Oh the waiting for results is so boring and we feel like we are living in limbo...
Jimmy is doing very well. His constantly itchy, red and mucky eyes are much better, as is his stye which
has now cleared up and you will all be happy to know that since Monday he has been going for a walk around the block each morning.
I can't believe that Jimmy has been home for three and half months already. When I think of him actually being here it feels like forever. Him getting up and going to work is something of a distant memory but when I think about his cancer diagnoses it still feels like a week or two ago. The good news is that I haven't hit him over the head with a frying pan yet! How life has changed for the two of us.
In my last blog I mentioned FHHS Derby Day again Bergvliet. Whew, and was the weather cruel us to. All games except 1st team games, some U16 games and chess were cancelled for the Friday night and Saturday morning. The kids all played in the pouring rain and it was bitterly cold too. The rugby field was so wet and muddy that after the 1st team game the boys all ran and did a slip and slide on their bellies through the mud. And to their coach's dismay, he was dragged through the mud on his belly by his arms. What fun was had by all and a big congratulations to FHHS on their winning results.
I look forward to our next appointment with Prof Novitzky on Monday evening and hope that I will have some more to report on but more than anything, it will be good to be able to move forward.
Thank you Steve for your visit on Tuesday. Our thoughts are with a friend whose son is not very well. We are thinking of you all and pray that you are given the courage to face this obstacle in a positive way and adapt to your new situation without too much stress. And then on a very sad note, our thoughts and condolences are with my Uncle and family who had to make a very brave decision to turn my Aunt's life support off yesterday morning.
2014/07/31
2014/07/25
Friday, 25th July
Good morning to you all from a wet, cold and windy Cape Town.
I don't have too much to report on....Jimmy is doing very well. We got his blood counts back which they took on Tuesday when he had his bone marrow biopsy. The numbers are all coming up slowly but surely, the white blood count being 2.6. Still not out of danger but we are seeing some progress. It seems the rest period after chemo is doing its job.
We are in for a very wintry weekend down here in the Cape. It is the Fish Hoek High School Derby Day tomorrow against Bergvliet High School, one of our sporting highlights on the annual calendar, which dates back to when Jimmy and I were both at Fish Hoek High School. Brad and Loren are both playing their 1st team games tonight at Bergvliet on the astro and while I write, and am hoping that this rain continues until at least 1pm so that with any luck tonight's matches will be postponed. It is bitterly cold standing in the rain watching them with toes that you can't even feel in your boots. With any luck, if it postponed, the weather will also be better next time so that Jimmy can also come watch. All the other sports fixtures take place tomorrow during the day at Fish Hoek High School, Shannon's 2nd team hockey game included. It is compulsory for all 1st team players to support each other so tonight the rugby boys come through to watch the hockey and tomorrow we'll support the 1st team rugby boys.
Jimmy has just been on the phone with the chemo clinic to remind them that he is due for his next Zobone (calcium) injection on Monday the 4th so Olivia very kindly brought his 8th of August appointment forward to the 4th. This means that we will get the results back from the bone marrow biopsy a bit earlier. Yay! Waiting for results is the pits.
On Wednesday night my girls were here for the night. Emma had an accident and fell down the staircase. Poor thing....she has 3 big bruises down her right leg and the edge of the step cut the top of her left foot on the arch and the vein is also very inflamed. I haven't spoken to Megan for the last couple of days but getting lots of messages and photos. She is having an absolute ball. In a week she has seen Santorini, Greece; Civitavecchia, Italy; Livorno, Italy; Cannes, France; Valletta, Malta; Messina, Italy and tomorrow they dock in Venice, Italy at 8am. The ship depart at 6pm for the start of the next cruise.
I am really looking forward to Saturday afternoon when I get to catch up with my friend Kim who lives in Botswana. Kim was my best friend at school when I attended Hurlyvale Primary School. I have only seen her once, for an hour, since we moved from Gauteng in 1981.
Thanks Rohan and Patsy for your visit on Tuesday evening, it's always so good to catch up with you. Our thoughts are with Colleen, who cooked all those fabulous meals for us. She had an operation on her ankle last week and we hope you have a very good recovery.
Thank you for all your messages on the blog, it means allot to us and Jimmy loves it when I read them to him.
I don't have too much to report on....Jimmy is doing very well. We got his blood counts back which they took on Tuesday when he had his bone marrow biopsy. The numbers are all coming up slowly but surely, the white blood count being 2.6. Still not out of danger but we are seeing some progress. It seems the rest period after chemo is doing its job.
We are in for a very wintry weekend down here in the Cape. It is the Fish Hoek High School Derby Day tomorrow against Bergvliet High School, one of our sporting highlights on the annual calendar, which dates back to when Jimmy and I were both at Fish Hoek High School. Brad and Loren are both playing their 1st team games tonight at Bergvliet on the astro and while I write, and am hoping that this rain continues until at least 1pm so that with any luck tonight's matches will be postponed. It is bitterly cold standing in the rain watching them with toes that you can't even feel in your boots. With any luck, if it postponed, the weather will also be better next time so that Jimmy can also come watch. All the other sports fixtures take place tomorrow during the day at Fish Hoek High School, Shannon's 2nd team hockey game included. It is compulsory for all 1st team players to support each other so tonight the rugby boys come through to watch the hockey and tomorrow we'll support the 1st team rugby boys.
Jimmy has just been on the phone with the chemo clinic to remind them that he is due for his next Zobone (calcium) injection on Monday the 4th so Olivia very kindly brought his 8th of August appointment forward to the 4th. This means that we will get the results back from the bone marrow biopsy a bit earlier. Yay! Waiting for results is the pits.
On Wednesday night my girls were here for the night. Emma had an accident and fell down the staircase. Poor thing....she has 3 big bruises down her right leg and the edge of the step cut the top of her left foot on the arch and the vein is also very inflamed. I haven't spoken to Megan for the last couple of days but getting lots of messages and photos. She is having an absolute ball. In a week she has seen Santorini, Greece; Civitavecchia, Italy; Livorno, Italy; Cannes, France; Valletta, Malta; Messina, Italy and tomorrow they dock in Venice, Italy at 8am. The ship depart at 6pm for the start of the next cruise.
I am really looking forward to Saturday afternoon when I get to catch up with my friend Kim who lives in Botswana. Kim was my best friend at school when I attended Hurlyvale Primary School. I have only seen her once, for an hour, since we moved from Gauteng in 1981.
Thanks Rohan and Patsy for your visit on Tuesday evening, it's always so good to catch up with you. Our thoughts are with Colleen, who cooked all those fabulous meals for us. She had an operation on her ankle last week and we hope you have a very good recovery.
Thank you for all your messages on the blog, it means allot to us and Jimmy loves it when I read them to him.
2014/07/22
Tuesday, 22nd July
And so life goes on.... the new term has started and the children have gone back to their 'other' homes. Megan is sailing the seas visiting Livorno, Italy on Sunday and Cannes, France yesterday.
Jimmy had his second bone marrow biopsy today. It went very well with only a small amount of pain. Prof had to go in three times and go a bit deeper each time as he battled to get a good sample. They took bloods again and are starting to find it difficult to find veins now too. Jimmy's next appointment is on the 8th of August, by which time these results will be back and we will then discuss further the arrangements and procedure for the stem cell transplant.
I must admit that I have been dwelling on my thoughts a bit since we got the M protein results. I believe I was actually in a bit of shock that the reading had not dropped any further in the last month. I see such an improvement in Jimmy over the last two months that I could not believe it had not improved any more. It was such a huge disappointment for me. I went from shock to disbelief to finding myself thinking 'I should have known, things have been too good to be true'. To add to this, it was a reality check being told that I am experiencing a huge amount of stress and that my blood pressure is high. I believed I was invincible and for me it has just been go, go, go. But thankfully I have the ever positive Jimmy by my side to pull me out of the doldrums. It turns out it is a relief to know that I am Jimmy's 24/7 carer but he still needs to care for me.
So, on Sunday evening I gave myself a good talking to. I have to look after myself in order to be able to look after Jimmy. I am definitely not invincible and it's okay to be human. How many times, I cannot tell you, I have told myself that I am just setting myself up for disappointment by always expecting things to turn out perfectly. But I realise that unless I am going to walk around being negative to protect myself, this is all part of the journey. I felt so good on Monday morning when I woke up. I spent the day catching up on all my paperwork, doing filing and getting ready for another financial year end (I am lucky enough to have two of these a year with to my two businesses), getting the work side of my life in order and by Monday night I felt a huge sense of achievement.
Today we met a couple at the chemo clinic whom I would say are in their late 60's or early 70's. The gentleman was having his annual bone marrow biopsy to confirm that he is still in remission. We travelled down to the parking area in the lift together and I asked him how long he has been in remission. (We do not know what kind of cancer he has.) He had a stem cell transplant four years ago and has been in remission for two and a half years. His wife was so friendly and caring and told us that we have a difficult road ahead of us but everything will be okay and we must be positive. It wasn't until I got home that I realised that if he had a stem cell transplant four years ago and has been in remission for two and half years, this means he was not in remission before or after his stem cell transplant. This makes me feel so much better and the first thought that came into my head was that we are not failing and suddenly it hit me....it has nothing to do with failing. We are on a journey.....and it is impossible to fail a journey.
Thank you Kate for surprising me and joining me in a very daunting crochet lesson on Saturday morning. Hopefully at some stage I will be able to post some photos of a patchwork blanket. And to Guy (Hishin) for your visit on Sunday morning, I hope my morning hair will remain a secret.
My blessing today is my darling Jimmy who leaned over this afternoon, squeezed my hand and told me he loves me. I love you too, more than you will ever know.
Jimmy had his second bone marrow biopsy today. It went very well with only a small amount of pain. Prof had to go in three times and go a bit deeper each time as he battled to get a good sample. They took bloods again and are starting to find it difficult to find veins now too. Jimmy's next appointment is on the 8th of August, by which time these results will be back and we will then discuss further the arrangements and procedure for the stem cell transplant.
I must admit that I have been dwelling on my thoughts a bit since we got the M protein results. I believe I was actually in a bit of shock that the reading had not dropped any further in the last month. I see such an improvement in Jimmy over the last two months that I could not believe it had not improved any more. It was such a huge disappointment for me. I went from shock to disbelief to finding myself thinking 'I should have known, things have been too good to be true'. To add to this, it was a reality check being told that I am experiencing a huge amount of stress and that my blood pressure is high. I believed I was invincible and for me it has just been go, go, go. But thankfully I have the ever positive Jimmy by my side to pull me out of the doldrums. It turns out it is a relief to know that I am Jimmy's 24/7 carer but he still needs to care for me.
So, on Sunday evening I gave myself a good talking to. I have to look after myself in order to be able to look after Jimmy. I am definitely not invincible and it's okay to be human. How many times, I cannot tell you, I have told myself that I am just setting myself up for disappointment by always expecting things to turn out perfectly. But I realise that unless I am going to walk around being negative to protect myself, this is all part of the journey. I felt so good on Monday morning when I woke up. I spent the day catching up on all my paperwork, doing filing and getting ready for another financial year end (I am lucky enough to have two of these a year with to my two businesses), getting the work side of my life in order and by Monday night I felt a huge sense of achievement.
Today we met a couple at the chemo clinic whom I would say are in their late 60's or early 70's. The gentleman was having his annual bone marrow biopsy to confirm that he is still in remission. We travelled down to the parking area in the lift together and I asked him how long he has been in remission. (We do not know what kind of cancer he has.) He had a stem cell transplant four years ago and has been in remission for two and a half years. His wife was so friendly and caring and told us that we have a difficult road ahead of us but everything will be okay and we must be positive. It wasn't until I got home that I realised that if he had a stem cell transplant four years ago and has been in remission for two and half years, this means he was not in remission before or after his stem cell transplant. This makes me feel so much better and the first thought that came into my head was that we are not failing and suddenly it hit me....it has nothing to do with failing. We are on a journey.....and it is impossible to fail a journey.
Thank you Kate for surprising me and joining me in a very daunting crochet lesson on Saturday morning. Hopefully at some stage I will be able to post some photos of a patchwork blanket. And to Guy (Hishin) for your visit on Sunday morning, I hope my morning hair will remain a secret.
My blessing today is my darling Jimmy who leaned over this afternoon, squeezed my hand and told me he loves me. I love you too, more than you will ever know.
2014/07/17
Thursday, 17th July
So.....we have good news and not so good news so I think I'll start with the good news.
Megan arrived safely in Santorini, Greece yesterday morning. She phoned me to let me know she was booked into her room at the Kalma Hotel and was exhausted. She has no experience of travelling alone so I think it was a rude awakening, she almost missed one of her flights. She had a good sleep and then went exploring and had something to eat and basically went back to the hotel to sleep some more. I was telling her how lucky she is, as it is less than 24 hours since I have seen her and she already knows what a Greek Island looks like. She said it is absolutely beautiful and could not stop smiling in the taxi on route to the hotel. She says it looks exactly like the pictures of Greece. This morning she phoned at 7:30 am to say the taxi was collecting her in 20 minutes to drop her at the NCL Jade port. She sounded very refreshed and excited. I asked her to try and let me know once she is on the ship, even if it was just a quick text which she did about an hour after embarking. "MOM!!!!! I'm here x". From this 'tone' I know she is very impressed and happy to be there.
We had our end-of-4th-cycle-chemo appointment with Prof Novitzky yesterday evening and unfortunately the news was a bit disappointing. In the last month Jimmy's M protein level has not come down any further, it is still at 21 grams per litre of plasma. Prof's exact words were 'I do not believe in flogging a dead horse', so he has suggested that Jimmy come off chemo for now. He basically explained that Jimmy has now hit a plateau but unfortunately the protein level is still very high. He was hoping it would come down to 4 or 5. Jimmy will have another bone marrow biopsy done on Tuesday and this will tell Prof what the cancer burden is now,compared to the 36% that Jimmy started with. And then we will start preparing for the stem cell transplant. Once this is done, Jimmy will probably have some more chemo cycles again but due to the high M protein it will be intravenous and more than likely Velcade, instead of oral chemo tablets. He explained that it is quite common for the chemo to work better again post stem cell transplant. Prof says it is not all doom and gloom but he is very disappointed the M protein did not come down any further as the higher this number is prior to stem cell transplant, the shorter remission will be (once Jimmy goes into remission).
And then just to add to our woes....I woke up yesterday morning with a knot in my back next to my shoulder blade and by this morning I could not use my left arm or turn my head to the left or look up. Thankfully I had my appointment with Dr Gotlieb this morning (rheumatologist) and I was hoping he would be able to give me an injection for the pain while I was there. It turns out that I am a 'walking spring'. He says this is just a culmination of all the stress I have been through with Jimmy and now Megan leaving and travelling on her own. I even have high blood pressure, which I have never had before!
Oh well....on the positive side, post Tuesday's bone marrow biopsy, we can look forward to at least a 2 week break from chemo and driving through to UCTPAH while Jimmy builds up his blood counts. I'll have to do some exploring of my own, not in Santorini unfortunately, and see if we can go away for a few days at the end of the month.
Megan arrived safely in Santorini, Greece yesterday morning. She phoned me to let me know she was booked into her room at the Kalma Hotel and was exhausted. She has no experience of travelling alone so I think it was a rude awakening, she almost missed one of her flights. She had a good sleep and then went exploring and had something to eat and basically went back to the hotel to sleep some more. I was telling her how lucky she is, as it is less than 24 hours since I have seen her and she already knows what a Greek Island looks like. She said it is absolutely beautiful and could not stop smiling in the taxi on route to the hotel. She says it looks exactly like the pictures of Greece. This morning she phoned at 7:30 am to say the taxi was collecting her in 20 minutes to drop her at the NCL Jade port. She sounded very refreshed and excited. I asked her to try and let me know once she is on the ship, even if it was just a quick text which she did about an hour after embarking. "MOM!!!!! I'm here x". From this 'tone' I know she is very impressed and happy to be there.
We had our end-of-4th-cycle-chemo appointment with Prof Novitzky yesterday evening and unfortunately the news was a bit disappointing. In the last month Jimmy's M protein level has not come down any further, it is still at 21 grams per litre of plasma. Prof's exact words were 'I do not believe in flogging a dead horse', so he has suggested that Jimmy come off chemo for now. He basically explained that Jimmy has now hit a plateau but unfortunately the protein level is still very high. He was hoping it would come down to 4 or 5. Jimmy will have another bone marrow biopsy done on Tuesday and this will tell Prof what the cancer burden is now,compared to the 36% that Jimmy started with. And then we will start preparing for the stem cell transplant. Once this is done, Jimmy will probably have some more chemo cycles again but due to the high M protein it will be intravenous and more than likely Velcade, instead of oral chemo tablets. He explained that it is quite common for the chemo to work better again post stem cell transplant. Prof says it is not all doom and gloom but he is very disappointed the M protein did not come down any further as the higher this number is prior to stem cell transplant, the shorter remission will be (once Jimmy goes into remission).
And then just to add to our woes....I woke up yesterday morning with a knot in my back next to my shoulder blade and by this morning I could not use my left arm or turn my head to the left or look up. Thankfully I had my appointment with Dr Gotlieb this morning (rheumatologist) and I was hoping he would be able to give me an injection for the pain while I was there. It turns out that I am a 'walking spring'. He says this is just a culmination of all the stress I have been through with Jimmy and now Megan leaving and travelling on her own. I even have high blood pressure, which I have never had before!
Oh well....on the positive side, post Tuesday's bone marrow biopsy, we can look forward to at least a 2 week break from chemo and driving through to UCTPAH while Jimmy builds up his blood counts. I'll have to do some exploring of my own, not in Santorini unfortunately, and see if we can go away for a few days at the end of the month.
2014/07/15
Tuesday, 15th July
Well...the big day has arrived. Megan left today to go and work for Norwegian Cruise Lines on an 8 month contract on the NCL Jade, she will be sailing the Mediterranean. We had an awesome family dinner at the Quarterdeck Restaurant at Grand West last night. A big thank you to Michelle who took Jimmy to chemo while I stayed home and helped Megan with her last minute packing this morning. Jimmy and Michelle went straight to the airport from chemo and we all met them there. My Mom and Dad also came through from Bredasdorp and met us at the airport so it was a lovely big family send off. I felt so proud watching the aeroplane take off :) One does not realise how amazing technology is until you have a child that is going overseas. She has already messaged me from way up in the sky, quite amazing! She will sleep over in Santorini tomorrow night (one of the Greek Islands) and then join the ship on Thursday morning in the Jade Port. I think once I know she is safely on board I will relax.
As mentioned, Jimmy had chemo today again. This was the last treatment of the 4th cycle. Tomorrow evening we have another appointment with Prof Novitzky where we will find out what his M protein reading was at the end of the third cycle and he will also advise whether he is happy with 4 cycles of chemo or if Jimmy should have another 2 cycles. Jimmy's red blood count and haemoglobin have remained much the same since Friday but his white blood count has dropped even further to 2.4 now. I am glad I did not know this reading this morning because it would have been a very difficult decision to make and leave him at home while we all went to see Megan off. We'll just have to be extra careful that he does not come into contact with anyone with bugs and I will ask Prof tomorrow if he is allowed out etc.
Oh, and I almost forgot, I cut Jimmy's hair this morning. Basically, once he has the first of the big doses of chemo prior to harvesting his stem cells, he is going to lose his hair. The clinic recommended that we shave his head as it's not a very nice experience waking up in the morning with huge clumps of hair on you pillow. So we decided that we might as well do it now. No holes or bald patches either! I'm very impressed with my hidden talent!
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| Bon Voyage Megan....her flight taking off |
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| NCL Jade |
Oh, and I almost forgot, I cut Jimmy's hair this morning. Basically, once he has the first of the big doses of chemo prior to harvesting his stem cells, he is going to lose his hair. The clinic recommended that we shave his head as it's not a very nice experience waking up in the morning with huge clumps of hair on you pillow. So we decided that we might as well do it now. No holes or bald patches either! I'm very impressed with my hidden talent!
2014/07/12
Saturday, 12th July
Jimmy had chemo yesterday as well as the Endoxan. His white blood count is still the same, which is below the accepted range, and his red blood count and haemoglobin have actually dropped even more but they did go ahead and give him the Endoxan. After almost 4 cycles of chemo these levels are now to be expected and this is another reason why he needs a rest and recovery period before he has the stem cell transplant.
On Tuesday Jimmy has the last chemo session of the 4th cycle and then we have an appointment with Prof Novitzky on Wednesday evening to discuss the latest M protein reading, which he will have by then, this being blood results that were taken at the end of the 3rd cycle. Prof Novitzky will decide whether he is happy with the results from 4 cycles or recommend that Jimmy go on and do another 2 cycles prior to stem cell transplant.
Jimmy is feeling very good and everything is going well. The kids and I had tea with the ladies on Friday and Jimmy phoned me to tell me he had driven down to the beach and just had a walk on the beach. I was so cross with him! I blasted him when I got home explaining that there is a difference between taking a slow stroll on the Catwalk, like we did, and walking half the length of the beach and back on soft sea sand. He still doesn't believe me that he was completely out of breath when he phone me. I told him he is lucky that he didn't injure his back anymore and that he will exhaust himself as he hasn't done any exercise since February and walking on soft beach sand in the cold is tough work. Shame, I was so mad that I told him he mustn't ask me to tie his shoe laces if he is well enough to walk on the beach. I do understand his wanting to get out and do something by himself.
The girls are all into Looming now, thanks to Maureen, Sheila and Kate. We had tea, champagne and cake yesterday afternoon in front of a cozy, roaring fire at Maureen's house. They stocked up on wool and looms and the bug has now bitten in this household too. Loren, Shannon and Emma are all busy making snoods. So this morning we all went down to Olive's Menage at Valyland to get some more wool as they have finished their first ball already! Jimmy came with us and from there we went to the Mall to stock up on some more cakes for tomorrow's tea. I think he thoroughly enjoyed the morning bumping into so many people and saying hello to them all. It's also always nice for people to see Jimmy, specially now while he is looking so well. He is totally buggered now and fast asleep in his chair, in front of the TV.
The day is coming closer and closer now that Megan leaves. All that is left to do is pack. She had her last hair appointment this morning and picked up her slacks that needed to be shortened. Tomorrow we are having a farewell family Tea at home and on Monday night, if Jimmy is up to it, we are going out for dinner. Tuesday morning is going to be a huge rush as Jimmy has chemo in the morning and we need to be at the airport at 1:30pm. Whew...my first born is leaving the nest.
On Tuesday Jimmy has the last chemo session of the 4th cycle and then we have an appointment with Prof Novitzky on Wednesday evening to discuss the latest M protein reading, which he will have by then, this being blood results that were taken at the end of the 3rd cycle. Prof Novitzky will decide whether he is happy with the results from 4 cycles or recommend that Jimmy go on and do another 2 cycles prior to stem cell transplant.
Jimmy is feeling very good and everything is going well. The kids and I had tea with the ladies on Friday and Jimmy phoned me to tell me he had driven down to the beach and just had a walk on the beach. I was so cross with him! I blasted him when I got home explaining that there is a difference between taking a slow stroll on the Catwalk, like we did, and walking half the length of the beach and back on soft sea sand. He still doesn't believe me that he was completely out of breath when he phone me. I told him he is lucky that he didn't injure his back anymore and that he will exhaust himself as he hasn't done any exercise since February and walking on soft beach sand in the cold is tough work. Shame, I was so mad that I told him he mustn't ask me to tie his shoe laces if he is well enough to walk on the beach. I do understand his wanting to get out and do something by himself.
The girls are all into Looming now, thanks to Maureen, Sheila and Kate. We had tea, champagne and cake yesterday afternoon in front of a cozy, roaring fire at Maureen's house. They stocked up on wool and looms and the bug has now bitten in this household too. Loren, Shannon and Emma are all busy making snoods. So this morning we all went down to Olive's Menage at Valyland to get some more wool as they have finished their first ball already! Jimmy came with us and from there we went to the Mall to stock up on some more cakes for tomorrow's tea. I think he thoroughly enjoyed the morning bumping into so many people and saying hello to them all. It's also always nice for people to see Jimmy, specially now while he is looking so well. He is totally buggered now and fast asleep in his chair, in front of the TV.
The day is coming closer and closer now that Megan leaves. All that is left to do is pack. She had her last hair appointment this morning and picked up her slacks that needed to be shortened. Tomorrow we are having a farewell family Tea at home and on Monday night, if Jimmy is up to it, we are going out for dinner. Tuesday morning is going to be a huge rush as Jimmy has chemo in the morning and we need to be at the airport at 1:30pm. Whew...my first born is leaving the nest.
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| Dinner on Wednesday night at home, a rare occasion these days when we are all together. |
2014/07/08
Tuesday, 8th July
I'm not going to mention the weather...but boy it's freezing ;)
Jimmy is constantly cold. It almost seems like his body has forgotten how to keep him warm. I have always been the cold one and Jimmy is always warm as toast but this winter he is an ice block. He is wearing thermal vests and we layering big time, has a blanket over his legs most the day and the heater on 24/7 but the man stays cold. Since the wind wasn't blowing yesterday we thought a walk on the Catwalk at Fish Hoek beach would get the juices flowing and warm him up a bit. It was lovely in the sunshine and it definitely warmed us up too. The good news is that tomorrow all our chickens will be here for the next week and a half and I'm sure the love will warm the house up some.
Tuesday today so it was chemo again this morning. Unfortunately Jimmy still could not have the Endoxan as his white blood count is still too low, although it has come up a little so we hoping Friday will be the day. In fact, all his readings have dropped a little, red blood count and haemoglobin, but this is to be expected. It was explained to us right in the beginning that there may have to be rest periods in between treatment to give his body some time to recover. So....we have a very disappointed Mr Smith...who thought he would be able to go watch Saturday's Stormers vs Sharks game at the box.
We are busy getting our ducks in a row for our next big step, this being stem cell transplant. Jimmy will be in isolation for between 3 weeks to a month so I bought him an iPad. I also found a special lap tray with a groove in the back for an iPad to stand up in and an awesome bluetooth keyboard. We feel like techno junkies lately and I say this proudly. I have downloaded word, excel etc on it and he can also access his emails from here. By the time he goes into isolation his virtual office will be up and running.
I had a message from a friend today and to quote him "If you weigh up the amount of energy that the actual cancer treatments takes and the amount of energy spent on worrying about the cancer, don't you wish that the present Vivienne could have advised the devastated Vivienne from months ago?"
This really made me think...what he said is so true. I also know now that even if I had known every little thing there is to know about Multiple Myeloma, I would still not know the outcome, as this is completely different for each person, depending on how they react to the treatments that they receive. There have been many ups and downs on this journey and the downs (thankfully I can count then on one hand) have been heartbreaking but the ups are so positive. In the beginning an up was all that mattered and I would wipe out everything else and revel in this up. But since then I have learned to embrace the downs (knowing that I can be weak in front of my friends), appreciate the ups like nothing before (joyfully bragging to my friends) and calmly take on the next stage, whatever it is. If it were possible for me to take the whole cancer thing out of the equation then I would definitely wish this journey on you all. I always knew that I had a strong marriage and that I love Jimmy very much (except of course the odd occasion that I put him and his golf clubs up for sale on facebook) but this journey has made it all so surreal. We have spent hours talking about stuff we never talked about. We are brave together and talk about the scary things and we laugh and joke about the funny things in life. We lock eyes across a room and even agree to unspoken things. This journey has not broken us and I know nothing can.
On a lighter note....you may even find me caddying for Jimmy if he is ever allowed to play golf again! Did I say that?
My blessing today are my friends.
Jimmy is constantly cold. It almost seems like his body has forgotten how to keep him warm. I have always been the cold one and Jimmy is always warm as toast but this winter he is an ice block. He is wearing thermal vests and we layering big time, has a blanket over his legs most the day and the heater on 24/7 but the man stays cold. Since the wind wasn't blowing yesterday we thought a walk on the Catwalk at Fish Hoek beach would get the juices flowing and warm him up a bit. It was lovely in the sunshine and it definitely warmed us up too. The good news is that tomorrow all our chickens will be here for the next week and a half and I'm sure the love will warm the house up some.
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| View from the Catwalk looking back towards Fish Hoek |
Tuesday today so it was chemo again this morning. Unfortunately Jimmy still could not have the Endoxan as his white blood count is still too low, although it has come up a little so we hoping Friday will be the day. In fact, all his readings have dropped a little, red blood count and haemoglobin, but this is to be expected. It was explained to us right in the beginning that there may have to be rest periods in between treatment to give his body some time to recover. So....we have a very disappointed Mr Smith...who thought he would be able to go watch Saturday's Stormers vs Sharks game at the box.
We are busy getting our ducks in a row for our next big step, this being stem cell transplant. Jimmy will be in isolation for between 3 weeks to a month so I bought him an iPad. I also found a special lap tray with a groove in the back for an iPad to stand up in and an awesome bluetooth keyboard. We feel like techno junkies lately and I say this proudly. I have downloaded word, excel etc on it and he can also access his emails from here. By the time he goes into isolation his virtual office will be up and running.
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| Jimmy working whilst in the chemo clinic today |
This really made me think...what he said is so true. I also know now that even if I had known every little thing there is to know about Multiple Myeloma, I would still not know the outcome, as this is completely different for each person, depending on how they react to the treatments that they receive. There have been many ups and downs on this journey and the downs (thankfully I can count then on one hand) have been heartbreaking but the ups are so positive. In the beginning an up was all that mattered and I would wipe out everything else and revel in this up. But since then I have learned to embrace the downs (knowing that I can be weak in front of my friends), appreciate the ups like nothing before (joyfully bragging to my friends) and calmly take on the next stage, whatever it is. If it were possible for me to take the whole cancer thing out of the equation then I would definitely wish this journey on you all. I always knew that I had a strong marriage and that I love Jimmy very much (except of course the odd occasion that I put him and his golf clubs up for sale on facebook) but this journey has made it all so surreal. We have spent hours talking about stuff we never talked about. We are brave together and talk about the scary things and we laugh and joke about the funny things in life. We lock eyes across a room and even agree to unspoken things. This journey has not broken us and I know nothing can.
On a lighter note....you may even find me caddying for Jimmy if he is ever allowed to play golf again! Did I say that?
My blessing today are my friends.
2014/07/04
Friday, 4th July
Brrr.....we are in for a freezing weekend in Cape Town. As I type, it is storming outside and many of our roads are already flooded. The temperature has dropped and it has been dark all day. Snow has been forecast to fall on Table Mountain tonight and tomorrow morning.
Jimmy had chemo this morning but only the Velcade. His white blood cell level is still too low to have the orange one, Endoxan. One of the side effects of Endoxan is that it lowers white blood cell levels and Prof doesn't want Jimmy's to drop any lower as he will then be high risk for infection again.
After waiting two months for the go-ahead for Zobone, the authorisation came through this week so Jimmy had his first dose today. Zobone will be administered once a month, intravenously for 12 months and what it does is bind the surface of the bones to help prevent further bone loss.
We were officially introduced to Dorothy today, although we have seen her many times flitting in and out of the chemotherapy clinic. She is also always involved with Prof Novitzky when he does a bone marrow biopsy. Dorothy works in Prof Novitzky's haematology laboratory and is the Haematology Technologist. She is responsible for the successful harvesting of stem cells and looks after the whole procedure of separating and cleaning them and then dividing the harvest in half. They then get frozen until they are needed for the stem cell transplant. The second half is kept for if and when Jimmy comes out of remission, which means he doesn't have to go through the whole procedure again (well, most of it). She was quite sweet in the way she explained it to us. She said we have 5 children who are our babies and the patients stem cells are her babies which she has to look after as stem cells are immature blood cells.
What to do on a wintry weekend like this? That's easy....couch, blanket, pudding, cappuccino and DVDs. And then of course there is soccer, rugby and tennis to watch. My three favourite things this weekend? Jimmy, Keira our Staffie and the heater.
Jimmy had chemo this morning but only the Velcade. His white blood cell level is still too low to have the orange one, Endoxan. One of the side effects of Endoxan is that it lowers white blood cell levels and Prof doesn't want Jimmy's to drop any lower as he will then be high risk for infection again.
After waiting two months for the go-ahead for Zobone, the authorisation came through this week so Jimmy had his first dose today. Zobone will be administered once a month, intravenously for 12 months and what it does is bind the surface of the bones to help prevent further bone loss.
We were officially introduced to Dorothy today, although we have seen her many times flitting in and out of the chemotherapy clinic. She is also always involved with Prof Novitzky when he does a bone marrow biopsy. Dorothy works in Prof Novitzky's haematology laboratory and is the Haematology Technologist. She is responsible for the successful harvesting of stem cells and looks after the whole procedure of separating and cleaning them and then dividing the harvest in half. They then get frozen until they are needed for the stem cell transplant. The second half is kept for if and when Jimmy comes out of remission, which means he doesn't have to go through the whole procedure again (well, most of it). She was quite sweet in the way she explained it to us. She said we have 5 children who are our babies and the patients stem cells are her babies which she has to look after as stem cells are immature blood cells.
What to do on a wintry weekend like this? That's easy....couch, blanket, pudding, cappuccino and DVDs. And then of course there is soccer, rugby and tennis to watch. My three favourite things this weekend? Jimmy, Keira our Staffie and the heater.
2014/07/03
Thursday, 3rd July
The days are just so much easier of late. We definitely do not have the constant stress we were experiencing and had became accustomed to, day in and day out and half the night, of the past. It is amazing how quickly one puts the really bad times behind you. Just this morning I was thinking of the time when Jimmy could not get in and out of bed on his own, turn over in bed on his own, shower or get dressed on his own or even walk on his own. It was not too long ago that I could not make a phone call for fear of breaking down and crying. How far he has come and how well he has done in two months is just so amazing and we are so grateful.
Jimmy went into work today again for the morning. Thank you D'ian for letting me know that he arrived safely. He never remembers but I think that is because he is so happy to be going in, that it is the last thing on his mind.
Exciting times abound. Megan's flight is now officially booked and she leaves on the 15th of July to join the NCL Jade (Norwegian Cruise Lines) on the 17th of July in Santorini, Greece. She flies Cape Town - Johannesburg - Istanbul - Athens - Santorini. The girls and I spent most of the day enjoying some retail therapy and we really shopped till we dropped, getting everything that Megan needs for her trip.
Tomorrow is Friday which means we are going through to the clinic and hopefully after doing Jimmy's bloods he will get the go-ahead to start 4th cycle of chemo and maybe I am pushing my luck, but maybe...just maybe...we might get a more up to date M protein result.
Our blessings today are a thank you to Mark, Dawn and family for the lovely air purifier. You will be happy to know that it is already plugged in and I keep thinking I am walking in an orange orchard, it smells too divine.
Jimmy went into work today again for the morning. Thank you D'ian for letting me know that he arrived safely. He never remembers but I think that is because he is so happy to be going in, that it is the last thing on his mind.
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| Jimmy with some of the Komatsu staff this morning |
Tomorrow is Friday which means we are going through to the clinic and hopefully after doing Jimmy's bloods he will get the go-ahead to start 4th cycle of chemo and maybe I am pushing my luck, but maybe...just maybe...we might get a more up to date M protein result.
Our blessings today are a thank you to Mark, Dawn and family for the lovely air purifier. You will be happy to know that it is already plugged in and I keep thinking I am walking in an orange orchard, it smells too divine.
2014/07/01
Tuesday, 1st July
THIS IS ME DOING THE HAPPY DANCE !
Jimmy had his pre-start-of new-chemo-cycle appointment with Prof Novitzky yesterday evening. We got the best news anyone could wish for....
Prof: 'Hmmmm....let's have a look at some blood results'. 'You know that when you started chemo in May your cancer was very aggressive?' And I am thinking....funny how they don't use these words in the beginning when you are being diagnosed.
Just to back step a little and explain again so the new results make sense: Multiple Myeloma (MM) is a cancer of the plasma cells in the bone marrow. Plasma cells are white blood cells which make up proteins called antibodies (immunoglobulins). Normally, plasma cells produce many types of proteins, called polyclonal immunoglobulins, to fight infections. In MM, a group of abnormal plasma cells multiplies in the marrow to an abnormally high level. These malignant plasma cells produce large amounts of a single monoclonal immunoglobulin (called M protein), which is not in response to an infection. Uncontrolled MM can lead to severe bone pain, multiple lesions in the bones, thinned and weakened bones susceptible to fractures, kidney failure, severe anaemia, weakened immune system and hypercalcemia.
With Jimmy's first blood tests when they measured his M-spike (amount of M proteins) Jimmy's was 78gr of M protein per 1 litre of plasma. The blood test results that Prof used yesterday were as at the 11th of June which was after the completion of Jimmy's second cycle of chemo and the M proteins measure 21gr per 1 litre of plasma. Prof explained that one hopes for the lowest possible count prior to a stem cell transplant as the lower the M proteins are, the longer remission will be. Best case scenario of course would be 0 M proteins. This is a huge improvement and since the 11th of June, Jimmy has completed another cycle of chemo so it should be even better. He is meant to start the 4th cycle of chemo today but his white cell count is too low so we will go through on Friday and have bloods done and if they have come up enough then they will start 4th cycle on Friday, if not then they will start next Tuesday. Jimmy's white blood cells are low but the problem with the orange chemo (an extra chemo administered at first treatment of each cycle) is that it lowers the white blood cell count and we think Prof if concerned it will drop too low.
The best blessing we have had yet. Jimmy had tears of joy in his eyes and I am sure, if he could have, he would have done the hoola-hoola. Words cannot explain how happy we are.
Happy birthday to my cutest little niece Tammy today. And sending birthday wishes to Rohan too, this is the best birthday present we could come up with Ro ;)
PS 31 more views of my blog to reach 10 000 views. Awesome xx