At last some news to pass on to you all...
Jimmy had chemo yesterday afternoon and then we saw Prof afterwards. Basically Prof has had a look at what he calls Jimmy's 'trend' which is how he is reacting to chemotherapy and Prof feels that it is not bringing down the cancer cell counts enough to warrant having chemo. Jimmy has been on Velcade from the beginning as well as Endoxan during his first treatment and then this was changed to Doxorubicin when they started the second treatment. From May, when chemo started, the only real positive was by the end of the second cycle when his cancer cell count came down from 75 to 21 and since then he has basically plateaued - dropping a further 2 to 19 and then going back up to 23.
He explained to us that we have 2 options:
1) We keep on with the Velcade but he changes the Doxorubicin to Revlimid. He would have to motivate with our medical aid again as this is a very expensive drug. And to see any possible positive change he would have to do a couple of cycles so we would be looking at approximately another 3 months of chemotherapy.
2) We can chemotherapy now and go ahead and do stem cell transplant. Because his cancer cell count is still so high the hope of being in remission after stem cell transplant is not as good as it would be if this cancer cell count was say down to 5 or best case scenario 0. And more than likely, Jimmy will have to carry on with chemotherapy afterwards. Velcade again plus something else.
We discussed this and then asked Prof what he would do and Prof said he would go ahead with stem cell transplant.
This is not really the news we wanted to hear but there does seem, to us, to be more positives going this route. Jimmy will complete this 3rd cycle of chemo with last treatment being this Thursday. They took bloods last night and will be doing the M protein reading to see what is cancer cell count is at the moment. We should get these results back on Monday. What we have decided is the following: If there has been a significant drop in the cancer cell count from the last one after first cycle when it was 23 then Jimmy will finish this treatment which is one more cycle and Prof will motivate for another 2 cycles before he does stem cell transplant. If there is no significant drop in the cancer cell count, which is what Prof is suspecting, then he will motivate for stem cell transplant. This takes a couple of weeks. Once the medical aid authorises the stem cell transplant he will give us a six week plan broken up into days which will lay out the whole stem cell transplant process from start to finish. This 6 week period would involve a heavy dose of chemo, Neupogen injections to stimulate stem cell production, the harvesting of stem cells (which will get frozen - enough for 3 transplants), going into F4 (isolation ward) for between 20 days and a month where he will have another huge dose of chemo to wipe out all blood counts and as many cancer cells as possible and then they will do the transplant where they put back one bag of frozen stem cells.
The positive of this is that even if Jimmy does have to continue with chemotherapy after the stem cell transplant his body will be rejuvenated and not at the cancer low that it is now and his immune system would not be as compromised as it is now either. This means he could go back to work and if chemo is eg once or twice a week he would have chemo on his way into the office.
So....basically we now wait for the M protein results on Monday (cancer cell count) to decide which way we going to go. This is all allot to take in and a big decision to make as there are positives and negatives with each option. The big positive of doing stem cell transplant now is that there is a good chance Jimmy's body will react better to the chemo after stem cell transplant. The negative being that it is always better to start the stem cell transplant with the cancer cell count as low as possible as this is more beneficial for a longer remission. The reason for this being that the blood is run through a machine which is computerised to 'clean' the stem cells but it is impossible that the stem cells that get put back are 100% cancer free (unless he is in remission) and over time these cells will start to reproduce again.
I noticed a bit of a rash on Jimmy's stomach on Friday when I gave him an injection. Prof had a look at it and said we must keep an eye on it as it might be Shingles.
I had my check-up with Dr Gotlieb this morning and the new medication he put me on for my Psoriatic Arthritis and Fibromyalgia is working like a bomb. He can only pick up very slight inflammation in my wrists. And my blood pressure is completely back to normal!
We have been given allot to think about and these decisions can't really be made lightly but I believe Jimmy's body will guide us and this will be possible with the results of the cancel cell count.
2014/09/30
2014/09/26
Friday, 26th September
A change in scenery, a cup of coffee with friends and a positive outcome go a long way.....
It is amazing how the small things can uplift you. For over 2 weeks now we have been in a rut and feeling rather down waiting for results and waiting to speak to Prof. Although they did not agree to do M protein bloods again for us, today is Friday and we do see Prof on Monday. I don't really see the point after all this time as we are both quite sure he is going to say that we must wait for the next set of results to get an idea of what is happening, but there is something positive about knowing that we are going to see him.
Jimmy had chemo on Thursday and as suspected needed Neupogen injections again for 3 days. I felt good knowing that I had organised with the medical aid that I email the script to them and they will send it through to Dischem Direct who would overnight the injections to us and deliver them to our front door on Friday morning. Huh...so much for this.
We got home and I emailed the script and a copy of Jimmy's bloods through to the Oncology Department and then followed up with a phone call. Not 30 minutes later they phoned back to say that Dischem Direct can't get the injections to us earlier than Tuesday. I had popped out quickly and Jimmy took the call. I tried phoning them back for half an hour from 15h30 but there was no answer. So this morning I got on the phone and thanked Veronica for being so helpful but asked to please speak to someone above her. I explained that I knew it was not her fault and understood that we had signed agreeing to the option of using Dischem as our preferred provider but I felt that the provider was not providing the service that we had signed for. Jimmy has now been having chemo for 5 months and it is taking its toll on his system. His blood results yesterday were the lowest they have ever been which means that recovery time between treatments is getting shorter as his system becomes more run down. I explained that if he didn't start the Neupogen injections today, he would not be able to have chemo on Monday or Thursday next week, as between now and Tuesday his bloods are going to drop even further due to yesterday's chemo. For the first time his red blood counts and platelets are also low and I felt that without the Neupogen injections he would have to receive a blood transfusion and platelets within the next week. The whole treatment would also be delayed by a minimum of 2 weeks. And then I told them that once chemotherapy is completed in the middle of October they are going to start the whole process for stem cell transplant and in order to harvest his stem cells he would have to have on going Neupogen injections and what were we supposed to do then? Didn't they think that this was actually, in the end, going to cost them more money? Seeing my point of view she agreed with me and said she would phone Dischem Direct and come back to me. I then received a call from Dischem Direct to tell me that they had sourced Neupogen injections at the Panorama Hospital's Oncology Department and they were there, waiting for us to collect. Amazing! But why is it the way of the world these days that we have to fight for everything to get results? We took a drive out there today and met the team at Panorama Oncology and left with our injections in a cooler box on ice. It was quite nice to see how their setup looks and works and a pleasant change in scenery from driving to UCTPAH twice a week. We ventured out beyond the boerewors curtain today! lol
And then Kathi and Antony phoned to say she had a delicious pepper pie for us that had just come out the oven, so we popped in their on our way home for a cup of coffee.
We both feel like we have accomplished something today and have Monday's appointment to look forward to so yes, we are definitely in better spirits.
We've started watching another series called Homeland and we are totally hooked. My 'chemo blanket' which I am crocheting is coming along in leaps and bounds and it is such a conversation piece with the oldies at chemotherapy. Jimmy is a bit disappointed that we can't join the staff and customers in the box tomorrow for the SA vs Australia game at Newlands, but this is just one of those things. We have a couple of visits from friends and colleagues to look forward to this weekend and will enjoy the rugby from the couch at home and of course there is the Ryder Cup to watch.
It is with a big sigh of relief that I am happy to say that exams are at last finished and the kids can all relax again for a month or so before finals start. And then a big congratulations to Loren who passed her bike licence today and for a 250cc at that!
Thank you for all your prayers, love and support. We have been down in the doldrums lately and your messages and phone calls always mean so much.
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It is amazing how the small things can uplift you. For over 2 weeks now we have been in a rut and feeling rather down waiting for results and waiting to speak to Prof. Although they did not agree to do M protein bloods again for us, today is Friday and we do see Prof on Monday. I don't really see the point after all this time as we are both quite sure he is going to say that we must wait for the next set of results to get an idea of what is happening, but there is something positive about knowing that we are going to see him.
Jimmy had chemo on Thursday and as suspected needed Neupogen injections again for 3 days. I felt good knowing that I had organised with the medical aid that I email the script to them and they will send it through to Dischem Direct who would overnight the injections to us and deliver them to our front door on Friday morning. Huh...so much for this.
We got home and I emailed the script and a copy of Jimmy's bloods through to the Oncology Department and then followed up with a phone call. Not 30 minutes later they phoned back to say that Dischem Direct can't get the injections to us earlier than Tuesday. I had popped out quickly and Jimmy took the call. I tried phoning them back for half an hour from 15h30 but there was no answer. So this morning I got on the phone and thanked Veronica for being so helpful but asked to please speak to someone above her. I explained that I knew it was not her fault and understood that we had signed agreeing to the option of using Dischem as our preferred provider but I felt that the provider was not providing the service that we had signed for. Jimmy has now been having chemo for 5 months and it is taking its toll on his system. His blood results yesterday were the lowest they have ever been which means that recovery time between treatments is getting shorter as his system becomes more run down. I explained that if he didn't start the Neupogen injections today, he would not be able to have chemo on Monday or Thursday next week, as between now and Tuesday his bloods are going to drop even further due to yesterday's chemo. For the first time his red blood counts and platelets are also low and I felt that without the Neupogen injections he would have to receive a blood transfusion and platelets within the next week. The whole treatment would also be delayed by a minimum of 2 weeks. And then I told them that once chemotherapy is completed in the middle of October they are going to start the whole process for stem cell transplant and in order to harvest his stem cells he would have to have on going Neupogen injections and what were we supposed to do then? Didn't they think that this was actually, in the end, going to cost them more money? Seeing my point of view she agreed with me and said she would phone Dischem Direct and come back to me. I then received a call from Dischem Direct to tell me that they had sourced Neupogen injections at the Panorama Hospital's Oncology Department and they were there, waiting for us to collect. Amazing! But why is it the way of the world these days that we have to fight for everything to get results? We took a drive out there today and met the team at Panorama Oncology and left with our injections in a cooler box on ice. It was quite nice to see how their setup looks and works and a pleasant change in scenery from driving to UCTPAH twice a week. We ventured out beyond the boerewors curtain today! lol
And then Kathi and Antony phoned to say she had a delicious pepper pie for us that had just come out the oven, so we popped in their on our way home for a cup of coffee.
We both feel like we have accomplished something today and have Monday's appointment to look forward to so yes, we are definitely in better spirits.
We've started watching another series called Homeland and we are totally hooked. My 'chemo blanket' which I am crocheting is coming along in leaps and bounds and it is such a conversation piece with the oldies at chemotherapy. Jimmy is a bit disappointed that we can't join the staff and customers in the box tomorrow for the SA vs Australia game at Newlands, but this is just one of those things. We have a couple of visits from friends and colleagues to look forward to this weekend and will enjoy the rugby from the couch at home and of course there is the Ryder Cup to watch.
It is with a big sigh of relief that I am happy to say that exams are at last finished and the kids can all relax again for a month or so before finals start. And then a big congratulations to Loren who passed her bike licence today and for a 250cc at that!
Thank you for all your prayers, love and support. We have been down in the doldrums lately and your messages and phone calls always mean so much.
2014/09/23
Tuesday, 23rd September
Where to start......what to say......it has been one of those couple of days......
So, we were looking forward to starting the 3rd cycle of chemo yesterday afternoon and seeing Prof at 5pm for our once a cycle appointment. Jimmy had his chemo as well as The Red Devil but the appointment with Prof was, again, just not meant to be. I explained before that we should have seen him last Friday but Ilhaam phoned to say he would be away and she rescheduled the appointment for 'the Monday' at 5pm. It turns out that 'the Monday' was not yesterday but next Monday. We received the results of the higher M Proteins on the 11th of September and today is the 23rd and we have still not discussed these with him. Yesterday we asked Sister Olivia when she does Jimmy's bloods to please do another M Protein reading so that these results will be in, in time for our appointment with Prof on Monday but she said they are only allowed to be taken once a month and the last lot were taken on 3rd September. So we asked her to please speak to Prof and motivate that they be taken earlier so that we hopefully have some comparisons to discuss on Monday. By getting these readings back (as at the end of the second cycle of chemo) we will have a better picture of what is going on. There are 3 scenarios: one - they stay the same; two - they drop or three - they rise. We won't know what is going on but we will have some results. Of course if they don't do the M Protein bloods now, when they do the results will not come in around an appointment with Prof and does this mean we will wait 3 weeks to hear from him?
As I am sure you have picked up from my tone, the sky is very grey at the moment. We are almost into our 6th month of Cancer and boy, does it eat at a person! For five and a half months Jimmy has been stuck here and working from home and there has only been the odd occasion that we can go out and due to the length of treatment, the good days of good bloods are becoming less and less. For five and a half months our children have had to miss their weekends and Wednesdays with us when they have been sick. We can't even get in the car and drive down to Fish Hoek to visit my brothers or my parents in Bredasdorp because when Jimmy has been up to it, for five and a half months someone has had flu. For five and a half months we have been looking through rose tinted glasses except in our case they are cancer tinted. It never leaves you, not even when you are asleep because we both dream about cancer too. We knew it would be a long road but we didn't think we would be stranded in the Karoo on a flat, never ending dirt road, joking on the dust. Jimmy finished his 4th cycle of chemo on the 11th of July and how far have we come since then?
As my cancer survivor friend Cheryl (Cheryl D from now on as I have 3 Cheryl friends) explained to me in an email this morning: "When a person has to stare cancer in the face every second of every day, it does end up making us feel morbid and being positive gets harder and harder. This is the time that you have to fight harder and show cancer that you will kick its ass!" I am trying to be strong but there is the guilt too. I feel guilty for not being strong all the time when I can only imagine how Jimmy must feel. And then I think back to April and May when I was so strong and at that time Jimmy couldn't even walk, shower, get dressed or go to the toilet on his own.
But as I said to Cheryl D this morning......this too shall pass. Thankfully these days only come around in a little group every now and then. The rest of the time we are positive and thankful for what we have and are able to find the positive in even the most negative of situations.
I follow a couple of blogs and have not been reading them of late. Perhaps this is what is missing in my life at the moment. Reading and sharing in other Multiple Myeloma patients' day to day lives and understanding what they are going through also helps us cope better.
These blogs are the understanding of what I call 'the Multiple Myeloma norms' and make coping with not coping that little bit easier and this is, in essence, what I truly hope for my blog.
So, we were looking forward to starting the 3rd cycle of chemo yesterday afternoon and seeing Prof at 5pm for our once a cycle appointment. Jimmy had his chemo as well as The Red Devil but the appointment with Prof was, again, just not meant to be. I explained before that we should have seen him last Friday but Ilhaam phoned to say he would be away and she rescheduled the appointment for 'the Monday' at 5pm. It turns out that 'the Monday' was not yesterday but next Monday. We received the results of the higher M Proteins on the 11th of September and today is the 23rd and we have still not discussed these with him. Yesterday we asked Sister Olivia when she does Jimmy's bloods to please do another M Protein reading so that these results will be in, in time for our appointment with Prof on Monday but she said they are only allowed to be taken once a month and the last lot were taken on 3rd September. So we asked her to please speak to Prof and motivate that they be taken earlier so that we hopefully have some comparisons to discuss on Monday. By getting these readings back (as at the end of the second cycle of chemo) we will have a better picture of what is going on. There are 3 scenarios: one - they stay the same; two - they drop or three - they rise. We won't know what is going on but we will have some results. Of course if they don't do the M Protein bloods now, when they do the results will not come in around an appointment with Prof and does this mean we will wait 3 weeks to hear from him?
As I am sure you have picked up from my tone, the sky is very grey at the moment. We are almost into our 6th month of Cancer and boy, does it eat at a person! For five and a half months Jimmy has been stuck here and working from home and there has only been the odd occasion that we can go out and due to the length of treatment, the good days of good bloods are becoming less and less. For five and a half months our children have had to miss their weekends and Wednesdays with us when they have been sick. We can't even get in the car and drive down to Fish Hoek to visit my brothers or my parents in Bredasdorp because when Jimmy has been up to it, for five and a half months someone has had flu. For five and a half months we have been looking through rose tinted glasses except in our case they are cancer tinted. It never leaves you, not even when you are asleep because we both dream about cancer too. We knew it would be a long road but we didn't think we would be stranded in the Karoo on a flat, never ending dirt road, joking on the dust. Jimmy finished his 4th cycle of chemo on the 11th of July and how far have we come since then?
As my cancer survivor friend Cheryl (Cheryl D from now on as I have 3 Cheryl friends) explained to me in an email this morning: "When a person has to stare cancer in the face every second of every day, it does end up making us feel morbid and being positive gets harder and harder. This is the time that you have to fight harder and show cancer that you will kick its ass!" I am trying to be strong but there is the guilt too. I feel guilty for not being strong all the time when I can only imagine how Jimmy must feel. And then I think back to April and May when I was so strong and at that time Jimmy couldn't even walk, shower, get dressed or go to the toilet on his own.
But as I said to Cheryl D this morning......this too shall pass. Thankfully these days only come around in a little group every now and then. The rest of the time we are positive and thankful for what we have and are able to find the positive in even the most negative of situations.
I follow a couple of blogs and have not been reading them of late. Perhaps this is what is missing in my life at the moment. Reading and sharing in other Multiple Myeloma patients' day to day lives and understanding what they are going through also helps us cope better.
These blogs are the understanding of what I call 'the Multiple Myeloma norms' and make coping with not coping that little bit easier and this is, in essence, what I truly hope for my blog.
2014/09/17
Wednesday, 17th September
Thank you to everyone who made Jimmy's birthday so special. Sunday was an awesome afternoon with friends coming to visit. He really was so chuffed and it definitely was made to be a birthday to remember. Such a pity that there were quite a few people who were unable to visit because they were all sick with this terrible flu doing the rounds and this includes everyone in my family. You were all missed.
Yesterday, which was Jimmy's birthday, was another wonderful day with lots of phone calls. It was nice to have the children pop in during the late afternoon too as well as Rohan and Patsy. Jimmy was very spoiled, thank you for all your presents and beautiful cards with such positive words, Muis and Murray in particular. Thanks to Komatsu Bellville for the lovely basket full of goodies and to all Jimmy's friends who chipped in for a weekend away in Franschhoek.....I hope he takes me with ;). And another special moment was when Stan arrived here first thing in the morning with my Brush Works staff who all sang happy birthday to Jimmy from the driveway while he looked out of the window.
Jimmy had his last chemo treatment of the second cycle on Monday which went well. As I expected, the Neupogen injection's effect did not last too long and his white blood count was already back down to below normal levels again. His red blood counts as well as his haemoglobin have also started to drop now but I am sure this is also to be expected, considering that in total he has now had 6 cycles of chemo twice a week for two weeks each. Dr Fine was busy with high care and isolation ward rounds so we did not get to speak to her about why Jimmy's M protein readings have risen. I phoned yesterday and today, also with no luck. And now our appointment with Prof for Friday has been cancelled as he will be away so we see him on Monday afternoon after Jimmy has his first treatment of the 3rd cycle. I did tell them today that we cannot wait a week and a half for some kind of explanation as to why we are, basically what we feel is, going backwards!
Jimmy was very down yesterday morning as we heard on Monday that he needs to apply for temporary disability - of course this news was impeccably timed for the day before his 50th birthday. At this stage we don't know what this all entails as up until now he has been working from home. We have the daunting task of filling in 16 pages of information and of course Prof Novitzky also has some forms to complete. We are busy making a list of all the questions that we have, to understand this all better.
Quite strange really how a birthday should be a joyous occasion. Please don't get me wrong, Jimmy loved having everyone around, but it was also another stark reminder of what we are faced with. In April/May this year he was promoted at work and 5 months later he has turned 50 and in this time he has been diagnosed with cancer. We are very positive and will forever remain positive but as we stand now, the reality is that we do not know what the future holds.
I feel so helpless as we are so not in control of any of this. I see that Jimmy has had allot on his mind this week and I so wish that I could take it all away. Life can be so unfair and he definitely doesn't deserve the lemons he is being handed.
And this is a special little message to Loren - hurry up and get better my Angel so we can see you again , we love and miss you lots xx
Yesterday, which was Jimmy's birthday, was another wonderful day with lots of phone calls. It was nice to have the children pop in during the late afternoon too as well as Rohan and Patsy. Jimmy was very spoiled, thank you for all your presents and beautiful cards with such positive words, Muis and Murray in particular. Thanks to Komatsu Bellville for the lovely basket full of goodies and to all Jimmy's friends who chipped in for a weekend away in Franschhoek.....I hope he takes me with ;). And another special moment was when Stan arrived here first thing in the morning with my Brush Works staff who all sang happy birthday to Jimmy from the driveway while he looked out of the window.
Jimmy had his last chemo treatment of the second cycle on Monday which went well. As I expected, the Neupogen injection's effect did not last too long and his white blood count was already back down to below normal levels again. His red blood counts as well as his haemoglobin have also started to drop now but I am sure this is also to be expected, considering that in total he has now had 6 cycles of chemo twice a week for two weeks each. Dr Fine was busy with high care and isolation ward rounds so we did not get to speak to her about why Jimmy's M protein readings have risen. I phoned yesterday and today, also with no luck. And now our appointment with Prof for Friday has been cancelled as he will be away so we see him on Monday afternoon after Jimmy has his first treatment of the 3rd cycle. I did tell them today that we cannot wait a week and a half for some kind of explanation as to why we are, basically what we feel is, going backwards!
Jimmy was very down yesterday morning as we heard on Monday that he needs to apply for temporary disability - of course this news was impeccably timed for the day before his 50th birthday. At this stage we don't know what this all entails as up until now he has been working from home. We have the daunting task of filling in 16 pages of information and of course Prof Novitzky also has some forms to complete. We are busy making a list of all the questions that we have, to understand this all better.
Quite strange really how a birthday should be a joyous occasion. Please don't get me wrong, Jimmy loved having everyone around, but it was also another stark reminder of what we are faced with. In April/May this year he was promoted at work and 5 months later he has turned 50 and in this time he has been diagnosed with cancer. We are very positive and will forever remain positive but as we stand now, the reality is that we do not know what the future holds.
I feel so helpless as we are so not in control of any of this. I see that Jimmy has had allot on his mind this week and I so wish that I could take it all away. Life can be so unfair and he definitely doesn't deserve the lemons he is being handed.
And this is a special little message to Loren - hurry up and get better my Angel so we can see you again , we love and miss you lots xx
2014/09/16
Tuesday, 16th September
Happy 50th birthday to Jimmy
To My Husband
I love. . .
Being your partner
Your lover, your wife,
Sharing the closeness of our family life,
Laughing about funny moments we've had,
Seeing how caring you are as a dad.
I love. . .
Being a couple and also best friends,
Together in solving the problems life sends,
Supporting each other in all that we do -
And knowing I'm spending forever with you.
2014/09/12
Friday, 12th September
I have been putting off doing an update but I thought I best get it done tonight because before I know it, the weekend will be over.
Jimmy had chemo on Thursday and thanks to the Neupogen injections his white bloods have come right up from 1.6 to 10.4. This does only last a few days as Thursday's chemo will bring them down again but at least he was able to have chemo on Thursday. Monday is his last treatment of the 2nd cycle which means we will be half way. Cycle 3 will start the following Monday.
We have had some other, not so good news. The results of the M protein bloods (these are basically the bad cancer cells) which they took at the end of the 1st cycle have come back and unfortunately Jimmy's reading has gone up from 19 to 23. This is very frustrating and so disappointing. I had a chat to Dr Fine but she basically said she would discuss it with Prof and they will decide if anything with regards to his treatment needs to be changed. I did not hear from her or Prof today so we will probably see either of them on Monday.
We have really just taken this information and tucked it away for now. Hopefully we will have some answers on Monday, although we have come to understand that it is hard to answer anything when it comes to cancer. We remain positive that when they do the M protein bloods at the end of this cycle these numbers will have dropped and that hopefully Jimmy's body just needed two cycles of Doxorubicin to get everything kick started.
Jimmy had chemo on Thursday and thanks to the Neupogen injections his white bloods have come right up from 1.6 to 10.4. This does only last a few days as Thursday's chemo will bring them down again but at least he was able to have chemo on Thursday. Monday is his last treatment of the 2nd cycle which means we will be half way. Cycle 3 will start the following Monday.
We have had some other, not so good news. The results of the M protein bloods (these are basically the bad cancer cells) which they took at the end of the 1st cycle have come back and unfortunately Jimmy's reading has gone up from 19 to 23. This is very frustrating and so disappointing. I had a chat to Dr Fine but she basically said she would discuss it with Prof and they will decide if anything with regards to his treatment needs to be changed. I did not hear from her or Prof today so we will probably see either of them on Monday.
We have really just taken this information and tucked it away for now. Hopefully we will have some answers on Monday, although we have come to understand that it is hard to answer anything when it comes to cancer. We remain positive that when they do the M protein bloods at the end of this cycle these numbers will have dropped and that hopefully Jimmy's body just needed two cycles of Doxorubicin to get everything kick started.
2014/09/10
Wednesday, 10th September
JIMMY'S 50TH BIRTHDAY
Dear family and friends,
It is Jimmy's 50th birthday next week on Tuesday the 16th of September.
As much as we would love to have a roaring 50th bash to celebrate the occasion we unfortunately cannot risk having a whole crowd of people around at the same time as Jimmy's immunity is too compromised at the moment, apart from the fact that I don't think he will last the night.
What I have decided to do is have an open house this Sunday, the 14th of September, between 12h00 and 16h00, this way we can have smaller groups of family and friends coming to visit over the 4 hours. He is back on the Neupogen injections again so I am sure by Sunday his immunity will be a bit stronger.
So, if you would like to pop in for a visit and come and wish Jimmy we would love to see you.
I will serve savoury and sweet treats as well as coffee and tea. If you would like something stronger to drink then please bring this along.
MOST IMPORTANT
As much as Jimmy would like to see everyone, I ask that you please not pop in if you are not feeling well or if anyone in your family has been sick this week.
Dear family and friends,
It is Jimmy's 50th birthday next week on Tuesday the 16th of September.
As much as we would love to have a roaring 50th bash to celebrate the occasion we unfortunately cannot risk having a whole crowd of people around at the same time as Jimmy's immunity is too compromised at the moment, apart from the fact that I don't think he will last the night.
What I have decided to do is have an open house this Sunday, the 14th of September, between 12h00 and 16h00, this way we can have smaller groups of family and friends coming to visit over the 4 hours. He is back on the Neupogen injections again so I am sure by Sunday his immunity will be a bit stronger.
So, if you would like to pop in for a visit and come and wish Jimmy we would love to see you.
I will serve savoury and sweet treats as well as coffee and tea. If you would like something stronger to drink then please bring this along.
MOST IMPORTANT
As much as Jimmy would like to see everyone, I ask that you please not pop in if you are not feeling well or if anyone in your family has been sick this week.
 |
| JIMMY'S 50TH BASH - Sunday 14th September 12h00 - 16h00 |
2014/09/09
Tuesday, 9th September
Well, it seems that I am in a spot trouble because I have not blogged since the 1st of September. Thanks for all the phone calls and messages from friends just 'checking in'. It has been very busy work wise for me and we've had quite a few trips through to UCTPAH so my time has been a bit limited and by the time I sit down to blog in the evening I have been a tad tired and just not in the right frame of mind.
So where were we....our geyser burst and we were without hot water for 2 days. The whole claims process went very smoothly and I really thought if only everything in life was this simple. We phoned and were told we had to pay R 500,00 excess and the plumber was here the next morning to install the new geyser and even managed to organise a solar geyser. We had a normal 200 litre geyser connected to a solar system before. We were a bit worried because they said they would have to remove the roof to put the new geyser in but then decided to make a bigger hole around the trap door. The following day the electricians were here to wire everything up and now, 6 days later, we wait for the builders to come and neaten up the hole in our ceiling and put in a bigger trap door.
Jimmy started first treatment of the 2nd cycle of chemo on Thursday. It was a very long day at the chemo clinic as he had the normal chemo as well as the Doxorubucin and the Zobone, to strengthen his bones, which is also given intravenously. We only got home at 15h30. It was a rather depressing day actually and we both came home feeling a bit down. There is nothing nicer than going to the chemo clinic and seeing the other regular patients there and be able to tell them how well they are looking. Of course everyone has ups and downs just like Jimmy but on Thursday, three of our cancer friends really didn't look too well at all. Two of them had to lie down whilst having their chemo.
On Friday morning Jimmy woke up to hair on his pillow. I had counted the days from his first Doxorubicin treatment and if his hair was going to fall out I thought it would be around the following Tuesday. I ran my fingers through his hair and it came out in tufts so we decided I would shave it really short. I thought he would wake up the next morning and it would all be gone but it is just slowly getting thinner and thinner. At least it's just very short little pieces on his pillow and shirts now. It's not very nice to see big tufts of hair lying about.
We had the children with us this past weekend and how nice not to have any sports commitments on Saturday morning. No getting up at 6:30! It was a pretty quiet weekend at home as the kids had to study and Emma had a ton of projects to get through. I was also sure that Jimmy's white blood cell counts would be dropping as a result of the Doxorubicin so not worth chancing going out. He has been very tired, dozing off during the day in his chair and sleeping in a bit in the mornings. We are very excited that Bradly has been accepted at college to study Sports Management next year. Loren and Shannon start exams tomorrow and Emma starts on Monday.
We are now on the Thursday / Monday cycle for chemo, so Jimmy had chemo again yesterday. His bloods have dropped really fast after The Red Devil last Thursday: whites from 3.1 to 1.6 (range 4 to 11), reds from 4.11 to 3.84 (range 4.5 to 6.5) and basospils have risen from 0.7 to 1.6 (range 0 to 0.5). I am glad we took the precaution of not going out over the weekend.
Of course this means that he has to have more Neupogen injections. The doctor did the script yesterday and we had to wait for the medical aid to authorise them and then go back this morning to collect them. Another long day of waiting. I had phoned the medical aid yesterday afternoon to tell them that last time he had the Neupogen injections we had to pay a levy of R750 because we were not using Dischem Pharmacy which is our preferred service provider. I explained to them that Dischem can get the Neupogen but they have to order it from their Johannesburg warehouse and it would take 5 days to get here. Jimmy can't wait 5 days to get the injections and if he does his white bloods cell count will drop even lower and his next chemo treatment will be postponed. If this happens each cycle it could throw everything out by a month. They very kindly unblocked the levy and we went through to pick them up this morning. We get there and the pharmacist tells us she cannot issue them because the system is throwing out that Jimmy has already had Neupogen injections in the last 26 days. So I phone the medical aid again and explain that this is going to be the norm for the rest of the 3 cycles and once he starts stem cell transplant these injections are going to be ongoing so they better change it in the system. They agree to this while we wait 2 hours. They then phone me back to tell me that the code has been changed on the system and the pharmacist can issue the injections. What happens???? We have to pay a R750 levy! So I phoned them back and they are full of apologies and ask us please to pay the levy and email the slip to the medical aid and they will refund us. Believe it or not but I have been told by Prof Novitzky's PA that we have a very good medical aid compared to some of the other patients.
On a positive note, thank you Kelly for the lovely visit on Saturday and for looking after Jimmy while I was being Mom's taxi. Thanks too for the beautiful flowers and Jimmy's chocolates. I am glad I didn't have to share my flowers with him. I really hope we get to see you again before you go back to Australia and please know that your Dad is in our thoughts every day and we are praying for a good recovery.
I would also like to say a big thank you to Cheryl De Wit from CANCA Relay for Life Langeberg for the lovely gift which was sent to Jimmy. It's great that you are following my blog and I love the daily inspirations that you send through. For everyone else's benefit; Cheryl is a very proud cancer survivor and has been a wealth of information and support even right down to Jimmy's hair falling out.
We have had a whole lot of birthdays this month so far so our birthday wishes go out to Guy (Muis), Michelle, Spencer, Jigger and my brother Stan. It's Stan's birthday today and I can't even wish him in person because he has 'flu. Really Stan.....anything to get out of coming to the office!
I have been really slack at counting my blessings lately but I know just how very blessed I am that Jimmy has been so strong and doing so well.
So where were we....our geyser burst and we were without hot water for 2 days. The whole claims process went very smoothly and I really thought if only everything in life was this simple. We phoned and were told we had to pay R 500,00 excess and the plumber was here the next morning to install the new geyser and even managed to organise a solar geyser. We had a normal 200 litre geyser connected to a solar system before. We were a bit worried because they said they would have to remove the roof to put the new geyser in but then decided to make a bigger hole around the trap door. The following day the electricians were here to wire everything up and now, 6 days later, we wait for the builders to come and neaten up the hole in our ceiling and put in a bigger trap door.
Jimmy started first treatment of the 2nd cycle of chemo on Thursday. It was a very long day at the chemo clinic as he had the normal chemo as well as the Doxorubucin and the Zobone, to strengthen his bones, which is also given intravenously. We only got home at 15h30. It was a rather depressing day actually and we both came home feeling a bit down. There is nothing nicer than going to the chemo clinic and seeing the other regular patients there and be able to tell them how well they are looking. Of course everyone has ups and downs just like Jimmy but on Thursday, three of our cancer friends really didn't look too well at all. Two of them had to lie down whilst having their chemo.
On Friday morning Jimmy woke up to hair on his pillow. I had counted the days from his first Doxorubicin treatment and if his hair was going to fall out I thought it would be around the following Tuesday. I ran my fingers through his hair and it came out in tufts so we decided I would shave it really short. I thought he would wake up the next morning and it would all be gone but it is just slowly getting thinner and thinner. At least it's just very short little pieces on his pillow and shirts now. It's not very nice to see big tufts of hair lying about.
 |
| JIMMY SPORTING HIS NEW 'BARELY THERE ' HAIR STYLE |
We had the children with us this past weekend and how nice not to have any sports commitments on Saturday morning. No getting up at 6:30! It was a pretty quiet weekend at home as the kids had to study and Emma had a ton of projects to get through. I was also sure that Jimmy's white blood cell counts would be dropping as a result of the Doxorubicin so not worth chancing going out. He has been very tired, dozing off during the day in his chair and sleeping in a bit in the mornings. We are very excited that Bradly has been accepted at college to study Sports Management next year. Loren and Shannon start exams tomorrow and Emma starts on Monday.
We are now on the Thursday / Monday cycle for chemo, so Jimmy had chemo again yesterday. His bloods have dropped really fast after The Red Devil last Thursday: whites from 3.1 to 1.6 (range 4 to 11), reds from 4.11 to 3.84 (range 4.5 to 6.5) and basospils have risen from 0.7 to 1.6 (range 0 to 0.5). I am glad we took the precaution of not going out over the weekend.
Of course this means that he has to have more Neupogen injections. The doctor did the script yesterday and we had to wait for the medical aid to authorise them and then go back this morning to collect them. Another long day of waiting. I had phoned the medical aid yesterday afternoon to tell them that last time he had the Neupogen injections we had to pay a levy of R750 because we were not using Dischem Pharmacy which is our preferred service provider. I explained to them that Dischem can get the Neupogen but they have to order it from their Johannesburg warehouse and it would take 5 days to get here. Jimmy can't wait 5 days to get the injections and if he does his white bloods cell count will drop even lower and his next chemo treatment will be postponed. If this happens each cycle it could throw everything out by a month. They very kindly unblocked the levy and we went through to pick them up this morning. We get there and the pharmacist tells us she cannot issue them because the system is throwing out that Jimmy has already had Neupogen injections in the last 26 days. So I phone the medical aid again and explain that this is going to be the norm for the rest of the 3 cycles and once he starts stem cell transplant these injections are going to be ongoing so they better change it in the system. They agree to this while we wait 2 hours. They then phone me back to tell me that the code has been changed on the system and the pharmacist can issue the injections. What happens???? We have to pay a R750 levy! So I phoned them back and they are full of apologies and ask us please to pay the levy and email the slip to the medical aid and they will refund us. Believe it or not but I have been told by Prof Novitzky's PA that we have a very good medical aid compared to some of the other patients.
On a positive note, thank you Kelly for the lovely visit on Saturday and for looking after Jimmy while I was being Mom's taxi. Thanks too for the beautiful flowers and Jimmy's chocolates. I am glad I didn't have to share my flowers with him. I really hope we get to see you again before you go back to Australia and please know that your Dad is in our thoughts every day and we are praying for a good recovery.
I would also like to say a big thank you to Cheryl De Wit from CANCA Relay for Life Langeberg for the lovely gift which was sent to Jimmy. It's great that you are following my blog and I love the daily inspirations that you send through. For everyone else's benefit; Cheryl is a very proud cancer survivor and has been a wealth of information and support even right down to Jimmy's hair falling out.
We have had a whole lot of birthdays this month so far so our birthday wishes go out to Guy (Muis), Michelle, Spencer, Jigger and my brother Stan. It's Stan's birthday today and I can't even wish him in person because he has 'flu. Really Stan.....anything to get out of coming to the office!
I have been really slack at counting my blessings lately but I know just how very blessed I am that Jimmy has been so strong and doing so well.
2014/09/01
Monday, 1st September
Happy Spring Day to all!
The wild flowers are in full bloom and we have a perfect day in Cape Town. In fact we've had such a huge change in weather conditions from snow almost across South Africa to a beautiful summers day that I thought maybe we had moved overnight!
I am a little confused because I am sure I blogged on Thursday but can't find it. But then again, maybe I am losing my marbles.
Anyhow....I'll backtrack a little. Jimmy had chemo on Thursday and quite interesting to see how his white blood cell count dropped after being nice and high on Monday. They are now down to 3.5 which is 0.5 below the normal range on 4 - 11. Thursday was the end of first cycle so he has today off. We see Prof on Wednesday evening for a checkup and discussion on how things are going. They only do the M protein blood reading at the end of each cycle so I don't think there will be any results in yet. We usually work on results one cycle behind. And then Thursday will be the first session of second cycle which also means he will have The Red Devil again (Doxorubicin). It looks like the huge drop in wbc will be a normal thing after The Red Devil so he will more than likely have to have Neupogen injections again. On the positive, we are definitely starting to run a pattern and at least we know when he is at his best and worst with regards to his immunity.
I will also be cutting his hair short again this week. If there is chance that it is going to fall out, it will probably start during this next cycle. And on good advice from friends in the chemo clinic it is better to shave it short than wake up in the morning with huge chunks of hair on your pillow.
Jimmy has still been doing allot of work from home but definitely much tireder this treatment around compared to the first 4 cycles. He dozes off much more in his chair these days and is sleeping in later in the mornings but on good weather days he still goes for a walk around the block each morning.
It was Fish Hoek High School's Diamond Jubilee celebrations this weekend (60 years). Cheryl and I attended Founder's Day assembly on Friday. I'm not sure if any friends living overseas know if Theresa Booth is following this blog or if you have her on facebook but it would be great if you could get a message to her. Her father Erick was guest speaker and what a good job he did! He had us all in fits of laughter. On Saturday the school celebrated with a Gala Dinner which Cheryl, Maureen and myself attended. Welcome drinks, speeches by the Head Girl and Head Boy from the class of 1964, a 3 course dinner and live music with lots of dancing. The wine was flowing and we got home just before 2am. Any ex school friends - have a look at our Class of '85 facebook page for some photos. There are two lovely photos of Greg Bramwell's mom and Theresa Booth's mom. A very memorable occasion and I was indeed a proud ex Fish Hoek High School pupil.
We had a visit from Will on Friday and from Rohan and Patsy later in the evening. Yesterday was such a beautiful day that we braai'd at Rohan and Patsy's. It was lovely for Jimmy to see Guy and Catherine, Billy and Colleen and Kim again. He really has been itching to get out. Strange how this Multiple Myeloma has become part of our daily lives and on good days I sometimes wonder if he still has cancer. But it is a stark reminder when like yesterday we got home from the braai, and Jimmy had such a good day health wise, and passed out in his chair within 10 minutes of getting home.
I lay in bed last night listening to the drip drip drip of what I was sure was the geyser overflow. We've just had a plumber in, thank you to an old school friend Andrew Lund, from Sunset Plumbing, for coming so quickly. The geyser is burst and we need to have the roof removed to install a new one. Fun and games!
We're holding thumbs for Brad and all the FHHS matrics who start writing mock matric this week - good luck to you all.
We count our blessings as we keep Andrew's sister in our thoughts. She is nearing the end of her cancer journey and we pray that she is at peace.
The wild flowers are in full bloom and we have a perfect day in Cape Town. In fact we've had such a huge change in weather conditions from snow almost across South Africa to a beautiful summers day that I thought maybe we had moved overnight!
 |
| Kirstenbosch Gardens last year this time |
Anyhow....I'll backtrack a little. Jimmy had chemo on Thursday and quite interesting to see how his white blood cell count dropped after being nice and high on Monday. They are now down to 3.5 which is 0.5 below the normal range on 4 - 11. Thursday was the end of first cycle so he has today off. We see Prof on Wednesday evening for a checkup and discussion on how things are going. They only do the M protein blood reading at the end of each cycle so I don't think there will be any results in yet. We usually work on results one cycle behind. And then Thursday will be the first session of second cycle which also means he will have The Red Devil again (Doxorubicin). It looks like the huge drop in wbc will be a normal thing after The Red Devil so he will more than likely have to have Neupogen injections again. On the positive, we are definitely starting to run a pattern and at least we know when he is at his best and worst with regards to his immunity.
I will also be cutting his hair short again this week. If there is chance that it is going to fall out, it will probably start during this next cycle. And on good advice from friends in the chemo clinic it is better to shave it short than wake up in the morning with huge chunks of hair on your pillow.
Jimmy has still been doing allot of work from home but definitely much tireder this treatment around compared to the first 4 cycles. He dozes off much more in his chair these days and is sleeping in later in the mornings but on good weather days he still goes for a walk around the block each morning.
It was Fish Hoek High School's Diamond Jubilee celebrations this weekend (60 years). Cheryl and I attended Founder's Day assembly on Friday. I'm not sure if any friends living overseas know if Theresa Booth is following this blog or if you have her on facebook but it would be great if you could get a message to her. Her father Erick was guest speaker and what a good job he did! He had us all in fits of laughter. On Saturday the school celebrated with a Gala Dinner which Cheryl, Maureen and myself attended. Welcome drinks, speeches by the Head Girl and Head Boy from the class of 1964, a 3 course dinner and live music with lots of dancing. The wine was flowing and we got home just before 2am. Any ex school friends - have a look at our Class of '85 facebook page for some photos. There are two lovely photos of Greg Bramwell's mom and Theresa Booth's mom. A very memorable occasion and I was indeed a proud ex Fish Hoek High School pupil.
We had a visit from Will on Friday and from Rohan and Patsy later in the evening. Yesterday was such a beautiful day that we braai'd at Rohan and Patsy's. It was lovely for Jimmy to see Guy and Catherine, Billy and Colleen and Kim again. He really has been itching to get out. Strange how this Multiple Myeloma has become part of our daily lives and on good days I sometimes wonder if he still has cancer. But it is a stark reminder when like yesterday we got home from the braai, and Jimmy had such a good day health wise, and passed out in his chair within 10 minutes of getting home.
I lay in bed last night listening to the drip drip drip of what I was sure was the geyser overflow. We've just had a plumber in, thank you to an old school friend Andrew Lund, from Sunset Plumbing, for coming so quickly. The geyser is burst and we need to have the roof removed to install a new one. Fun and games!
We're holding thumbs for Brad and all the FHHS matrics who start writing mock matric this week - good luck to you all.
We count our blessings as we keep Andrew's sister in our thoughts. She is nearing the end of her cancer journey and we pray that she is at peace.