Tuesday, 28th October

This morning the hospital phoned to say that the medical aid has requested that Jimmy have another bone marrow biopsy before they will consider the stem cell transplant.

A bone marrow biopsy is not sooooooo bad if you can prepare yourself for it and the pain.  This was quite unexpected so we dashed through for his 11:30 appointment.  They always give Jimmy Pethidine about 30 minutes before which definitely helps.  Shame, I think today was an eina one because I heard Jimmy moaning during the procedure.  Jimmy has been having Zobone infusions monthly for the last few months and Prof reckons they must be doing a good job at strengthening his bones.  Yay....a positive!

We should get the results of the bone marrow biopsy in about 10 working days after which Prof will submit his motivation for stem cell transplant again, with the bone marrow biopsy results.  I also asked today if Jimmy's last M protein results were back but they are also still waiting for these, so I will phone tomorrow at which time they can also give me the results of his full blood count today so that we have got an idea of where we stand with regard to his white and red blood counts.

Naturally my mind went into over analysing mode;  Is the fact that the medical aid requested a bone marrow biopsy a good thing or a bad thing?  It is a good thing because this and the M protein reading are both good markers as to how he is reacting to chemotherapy.  Better to rely on both than just one. But it also means that instead of going ahead with stem cell transplant things are now delayed for a minimum of 14 days.  The fact that the medical aid are asking for this means that a specialist at the medical aid is looking at Jimmy's results...I think this is a good thing because we are now not only relying on Prof Novitzky's opinion.  If there is no change in the cancer burden (bone marrow biopsy results) will they say he has to try another chemo first to see if it can bring down the numbers before he has stem cell transplant? And to be honest I could go on and on.....but why stress myself out about this when it is not in our control.

And in case you are wondering......yes, I did look at the calendar again and this does mean that if the medical aid give us the go ahead for stem cell transplant then Jimmy will be in F4 Isolation Ward over Christmas.  I hope UCTPAH has a chimney!

I thought I would add some photos to give you an idea of what a bone marrow biopsy entails.

Monday, 27th October

Another week has flown by...

We spent another weekend away camping, this time we stayed at Gaansbaai.  A lovely, no frills caravan park right on the beach front with nice grassed sites and lovely clean ablutions.  The wind was a bit hectic but from what I have heard it was just as bad at home.  My Mom and Dad joined us for the whole weekend and I can honestly say we came home feeling very rested and relaxed.  Thanks to my parents for a lovely weekend and to my darling husband for great company.

Our site right on the beach front at sunset



Jimmy and I were chatting over the weekend and I brought up how sometimes things are done for no real reason and then they make sense later on.  We went on holiday with Stan and Michelle at the beginning of January when we camped at Camdeboo National Park and Karroo National Park.  While we were there, Jimmy got a bee in his bonnet and decided that we wanted to sell our Bushwakka trailer and buy a 4x4 caravan.  We walked around the park and saw a really nice one, asked the owners if we could have a look at the layout etc and how they found it.  We got back from holiday and advertised the trailer which we sold and bought the caravan.  The strange thing is that if we hadn't sold the Bushwakka we would never be able to go camping now like we are with Jimmy being sick as there is no way I could set up camp by myself.  Jimmy would also not manage climbing up the ladder to where our bed was above the trailer.  I would never have been able to hitch up or unhitch the trailer by myself either.  And the nice thing about camping is that even though Jimmy's counts are low and his immunity is compromised we can go away for a few days and we are never near a crowd of people.  Even having breakfast in a B&B would be a problem if someone else in the dinning room is sick.  Unfortunately I think this will be the last time we can go away until next year as once the whole stem cell transplant process starts Jimmy will either be confined to home or in hospital.  But you never know.....maybe we are lucky and can just pop down to Imhoff Caravan Park in Kommetjie for a weekend at some stage.

We had quite a busy week at home having the alarm system seen to, the irrigation system repaired and all our trees trimmed.  I also spent some more time in the garden.  I've got my work cut out for me this week as there are 2 bakkie loads of wood chips in the driveway waiting to be spread in the garden beds.

We had some distressing news on Friday.  As you know Ilhaam sent off Prof Novitzky's motivation for Jimmy's stem cell transplant on Monday last week.  Well, on Friday she phoned to say that it had been turned down.  This was a huge shock and when I asked her if this was out of the ordinary she said that it was the first case of one being turned down since she has been Prof's PA. She re-assured me and said we must not panic.  The reason given was very medical and she did not know what it meant but has passed it on to Prof.  She says that Prof would never have motivated for stem cell transplant if he thought there was the slightest possibility that it would be turned down and that he will deal with it.  She seems to think that it is something that Prof would have to explain and further motivate.  So now we sit and wait again.  We don't know when he will be finished so that Ilhaam can re-submit and whenever this is we will probably have to wait a week for an answer.  It really is cutting things fine for having Jimmy home for Christmas.

We should, sometime this week, get Jimmy's last M protein reading back and I am keeping everything crossed that these have come down, even if just by a teeny weeny bit.

Monday, 20th October

I really have been slacking at keeping this blog up to date but waiting around for results and answers about what happens next and when doesn't leave much news to update on.

I have spent a couple of days over the last  2 weeks working in the garden and have also started a vegetable and herb garden.  I can't believe how my lettuce and tomatoes have grown in a week.

Jimmy had chemo on Thursday and his white blood counts had come up nicely after the Neupogen injections.  The chemo clinic has been very busy lately and it was the fourth time in a row that I waited in the lounge instead of sitting next to Jimmy.  They were so busy on Thursday that he actually lay down on one of the beds to have his chemo.  We discussed going away for the weekend as we have been itching to go camping with the warmer days that we have been having in Cape Town.  Funny how you definitely know when summer has arrived because the South Easter is blowing a gale.  We got home at 3pm and made the decision that we would go away for 2 or 3 days.  I packed the fridge and our clothes and we pulled out the driveway at 4.10pm.

We had a lovely chilled weekend at Onrus Caravan Park.  We got there quite late on Thursday so I just put of the awning and did the rest in the morning.  We had a good laugh because Jimmy can't really do much more that hold the tent poles while I hammered in the pegs and attached the guide ropes.  I also had to unhitch the van and do all the things that men normally do and we were convinced our neighbours thought that Jimmy had it totally waxed.  All that was missing was a beer in his hand while I set up camp! My Mom and Dad came through from Bredasdorp for the day on Saturday and it was so nice to see them again.  They have both had bad flu and bronchitis so it really has been a while since we have seen them.

Jimmy had his last session on chemo today.  And boy is this a nice feeling.  Unfortunately not for all the right reasons but it still feels good to know that going through twice a week will be a thing of the past for a while anyway.  I had got myself all ready to go and find out what is happening next and when.  We were a bit frustrated that they had gone ahead with the last cycle of chemo after Prof had said he was stopping chemo.  And then on course we didn't know if they would only start the motivation for stem cell transplant after this cycle or only once the next cancer count results come back.  I had my little speech all planned but we received some wonderful news instead.  Prof has in fact already done the motivation and Ilhaam was going to send it off to the medical aid today.  She said it has to go to the board and then in front of a panel and can take up to 2 weeks to get confirmation but she didn't think it would take this long for us because our medical aid works quite quickly with authorisations compared to most.  So we should hear in the next week or so.  Prof then gives us a typed up 6 week plan laying out exactly what happens when for stem cell transplant.  Ilhaam actually showed me what it looks like and on there is listed when the Neupogen injections are to be given to stimulate stem cell production and it also explains which days and for how long Jimmy will be in hospital before he actually goes into F4 (isolation) for the transplant.  This is basically the only period that they cannot predict as it is different for each patient.  It depends on how sick he is, the level of nausea, the level of diarrhoea and if he can stomach food etc etc

The clinic was very quiet today, only us and one other person so we were asking all the questions we could think about with regards to stem cell transplant.  Jimmy's white blood counts have dropped off a bit again but because he will not have any more chemo for now, Prof did not give us a script for any more Neupogen injections as without chemo his white blood counts should come up nicely on their own again.

So now we are looking at the calendar and if things start moving forward for stem cell transplant we really will be housebound from next weekend and are hoping Jimmy should come out of isolation around the 15th of December and be home for Christmas.  Of course we won't hold our breaths as there are endless possibilities for delays along the way.

Today is the start of matric final exams and Brad wrote CAT.  We wish him and all our friends whose children are writing matric everything of the best.  I think the month or so ahead is going to be a bit stressful for learners and parents alike.

Sunday, 12th October

Today's blog is long overdue as I know many of you must be wondering about Jimmy's M protein results.  I must apologise for this but my head has just not been in the right space.

Monday was rest day between chemo cycles and we were supposed to receive the results of the M proteins too.  I phoned a couple of times only to be told that some results had come through but not Jimmy's.  We woke up with knots in our stomachs and spent the whole day anxiously waiting for the results.  We went to bed saying that we couldn't believe we would have to wake up on Tuesday morning with the same feeling all over again.  And this is exactly what happened.  I phoned through to the clinic a couple of times but the results were still not in.  I eventually asked Olivia if she wouldn't mind please phoning us once the results are through as I know how busy they are and I hate phoning and interrupting them while they are giving chemo and bone marrow biopsies etc are being done.  By Tuesday night we still didn't have any results. I did not fall asleep for hours and the last time I looked at the time it was 4:23 am....just too much stuff going on in my head.

We finally got the results on Wednesday.  In spite of knowing there was the possibility that the cancer cell count will not have dropped it was still a huge shock.  It's hard to believe that after 3 cycles of the new chemo there was absolutely no change.

On Thursday morning I phoned the clinic just to make sure that we were not having chemo only to be told that Jimmy does have to do the last cycle.  Of course we were not expecting this and completely forgot that it was first treatment of the next cycle and he would be having Doxorubicin too so with us getting though later than normal it ended up being a long day.  We were a bit disappointed about doing the last cycle as Jimmy's white bloods had come up nicely after having a rest day on Monday and I knew that after the Doxorubicin on Thursday his blood counts would be going one way.  We have had the children here for the school holidays and feel bad that we have not been able to go out or do anything with them.  We were hoping to at least go out for a family dinner over this weekend but the red devil definitely put an end to any of these plans. 

I was talking to a friend about Jimmy having to do last cycle of chemo when Prof had said that if there was no change we would stop chemo and start the process for stem cell transplant.  She said that maybe be wants to do the last cycle because after 3 there has been no change and by doing the last cycle while all the paperwork gets done for stem cell transplant might mean that they are actually stopping the cancer cell count from going up and this does make sense.  The only problem now is that we don't know if he is starting the process now or if it will be after this last cycle.  The difference of course is that Jimmy will or will not be in isolation over Christmas. 

I have very mixed feelings over the results.  If there had been a decrease in the cancer cell count then Jimmy would have completed the 4th cycle of chemo and Prof was going to motivate for another 2 and then do stem cell transplant.  Remembering that the most important thing was to get the cancer cell reading as low as possible as this would mean a longer remission.  But because there has been no change we will be going ahead with stem cell transplant with a higher cancer cell reading. Jimmy will now more than likely have to continue with chemo after the transplant but there is a good chance that his body will react better to the chemo after stem cell transplant.  Unfortunately once he goes into remission this period will now be shorter.  I do know that the one thing Jimmy is feeling happy about is that he will probably be able to return to work in the new year.

Tomorrow the 4th term starts and this is always a hectic one.  Very little school time before the kids start preparing for final exams. And before we know it the term will be over and Christmas will be here.  What a year it has been.

Sunday, 5th October

Jimmy had chemo on Thursday again, the last treatment of the third cycle, so Monday will be his rest day.  He needed Neupogen injections again and this not even after having Doxorubicin.  Again, just confirmation of how low his system is at present.  His body is not managing to recuperate as much as it did before between chemo sessions. 

We have a whole system in place now for getting the injections and we are very thankful to the medical aid, Dischem  Direct and GVI Oncology at Panorama Hospital for all sorting this out for us.  As soon as Dr Fine has done the script Ilhaam emails it through to our medical aid.  They forward it to Dischem Direct who then get in touch with the pharmacy at the Oncology Department at Panorama Hospital, who then get them ready for us to collect.  On Thursday Jimmy hadn't even finished chemo when Panorama phoned to say the injections were on ice and ready for us to collect.

On Friday late afternoon I watched Jimmy get up and walk through to the bedroom supporting his back by holding on to the back of his waist on each side.  I asked him if his back was sore and he said it felt a spit stiff.  We sat down to eat supper at 6pm and he basically had to stand and eat because his back was so sore.  From here it just went downhill.  By 7pm he could not sit, lie on the couch or even stand.  He spent about 40 minutes walking in slow circles around the dining room table and was sweating from pain.  I suggested phoning UCTPAH but he would not hear of it.  By 7:45pm I told him I was going to phone as they would get hold of Prof and then either Prof or the hospital would phone me back and tell us what to do.  I had in the meantime given him 2 of those very strong pain killers he was taking before when his back was so sore but they did not touch sides.  The hospital phoned back with a message from Prof to get Jimmy through to high care asap.  We didn't even pack a bag, I left the girls at home and we left straight away.  Jimmy's back was so sore on the trip through that he was constantly moving and fidgeting in his seat.  His breathing was also very irregular and I had to pull over twice so that he could get out the car to stand for a few minutes to relieve the severe pain.

We got to the hospital just after 8pm and they hooked him straight up to a drip and pumped him full of pain killers.  His blood pressure was 146/126 but the sister said this was a result of the pain.  Prof was on the phone constantly with the sister and she had to keep taking Jimmy's vitals and relaying them to Prof.  Jimmy's pulse is never above 57 and it was 98.  Since his pain wasn't subsiding Prof told the sister to give him Pethidine.  By 10:00pm the pain at long last started to ease and he could actually sit on the edge of the bed.  A little while later he tried to lie down but his body went straight into spasm.  Eventually, at about 10:30pm he was starting to feel light headed and sounded quite groggy and I suggested he try lie down again, which he did and managed to stay there.

They did a whole batch of blood tests and took swabs from every possible place on and in his body.  These were all sent off and came back on Saturday morning showing normal results for everything they tested for.  Prof asked them to do one more blood test and I waited for these results to come in which were also normal and then I went through to fetch him.

Saturday was supposed to be such an exciting day as it was Brad's matric dance and we had been looking forward to going up to the school and at least standing outside for a bit to watch Brad and Jackie arrive.  The girls were in the hall watching the fashion show with a live stream of the cars pulling up to the red carpet outside.  So Jimmy's Dad came to watch Jimmy while his Mom and I quickly popped up to the school to see them.  Brad and Jackie looked absolutely stunning.  I felt very sad that Jimmy had missed out on this occasion but I got some nice photos so he did at least get to see what they looked like.  All the young gentlemen and their ladies looked stunning..

Brad and Jackie arriving at the red carpet.

Well done to Brad who passed mock matric and to Loren and Emma for their brilliant 3rd term reports (we are still waiting for Shannon's results).  These kids have worked very hard and done so well in spite of Jimmy's ups and downs which does put a strain on the whole family.

So now we have a week of school holidays to look forward to which is also a reminder that we should have left this morning for an 11 day holiday in Botswana and on Lake Kariba to celebrate Jimmy's 50th Birthday.

We are enjoying a lazy Sunday and trying to remain as calm as possible knowing that tomorrow we will get Jimmy's M protein results and the big decision as to the way forward with his treatment will be made.