So far we have only met one other patient who also has Multiple Myeloma. It's like having a tea parting and talking about gardening expect here we all ask each other about their cancer and what side effects they have etc. Nothing awkward about it and not at all depressing, in fact it's quite positive and who better to talk to than someone else who is going through the same thing with lots of experience. It's also wonderful meeting their partners knowing that they have something in common with me.
Still no side effects from chemo but I must say they are very good about preventing a symptom rather than trying to treat it afterwards. Jimmy has two huge syringes of anti-nausea medication before they inject the chemo into the line and he is on permanent anti-nausea tablets 3 times a day. Sleeping through has made such a difference to his day too. He has been doing some work from home and watching movies and lots of sport.
So, no chemo this Friday as we are in our week off and then on Monday we see Prof which will be a standard appointment being the first day prior to the beginning of the next cycle. We are going to have a chat to him about some radium treatment for Jimmy's back to try and alleviate his pain. This is still a huge bugbear. He did mention something about this at our very first meeting with him so can't really remember what can be done but from what I understand and remember the radium will kill the cancer tumour at the spot of the broken vertebra which is L2 and this will take away his pain which is due to the tumour. We hold thumbs that Prof is keen to do this.
The big excitement yesterday and the reason why I didn't blog last night was because our supadupa new, remote controlled, adjustable, king size bed was delivered. Never bind business class lazy boys, this thing is out of this world. We stopped in at Woollies on our way home from treatment yesterday to buy some bedding in anticipation of the bed's delivery yesterday evening. It looks like spaghetti junction under the bed because there are so many plugs and cables. It is basically a box with 2 slatted beds that lie inside this. Two mattresses fit on top of the slats. Each side works independently of the other and each side also has 2 remote controls; one for manoeuvring the bed and the other one for different pulse and wave vibrations of the mattress. The head of the bed can move up and down and so can the foot of the bed and then there is a third button to move the head and foot of the bed up and down simultaneously. It's very smooth so no jerking which would be a problem for Jimmy's back and very quiet. It works like a bomb as Jimmy is able to move positions by changing the angle of the mattress without having to move himself.
I'm very excited about today being Wednesday as all my chickens will be home for the night. Looking forward to a busy home and catching up on all their school and sport news.
Chemo went well yesterday. It was our first night of sleeping back in our bed and Jimmy slept through again. We ended up leaving later as we cuddled in bed and only got up at 8am. Before I couldn't even lean forward to give Jimmy a kiss because his back was so sore and his body would go into spasm. We left at 8:45am, the traffic was much lighter so it only took us 35 minutes to get through to UCTPAH. There were 5 other patients on a Tuesday cycle and it was very nice to meet them all. A bit like an AA meeting (not that I have ever been to one) and we will see the same people each Tuesday while they are being treated. It was great chatting to them. Amazing how you meet different people from all different walks of life with one common factor, Cancer. There is even a couple there from Kirkwood who are renting accommodation in Cape Town so that he can have his treatment. So far we have only met one other patient who also has Multiple Myeloma. It's like having a tea parting and talking about gardening expect here we all ask each other about their cancer and what side effects they have etc. Nothing awkward about it and not at all depressing, in fact it's quite positive and who better to talk to than someone else who is going through the same thing with lots of experience. It's also wonderful meeting their partners knowing that they have something in common with me.
Still no side effects from chemo but I must say they are very good about preventing a symptom rather than trying to treat it afterwards. Jimmy has two huge syringes of anti-nausea medication before they inject the chemo into the line and he is on permanent anti-nausea tablets 3 times a day. Sleeping through has made such a difference to his day too. He has been doing some work from home and watching movies and lots of sport.
So, no chemo this Friday as we are in our week off and then on Monday we see Prof which will be a standard appointment being the first day prior to the beginning of the next cycle. We are going to have a chat to him about some radium treatment for Jimmy's back to try and alleviate his pain. This is still a huge bugbear. He did mention something about this at our very first meeting with him so can't really remember what can be done but from what I understand and remember the radium will kill the cancer tumour at the spot of the broken vertebra which is L2 and this will take away his pain which is due to the tumour. We hold thumbs that Prof is keen to do this.
The big excitement yesterday and the reason why I didn't blog last night was because our supadupa new, remote controlled, adjustable, king size bed was delivered. Never bind business class lazy boys, this thing is out of this world. We stopped in at Woollies on our way home from treatment yesterday to buy some bedding in anticipation of the bed's delivery yesterday evening. It looks like spaghetti junction under the bed because there are so many plugs and cables. It is basically a box with 2 slatted beds that lie inside this. Two mattresses fit on top of the slats. Each side works independently of the other and each side also has 2 remote controls; one for manoeuvring the bed and the other one for different pulse and wave vibrations of the mattress. The head of the bed can move up and down and so can the foot of the bed and then there is a third button to move the head and foot of the bed up and down simultaneously. It's very smooth so no jerking which would be a problem for Jimmy's back and very quiet. It works like a bomb as Jimmy is able to move positions by changing the angle of the mattress without having to move himself.
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| Our 'supacalafragelisticexpialidotious' bed |
My blessings today are Ewen, my father-in-law, who has become my resident handyman. He has fitted a plug to our scullery for the ice machine and put together my flat pack (thanks Kate for the terminology) pigeon hole filing cabinet for my office. To Mark, Pietie and Joseph from Komatsu who came around last evening to deliver the bed and set it up on this side and to Rohan and Patsy for a delicious savoury tart. And then there is a big blessing that I think about allot and this is that Jimmy is so much better, thank you for all your prayers.
I have a favour to ask; Please could you all keep in mind a friend of ours who has Prostrate Cancer. He is almost finished his radium treatment but the last 2 days have not been very good and it is all taking it's toll, specially on his wife who is juggling work, treatment and family.
2014/05/19
Monday, 19th May
I have been a bit slack at blogging since Friday but this is only because Jimmy is feeling so much better. Even our precious Onge told him today that "my sir is back". We had been out and when he walked in he asked her if she enjoyed her sleep while we were out. She so loves Jimmy's sense of humour.
On Saturday evening Maureen and Clive phoned to say they coming to watch rugby with us and arrived armed with food. It's not often that I don't watch rugby but it was really nice just chatting and catching up on some girl talk while the men supported the Stormers.
Brad and Shannon popped in for a visit on Sunday morning and in the afternoon we had our annual Sunshine Corner golf braai at Ant and Kathi's so we decided that we would pop down for a visit for an hour or so. It was soooo nice to see everyone and I am blown away by how many people are following my blog. We ended up staying just over 2 hours. Two gin and tonics and the good company did wonders for making us feel that life was a bit normal again. In fact, I suggested that maybe I should buy a bottle and have 2 each evening! Coming home was a bit of a downer, almost like back to reality but I went down and got some pizza and a DVD.
Jimmy slept through again last night so we have decided we are going to give our bed another try tonight. I can't believe the difference a good night's sleep has had on him. I had to go to the bank this afternoon to do a wire transfer for some more models that I am importing and I suggested Jimmy come with for the drive and then we stopped so he could have a hair cut. He's done quite a bit of work today, phoning and going through his emails etc. Gosh....I can't believe how quiet the afternoon is without the girls here. It's our first school day since they moved and I am lost not dropping and picking them up and nagging them about having lunch and doing their homework. I miss their classroom stories too.
Tomorrow morning we have another chemo treatment, the last in the first cycle, and then Jimmy has a week off. It's such a pity his back is still so sore because we were just saying that we could have gone camping for a few days.
My blessing today is the book I read last night , Out of the Shadows by Ethel Helman. Thank you Sharon, I am definitely going to see if I can get hold of her other one - An Autumn Life.
On Saturday evening Maureen and Clive phoned to say they coming to watch rugby with us and arrived armed with food. It's not often that I don't watch rugby but it was really nice just chatting and catching up on some girl talk while the men supported the Stormers.
Brad and Shannon popped in for a visit on Sunday morning and in the afternoon we had our annual Sunshine Corner golf braai at Ant and Kathi's so we decided that we would pop down for a visit for an hour or so. It was soooo nice to see everyone and I am blown away by how many people are following my blog. We ended up staying just over 2 hours. Two gin and tonics and the good company did wonders for making us feel that life was a bit normal again. In fact, I suggested that maybe I should buy a bottle and have 2 each evening! Coming home was a bit of a downer, almost like back to reality but I went down and got some pizza and a DVD.
Jimmy slept through again last night so we have decided we are going to give our bed another try tonight. I can't believe the difference a good night's sleep has had on him. I had to go to the bank this afternoon to do a wire transfer for some more models that I am importing and I suggested Jimmy come with for the drive and then we stopped so he could have a hair cut. He's done quite a bit of work today, phoning and going through his emails etc. Gosh....I can't believe how quiet the afternoon is without the girls here. It's our first school day since they moved and I am lost not dropping and picking them up and nagging them about having lunch and doing their homework. I miss their classroom stories too.
Tomorrow morning we have another chemo treatment, the last in the first cycle, and then Jimmy has a week off. It's such a pity his back is still so sore because we were just saying that we could have gone camping for a few days.
My blessing today is the book I read last night , Out of the Shadows by Ethel Helman. Thank you Sharon, I am definitely going to see if I can get hold of her other one - An Autumn Life.
2014/05/17
Saturday, 17th May
Yesterday was our first day getting chemo treatment at the chemotherapy and haematology clinic. I set the alarm for 5am so that I could get Jimmy and myself up and dressed and make sure there was time for him to have breakfast so that he can take his meds. We slept on the couches again on Thursday night and my phone was plugged in some way from me so when the alarm went off at 5am I got up, dismissed it and climbed back under the blanket telling Jimmy he had 5 minutes and then he had to get up. The next thing I knew it was 6:45am. Amazing what you can do when you have to! We were in the car with the kids and driving to school at 7:30am and walked into the chemo clinic at 8:57am. We had to be there at 9am to leave by lunch time. The traffic into town was busy but moved along at a constant pace, the trip took an hour and 10 minutes. I had taken the wheel chair with because we go in the entrance and then up in the lift to the next floor and then it's quite a walk to the clinic but Jimmy said he wanted to walk. We took it very slow and he did very well.
The whole time we were there, there was only Jimmy and one other patient so it went quite smoothly. I think we'll stick to the routine of getting there at 9am though, as when it is busy I can see things taking quite a bit longer. So the first thing they do is draw bloods for a TBC - total blood count. (I'm getting quite good at all this terminology.) This gets sent next door to Groote Schuur Hospital where UCTPAH have their own lab and it takes about 15 minutes to get the results. If the blood counts are good (I think red and white) then we get the go ahead for chemotherapy, which Jimmy's were. The next thing then is they contact the doctor who sends through a script to the pharmacy at the hospital and they mix up the drugs. This takes about an hour although I am sure, once again, it will take longer if the clinic is busier. And then they come with 4 BIG syringes, and squirt these into the line going into the vein in his arm. I now also know that he is on 3 different types of chemo, 2 intravenous ones and an oral tablet. He also gets a syringe of cortisone and one with sterilised water which is used to flush out something. I think I have explained before that the oral chemo is taken once a day for 5 days on the first day of each cycle and they also explained that one treatment in a cycle will be done with a drip as there is a bag of something that he needs, so this treatment will take longer. So, 20 minutes later and chemo was done. Then we wait for a script for all his pills, nausea etc and go to the pharmacy and wait for these. We got home at 12h30. I was very chuffed with this but of course five and a half hours for Jimmy is a long time and he was exhausted.
Yesterday evening the girls left to go live with Mike, heart breaking to say the least. I tried to be strong in front of them and happily wave them goodbye as they start a new chapter in their lives but I failed miserably. It was a very empty feeling standing in the driveway and waving goodbye as they went down the road.
I collected the script for Jimmy's sleeping tablets in the afternoon. We slept on the couches again last night and although not a brilliant night's sleep, much better than in a long time. Yay to the sleeping tablets!! The pills wouldn't go through medical aid as we have already reached our limit. R11 000,00 since the 15th of April on blood tests and pain killers. This doesn't include the chemotherapy for 4 months as this goes through as a involuntary prescribed minimum benefit, the cost of which is R383 428,32. I wonder how much the stem cell transplant is going to cost? Which brings me to the adjustable beds....the cheapest one I can find is at Tagelberg Furnishers - R32 000.00! I think we should try out the bed in the caravan and maybe move into that lol.
I showered Jimmy this morning and have some wonderful news. Usually he can only just lift the front of his foot off the ground and then put the weight back on this and lift the back of his foot up so I can get his jocks and tracksuit pants on. This morning he held onto the handbasin while I knelt down in front of him, and he managed to lift his foot completely off the ground. Colleen also dropped off a zimmer frame yesterday afternoon <3 and he is like Speedy Gonzales with this thing around the house. He even goes to the toilet on his own now, on condition that I leave the toilet seat up (gggrrrrr) and flush the toilet for him after as he can't manage to bend to lift the seat or flush the toilet. He doesn't seem as tired as he was and has a much happier demeanour so I am now sure it was that oral chemo tablet that made him feel so crappy. I'm also sure the chemo is starting to kick in and kicking the shit out of those cancer cells. I actually can't believe that we have chemo on Tuesday and then we are already in our first week off and nearly at the end of the first cycle.
Some other good news is that we have heard from BA with regard to our tickets to Zimbabwe in October which we had paid for and they are prepared to refund all the ones in the name of Smith, but not the Devoti (my girls) or our friend's tickets. But it looks like they will transfer them into our name so we can refund Rohan and Patsy and use the tickets for a break sometime between now and April next year. A very welcome thought. I can see us sitting on a deck somewhere in the bush watching Hippo spray their pooh all over the place haha. It is also sounding very positive that they will refund the accommodation payments and the house boat, so we are holding thumbs.
We working today as there is some more rain coming on Tuesday and Wednesday so Jimmy came for a drive with me this morning and sat in the nice warm car in the sun, while I did a site visit with Stan.
My blessings today are that Jimmy is feeling much better and even chatty. Thank you Wayne for the visit with Jonty and Keira and congrats to FHHS 1st Hockey girls for beating Brackenfell 1-0. Rumour has it Loren, that you did well in defending a goal!
The whole time we were there, there was only Jimmy and one other patient so it went quite smoothly. I think we'll stick to the routine of getting there at 9am though, as when it is busy I can see things taking quite a bit longer. So the first thing they do is draw bloods for a TBC - total blood count. (I'm getting quite good at all this terminology.) This gets sent next door to Groote Schuur Hospital where UCTPAH have their own lab and it takes about 15 minutes to get the results. If the blood counts are good (I think red and white) then we get the go ahead for chemotherapy, which Jimmy's were. The next thing then is they contact the doctor who sends through a script to the pharmacy at the hospital and they mix up the drugs. This takes about an hour although I am sure, once again, it will take longer if the clinic is busier. And then they come with 4 BIG syringes, and squirt these into the line going into the vein in his arm. I now also know that he is on 3 different types of chemo, 2 intravenous ones and an oral tablet. He also gets a syringe of cortisone and one with sterilised water which is used to flush out something. I think I have explained before that the oral chemo is taken once a day for 5 days on the first day of each cycle and they also explained that one treatment in a cycle will be done with a drip as there is a bag of something that he needs, so this treatment will take longer. So, 20 minutes later and chemo was done. Then we wait for a script for all his pills, nausea etc and go to the pharmacy and wait for these. We got home at 12h30. I was very chuffed with this but of course five and a half hours for Jimmy is a long time and he was exhausted.
Yesterday evening the girls left to go live with Mike, heart breaking to say the least. I tried to be strong in front of them and happily wave them goodbye as they start a new chapter in their lives but I failed miserably. It was a very empty feeling standing in the driveway and waving goodbye as they went down the road.
I collected the script for Jimmy's sleeping tablets in the afternoon. We slept on the couches again last night and although not a brilliant night's sleep, much better than in a long time. Yay to the sleeping tablets!! The pills wouldn't go through medical aid as we have already reached our limit. R11 000,00 since the 15th of April on blood tests and pain killers. This doesn't include the chemotherapy for 4 months as this goes through as a involuntary prescribed minimum benefit, the cost of which is R383 428,32. I wonder how much the stem cell transplant is going to cost? Which brings me to the adjustable beds....the cheapest one I can find is at Tagelberg Furnishers - R32 000.00! I think we should try out the bed in the caravan and maybe move into that lol.
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| Our guest bedroom is slowly turning into a pharmacy |
I showered Jimmy this morning and have some wonderful news. Usually he can only just lift the front of his foot off the ground and then put the weight back on this and lift the back of his foot up so I can get his jocks and tracksuit pants on. This morning he held onto the handbasin while I knelt down in front of him, and he managed to lift his foot completely off the ground. Colleen also dropped off a zimmer frame yesterday afternoon <3 and he is like Speedy Gonzales with this thing around the house. He even goes to the toilet on his own now, on condition that I leave the toilet seat up (gggrrrrr) and flush the toilet for him after as he can't manage to bend to lift the seat or flush the toilet. He doesn't seem as tired as he was and has a much happier demeanour so I am now sure it was that oral chemo tablet that made him feel so crappy. I'm also sure the chemo is starting to kick in and kicking the shit out of those cancer cells. I actually can't believe that we have chemo on Tuesday and then we are already in our first week off and nearly at the end of the first cycle.
Some other good news is that we have heard from BA with regard to our tickets to Zimbabwe in October which we had paid for and they are prepared to refund all the ones in the name of Smith, but not the Devoti (my girls) or our friend's tickets. But it looks like they will transfer them into our name so we can refund Rohan and Patsy and use the tickets for a break sometime between now and April next year. A very welcome thought. I can see us sitting on a deck somewhere in the bush watching Hippo spray their pooh all over the place haha. It is also sounding very positive that they will refund the accommodation payments and the house boat, so we are holding thumbs.
We working today as there is some more rain coming on Tuesday and Wednesday so Jimmy came for a drive with me this morning and sat in the nice warm car in the sun, while I did a site visit with Stan.
My blessings today are that Jimmy is feeling much better and even chatty. Thank you Wayne for the visit with Jonty and Keira and congrats to FHHS 1st Hockey girls for beating Brackenfell 1-0. Rumour has it Loren, that you did well in defending a goal!
2014/05/15
Thursday, 15th May
Can you believe that today, one month ago, we were told that Jimmy has Myeloma.
Jimmy had another terrible night's sleep. He is permanently uncomfortable, whether he is sitting in the lazy boy, lying on the couch or in bed. I phoned the Doctor this morning and she said I must add two Paracetamol tablets each time he takes his pain killers. She also said I should give him some Trepiline and she would send through a script for some sleeping pills. I should get this tomorrow. On the positive, Jimmy's chest is feeling must better.
We are getting into a routine at home now with all the different things that need to be done at different times with rests in between. The pill schedule is something on its own and showering takes an hour! Tomorrow is our first time of driving through to the Chemo Clinic at UCTPAH for his treatment. We were told that if we are there by 9am we should be out by lunch time so this means I need to get Jimmy up and dressed with breakfast so that he can have his medication. We plan to drop the girls at school and then drive straight through from there at 07h40. I am dreading the morning traffic into Cape Town but we'll use tomorrow as a test run and see how long it takes us. It is pouring with rain so I am expecting it to take a bit longer and there is sure to be a robot out of order or a fender bender to test my nerves. And.....as sick as Mr Smith is....he still likes to backseat drive :)
I had such a busy day work wise. It's like the dealers all decided today is the day to order Harleys and I had some enquiries from other companies too. I did some catch-up Brush Works paperwork and I am all up to date again...it feels good. It looks like we going to have a busy Winter. I haven't been on site this whole week so I need to make time for that next week. I have also been googling adjustable beds as I was thinking that maybe this is the way to go for Jimmy. Tafelberg Furnishers have one but no prices on the web so on Monday I'll do some phoning around. Any recommendations?
My blessings today was definitely the Cottage Pie Colleen made for us. In fact, I don't think I will ever make cottage pie again, the stakes are just too high. It was lovely to see Rohan and Patsy again who have both been too sick....we have missed you! And to those who touched me today with special words, thank you.
Jimmy had another terrible night's sleep. He is permanently uncomfortable, whether he is sitting in the lazy boy, lying on the couch or in bed. I phoned the Doctor this morning and she said I must add two Paracetamol tablets each time he takes his pain killers. She also said I should give him some Trepiline and she would send through a script for some sleeping pills. I should get this tomorrow. On the positive, Jimmy's chest is feeling must better.
We are getting into a routine at home now with all the different things that need to be done at different times with rests in between. The pill schedule is something on its own and showering takes an hour! Tomorrow is our first time of driving through to the Chemo Clinic at UCTPAH for his treatment. We were told that if we are there by 9am we should be out by lunch time so this means I need to get Jimmy up and dressed with breakfast so that he can have his medication. We plan to drop the girls at school and then drive straight through from there at 07h40. I am dreading the morning traffic into Cape Town but we'll use tomorrow as a test run and see how long it takes us. It is pouring with rain so I am expecting it to take a bit longer and there is sure to be a robot out of order or a fender bender to test my nerves. And.....as sick as Mr Smith is....he still likes to backseat drive :)
I had such a busy day work wise. It's like the dealers all decided today is the day to order Harleys and I had some enquiries from other companies too. I did some catch-up Brush Works paperwork and I am all up to date again...it feels good. It looks like we going to have a busy Winter. I haven't been on site this whole week so I need to make time for that next week. I have also been googling adjustable beds as I was thinking that maybe this is the way to go for Jimmy. Tafelberg Furnishers have one but no prices on the web so on Monday I'll do some phoning around. Any recommendations?
My blessings today was definitely the Cottage Pie Colleen made for us. In fact, I don't think I will ever make cottage pie again, the stakes are just too high. It was lovely to see Rohan and Patsy again who have both been too sick....we have missed you! And to those who touched me today with special words, thank you.
2014/05/14
Wednesday, 14th May
I have to start tonight's blog on a more serious note: Jimmy is enjoying the visits from all our friends, it really does make the day a bit more social. He is still quite weak, tires easily and becomes a bit breathless if he talks allot, so please don't be offended if he goes quiet for a bit. I have even stocked up with biscuits now to go with the tea and coffee :) . But and this is a big BUT - if you are not feeling well or have the sniffles and think you might be getting a cold and haven't recovered completely from a cold or flu or a tummy bug or whatever, PLEASE don't come visit until you are well. He still isn't over the Pneumonia and we really can't afford any setbacks. Last week Jimmy mentioned to me in the afternoon he felt like he was getting a cold and 12 hours later he was in hospital with Pneumonia. The cancer has eaten away at his immune system and because he has a fractured vertebra he is not as mobile as he should be which makes him a high risk candidate for Pneumonia. They cannot do anything about his back until he is in remission, which means he will carry on being a high risk candidate for Pneumonia. I will unfortunately have to turn you away at the door. Thanks for understanding.
Jimmy didn't have such a good night's sleep but I must say, when he sleeps he does sleep so deeply. He is in much better spirits today with no signs of being down. He is also coughing much less which is a big plus for his comfort ability. As I said earlier, he is still quite weak and I don't think his lungs are working at full capacity yet as he gets quite breathless if his sentence is too long. His appetite was also much better today. He had mac and cheese for lunch and banana and custard for pudding! He really is getting very spoilt in that whatever he feels like he gets, I am just too happy he is eating. Yesterday he wouldn't let me leave the house because he wanted to know what would happen if he needed to move while I wasn't here but this afternoon it was mom's taxi and I managed to get some shopping done and he was happy to be at home with Onge. Onge is our domestic who just wants to make tea for him all day....bless her. I hope for another day like today for Jimmy tomorrow.
On a more personal note.....
When I started typing this blog the idea was to keep friends and family updated. It is working really well and I can't believe how many people are following. It has now extended to way beyond just family and friends to include Jimmy's work colleagues here in Bellville as well as all the other branches and some of his customers too. I have had a couple of calls from various colleagues at Komatsu head office and now know that allot of them are also following the blog. When I realised this today a weird feeling came over me. Almost like people I don't even know have been let into our personal lives. Straight away this posed a problem for me and my first thought was I should make it less personal and more of an informative post on Jimmy's treatment and how he is feeling....sort of like a status update, but longer. But after some thought I realised that this won't work because everything that happens helps to paint the picture of how he is doing and our lives as we deal with this all and this is, after all, what I wanted the blog to be about, albeit to friends and family. The description of my blog is that I am writing this as a wife and mother and I wanted it to be a story, not a status update, so a story it will stay. I think I am comfortable with this...oh well....I'll get there.
So, on the back of what I have just explained and writing as a mother now, I had quite a crappy afternoon today. But you have to understand that my version of a crappy afternoon is that I have to go quietly and deal with whatever it is that I am feeling because I don't want Jimmy to know. Or like today I repacked the freezer till my fingers were aching from the ice cold. We talk about stuff all the time and I tell him afterwards or the next day that I had a bit of a wobbly but I don't want him to see me going through this because he has told me he feels so desperately guilty about everything that I have to do for him. About a week after Jimmy was diagnosed Loren came to me and told me that Mike (my ex, their dad) who has been living in Table View, is moving to Fish Hoek. I was very happy to hear this as they only see him every second weekend. Megan and Loren both have part time jobs so they don't even see him every second weekend anymore. When he lived in Fish Hoek previously, it worked really well because he was around the corner and saw allot of the girls all the time. Loren then told me that they had discussed it and because they haven't stayed with Mike for such a long time they would like to go and live with him for a bit. Perhaps not the best thing to say but the first thing I said was "so who decided that you had to break the news to me Loren?" She explained that they had been putting it off but when the house got sold they knew they had to say something and then Jimmy was diagnosed with cancer and there just wasn't a right time. Of course I was absolutely gob smacked to say the least but the 16th of May seemed a long way off and poor Loren went to great pains to explain that it doesn't mean they don't love me but they would really just like to spend some time with their dad. As you can imagine, things have just been go-go-go with Jimmy and each time I think about it I just put it to the back of my mind. Well, today Emma was telling a friend of mine (they are quite excited) and I almost burst into tears in the car in front of him. Today is the 14th.....2 more sleeps!!! In the car on the way home Emma realised I was upset and said that she didn't think it was such a bad thing right now as I have allot on my plate with Jimmy and if they living with Mike I can concentrate on Jimmy and I don't have to worry about them. Worry about them? I asked myself. No mother thinks like this.
This really could not have happened at a worse time. I don't blame the girls, they love their dad just as much as I love them, but it feels like everything I love is slipping though my fingers. I have this empty feeling in my stomach and have felt nauseous all afternoon. I actually wondered today if I am being punished for something but I don't think so because Jimmy is so much worse off than me and I don't believe in stuff like this anyway. Megan is 21, Loren is 18 and Emma is 15 and at 19 I wasn't even living at home anymore.....maybe I am just being overly emotional at the moment.
Gosh, I really am coming to dread Friday....chemo and the girls are moving out....
My blessings today are the friends and family that came to visit Jimmy. Thanks Guy and Shereen for the board game...I can't wait to beat Jimmy hehe. To Steve and Lesley for the books and biltong. Also just a little thank you for your encouraging comments on the blog and Pete, thank you for all you guys are doing for Emma, you always seem to catch me at a bad time :)
Jimmy didn't have such a good night's sleep but I must say, when he sleeps he does sleep so deeply. He is in much better spirits today with no signs of being down. He is also coughing much less which is a big plus for his comfort ability. As I said earlier, he is still quite weak and I don't think his lungs are working at full capacity yet as he gets quite breathless if his sentence is too long. His appetite was also much better today. He had mac and cheese for lunch and banana and custard for pudding! He really is getting very spoilt in that whatever he feels like he gets, I am just too happy he is eating. Yesterday he wouldn't let me leave the house because he wanted to know what would happen if he needed to move while I wasn't here but this afternoon it was mom's taxi and I managed to get some shopping done and he was happy to be at home with Onge. Onge is our domestic who just wants to make tea for him all day....bless her. I hope for another day like today for Jimmy tomorrow.
On a more personal note.....
When I started typing this blog the idea was to keep friends and family updated. It is working really well and I can't believe how many people are following. It has now extended to way beyond just family and friends to include Jimmy's work colleagues here in Bellville as well as all the other branches and some of his customers too. I have had a couple of calls from various colleagues at Komatsu head office and now know that allot of them are also following the blog. When I realised this today a weird feeling came over me. Almost like people I don't even know have been let into our personal lives. Straight away this posed a problem for me and my first thought was I should make it less personal and more of an informative post on Jimmy's treatment and how he is feeling....sort of like a status update, but longer. But after some thought I realised that this won't work because everything that happens helps to paint the picture of how he is doing and our lives as we deal with this all and this is, after all, what I wanted the blog to be about, albeit to friends and family. The description of my blog is that I am writing this as a wife and mother and I wanted it to be a story, not a status update, so a story it will stay. I think I am comfortable with this...oh well....I'll get there.
So, on the back of what I have just explained and writing as a mother now, I had quite a crappy afternoon today. But you have to understand that my version of a crappy afternoon is that I have to go quietly and deal with whatever it is that I am feeling because I don't want Jimmy to know. Or like today I repacked the freezer till my fingers were aching from the ice cold. We talk about stuff all the time and I tell him afterwards or the next day that I had a bit of a wobbly but I don't want him to see me going through this because he has told me he feels so desperately guilty about everything that I have to do for him. About a week after Jimmy was diagnosed Loren came to me and told me that Mike (my ex, their dad) who has been living in Table View, is moving to Fish Hoek. I was very happy to hear this as they only see him every second weekend. Megan and Loren both have part time jobs so they don't even see him every second weekend anymore. When he lived in Fish Hoek previously, it worked really well because he was around the corner and saw allot of the girls all the time. Loren then told me that they had discussed it and because they haven't stayed with Mike for such a long time they would like to go and live with him for a bit. Perhaps not the best thing to say but the first thing I said was "so who decided that you had to break the news to me Loren?" She explained that they had been putting it off but when the house got sold they knew they had to say something and then Jimmy was diagnosed with cancer and there just wasn't a right time. Of course I was absolutely gob smacked to say the least but the 16th of May seemed a long way off and poor Loren went to great pains to explain that it doesn't mean they don't love me but they would really just like to spend some time with their dad. As you can imagine, things have just been go-go-go with Jimmy and each time I think about it I just put it to the back of my mind. Well, today Emma was telling a friend of mine (they are quite excited) and I almost burst into tears in the car in front of him. Today is the 14th.....2 more sleeps!!! In the car on the way home Emma realised I was upset and said that she didn't think it was such a bad thing right now as I have allot on my plate with Jimmy and if they living with Mike I can concentrate on Jimmy and I don't have to worry about them. Worry about them? I asked myself. No mother thinks like this.
This really could not have happened at a worse time. I don't blame the girls, they love their dad just as much as I love them, but it feels like everything I love is slipping though my fingers. I have this empty feeling in my stomach and have felt nauseous all afternoon. I actually wondered today if I am being punished for something but I don't think so because Jimmy is so much worse off than me and I don't believe in stuff like this anyway. Megan is 21, Loren is 18 and Emma is 15 and at 19 I wasn't even living at home anymore.....maybe I am just being overly emotional at the moment.
Gosh, I really am coming to dread Friday....chemo and the girls are moving out....
My blessings today are the friends and family that came to visit Jimmy. Thanks Guy and Shereen for the board game...I can't wait to beat Jimmy hehe. To Steve and Lesley for the books and biltong. Also just a little thank you for your encouraging comments on the blog and Pete, thank you for all you guys are doing for Emma, you always seem to catch me at a bad time :)
2014/05/13
Tuesday, 13th May
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| My Camel Man is home - check out the beard! |
It's so good to have Jimmy home and I think he is looking forward to a good night's sleep without being woken up every two hours to have his vitals checked. He is still very weak and needs to be supported when he walks, which he only does when he needs to go the loo. His breathing is still very shallow and he doesn't talk much because it makes him quite breathless but he is smiling and his colour is good.
My concerns about why he has been feeling so down, unwell and just slept for the last two days have also been explained. His chemotherapy treatment is done in cycles. One cycle is three weeks and this consists of intravenous chemo twice a week for two weeks (Fridays and Tuesdays) and then a week off. But at the start of each cycle i.e. the first Friday, he also has to take an oral chemotherapy tablet once a day for 5 days. It is this tablet that gives him these side effects. When I asked the doctor why this wasn't explained to us she said that unfortunately with him having his first two chemo treatments in hospital, medication is just given orally and in the drip without any explanation. Had we been to the chemo clinic to have the treatment it all would have been explained to us. So basically what will happen when we go through to the clinic on Friday for his third treatment is they will take bloods to make sure everything in order to have the treatment. They then do his chemo treatment and then we get a script for any medication we need like nausea tablets etc.
I downloaded a book on my kindle called Medifocus Guidebook on: Multiple Myeloma. I have found this to be very informative with easy to read explanations. I also have a PDF version which I can email with my password to access it. If anyone is interested in a copy please drop me an email to smithfam@afrihost.co.za and I will reply with the attachment and password.
My blessings today are to thank Aunty Liz for recommending the Multiple Myeloma guidebook and to Kathi for doing a house call, my nails look beautiful! To my Meggypegs for making supper tonight and thank you Ewen for taking the girls to school for the last two mornings.
My new golden rule : reassurance, encouragement, positive attitude and continuous love
Night night all from a happy home tonight xx
2014/05/12
Monday, 12th May
I haven't seen much of Jimmy today at all. I got to the hospital at 11:30am and he was coming back from xrays in a wheelchair. We got him back into bed but he still seems very quiet and tired. His folks were there when I arrived and when they left he was very teary eyed. They brought his lunch which he didn't want to eat and he just says he isn't 'feeling very lekker'. I held his had and he fell asleep so I read my book for two and half hours and he woke up when I was packing up my things to leave.
His folks went through again at 3pm and they only stayed 30 minutes as he was much the same, just drifting in and out of sleep.
This evening I didn't go through as I needed to help Loren and Emma with some school work - very long overdue. Loren has flu and stayed at home today so I helped her with some Afrikaans tonight and Emma has to hand in her science investigation project tomorrow so I helped her with the graphs she needed to do on the PC.
Clive and Maureen offered to go through this evening and phoned to say he was still sleepy when they got there but otherwise they thought he was okay and he was talking to them.
It's funny how so many things go through my mind. I wonder if this is an effect of the chemo but I don't think so because he has his second treatment tomorrow and should be feeling ready for that as it's been 3 days since the last one and he didn't have any side effects. Has the pneumonia got worse? Is he just tired or has he had time to think about everything while he is lying in hospital and just feeling down? Or maybe this is just the ups and downs he will go through? I really am over analysing this but I feel so sorry for Jimmy, he really doesn't deserve all this.
So...tomorrow Jimmy has his second chemo treatment. Let's hold thumbs that it goes as well as the first, that he feels much better tomorrow and with any luck he can come home.
His folks went through again at 3pm and they only stayed 30 minutes as he was much the same, just drifting in and out of sleep.
This evening I didn't go through as I needed to help Loren and Emma with some school work - very long overdue. Loren has flu and stayed at home today so I helped her with some Afrikaans tonight and Emma has to hand in her science investigation project tomorrow so I helped her with the graphs she needed to do on the PC.
Clive and Maureen offered to go through this evening and phoned to say he was still sleepy when they got there but otherwise they thought he was okay and he was talking to them.
It's funny how so many things go through my mind. I wonder if this is an effect of the chemo but I don't think so because he has his second treatment tomorrow and should be feeling ready for that as it's been 3 days since the last one and he didn't have any side effects. Has the pneumonia got worse? Is he just tired or has he had time to think about everything while he is lying in hospital and just feeling down? Or maybe this is just the ups and downs he will go through? I really am over analysing this but I feel so sorry for Jimmy, he really doesn't deserve all this.
So...tomorrow Jimmy has his second chemo treatment. Let's hold thumbs that it goes as well as the first, that he feels much better tomorrow and with any luck he can come home.
2014/05/11
Sunday, 11th May
One day at a time.....and that is how we have to learn to take things....
I didn't go visit Jimmy this morning as I took some time off to do some catch-up at home and got up at 7am to make sure Loren was up and whether she wanted a lift to work or if she was happy to go on her motorbike. She opted to use her motorbike so I got back into bed and the plan was to snooze for another hour. I woke up at 11h15 with the home phone ringing. Emma was fast asleep next to me and Megan was still asleep upstairs. I couldn't believe it was so late! We obviously all needed the lie-in.
The girls and I popped down to De Noordhoek Hotel to Village Sushi this afternoon for a late Mother's Day sushi lunch which was lovely. I really haven't given them much of my time lately and it was just so nice to spend some special time together. Jimmy's folks went to visit him at 3pm as I was going through this evening. The night sister on duty the last two nights has not been very friendly. On Friday night she asked me to leave just after 8pm and last night I didn't even chance staying too late as she was on duty again, but she was a bit friendlier. I asked Jimmy to please ask the day shift to write in the book that I would be spending some extra time with him tonight as he wanted to shower....I am learnig the ropes.
When I got there they were moving his drip from his right hand to his left hand as the right one is very painful, bruised and swollen. We managed to get him up but his back keeps going into spasms so it's a long process of resting in between small movements. I have to get him and the drip into the shower, thankfully it is one of those hand held types so I can spray him off and he has to hold onto the railings around the walls of the shower to hold himself up. He had quite a few spasms in the shower and at one point I thought he was going to collapse.
An hour later I had him back in bed but he is was very weak tonight...he hasn't even got the strength to blow his nose and his chest was feeling very tight so they put him on a nebuliser for 20 minutes. The good news is that his phlegm is much lighter in colour which hopefully means the pneumonia is starting to clear up. I sat with Jimmy for a while but his back kept going into spasm without him even moving and he was complaining about being in allot of pain and feeling dizzy so I went to call the sister. She put some painkillers into the drip and said she is worried about his blood pressure and he needed to go on the oxygen mask so I told him that I was going to go home to give them some space to work on him.
I hope he has a good night's sleep, so that he is rested, and a better day tomorrow as his next chemo treatment is on Tuesday.
I didn't go visit Jimmy this morning as I took some time off to do some catch-up at home and got up at 7am to make sure Loren was up and whether she wanted a lift to work or if she was happy to go on her motorbike. She opted to use her motorbike so I got back into bed and the plan was to snooze for another hour. I woke up at 11h15 with the home phone ringing. Emma was fast asleep next to me and Megan was still asleep upstairs. I couldn't believe it was so late! We obviously all needed the lie-in.
The girls and I popped down to De Noordhoek Hotel to Village Sushi this afternoon for a late Mother's Day sushi lunch which was lovely. I really haven't given them much of my time lately and it was just so nice to spend some special time together. Jimmy's folks went to visit him at 3pm as I was going through this evening. The night sister on duty the last two nights has not been very friendly. On Friday night she asked me to leave just after 8pm and last night I didn't even chance staying too late as she was on duty again, but she was a bit friendlier. I asked Jimmy to please ask the day shift to write in the book that I would be spending some extra time with him tonight as he wanted to shower....I am learnig the ropes.
When I got there they were moving his drip from his right hand to his left hand as the right one is very painful, bruised and swollen. We managed to get him up but his back keeps going into spasms so it's a long process of resting in between small movements. I have to get him and the drip into the shower, thankfully it is one of those hand held types so I can spray him off and he has to hold onto the railings around the walls of the shower to hold himself up. He had quite a few spasms in the shower and at one point I thought he was going to collapse.
An hour later I had him back in bed but he is was very weak tonight...he hasn't even got the strength to blow his nose and his chest was feeling very tight so they put him on a nebuliser for 20 minutes. The good news is that his phlegm is much lighter in colour which hopefully means the pneumonia is starting to clear up. I sat with Jimmy for a while but his back kept going into spasm without him even moving and he was complaining about being in allot of pain and feeling dizzy so I went to call the sister. She put some painkillers into the drip and said she is worried about his blood pressure and he needed to go on the oxygen mask so I told him that I was going to go home to give them some space to work on him.
I hope he has a good night's sleep, so that he is rested, and a better day tomorrow as his next chemo treatment is on Tuesday.
2014/05/10
Saturday, 10th May
I feel like I can concur the world!
This morning when I visited Jimmy and he was looking so much better. And I know I said this yesterday but day by day he is improving. He is finding the back brace very uncomfortable in bed, if it's not digging into his hips then it is pushing up under his ribs. Prof came to see him while I was there, it's the first time he has seen Jimmy since he got the brace yesterday afternoon. We expressed our concern about the back brace and he said that the more Jimmy wears it the better as the chemo is going to help with the pain and the back brace will also keep his spine in the correct position, apart from supporting it. He basically explained that the most important time to wear it is when there is direct pressure on his spine. So that would be standing or walking and if he is sitting in an upright position, like at a dining room table or on a lounge chair etc. It isn't necessary to wear it in the hospital bed as the top of the bed is raised during the day and there is no direct pressure on his spine. Also at night when he sleeps the bed is flat (as it would be at home). He is quite happy that Jimmy doesn't wear it if he sits in his new lazy boy but it must be slightly tilted.
And he looks better yet tonight when I visited. They weighed him today and he has put on 3kg! He is getting used to the Oxygen mask too and using it up 30 minutes at a time now which is very good for his lungs.
Since they started chemo yesterday, a Friday, he will be on a Tuesday and Friday cycle for two weeks and then a week off and this will run for four months. Prof said that he has to stay in hospital for a minimum of 5 - 7 days on the anti-biotics and of course he has to be clear of Pneumonia so we are hoping that he will be discharged on Tuesday or Wednesday. This also means that his second chemo treatment will also be in hospital which I am very happy about. It is more than 24 hours since he had chemo and so far no side effects...YAY!!!
It's amazing how far some positivity can get a person. I was absolutely exhausted this morning and it's not like I had a sleep today but seeing Jimmy so much better this evening has given me so much hope. I have a second wind.....but one like the howling south easterly wind that we experience in Fish Hoek!
And my blessings today are a thank you to Mark for your caring telephone call this morning while I was very teary. And then I have to say a special thank you to a friend's husband who did some acting skills to help Loren out for her school project which is an advert.....I won't mention any names but would loved to have been a fly on the wall :)
This morning when I visited Jimmy and he was looking so much better. And I know I said this yesterday but day by day he is improving. He is finding the back brace very uncomfortable in bed, if it's not digging into his hips then it is pushing up under his ribs. Prof came to see him while I was there, it's the first time he has seen Jimmy since he got the brace yesterday afternoon. We expressed our concern about the back brace and he said that the more Jimmy wears it the better as the chemo is going to help with the pain and the back brace will also keep his spine in the correct position, apart from supporting it. He basically explained that the most important time to wear it is when there is direct pressure on his spine. So that would be standing or walking and if he is sitting in an upright position, like at a dining room table or on a lounge chair etc. It isn't necessary to wear it in the hospital bed as the top of the bed is raised during the day and there is no direct pressure on his spine. Also at night when he sleeps the bed is flat (as it would be at home). He is quite happy that Jimmy doesn't wear it if he sits in his new lazy boy but it must be slightly tilted.
And he looks better yet tonight when I visited. They weighed him today and he has put on 3kg! He is getting used to the Oxygen mask too and using it up 30 minutes at a time now which is very good for his lungs.
Since they started chemo yesterday, a Friday, he will be on a Tuesday and Friday cycle for two weeks and then a week off and this will run for four months. Prof said that he has to stay in hospital for a minimum of 5 - 7 days on the anti-biotics and of course he has to be clear of Pneumonia so we are hoping that he will be discharged on Tuesday or Wednesday. This also means that his second chemo treatment will also be in hospital which I am very happy about. It is more than 24 hours since he had chemo and so far no side effects...YAY!!!
It's amazing how far some positivity can get a person. I was absolutely exhausted this morning and it's not like I had a sleep today but seeing Jimmy so much better this evening has given me so much hope. I have a second wind.....but one like the howling south easterly wind that we experience in Fish Hoek!
And my blessings today are a thank you to Mark for your caring telephone call this morning while I was very teary. And then I have to say a special thank you to a friend's husband who did some acting skills to help Loren out for her school project which is an advert.....I won't mention any names but would loved to have been a fly on the wall :)
Friday, 9th May
It's been a long day. I checked the date now to type into the title and realised that I have completely lost track. I feel like I am in a bit of a time warp. I can't believe that it is Friday already but it also feels like time has stood still.
The poor kids have really taken a back seat. Emma was in tears to me on the phone after school today on the way to RAGA and Loren had a Geography test, which she studied so hard for, and when she sat down to write she went completely blank and said she was so tired she could hardly keep her eyes open. She told her teacher that she could not write the test. And tomorrow Loren is playing her first hockey match for the 1st Team and I won't be there.
I got to the hospital at 11am and Jimmy is still looking good which makes me very happy. The physio department came up to fit a back brace on Jimmy and show us how it works. He had to get out of bed for this which took 20 minutes and he was very wobbly and his muscles are still going into spasm. He says that the back brace felt very comfortable and gives him nice support, but not the most comfortable thing once he was back in bed. He has to wear it all the time, even to bed at night.
Since he was up we decided that he might as well have a shower. With so many pipes and tubes and wobbly legs and a sore back this took 50 minutes. It then took 2 nurses and myself 30 minutes to get him back into bed. I have to say that the thought did cross my mind how I am going to cope at home.
Dr Mccreesh came to see Jimmy and also commented that he was looking so much better than yesterday morning. She confirmed that the authorisation had come through from the medical aid and that they were going to start chemotherapy today. Wow! We've been waiting so long for this and suddenly I am feeling that we aren't even over pneumonia yet and I am definitely not ready for chemo. Jimmy's haemoglobin is low (red blood cells) so they did a blood transfusion and they also removed the pipes from his nose which were giving him oxygen. These were replaced with an oxygen mask that he has to wear for a bit every hour as he isn't using the bottom half of his lungs. This oxygen goes into his lungs and helps circulate right into the unused section so that no bacteria is left there. It also helps prevent his lungs from collapsing. While all this was going on they administered the chemo intravenously and he also has a pill afterwards. It was allot happening very fast and a bit overwhelming as we had thought chemo would start on Monday, so I went outside into the passage to get some air and just try and relax a bit as I didn't want Jimmy to see that I was having what felt like a panic attack.
The good thing about starting the chemo today was that at least he was in hospital and any side effects could easily be dealt with by the nursing staff eg they have been adding nausea medication to his drip all afternoon. I have been feeling a bit apprehensive about the first treatment and any side effects and how to deal with them. This is such unknown territory to us.
I stayed until his folks came to visit at 3pm and then came home to sort the kids out. We had made arrangements that Jimmy's folks and myself and all the kids would go through in two separate cars for the 7pm visit. Having so many children does pose a problem in high care because you are only allowed two visitors at a time so they did it on rotation and I waited in the passage with the ones waiting their turn. At 8pm Jimmy's folks left with the kids and then I stayed for an hour.
And so far....no nausea or diarrhoea. Lets hold thumbs.
Thank you Cheryl, for driving in the peak morning traffic from Paarl to catch me at home before I left for the hospital armed with frozen meals for the freezer. Michelle, thanks for helping out with Loren today at such short notice. I would also like to say thank you to my brother Stan who, in the last week, has taken charge of all things Brush Works related. To my parents (who still work) and were due to leave for a well deserved week's break this afternoon and wanted to cancel things to come and help, please don't worry, I promise I will phone you when I need you. And as I say each day to you all, thank you for your inspirational messages, you will never know how much these mean to us.
Life is an opportunity, benefit from it
Life is beauty, admire it
Life is a dream, realise it
Life is a challenge, meet it
Life is a duty, complete it
Life is a game, play it
Life is a promise, fulfil it
Life is a sorrow, overcome it
Life is a song, sing it
Life is a struggle, accept it
Life is a tragedy, confront it
Life is an adventure, dare it
Life is luck, make it
Life is life, fight for it
Mother Teresa
The poor kids have really taken a back seat. Emma was in tears to me on the phone after school today on the way to RAGA and Loren had a Geography test, which she studied so hard for, and when she sat down to write she went completely blank and said she was so tired she could hardly keep her eyes open. She told her teacher that she could not write the test. And tomorrow Loren is playing her first hockey match for the 1st Team and I won't be there.
I got to the hospital at 11am and Jimmy is still looking good which makes me very happy. The physio department came up to fit a back brace on Jimmy and show us how it works. He had to get out of bed for this which took 20 minutes and he was very wobbly and his muscles are still going into spasm. He says that the back brace felt very comfortable and gives him nice support, but not the most comfortable thing once he was back in bed. He has to wear it all the time, even to bed at night.
Since he was up we decided that he might as well have a shower. With so many pipes and tubes and wobbly legs and a sore back this took 50 minutes. It then took 2 nurses and myself 30 minutes to get him back into bed. I have to say that the thought did cross my mind how I am going to cope at home.
Dr Mccreesh came to see Jimmy and also commented that he was looking so much better than yesterday morning. She confirmed that the authorisation had come through from the medical aid and that they were going to start chemotherapy today. Wow! We've been waiting so long for this and suddenly I am feeling that we aren't even over pneumonia yet and I am definitely not ready for chemo. Jimmy's haemoglobin is low (red blood cells) so they did a blood transfusion and they also removed the pipes from his nose which were giving him oxygen. These were replaced with an oxygen mask that he has to wear for a bit every hour as he isn't using the bottom half of his lungs. This oxygen goes into his lungs and helps circulate right into the unused section so that no bacteria is left there. It also helps prevent his lungs from collapsing. While all this was going on they administered the chemo intravenously and he also has a pill afterwards. It was allot happening very fast and a bit overwhelming as we had thought chemo would start on Monday, so I went outside into the passage to get some air and just try and relax a bit as I didn't want Jimmy to see that I was having what felt like a panic attack.
The good thing about starting the chemo today was that at least he was in hospital and any side effects could easily be dealt with by the nursing staff eg they have been adding nausea medication to his drip all afternoon. I have been feeling a bit apprehensive about the first treatment and any side effects and how to deal with them. This is such unknown territory to us.
I stayed until his folks came to visit at 3pm and then came home to sort the kids out. We had made arrangements that Jimmy's folks and myself and all the kids would go through in two separate cars for the 7pm visit. Having so many children does pose a problem in high care because you are only allowed two visitors at a time so they did it on rotation and I waited in the passage with the ones waiting their turn. At 8pm Jimmy's folks left with the kids and then I stayed for an hour.
And so far....no nausea or diarrhoea. Lets hold thumbs.
Thank you Cheryl, for driving in the peak morning traffic from Paarl to catch me at home before I left for the hospital armed with frozen meals for the freezer. Michelle, thanks for helping out with Loren today at such short notice. I would also like to say thank you to my brother Stan who, in the last week, has taken charge of all things Brush Works related. To my parents (who still work) and were due to leave for a well deserved week's break this afternoon and wanted to cancel things to come and help, please don't worry, I promise I will phone you when I need you. And as I say each day to you all, thank you for your inspirational messages, you will never know how much these mean to us.
Life is an opportunity, benefit from it
Life is beauty, admire it
Life is a dream, realise it
Life is a challenge, meet it
Life is a duty, complete it
Life is a game, play it
Life is a promise, fulfil it
Life is a sorrow, overcome it
Life is a song, sing it
Life is a struggle, accept it
Life is a tragedy, confront it
Life is an adventure, dare it
Life is luck, make it
Life is life, fight for it
Mother Teresa
2014/05/08
Thursday, 8th May
Just got home from the hospital and so happy to be able to tell you all that Jimmy is looking MUCH better.
They have put railings up on the sides of his bed so that he can hold on to these when he needs to shift position, which is working wonders. I gave him a facecloth bath with a nice, warm, fluffy facecloth and he brushed his teeth. I'm sure he feels like a new man now.
Prof Novitzky has a doctor that works for him. He does the morning round and then she does two more during the day. I had a long chat to her about the Bone Marrow Biopsy results but not going to go into details now. (Will leave this for when he is home and I have more time). Basically we need to 'not expect anything good or bad' as everyone reacts differently to the chemo and then there will be little things sent to test us along the way, like the Pneumonia that he has now.
Now that he has been admitted they have also realised just how much pain he has been in. I think it's 12 or 13 weeks already, but definitely worse in the last two. Tomorrow they are sending some other department in to measure him up for a back brace and they going to sort out the pain meds so that he can function once he comes home. The back brace will also help as she explained that there is nothing they can do about the fractured vertebra until he is in remission. Oh...chemo has also been increased from 4 cycles to 6.
And lastly, the best news is that when I gave Jimmy his phone tonight (an iphone which is just beyond my logical use and I managed to lock the sim) there was a message from the medical aid this afternoon to say that the authorisation for the treatment has gone through. We are hoping this will start on Monday.
And the garage door has been fixed yay!
Thank you Rohan and Patsy for the lovely dinner and coming out in the cold, wet weather when you are both sick to drop it off. And again, thank you for all your phone calls, love, prayers and inspirational messages. Sorry if I have missed some of the calls and haven't phoned back. It's a busy day at the moment and my poor girls see me in shifts.
Jimmy and I had a chat tonight and we said that we are going to kick this thing together!! Love you so much my angel...
PS. I made him pull the sheet up because I don't want his secretaries to see his sexy chest ;)
They have put railings up on the sides of his bed so that he can hold on to these when he needs to shift position, which is working wonders. I gave him a facecloth bath with a nice, warm, fluffy facecloth and he brushed his teeth. I'm sure he feels like a new man now.
Prof Novitzky has a doctor that works for him. He does the morning round and then she does two more during the day. I had a long chat to her about the Bone Marrow Biopsy results but not going to go into details now. (Will leave this for when he is home and I have more time). Basically we need to 'not expect anything good or bad' as everyone reacts differently to the chemo and then there will be little things sent to test us along the way, like the Pneumonia that he has now.
Now that he has been admitted they have also realised just how much pain he has been in. I think it's 12 or 13 weeks already, but definitely worse in the last two. Tomorrow they are sending some other department in to measure him up for a back brace and they going to sort out the pain meds so that he can function once he comes home. The back brace will also help as she explained that there is nothing they can do about the fractured vertebra until he is in remission. Oh...chemo has also been increased from 4 cycles to 6.
And lastly, the best news is that when I gave Jimmy his phone tonight (an iphone which is just beyond my logical use and I managed to lock the sim) there was a message from the medical aid this afternoon to say that the authorisation for the treatment has gone through. We are hoping this will start on Monday.
And the garage door has been fixed yay!
Thank you Rohan and Patsy for the lovely dinner and coming out in the cold, wet weather when you are both sick to drop it off. And again, thank you for all your phone calls, love, prayers and inspirational messages. Sorry if I have missed some of the calls and haven't phoned back. It's a busy day at the moment and my poor girls see me in shifts.
Jimmy and I had a chat tonight and we said that we are going to kick this thing together!! Love you so much my angel...
PS. I made him pull the sheet up because I don't want his secretaries to see his sexy chest ;)
2014/05/07
Wednesday, 7th May
I'm logging in early today because we need your prayers...
Another horrific night. Between us we have had mere hours of sleep. Today has to be Jimmy's worst day yet. He is in so much pain that he can't even move. I upped his painkillers to 4 hourly instead of 6 hourly but the wheels came off today. I enlisted the help of our neighbour who is a GP and he gave me a script for Morphine patches. He explained that these were better than an injection as once the effects wear off in 4 hours we will be right back where we started. He also said to give Jimmy half a Trepiline tablet to take the edge off and said that the Morphine would also help with suppressing his cough. Ewen went down to the pharmacy to get this meds and by the time he came home Jimmy was fast asleep in his chair so we decided to leave him to sleep a bit.
Once he woke up I asked him if he could try move to the side so I could put the patch on his hip. This was absolutely impossible as he can't move at all today without going into spasm. He is also complaining that he can't breath properly. I don't know if this is due to anxiety, the phlegm from his cold or because he has broken a rib as his chest is very sore. The more pain he is in, the more withdrawn he becomes. He was trying to move on his chair and I asked him if I can help, was he wanting to get more comfortable or get up? He just told me to stop talking. I have never felt so alone and pathetically incapable of helping him. I asked him if he wanted me to take him to hospital but he said he doesn't know what he wants. Almost as if there was an angel watching over us, Michelle phoned to find out if we were home as Stan had just been to check on our guys (we working today) and they were down the road.
Michelle made tea and Stan helped Jimmy get up and go to the loo. I asked Stan to please put the morphine patch on while they were in the bathroom. Michelle took me on the veranda and we left Stan with Jimmy. She could hear that Jimmy was talking to Stan. Stan got Jimmy settled back, comfortably in his chair after another round of medicine. When I walked them to the car Stan explained that I mustn't take it personally. He said that Jimmy is in so much pain that he doesn't know what to do and he doesn't want me to know and this is why he is pushing me away.
He has since had another snooze in his chair. When I asked him if he wanted a cup of tea he just shook his head and pointed to his chest. It is so sore now that he can't even whisper. It has been a few hours since we put the morphine patch on but I don't even know if it is having any effect.
I'm doing today's blog in bits. I have just taken his temperature as he feels warm and it is 39. This was at 5pm.
It is now 11.15pm and I have just got home from the hospital. I phoned to tell them that I was concerned about his temperature and the receptionist phoned Prof who said he must immediately be addmitted to high care. So that is where things stand now. They have got him on oxygen as well as a drip with some strong pain meds and some anti-biotics. They have also already done chest xrays. Prof will be there in the morning and then I will find out what is happening. His bed is right next to the sister's desk so they keeping an eye on him. She did tell me that he would definitely be in high care for a few days.
Thanks to Stan & Michelle and Clive & Maureen for your help today and helping out with Loren and Emma, taking them home with you and getting them to school in the morning.xx
Another horrific night. Between us we have had mere hours of sleep. Today has to be Jimmy's worst day yet. He is in so much pain that he can't even move. I upped his painkillers to 4 hourly instead of 6 hourly but the wheels came off today. I enlisted the help of our neighbour who is a GP and he gave me a script for Morphine patches. He explained that these were better than an injection as once the effects wear off in 4 hours we will be right back where we started. He also said to give Jimmy half a Trepiline tablet to take the edge off and said that the Morphine would also help with suppressing his cough. Ewen went down to the pharmacy to get this meds and by the time he came home Jimmy was fast asleep in his chair so we decided to leave him to sleep a bit.
Once he woke up I asked him if he could try move to the side so I could put the patch on his hip. This was absolutely impossible as he can't move at all today without going into spasm. He is also complaining that he can't breath properly. I don't know if this is due to anxiety, the phlegm from his cold or because he has broken a rib as his chest is very sore. The more pain he is in, the more withdrawn he becomes. He was trying to move on his chair and I asked him if I can help, was he wanting to get more comfortable or get up? He just told me to stop talking. I have never felt so alone and pathetically incapable of helping him. I asked him if he wanted me to take him to hospital but he said he doesn't know what he wants. Almost as if there was an angel watching over us, Michelle phoned to find out if we were home as Stan had just been to check on our guys (we working today) and they were down the road.
Michelle made tea and Stan helped Jimmy get up and go to the loo. I asked Stan to please put the morphine patch on while they were in the bathroom. Michelle took me on the veranda and we left Stan with Jimmy. She could hear that Jimmy was talking to Stan. Stan got Jimmy settled back, comfortably in his chair after another round of medicine. When I walked them to the car Stan explained that I mustn't take it personally. He said that Jimmy is in so much pain that he doesn't know what to do and he doesn't want me to know and this is why he is pushing me away.
He has since had another snooze in his chair. When I asked him if he wanted a cup of tea he just shook his head and pointed to his chest. It is so sore now that he can't even whisper. It has been a few hours since we put the morphine patch on but I don't even know if it is having any effect.
I'm doing today's blog in bits. I have just taken his temperature as he feels warm and it is 39. This was at 5pm.
It is now 11.15pm and I have just got home from the hospital. I phoned to tell them that I was concerned about his temperature and the receptionist phoned Prof who said he must immediately be addmitted to high care. So that is where things stand now. They have got him on oxygen as well as a drip with some strong pain meds and some anti-biotics. They have also already done chest xrays. Prof will be there in the morning and then I will find out what is happening. His bed is right next to the sister's desk so they keeping an eye on him. She did tell me that he would definitely be in high care for a few days.
Thanks to Stan & Michelle and Clive & Maureen for your help today and helping out with Loren and Emma, taking them home with you and getting them to school in the morning.xx
2014/05/06
Tuesday, 6th May
What a day of being at the mercy of other people!
I phoned the Haematology and Chemotherapy Clinic first thing this morning to tell them that Jimmy's painkillers are going to run out today. I have also been doing a bit of reading up on Multiple Myeloma and have come to understand that the pain experienced from lesions and/or fractures needs to be controlled so that it is manageable. Jimmy's pain is definitely not manageable so I asked them to please prescribe something stronger. I also explained that he has a cold with a cough and each time he coughs he wants to climb the walls in pain. The script that came through was for exactly the same medication as before and nothing for his cold.
The garage door people are only coming on Thursday to repair the springs. Do they have any idea how heavy our solid wood, double garage door is to open manually?
Oh well, no use dwelling on the negative. I popped down to the pharmacy to pick of the meds and they gave me something to suppress Jimmy's cough as well as a gel to rub on his gums as his mouth is full of sores. I also bought him 3 more pairs of tracksuit pants as his are way too big now.
Jimmy has been a bit down today. He is in allot of pain and I think he is just gatvol of a sore back, sores in his mouth, sore ribs and the constant waiting for treatment to start. He had a really bad night last night, we didn't go to sleep till the early hours of this morning.
We are looking forward to making our mark tomorrow and voting for a better South Africa. We even have a wheelchair so that a long queue won't be a problem and this year we have 3 of our children who are old enough to vote! I remember voting in 1994, standing in the queue with Megan as a baby in her pram.....and now she is 21.
I phoned the Haematology and Chemotherapy Clinic first thing this morning to tell them that Jimmy's painkillers are going to run out today. I have also been doing a bit of reading up on Multiple Myeloma and have come to understand that the pain experienced from lesions and/or fractures needs to be controlled so that it is manageable. Jimmy's pain is definitely not manageable so I asked them to please prescribe something stronger. I also explained that he has a cold with a cough and each time he coughs he wants to climb the walls in pain. The script that came through was for exactly the same medication as before and nothing for his cold.
The garage door people are only coming on Thursday to repair the springs. Do they have any idea how heavy our solid wood, double garage door is to open manually?
Oh well, no use dwelling on the negative. I popped down to the pharmacy to pick of the meds and they gave me something to suppress Jimmy's cough as well as a gel to rub on his gums as his mouth is full of sores. I also bought him 3 more pairs of tracksuit pants as his are way too big now.
Jimmy has been a bit down today. He is in allot of pain and I think he is just gatvol of a sore back, sores in his mouth, sore ribs and the constant waiting for treatment to start. He had a really bad night last night, we didn't go to sleep till the early hours of this morning.
We are looking forward to making our mark tomorrow and voting for a better South Africa. We even have a wheelchair so that a long queue won't be a problem and this year we have 3 of our children who are old enough to vote! I remember voting in 1994, standing in the queue with Megan as a baby in her pram.....and now she is 21.
2014/05/05
Monday, 5th May
We spent a lazy day at home yesterday and only got up at 10am. I devoured all the Easter eggs I had left and felt quite green. Although Jimmy thoroughly enjoyed going to the Box to watch the rugby on Saturday, we was bushed yesterday and his back took a bit of strain. Our friends Antony and Kathi popped in on their way home from a weekend away. We had a lovely surprise from RAGA (Raymond Ackerman Golf Academy); Carel popped in to drop off a lovely hamper with some delicious treats and a card from Pete, himself and all the boys and girls who each personally signed a well-wish for Jimmy. Needless to say, Jimmy had biltong and cashew nuts for breakfast this morning :)
Jimmy's back has felt a bit better today but he has been a bit pale and this morning he said he felt like he was getting a cold. I have been dosing him up on Corenza C but he has started coughing this evening. Of course he is in agony each time he does. I am just so worried that he will break a rib, which Prof warned us about. Due to the delay in getting his treatment authorised we have not seen Prof again and the result now is that tomorrow he takes the last of his painkillers too.
The good news is that we were copied on the email that was sent to the medical aid with all the information they need to authorise the treatment. The medical aid reckon it takes 2 to 3 days to authorise so not sure if we will start chemo this week but at least things a moving. I'll have to phone Prof tomorrow to organise another script and find out what to do about his cold. I am wondering if Jimmy will have to go straight onto an anti-biotic due to his low immunity?
Pietie, one of Jimmy's staff from Komatsu, came to visit today. Baie dankie Pietie vir die kuier. Billy very kindly offered to make the hand rail for our staircase which leads up from the garage into the house as Jimmy is finding climbing the stairs quite difficult. We finished building our house almost 8 years ago and this is one of those things that we just never got around to doing. This evening, just after 5pm, Billy and Rohan arrived here to install the rails and all I had to do was make them a cup of tea! And while I am on the subject of repairs, Jimmy's dad fixed the down lights above the dining room table last week. They haven't worked for close to a year but with the sun setting earlier now we are eating in very dim light. A big thanks to all these handy men in my life and to their lovely wives for lending them to us. Lets hope the garage door fixer man can work wonders with the garage door motor which stopped working yesterday afternoon!
Jimmy's back has felt a bit better today but he has been a bit pale and this morning he said he felt like he was getting a cold. I have been dosing him up on Corenza C but he has started coughing this evening. Of course he is in agony each time he does. I am just so worried that he will break a rib, which Prof warned us about. Due to the delay in getting his treatment authorised we have not seen Prof again and the result now is that tomorrow he takes the last of his painkillers too.
The good news is that we were copied on the email that was sent to the medical aid with all the information they need to authorise the treatment. The medical aid reckon it takes 2 to 3 days to authorise so not sure if we will start chemo this week but at least things a moving. I'll have to phone Prof tomorrow to organise another script and find out what to do about his cold. I am wondering if Jimmy will have to go straight onto an anti-biotic due to his low immunity?
Pietie, one of Jimmy's staff from Komatsu, came to visit today. Baie dankie Pietie vir die kuier. Billy very kindly offered to make the hand rail for our staircase which leads up from the garage into the house as Jimmy is finding climbing the stairs quite difficult. We finished building our house almost 8 years ago and this is one of those things that we just never got around to doing. This evening, just after 5pm, Billy and Rohan arrived here to install the rails and all I had to do was make them a cup of tea! And while I am on the subject of repairs, Jimmy's dad fixed the down lights above the dining room table last week. They haven't worked for close to a year but with the sun setting earlier now we are eating in very dim light. A big thanks to all these handy men in my life and to their lovely wives for lending them to us. Lets hope the garage door fixer man can work wonders with the garage door motor which stopped working yesterday afternoon!
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| Billy, Rohan and Ewen all very busy fixing things |
2014/05/03
Saturday, 3rd May
Today was a good day!
Jimmy had a good night last night and slept well. This really does seem to make a difference to how he copes during the day.
We had a visit from Jay Jay this morning which was lovely and so was the chocolate mousse cake he brought along. And to think he was up at 3am baking it ;)
Jimmy decided that he wanted to go to Newlands to watch the Stormers - Hurricanes game in the box. I wasn't very happy about this, thinking about all the negative things like getting bumped by the crowd as we walk in the entrance (which is always very crowded), getting jolted in the lift and the possibility of someone in the box having a cold or flu and Jimmy catching this from them and coughing and breaking a rib! But I also dearly understand that he feels extremely couped up at home and wants to get out there. This is also a good opportunity to see some of the guys from work again and some of their customers too, so I decided not to say anyting about my worries. Maybe I am becoming too much of a worry pot.
As it turned out, all went very well. We got to Newlands a bit earlier than usual to beat the crowd and the lift didn't jolt. And best of all.....THE STORMERS WON!!
You will notice that I have added a new gadget on the left hand side next to my posts. It's called pages. Home is where the normal posts will be and any additional pages I add to my blog will get listed below home. I added one tonight called Multiple Myeloma - What is it all about. This is a definition in layman's terms. You need to click on the title to open the page and when you are done, you just click home again to get back to the normal posts page.
Jimmy had a good night last night and slept well. This really does seem to make a difference to how he copes during the day.
We had a visit from Jay Jay this morning which was lovely and so was the chocolate mousse cake he brought along. And to think he was up at 3am baking it ;)
Jimmy decided that he wanted to go to Newlands to watch the Stormers - Hurricanes game in the box. I wasn't very happy about this, thinking about all the negative things like getting bumped by the crowd as we walk in the entrance (which is always very crowded), getting jolted in the lift and the possibility of someone in the box having a cold or flu and Jimmy catching this from them and coughing and breaking a rib! But I also dearly understand that he feels extremely couped up at home and wants to get out there. This is also a good opportunity to see some of the guys from work again and some of their customers too, so I decided not to say anyting about my worries. Maybe I am becoming too much of a worry pot.
As it turned out, all went very well. We got to Newlands a bit earlier than usual to beat the crowd and the lift didn't jolt. And best of all.....THE STORMERS WON!!
You will notice that I have added a new gadget on the left hand side next to my posts. It's called pages. Home is where the normal posts will be and any additional pages I add to my blog will get listed below home. I added one tonight called Multiple Myeloma - What is it all about. This is a definition in layman's terms. You need to click on the title to open the page and when you are done, you just click home again to get back to the normal posts page.
2014/05/02
Friday, 2nd May 2014
Are they really magic pink pills or is it just coincidence that Jimmy's pain wasn't as bad when he was taking them? He had a rough evening and night last night and when I asked him on a ratio of 1 to 10 how the pain was compared to his last bout of bad pain, he said 55. This poor man. I look forward to when his pain is being managed better but until then it will just be trial and error.
Yesterday was the 1st of May and quite a significant day as Jimmy's promotion was official. He has been promoted from Branch Manager to Regional Manager. This has been in the pipeline for a few months. Quite fitting that we bought him that luxurious lazyboy yesterday, a chair fit for 'the big boss' . Well done my darling. Your hard work and commitment make you very deserving.
I had a bit of a wobbly this morning. I woke up with an anxious, knot-like feeling in my stomach and it just wouldn't go away. It felt like I couldn't get enough air into my diaphragm and the more I realised that today I wasn't coping very well, the worse it got. Almost like a panic attack. Thank goodness for wonderful friends. I told Jimmy I was taking the dvd's back and popping in at Maureen's for coffee, with a brave smile on my face. Of course the wheels fell off completely and I had a good cry. We went down to the pharmacy to beg for some more magic pink pills without a script and I got some Relicalm. And then back to Maureen's for coffee and a good chat. Thank you my friend.
I would like to share a quote that Sandy sent me today:
Life ebbs and flows. Every once in a while the ebb outweighs the flow but mostly the flow has got your back. (What's up, Flo! You got me?) A bump in the road is not the end of the world. Just wear your seatbelt so your head doesn't hit the roof too hard. And if it does, bandage it up and move on. It will heal - Jennifer Pastiloff.
Yesterday was the 1st of May and quite a significant day as Jimmy's promotion was official. He has been promoted from Branch Manager to Regional Manager. This has been in the pipeline for a few months. Quite fitting that we bought him that luxurious lazyboy yesterday, a chair fit for 'the big boss' . Well done my darling. Your hard work and commitment make you very deserving.
I had a bit of a wobbly this morning. I woke up with an anxious, knot-like feeling in my stomach and it just wouldn't go away. It felt like I couldn't get enough air into my diaphragm and the more I realised that today I wasn't coping very well, the worse it got. Almost like a panic attack. Thank goodness for wonderful friends. I told Jimmy I was taking the dvd's back and popping in at Maureen's for coffee, with a brave smile on my face. Of course the wheels fell off completely and I had a good cry. We went down to the pharmacy to beg for some more magic pink pills without a script and I got some Relicalm. And then back to Maureen's for coffee and a good chat. Thank you my friend.
I would like to share a quote that Sandy sent me today:
Life ebbs and flows. Every once in a while the ebb outweighs the flow but mostly the flow has got your back. (What's up, Flo! You got me?) A bump in the road is not the end of the world. Just wear your seatbelt so your head doesn't hit the roof too hard. And if it does, bandage it up and move on. It will heal - Jennifer Pastiloff.