2015/02/27

Friday, 27th February

Day 57 - Stem Cell Transplant

What a positive day....it is so heart warming to see Jimmy improving daily now.

When I got to hospital just before 12:00 Jimmy had already had a shower with the help of the sister.  He had urine is his blood this morning but this was from one blood clot so after lunch they removed the bladder flush as well as his catheter.  His mouth is looking so much better that even Dr Fine was impressed.  He didn't need a platelet or blood transfusion today and no nebulising either.  Dr Fine is very happy with his temperature and they are now weaning him off the morphine, it was reduced to 1ml per hour today, and will more than likely be stopped tomorrow altogether.

He sat up in the lazy boy for quite a long time today again and he was awake quite a bit.  They have already disconnected the one feeding tube and Dr Fine has said that he needs to try and eat something now.  She also said that he must learn to be a bit more independent and she is sure the eating will go better if he feeds himself.  In fact his pole is looking pretty empty without all the bags of this and that and countless tubes. 

This is all that is left on the pole now and if they take down the morphine
tomorrow there will be even less

Jimmy felt very nauseous again this afternoon so Prof has put him back on that tablet that is a R1000,00 a pop.  At this price you would think I can remember the name!  Although he does not have an appetite it is important to get the nausea under control now as he needs to eat.  So at 5pm I handed him the bowl of soup and he ate about half of it by himself.  He also managed half a shake during the day. 

I had a good day today too.  I converted the spare chair into a desk and managed to do 4 hours of bookkeeping.  I'm also looking forward to tomorrow as I am going to see a movie with Patsy and will then head off to the hospital till later tomorrow night.  And now that I have done some paperwork I don't have to feel guilty about crocheting so I will do some more tomorrow.  A couple of the ladies following the blog have asked to see what I am making so I'll post some pictures in the next day or two.

My new office

I hope you all have a fabulous weekend and let's keep fingers crossed that Jimmy will be home soon.

2015/02/26

Thursday, 26th February

Day 56 - Stem Cell Transplant

Not much news today but at least there is no bad news.

They have stopped the bladder flush although it is still connected, I would think they probably giving it a day or so to see how Jimmy goes without it.  He is really looking forward to having his catheter removed.

I got him up after I arrived and sitting in the lazy boy.  He slept a lot today again but it is the first time in a long time that he was awake for at least an hour once I got there and we chatted about various things like I told him that yesterday was the annual budget speech, but I try not to push it as this makes him tired.  I always play along with the Brain of Cape Talk competition that is on the radio and try and see if I can beat the contestants and he opens his eyes when I do this.  He also asked me today what magazine I was reading.

Then we were all set to try some soup for supper at 5pm, as he has still been nil per mouth, but at about 3pm he started feeling very nauseous.  The sister came and gave him something for this which didn't really help.  I told the food lady that he is not up to eating and to leave breakfast in the morning and I would see if I could feed him some soup for lunch tomorrow.  When I left I popped past the nurses station and told them that he was still very nauseous and they said that they would give him something more to try and help this.  Other than this news he was nebulised once today.

 
 
Even one of the more senior nursing staff came to see how Jimmy was doing and told him that he is looking much better.  I don't think he feels quite as better as he is looking because he doesn't get overly excited about comments like this but this will come.
 
 
 
 
 
 
 


2015/02/25

Wednesday, 25th February

Day 55 - Stem Cell Transplant

It was a relatively quiet day at the hospital today.  The general feeling is that Jimmy has gone as low as he will most likely go and now we just wait for him to heal.  It's so nice not having the stress and worry about how much worse things are going to get.

Dr Fine confirmed this morning that his white blood cell count is dropping as was expected without the Neupogen injections, today they are at 3.4.  She basically explained that we don't worry about them anymore now because they will drop and they will also come back up again.  We need to concentrate on the things that must get better now like the Pneumonia which was also better today.  His mouth sores are looking better each day and soon he won't be spiking temperatures as a result of these.  They are working on getting his fluid levels down now.  She also confirmed that the blood in his urine is as a result of a virus but this was clear all day today again and she says that there are only microscopic amounts of blood there now.  As soon as this clears the flush will be taken down and his catheter will be removed.  Jimmy's stomach is still very tender but she says this is also caused by the mucositis.  She said there will be constant viruses as this stage because of the sores and these will affect his stomach but he is on antibiotics so this will run its course.

Jimmy wasn't very talkative today at all and slept a lot but I think this is also good while his body is healing itself.  So from here on I think it is all go, even if it is just little steps.

Wednesday today so Loren and Emma are here, my favourite day of the week and it's not long now and I will have all 3 of my chickens here.  This always makes me feel good.  I have done so much paperwork tonight that I have even shocked myself.  I also just completed my VAT return and in the next day or two I need to start on my financial year end figures.  I have also started going through all the medical bills and was shocked to see that a blood transfusion costs R3000,00 and a bag of platelets is R11 000,00.  We are definitely racking these up!

I am starting to feel a little more relaxed and know now too that as soon as Jimmy is well enough he will be home.  I am looking forward to getting some more nights of better sleep too.

Happy Birthday wishes to Jimmy's Mom for today....the best mother-in-law anyone could ever want.

2015/02/24

Tuesday, 24th February

Day 54 - Stem Cell Transplant

Is it not amazing?......A small glimmer of hope and it feels like half the world has been lifted off my shoulders.  Today is 5 weeks that Jimmy has been in isolation.

If each day can get a litter better like yesterday and today then I can definitely take whatever else gets thrown at me.  I had a lot of paperwork to catch up on this morning and I had to buy dog food.  I must just mention that I am a planner and an over analyser. We have systems in place in this house and for example the new dog food would be bought long before the current one runs out because you never know what happens. It's quite funny actually because the -you never know what happens- drives Jimmy mad.  Well this planning has now gone to the dogs of late.  It's nothing unusual to actually run out of toilet paper, milk, sugar, washing powder, shampoo etc 

Anyway, as I was saying....so I got to the hospital quite a bit later than normal and missed Dr Fine.  I asked the sister about the x-rays of Jimmy's chest and he said that his lungs were much better.  I think I also forgot to tell you all that Jimmy had his last Neupogen injection on Sunday as his white blood cell count was at 4.8 and had been in the 4's for a few days and Prof was happy with this.  Yesterday they were 4.3 and they were 4.3 today again.  In case you have forgotten; they will drop off now that he is off the Neupogen injections and then we wait for his body to bring the counts up by itself.  They added another medication to his IV line today.  If I'm not mistaken it is ASHS which is an immune booster derived from plants.  Jimmy was still off oxygen today, the blood in his urine is clear and he did not have to be nebulised.  He had some platelets today again but didn't need a blood transfusion.  Prof Novitzky and Dr Fine have now both agreed that when Jimmy is ready to eat he can eat.  No more forcing him which just ends up with him vomiting everything he has had to eat and drink, including the food which they are feeding him via the tubes.  I think this has really taken the pressure of Jimmy because I could literally see his face turn green when the tray was brought into his room.

They bathed him in bed again as he is still too weak to get up and stand in the shower and then he settled in the lazy boy and was still there and fast asleep when I left this evening.  He still isn't very talkative but he is responding to me when I talk to him and there isn't so much of that starring into thin air when I can see he has no idea what I am talking about.  Each day the sores in his mouth look a little better.  Today was the first time that he actually slept with his mouth closed and was breathing through his nose as the swelling has come down quite a bit.  Before he could not close his mouth and his tongue was so swollen it was almost too big for his mouth and he would fall asleep and blood and yucky stuff would just run or dribble out the corners of his mouth.  His lips are looking much better too and he only has one ugly sore on the outside corner of his mouth left now, apart from the ones inside.  I believe we have turned that corner now, the next step surely will be watching sport on TV again and you won't hear me complain.

The medical aid are churning out the bills now.  When I have some spare time I actually want to go through them and see where we are standing with regards to cost since April 2014.  Whenever  the medical aid process a claim I get an email confirmation of it with a copy of the account.  Sometime earlier in this month I received 72 emails in one day with the average account being about R2000,00 and then there were a good 4 or 5 that were over R10 000,00 each.  This morning was another one of those days where we received a whole lot of accounts from the blood transfusion department for claims between the 10th and 20th of February and these amounted to R90 000.00.  We haven't even received any bills from Prof or Dr Fine yet and will only receive the account for the hospital once Jimmy is discharged.  Scary stuff!  If you are on a medical aid make sure you are covered.


Jimmy fast asleep in the lazy boy - his face even looks
more peaceful when he sleeps now.
Night night
xx

2015/02/23

Monday, 23rd February

Day 53 - Stem Cell Transplant

Today was a bit of a funny day with not much information about the Pneumonia and generally up and down.

Jimmy had some porridge this morning for breakfast but when he had soup for lunch he brought it up so was put back on nil per mouth for the rest of the day.  We rinsed out his mouth, first with water and bicarbonate of soda, then antiseptic mouth rinse and then the coconut oil.  The coconut oil definitely seems to be helping his mouth sores.  I managed to convince him to sit in the lazy boy which he did for 4 hours.  Although he slept the whole time the main thing is getting him in a more upright position for his lungs.  It's quite a rigmarole  getting him the 3 steps from the bed to the chair as for one he is very weak and the other problem is that he now has two poles full of drips and bags and medicine.  There are at least 8 pipes leading into him somehow or another.  I have figured out how to change the plugs on the different machines when their batteries go flat so this is a help as not all the wires can reach the plugs from the lazy boy so I rotate them.

I chatted to Dr Fine this morning.  Although Jimmy had x-rays yesterday there wasn't a radiologist available to look at the results.  Prof had a look at them yesterday morning and suggested a CT scan today.  But this morning Dr Fine said the radiologist would have a look at them and decide if it was necessary for a CT scan.  The other problem is that if there is too much fluid on his lungs nothing more would show up on the CT scan so they were waiting to hear from the radiologist as to basically if she thought a CT scan was necessary, or whether they had to get some more fluid out his system first and Dr Fine was of the opinion that the latter would probably be what they would do and then he would have another x-ray to see if there was any difference before they booked him for a CT scan.  So they gave him the medication to get rid of fluids but then he had to have some platelets and a blood transfusion.  The blood transfusion takes about 3 hours so they could only carry on with the meds to get rid of the fluid once the blood transfusion was finished.  When I left just after 5 they were still busy with this so I would think that if he does have to have another x-ray it will only be in the morning.

He was also back on oxygen again this morning when I arrived but he came off this during the course of the morning and they only nebulised him once today.  There was quite a bit of blood in his urine again but this seems to come and go.  Dr Fine also explained that the temperatures that he is spiking are still as a result of the sores in his mouth which I have to say are looking a little better each day.

I think there will be quite a change in Jimmy once he can come off the morphine or at least down to a much lower dose.  He is still not very talkative but he does talk a little every now and then which is better than he has been in a while.

Let's hope that we are nearing a turning point some time very soon.

2015/02/22

Sunday, 22nd February

Day 52 - Stem Cell Transplant

It seems that the dark clouds just don't want to blow away.

Jimmy woke up this morning complaining of chest pains so they did x-rays of his chest and he has got Pneumonia.  Unfortunately Dr Fine did her rounds very early this morning so I missed her.  I do not know how bad it is but the sister did tell me that he will be having a CT scan tomorrow.  I also don't know what they will be scanning or why.  Apparently he spiked temperatures right through the night.  He also had quite a lot of blood in his urine again.

Apart from this I actually thought that Jimmy was a bit better today.  He still slept a lot but when I got there the TV was on so he must have been watching the cricket.  I managed to get him to have about a third of a bowl of soup for lunch and he had quite a few sips of juice today.  He also spoke more today than he was for quite a while.

He didn't really react when the sister was telling me about the Pneumonia and when I left he said "so we getting there".  I agreed and said yes we are but I am not too sure whether he knows he has Pneumonia.

I'm going through to the hospital at my normal time tomorrow morning and although I won't see Prof Novitzky and will see Dr Fine and have a chat with her and find out what is happening.  Hopefully the news is not too bad.

2015/02/21

Saturday, 21st Fenbruary

Day 50 & 51 - Stem Cell Transplant

Apologies for not blogging last night but Jimmy did not have a very good day and I felt so down when I got home.  Funny how it doesn't matter how old we get but there are still times that we need our mothers.  I phoned mine and had a good cry, I think more from exhaustion than anything else.  I did feel much better afterwards :)

Jimmy's energy levels seem to be completely wiped out.  I got to the hospital at 11:00am on Friday and he woke up a little while later and said hello and then dropped off back to sleep.  At about 3:00pm he woke up again and asked me to pass him his juice, had a sip and went back to sleep.  He had nothing to eat, basically one sip of a drink and slept the rest of the time.  He didn't even wake up when they nebulised him.  He is also back on oxygen again.  Dr Fine came to see him and was just starting her examination when she had to go to the nurses station for an emergency call and never came back so I couldn't actually chat to her about Jimmy either.  His white blood cell count also only came up by 0.1 from 5.2 to 5.3.  I think this virus that he has, has knocked him quite badly.

I didn't go through to the hospital this morning as Loren and Emma are here for the weekend and I had a couple of things to do and some errands to run like trying to find a battery for our garage door motor which has now died. 

The girls both had things on this afternoon so I went through and got to the hospital at 4pm.  Not very good timing as I had to wait till 5pm before I could go in as they were working on the Hickman pipes and the environment has to be very sterile.  Jimmy was sleeping and not long after this they brought him some soup so I woke him up to feed him.  He managed about 10 spoons of soup, probably half the bowl, without vomiting.  He had some juice and then went back to sleep.  Just before 7 I woke him up again to tell him that I am going to go home.  I felt very bad but I had a splitting headache and really am feeling tired all the time.  Of course the first thing he asked me is what time will I be there tomorrow morning so I promised that I would be there at 11:00 and spend the day.  He apologised for sleeping so much but said he just feels so tired and sick all the time.

I did ask the sister what his white blood cell count was today and she said she would come back to me with the exact number but it was 4. something but I didn't see her before I left.  Very disappointing as this means it has dropped again is spite of still being on the Neupogen injections.  I suppose this is the 'trend' that they are not looking for before they stop the injections.  I did see this evening that his is off oxygen again but he is still being nebulised.

So actually not that much news to tell.  He was doing so well on Wednesday and Thursday and all progress since then seems to have slowed down quite radically.  But I suppose the body knows what it is doing and maybe he just isn't ready for the big jump yet.

Again, a big thank you for all the support, specially on the dark days.  Loren and Emma have also been feeling a bit down in the dumps, its been a very long road and I think we all thought that he would be much better by now, possibly even discharged.  Thanks girls for the lovely messages that you send Uncle Jimmy, he really does appreciate them.  Thank you to Colleen and Billy for the yummy meal you dropped off this week....10 months on and you still looking after us.....and the same goes to Rohan and Patsy too, the girls and I are looking forward to some of your delicious home made Chicken Curry tomorrow night.

2015/02/19

Thursday, 19th February

Day 49 - Stem Cell Transplant

Jimmy was not quite as good as yesterday but still much better.  His white blood cell count was at 5.2 this morning.  Yiippppeeeeeeee....Dr Fine says probably another 2 days on Neupogen injections and then they will stop.

He only needed platelets today and they have had to put him back on oxygen again.  Last night they also removed the catheter and inserted another one as it kept blocking up.  Jimmy says there was a blood clot the size of the top of his finger stuck in the tube.  The 1st catheter they put in was size 16, they then changed this to 18 and the one he has in now is a size 20.  Don't worry, it doesn't mean much to me either, must be the size of the tube.  The also put up a huge bag of something today which will run continuously to flush his bladder.  This also helps to get rid of any blood clots that are in his bladder.  By lunch time today his urine was looking almost a normal colour.

Jimmy wasn't much in the mood for food today so he agreed with Dr Fine that he would have two shakes instead of soup for lunch and supper.  She was actually happy with this as they are higher in calories because his weight is staring to come down now.  He weighs just more than when he was admitted but he still has quite a bit of fluid retention so I am sure his real weight is now below.  Just before I left I moaned at him and reminded him that he hasn't even finished one shake today.  He tells me it's not his fault they didn't bring him food! I wish you could see his face at the mention of food so this was a very quick come back.  I went through the whole conversation with him that we had with Dr Fine and made him promise me he will have another shake by the time he goes to sleep tonight (this was a bit of a con as he slept most of the today again) and then tomorrow morning I will order him soup and jelly for lunch and supper.  What's the bet he tells me tomorrow when the soup comes that he would rather have a shake?

The sores in his mouth are still very painful in spite of the morphine but I don't think I can handle them increasing the dose.  They are looking darker now and starting to scab which I think is a good thing.  The only problem being that they are bleeding quite a bit which he doesn't like.  His temperature behaved itself most of the day and stuck around 36.8 and then at one stage it went up to 37.5 but not for very long.  He is still on tons of nausea medication but they seem to have the dosages sorted out.  He is still feeling nauseous but he can handle it.

I am looking forward to next week when he feels stronger and can sit in the lazy boy and we can watch some movies together again.  At the moment he is either sleeping or starring very dazed at the wall but I am very happy that he is at least speaking a little every now and then.

2015/02/18

Wednesday, 18th February


Day 48 - Stem Cell Transplant

What a difference in Jimmy today.  He was much more alert and awake more of the time too.  Unfortunately we are having catheter problems again as a result of the blood in his urine.  It keeps clotting and forming a blockage in the pipe and then the urine by-passes the pipe.  He was getting very frustrated with this today.

With regards to the  virus that he has, which is causing the blood in his urine, they have sent a specimen off the lab but Dr Fine says in takes a couple of days to get the results.  His temperature never went above 36.8 today and they also took him off the oxygen as he is maintaining a level of 95 without it.  He needed another platelet and a blood transfusion today but Dr Fine says this is normal as the Neupogen injections are suppressing these counts from coming up.  It isn't anything they are worried about as even when it is time for him to be discharged, he will just continue to go to the chemo clinic for the transfusions until these counts reach the correct level.  His white blood cell count jumped to 3.6 this morning which we are very happy about.  Ecstatic actually!

Jimmy's mouth is still sore and he is still on morphine for the pain but his tongue is looking a lot better.  There were moments in the day when he spoke absolute sense and others where it was definitely 'morphine talk' again.  After rubbing cream onto his back, arms and legs which are peeling (also from the chemo) he asked me if the room was full of people.  I told him that it was just me and him there and he said it feels like there are a lot more people in the room.

He was quite rude to some of the staff today, which I found extremely embarrassing.  At one stage I actually told him to just try and relax and let them do their jobs as they know what they are doing.  He was moaning at them and telling them how to do their jobs and complaining about the order in which they were doing things like cleaning and rinsing his mouth.  But later on, when I was in the first little room off Jimmy's room and the door was closed the sister told me not to stress about it because it is the morphine.  She said they are quite used to it and don't take any notice.  Apparently one of the other patients swore at Prof in Afrikaans and told the male nurses and sisters they are all moffies. 

Jimmy drank quite a bit of liquids today and even managed about 5 soup spoons on soup at about 2pm.

I left early today to be home by 4pm so that I could meet up with Loren and Emma at school and support the indoor hockey match.  It's so nice to have them sleeping over tonight and they'll be back in two days for the weekend which I am really looking forward to, specially now that I know that Jimmy is a little stronger and I can spend a little more time with my girls.

When I left Jimmy and said goodbye and I love you like I do every day he replied to say I love you too and drive safe.  Just one more sign that my Jimmy is slowly coming back.

2015/02/17

Tuesday, 17th February

Day 48 - Stem Cell Transplant

We had another setback today but also some positives, so I'll start with the positive news.

Jimmy's tongue wasn't as swollen this morning as it was yesterday.  His mouth was bleeding more today and he still finds it difficult to talk.  His white blood cell count has come up to 2.6 from yesterday's 2.3.  He was awake a little more today than he has been for the last few days too.  And he has a lot of phlegm in his mouth all the time which is good because this means it is working out from his lungs.  His breathing seems much more 'gentle' today and he managed sips of water and juice.  His temperature also never went above 38.  Touch wood,  no vomiting or diarrhoea.

Jimmy had a lot of blood in his urine this morning and they are concerned that he has a virus.  They have added another antibiotic to the 2 that he is already on and also inserted another catheter so that they can accurately monitor how much urine he is passing and what the blood content is.  They used a thicker pipe this time as the last catheter ended up having a blockage.  They also took a urine sample and have sent this off to find out what's going on.

He didn't need a blood transfusion today, only platelets.  They upped his oxygen again and he is still on morphine.  I actually thought he was getting his sense of humour back at one stage because I finished crocheting another purse and showed him and he asked me if it was a hand grenade.  It was only later that I realised when he said something else that he was just staring straight ahead and when I asked him about it, he had no clue what I was talking about.  The joys of morphine.

In spite of the virus I have definitely seen a slight improvement in Jimmy today.  What would be nice is if his pain could ease off a little tomorrow so that they can reduce his morphine dose.


The blood content in Jimmy's urine

To all those who follow this blog from far and wide.....today was a beautiful day in Cape Town.  32 Degrees.  I came home to a stunning sunset, the sun is setting at about 7:45pm now.  From our lounge and stoep area we have a perfect view of Long Beach.  In winter the sun sets on the right hand side of the beach behind Chapman's Peak and in summer it sets on the left hand side going down over Kommetjie.  I noticed this evening that she is creeping along and midway now which sadly means we are getting closer to our winter sunset.





2015/02/16

Monday, 16th February

Day 47 - Stem Cell Transplant

I do so look forward to my first blog when I don't have to add this heading and stem cell transplant is all behind us.

Jimmy's mouth and specially his tongue is very swollen today.  He is barely managing to sip water.  I got a message last night to bring organic coconut oil to the hospital today which they used during the day to spread over his tongue, lips and gums.  Because he cannot eat or drink they are going to continue to feed him via the tube in his nose but when I left they were going to hook up another line and feed him additional nutrients via the IV line.  He is still quite bloated but they are worried that he will have lost too much weight by the time they flush the last of the fluids and I know this is a concern as he will not be discharged until he is at the weight he was when he was admitted, or as close to it as is healthily possible.

They upped his morphine today to 10ml per hour and although he can't speak he is having funny dreams and talking funny things when he wakes up.  One of Jimmy's pet hates is if I tut and he opened his eyes today and asked me why I am tutting.  It is very hard to understand him as he is talking around his swollen tongue but I told him that he must have been dreaming.  I actually don't know how he is managing to breath properly.  His nose is full of dried blood and he has 3 tubes going into his nostrils and his tongue is so swollen that he cannot close his mouth.  I can't think that there is much space left for any air to get in but he is managing.

His white blood cell count is coming on in leaps and bounds which is such good news.  The reading of 1.2 must have been correct over the weekend because this morning they were at 2.3.  It is good that his immunity is building up as it will help fight any infection that he could get from the sores in his mouth.  Although he was zonked out most the day today he was in bed and in an almost upright position which I am very happy about as he needs to make sure he is using the bottom half of his lungs in order that he does not get Pneumonia.

I though I would give you a tour of the hospital.



This is the tunnel that connects the entrance of the
building with UCTPAH


The entrance to UCTPAH

This is the entrance doors to F4 Isolation ward which is
a protected environment.  You get buzzed in.

And this is the 2nd set of doors but these are used to exit by.  To the right are
the cubicles where you change into theatre clothes and wash your hands and then
you come out a side entrance on the other side of these doors.  Jimmy's ward
is the first one on the left hand side on the other side of these doors.

Yesterday was 10 months since Jimmy was diagnosed and tomorrow will be 4 weeks that Jimmy has been in isolation already.  All that's left to do is be there for company and keep him re-assured that everything is and will be okay,  trust in the fantastic medical staff who are doing a wonderful job, be positive because this way Jimmy is more positive and pray for healing.

2015/02/15

Sunday, 15th February

Day 46 - Stem Cell Transplant

Each day I get home from the hospital I think to myself that today has to have been the worst day so far and then the next day is even worse.

Prof Novitzky did his rounds a bit later this morning so I was there when he came to see Jimmy.  He had a look at Jimmy's mouth and then let me have a look with that thing with the light.  You have no idea how bad it is.  The whole roof of his mouth is one big scab and he has sores all over and his tongue is also covered and there is a lot of pus.  Prof said that what we see in his mouth carries on down the throat and his colon.  He explained that it is Mucositis and occurs when cancer treatments break down the cells lining the gastro-intestinal tract which goes from the mouth to the anus, leaving the mucosal tissue open to ulcers and infection. The mucous membrane lines all the passages that communicate with air.  The part of this lining that covers the mouth is one of the most sensitive parts of the body.  He says is it one the most debilitating complications of heavy dose chemotherapy and the pain is excruciating.  This can last for between 1 week and 6 weeks depending on the severity and Jimmy is at high risk of other infections now as a result of these sores in his mouth.  The vomiting and nausea is a side effect of the Mucositis.  He prescribed Morphine for the pain and they upped the dose later in the day.

The sisters bathed Jimmy and changed the bedding while he is in bed as he is too sick to get up, talk, drink or eat.  The morphine made him sleepy and he was having funny conversations in his sleep but hopefully he will actually get a good night's rest tonight.  They also come every couple of hours and clean out his mouth with little sponges attached to the ends of plastic sticks dipped into something and he is on medication for this now too and the sister says that by tomorrow lunch time his mouth should start to feeling better. He still continues to get platelet and blood transfusions every day.

I must say that in spite of Jimmy's condition I felt much better today and more positive again.  I think I have been quietly panicking for the last 2 days that Jimmy is giving up the fight but I realised today how sick he is and there is no point in trying to make him eat or sit up etc.  They increased his oxygen as his levels were low again today and also nebulised him more often to help his lungs.  The brilliant news is that his white blood cell count has come up from 1.2 yesterday to 2 today.  I just hope this isn't a mistake as the readings done on the weekend are not as reliable as when Dorothy does them during the week. If correct then this means his immunity is building up again and will definitely be a help in fighting the Mucositis.

Get better soon Jimmy

Megan FaceTimed me while I was with Jimmy and although he just half heartily smiled at her she was able to see him and talk to him, tell him to be strong and send lots of love.  Shame, she was very upset afterwards and cried.  She is really looking forward to coming home in 32 days (we are all counting now), even though it's just for a short while.  I can't wait !

2015/02/14

Saturday, 14th February

Day 44 & 45 - Stem Cell Transplant

Nothing much new to tell you tonight.  Jimmy is just so sick.  On top off everything he is now vomiting when he tries to eat, he actually managed to vomit his feeding tube right out his stomach and they had to put another one in.  So today he has had nothing to eat.  His mouth and tongue are now completely covered in sores and by this afternoon he couldn't even talk.  Since Thursday his white blood cell count has come up by 0.2 to 1.2.  His temperature hit 37.8 again this afternoon and he has hectic stomach cramps and slept the whole day today.

I took him a Valentine's Day card and a chocolate that says I love you and arrived full of smiles telling him that as soon as he is allowed he can eat the chocolate.  He tried to smile back at me and managed to say that he will look at it tomorrow.

2015/02/12

Thursday, 12th February

Day 43 - Stem Cell Transplant

I think I'll start with the happier news first.  Emma and I attended another lovely RAGA awards evening and dinner (Raymond Ackerman Golf Academy).  Well done to everyone on their hard work and achievements.  I was a very proud mom as Emma received 2 awards; one for being the most enthusiastic participant in all activities at RAGA and the other for enthusiastic and practical implementation of the like skills education received at RAGA.  I also received an award in appreciation of being the member of Clovelly who was most supportive to the students of RAGA, as voted for by the students.  You guys truly rock and I look forward to when everything gets back to normal on the home front and I can become more involved and give more of my time.  Thanks also to Pete for his special message in wishing Jimmy well with his treatment and recovery.



My poor man is really battling along.  I managed to shower him this morning again but don't know if this is really worth it as he is basically buggered for the rest of the day.  It takes so much of his energy.  I just think that when you sick you always feel better if you have a nice wash and the sisters change his bedding while I shower him and I hope this helps a little to make him feel more comfortable.

I arrived loaded with tinned foods and he managed a couple spoons of spaghetti in tomato sauce for lunch and a tiny bit of chicken noodle soup for supper.  I also bought tinned fruit cocktail so maybe we'll try this with custard for lunch tomorrow.  When I first started buying him juices because he didn't like the taste of the hospital ones he raved about orange juice.  Then he didn't like orange juice and wanted red grape juice. Each time I stock up on what he likes he changes his mind.  Today I poured some juice into ice trays and put them in his freezer, we'll have to see what he thinks of this idea tomorrow.  Allot of the time he complains that things are bitter and today even the water tasted funny to him.  I think this is half the problem when it comes to anything that he eats or drinks.  His mouth is very dry all the time but today he had to cut down on drinks because they were trying to flush some more fluid from his system.  He is also battling terribly with the sores in his mouth.

Jimmy had a lot of blood in his urine today.  I don't know where it is coming from but bleeding is also one of the side effects of the chemo, his gums and nose are also bleeding quite a bit.  He sat up in the lazy boy for a nice long stretch today, although he slept most the time, but the main aim is to not have him lying down all the time, to get his lungs functioning and work the fluid off his lungs.  He had another platelet and blood transfusion today and Dr Fine said the blood transfusion might help to make him feel better.  He is still fighting the infection and he had a temperature spike of 37.8 today again.  And I really don't know what is going on with his white blood cell count but these have now dropped to below 1 even though he is still on Neupogen injections.  Hopefully by tomorrow he will be over the diarrhoea, it did seem a little better today.  They are still nebulising him during the day and Jimmy is still on oxygen 24/7.

So, at this stage we really are taking it day by day.  It was terrible to see the disappointment on his face when he asked the sister what he temperature was and when I left this evening he actually said he is sorry he is not getting better.  I so wish I could wave a magic wand.

I must be sounding like a stuck record by now but thank you so much again for all your messages of support, love and encouragement and for the hugs I get when I bump into you.  As tough as this journey has been one very important blessing has been our friends.  I never knew how lucky we are and I know I would never have made it this far without you all.  You have all rallied around us and I wish there was a way of showing my appreciation.

Tomorrow morning I have to get up and face another difficult day but tonight I go to bed with a very warm heart. 

2015/02/11

Wednesday, 11th February

Day 43 - Stem Cell Transplant

Apologies for a very quick update today but I have Emma's golf prize giving to attend with her in a while.  Looking so forward to this as it will definitely be a change in scenery and it's always nice to be proud of your kids. 

Jimmy was in much the same space as yesterday.  His mouth, throat and colon sores have come back and so has the diarrhoea.  It is impossible for him to eat the hospital food.  Apart from the taste and he is not being fussy, his taste buds are playing havoc with him, he can't handle the consistency.  So I have just been to woollies and bought tinned soup, custard, tinned spaghetti etc.  Dr Fine said anything that does not have live cultures is okay so things like yoghurt are a no no.  The kitchen lady said to pack his cupboard and she will ask him each morning what he wants and will prepare it for him.  I am hoping this will get his appetite back.

His white blood cell count is stuck at 1 at the moment and I am a little concerned as his nose is stuffy and he has a little bit of a cough but Dr Fine said they will watch this.  I managed to get him up and showered him and then he sat in the lazy boy for an hour sleeping.  It is better for him to be sitting rather than lying in bed slightly lifted to try and get the fluid out his lungs.

2015/02/10

Tuesday, 10th February

Day 42 - Stem Cell Transplant

I have had an absolute day from hell!

Jimmy is down in the dumps and cannot deal with the fact that he has no energy and is so tired all the time and doesn't feel well.  He was very bloated again this morning so they gave him something to flush some more fluids out.  He has blood in his urine but Dr Fine says this isn't an infection, it is trauma from the catheter and should clear up in a day or tow.  The sister and I managed to get him up to have a shower but he is so weak he can't even dry himself and he slept for 2 hours afterwards.  I fed him soup for lunch and I tried to give him the fish for dinner but he kept gagging.  He can only manage minuscule pieces at a time and probably had a table spoon all together.

The good news is his temp is still around the 37 mark and his white blood cell count came up by 0.1 to 1 today and the sores in his mouth, throat and colon seems to be getting better. He is still having a platelet and a blood transfusion each day.

I realised last night that I had not renewed our post box for 2015 so went down to the post office to do this this morning and get Jimmy some more bottles of water as he doesn't enjoy the taste of the hospital bottled water.  My mind was a million miles away and as I pulled into the parking I hit the car parked next to me in the passenger side parking.  I left a note with all my details and an apology with the car guard to give to the driver.  The lady phoned me this afternoon and thankfully she didn't bite my head off and said these things happen.  We are both insured so tomorrow morning I need to go down to the police station to get a case number and then report it to the insurance.

I got home at 6:30 in the middle of load shedding which was from 6:00 to 8:30 pm and couldn't get into the house because the garage door would not open.  I am presuming that the battery needs to be replaced as it is not strong enough to open the door when the electricity is off.  So I went down to my brothers house to sit out the load shedding and have a cup of coffee as they have a gas stove.

The lights came on early at about 8:10 so I came home and I could hear the sound of water gushing with quite a strong pressure in the back garden.  The flipping irrigation system is playing up again and the fitting has blown off the tap which is permanently on as it is a dedicated tap for the irrigation system and water was spraying everywhere and the whole back lawn is one big puddle of water.  Who knows how long this has been running for?  There goes our water bill!

And there I was thinking that sitting in the traffic for over an hour on my way home from the hospital was a problem.  This was actually the easiest part of my day.

It's a long day at the hospital each day and it's tough trying to keep a brave face for Jimmy's sake. The shocking thing is that I even feel irritated sometimes while I am at the hospital.  I am running my life in the hours at night when I get home from the hospital and this is very difficult when there is load shedding and I can't answer all my business emails etc.  I can't remember when last I had a proper meal but the thought of food just doesn't do it for me because I have coffee and a muffin or something unhealthy crap on the run.  I am missing having Jimmy at home and I am missing having a home because it doesn't feel like home.  I see him every day at the hospital for hours but it is not the same.  I wonder when this is all going to end and we can actually get back to a little normality?  I mean it's not like an appendix operation where you know there is a 100% recovery rate and in 6 weeks you pick up your life where you left off.

I know....I am feeling sorry for myself and the worst thing about it is this makes me feel so guilty because the things I complain about are nothing in comparison to what Jimmy is going through.  I know tomorrow will be better, I just hope Jimmy feels better tomorrow.

2015/02/09

Monday, 9th February

Day 41 - Stem Cell Transplant

Yesterday (Sunday) Jimmy seemed allot better to me than he did the last few days.  The sister also told him he was doing well but he told me he doesn't feel very well at all and doesn't know why they say that.  I think he is just gatvol.  His lips are very dry and blistered and his skin is very sensitive and a darker shade (another side effect of the chemo).  He is having a hard time with the catheter as it seems to keep by-passing which causes a huge mess and this makes him panic which causes a further mess.  I am trying to put this as delicately as possible.  I feel so desperately sorry for him as this is so humiliating but once again the staff are superb.  He has been taken off the adrenaline as they are happy with his blood pressure, still slightly low, but not dangerously so anymore.  His white blood cell count was at 3.5.  They have tried a couple of times to take him off the oxygen but he is not ready for this yet and he had another platelet and blood transfusion yesterday.  His bloating has come down quite a bit which means the level of fluids in his body is now less, in fact he has lost 3kg but still weighs more than when he was admitted.  I fed him soup for dinner last night and he almost managed to finish a bowl.  And now I am trying to remember what his temp was like yesterday but the old memory is failing me.

I knew he was in better spirits this morning because I received a message from him reminding me to bring him some more shorts and he'll see me at 10:30.  I am not allowed to visit him before 11:00 so there is a glimmer of his sense of humour.  When I got there this morning his temperature was 35.9 but it did rise to 37 something and then stabilised at 36.4 during the day.  They are still a bit worried about the oxygen levels in his blood so apart from being on oxygen all the time, they nebulised him today too, which helped a little.  We had another accident with the catheter this morning so they removed it and are quite happy that he is able to feel when his bladder is full.  It is also not so important that they measure to the ml the amount of fluid he is passing.  Some disappointing news is that his white blood cell count dropped from 3.5 to 0.9 but Dr Fine said this is not uncommon and will be due to the infection and high temperatures so they'll carry on with the Neupogen injections until they reach 5 and then it's up to his body to produce stem cells on its own. 

He is still being fed with a tube and Dr Fine explained to him today that this only accounts for 50% of his food intake so he needs to make an effort to eat.  He had Weetbix for breakfast and I fed him another bowl of soup for lunch and some more soup for supper.  Tomorrow he is going to try some fish and vegetables.  I'm so glad I don't have to eat that food.

Jimmy was disappointed about his white blood cell count as he was hoping to come off the Neupogen injections by tomorrow and of course this means a delay again (Jimmy is running to a clock and wants to be out of there on the 18th) but he really still is not well and I tried to explain to him that it does not help trying to rush things.  He hasn't mentioned his mouth or throat being sore today and it also looks like the different doses of different nausea medication is at last working.  He only complained about not feeling well while he was having a blood transfusion today.  Later this evening he'll have a platelet transfusion.  He was very sleepy today again but I am sure this is because of his blood counts.

Tomorrow we hope he will be allowed up to have a nice shower and maybe he will be in the mood to watch a movie.  I wonder if he is allowed popcorn?  hehe

2015/02/07

Saturday, 7th February

Day 39 - Stem Cell Transplant

Yesterday Jimmy was much the same as Friday and he slept most of the day.  He kept complaining that he was feeling really sick.  They had given him a platelet and a blood transfusion and thought that it might be the platelet transfusion that was making him feel so bad.  They ended up giving him a Pethidine injection and this made him very drowsy.

Loren and Emma are here for the weekend so we got take-aways for supper last night and then the 3 of us watched a DVD on my laptop in my bed during the load shedding which was between 8:00 and 10:30.  Needless to say we all fell asleep and had no idea how the movie ended.  For those friends following the blog who live overseas; basically SA does not have enough electricity so they switch it off for certain times during the day and night.  This is called load shedding.  There are 3 stages - 1 being twice a week, stage 2 being once a day and stage 3 is twice a day.

The girls and I popped through to Blue Route Mall this morning to pick up a couple of things they needed and get Jimmy some juices and then I went through to the hospital.

Jimmy was a bit better today.  His temperature has come down and seems to be hovering between 36.6 and 37.2.  He only had one of those terrible shaking fits, as I call them.  He had another platelet transfusion and he was going to have a blood transfusion later.  The sister said they were going to turn the adrenaline off later and see if he can cope without it - this is keeping his blood pressure up as it is still very low.  They are still feeding him with a tube but he managed two tablespoons of jelly today (yesterday was two teaspoons) but his throat is still very painful from the sores he got as a result of the chemo. We hoping that he will manage some soup for supper tonight.  He slept allot today again but not nearly as much as yesterday and chatted a couple of times too asking me all about the crochet I was busy with.  Shame, I think he feels bad that he sleeps so much because he very proudly reminded me that he did not sleep as much as yesterday.

I do believe that the worst is now behind us.  Well I am really holding thumbs.  His white blood cell count is at 3.5 today and the sister said that Prof had told them they can stop his Neupogen injections when his WBC reaches 5.  His heels are very sensitive from being in bed for so many days so I rubbed some Aqueous Cream on them.  As soon as his blood pressure is back to normal then he will be allowed to get up and sit in the lazy boy again.

Tomorrow I'm going to spend the day with my girls and I'll go through to the hospital at 3pm.  I need to plan ahead so that I can tell Jimmy when I will be there and I have also found that it works better if I warn him about an hour before I am going to leave that I will be leaving in an hour otherwise he asks me to stay longer.  The days have been terribly long at the hospital but I have now got used to the traffic so this isn't such a schlep anymore.  I can't believe that today is day 19 already!

Thank you for your lovely messages, comments on the blog and emails.  They mean allot to us both and sometimes they arrive at just that moment when I am feeling very tired and down - a kind of pick me up.

2015/02/05

Thursday, 5th February

Day 37 - Stem Cell Transplant

Jimmy is not well and feeling very down now too.  He still has all the same symptoms as yesterday and his temperature is still spiking at 39.

Today they gave him adrenaline to try and bring his blood pressure up.  They also changed the antibiotic again.  The blood cultures came back showing nothing but apparently they only show up to 50% of infections so they are now treating him for a possible fungal infection as this is basically what has not been covered yet.  Dr Fine was there before me this morning so this is what Jimmy told me, so not too sure how accurate this info is.  I also couldn't ask her about the fluid on his lungs.  They weighed him today and he has put of 5kg.  This is all fluid and he is extremely bloated and puffy.  They are rubbing Aqueous Cream onto his back, the back of his left and heels as this will help prevent bed sores.  He has a terrible rash in his groin area and also started with sores in his mouth and down his throat today.  They are giving him painkillers for the pain in his bones but they crush them and make them into puree and then inject this into the feeding tube that goes in his nose as he can't even swallow a pill.  They are also still giving him the injections to flush some of his fluids but these give him a huge headache and make his heart race.

His white blood cell count is at 1.9 today which is very good news but this ray of hope has also been dashed now as the sister explained to me that although it is good because it means that his stem cells are grafting but this mainly due to the Neupogen injections.  Once his white blood cell count reaches 3, or about there, then Prof will tell them to stop the Neupogen injections and then Jimmy's body will crash again.  The next big step will be waiting for his body to build up the white blood cell count on its own.

He slept almost the entire day today and hardly said 2 words.

2015/02/04

Wednesday, 4th February

Day 36 - Stem Cell Transplant

I am starting to see slow little steps of progress.

When I got to the hospital this morning I was quite shocked to see how bloated Jimmy was.  He looked like he had put on 5kg, this is as a result of the fluids he is getting.  So during the morning they slowed this down and then a bit later they gave him something to flush someof the fluids in his body.  There is quite a fine line between the antibiotics and fluids and getting the right amount in and out.   They also inserted a catheter.  He came off oxygen for about an hour but had to put him back on again.  His temperature was still 39+.

Dr Fine came to check on him and said she could here fluid in his lungs and wasn't sure if this was due to all the fluids in his body or from a possible infection and they would only know once some of the fluids had been flushed from his system but they were treating it as an infection to be on the safe side.  His blood pressure is still very low too so now he is not allowed up at all.  Dr Fine said that he should start feeling better in the next 3 days.  Let's hold thumbs.

He slept quite a bit today again but he was definitely a little bit more talkative in between.  I think he is starting to drive the sister crazy with all his questions.  He has a cuff permanently on him arm and his blood pressure and pulse etc is automatically read every 30 minutes.  At one stage the Velcro came lose so the cuff wouldn't inflate properly.  He buzzed for the sister and when she came in he asked her if this was normal.  I told him it doesn't mean anything, the Velcro had come lose.  But I think he keeps evaluating himself with these questions.

After lunch time his temperature came down to 38 and seems to have stabilised there.  And his white blood cell count is still on the climb, we at 0.8 today.  Here's hoping for a big fat 1 tomorrow.

I left the hospital at about 3:30 today because my girls are here for the night.  I am now in such a rut of hospital, home, paperwork and then bed that this afternoon actually felt like a public holiday.

And then on top of everything else going on at the moment I had a visitor on the property last night at 11:30.  I was just about to go out on to the stoep and switch off the lights and close up when I heard someone down at the end of our property where the carport is.  Our staffie had run outside and barked at the top drive way about 10 minutes prior to this.  I phone ADT and it took me 10 minutes to explain to lady that I was from San Michel which is in Cape Town and not Johannesburg like she kept asking me.  Then she wanted to know how long we had members of ADT.  I told her about 8 years and could she please hurry up as I am alone at home.  The bakkies with the patrollers were here within 2 minutes of me putting the phone down.  They spent about 30 minutes searching the property and I also called them to go and look upstairs because both bathroom windows were open so they closed them for me and checked all the bedrooms.  They even took ladders out their vehicles and searched all the big trees in our road and said that they would patrol the road during the night for me.  I got into bed and thought I would never fall asleep but I did, with Keira our Staffie on the bed next to me.

Today Maureen went through to Builders Warehouse and bought some security lights and arrived here with her son Garrick and a ladder and drill and put up lights all around the property for me.  A huge big thank you Maureen.  I am truly blessed with amazing friends xx

I know I will sleep safe and sound tonight with security lights and my girls to keep me company.  And my wish is that Jimmy too has a good nights sleep.

2015/02/03

Tuesday, 3rd February


Day 35 - Stem Cell Transplant

Today turned out to be worse and even tougher than yesterday.  My poor man.....

Jimmy has continued to spike temperatures all day, going up to 40.1 at a stage.  We still have the warning of this coming on when his whole body starts to shake.  The diarrhoea seems to have eased off a bit but I was told tonight that this will probably come back again.  They inserted a looooooong tube into his nose and down into his stomach to feed him as he has not eaten since yesterday and only managed one shake this morning.  In spite of not eating Jimmy is feeling very bloated.  They are feeding him at a rate on 10ml every hour.  This will go up.  Due to the high temperatures and his heart over working (every time he spikes a temperature his pulse rate goes through the roof) they now have him on oxygen permanently, this is another 2 tubes also though his nose.  They upped his antibiotics today to try and stop the temperature spikes.  He only urinated once today and they are now worried about his kidneys.  They tested this urine and found traces of ketones which could indicate another infection so he has to sip water as often as possible.  They attached another machine to his pole today which measures his CVP.  If I understand correctly this measures the amount of blood returning to his heart and they do this reading before and after each bag of whatever is transfused into him.  This is probably the wrong terminology but half you wouldn't know that anyway ;) .  Jimmy has now started to get bone pain in his pelvis and the long bones in his legs which is a result of the Neupogen injections.  In between temperature spikes he is sleeping quite a lot, although not very deeply.  He says he isn't sleeping at night and the sister told me they can't give him a sleeping tablet because his blood pressure is dangerously low and the side effect of the sleeping tablet is lowered blood pressure.  I apologise if this all sounds a bit matter of fact and bit point form-ish but there is just so much going on at the moment.  And at last a little bit of good news - his white blood count is now 0.4, this was 0.3 yesterday which means those stemmies are grafting.

A big thanks to all you guy friends who have sent him messages to his phone.  He hasn't even looked at his phone in 2 days so I read them all to him today and he still managed a smile.

Stan and Michelle printed a huge photo of the two of us standing on a wooden walkway in the forest in Natures Valley in January and gave it to me with strict instructions that it had to go on the wall where Jimmy can see it.  Thanks so much, me mentioned twice what a nice photo it is.  In fact the second time I thought he was hallucinating because I had forgotten it was up there.


It really is starting to look like spaghetti junction with all the tubes and bags
 





2015/02/02

Monday, 2nd February

Day 34 - Stem Cell Transplant

Africa is not for sissies but let me tell you, neither is a stem cell transplant.

My Mom phoned me this morning before I left to find out how Jimmy is this morning.  I told her that I hadn't phoned him or the sister yet and as I was telling her I felt so guilty.  I woke up this morning with a nervous, shaky feeling and I didn't want to phone through and be told any bad news.  There is nothing I can do until I get to the hospital and it would've just made my drive through even more anxious, willing the bumper to bumper traffic to move faster.

I had that feeling in my stomach like when you are expecting something to happen.  I got a huge fright when I walked into Jimmy's ward.  He was in bed and shaking terribly and he looked so small and so sick.  His temperature spiked all night and he also has diarrhoea and still feeling very nauseous.  I sat down and it all hit me.  We had both been prepped for this but it still hits you hard.  It is terrible to see the person you love suffering so much and there is nothing you can do.  He was fading in and out of sleep and I just sat there with tears rolling down my cheeks.  I had to control myself so as not have a good blub as I didn't want him to see otherwise he feels bad on top of everything.  He did notice that I was upset and asked me if everything was okay and I said everything is fine.  Dr Fine came in to see him and changed some of his meds.  He is on antibiotics but she said as soon as they get the blood cultures back (tomorrow morning) they will know what infection it is and be able to change the antibiotics as some work better for some infections than others.  She made sure he wasn't in any pain, which he isn't.  She told him that he will be having daily platelet and blood transfusions for a couple of days now and she also told us the good news that his white blood cell count has come up from 0 to 0.3 which means that his stem cells are grafting.

Jimmy has uncontrollable diarrhoea and this is very humiliating for him.  He managed once to get up to go to the loo but didn't make it.  His blood pressure is very low so they have him on fluids all the time and his temperature spiked throughout the day and each time with this terrible shaking.  He didn't eat any of his meals today and only had 1 shake but he did have apple juice.

I asked Dr Fine when they would be doing some more Myeloma bloods to see what his cancer count is and she said they won't be doing any now.  At the end of May he needs to have another bone marrow biopsy and they will use these results to see where he is at and take it from there.  This is a long time to wait....you would think we were used to this by now.

So all in all not a very good day for Jimmy.  I found it very exhausting and emotional but I know he is in the best place and being taken good care of.

I hope he has a better night's sleep tonight and his temperature breaks so that he can start getting better soon soon.

This is what a bag of platelets looks like
And this is a beautiful photo they have on one of the walls in the hospital of a wild flower scene.  I took this a while ago but keep forgetting to upload it.
Today when I walked past this wall I did wish that I could step into the picture and disappear for a few hours.

2015/02/01

Sunday, 1st February

Day 32 & 33 = Stem Cell Transplant

It's the first time in a long time that a weekend has felt like a weekend.  I had a hair appointment on Saturday morning, which always makes a girl feel like a million dollars, and then I had an early lunch with Patsy at Mug 'n Bean before I went through to the hospital.

After having a 'not so 100% normal day' on Friday, Jimmy was back to his normal self.  Prof had been to see him in the morning and told him he was very impressed that Jimmy was doing so well.  When I got there he was sitting in his lazy boy and reading.  Both the sister on day shift and the one on night shift told me they can't believe how well Jimmy is doing.  F4 Isolation is full to capacity with 12 patients at the moment and they are all very sick with high temperatures, not eating and in nappies because of hectic diarrhoea and vomiting too, etc.  And here is Jimmy, always smiling and the only complaint he has is that they can't get his nausea under control.

On the way home my brain went into over analysis - I am very good at this.  I started thinking that maybe the fact that Jimmy is so well is not such a good thing.  We had been warned how bad it was going to be.  I was even told that Jimmy would actually feel like he is going to die, but the clinic staff all said we had to be strong and always remember that this is a sign that the chemo is doing it's job.  Of course I have explained before that the one downside of having a stem cell transplant where you use donor cells is that there is a chance that your body can reject them.  The upside of using your own stem cells is that your body cannot reject them but the downside is that there is a chance the stem cell transplant will not be successful if your body does not react positively to the chemo they use before the stem cell transplant.  Basically Jimmy's did not reach the full potential of all the chemo that he has had since April and now I was thinking that maybe he is doing so well because his body hasn't reacted well enough to this chemo.  It's no wonder I don't fall asleep till 2am!!

Maureen and I went to a closing down sale of a B&B first thing this morning and then I had breakfast at her house.  I popped on to Blue Route Mall on my way through to the hospital to go and pick up our pills for the month, when you haven't shopped for a while, even this feels like retail therapy.

When I got to the hospital Jimmy was sleeping, it's the first time that he has been in bed when I have arrived.  He had actually sent me a message earlier to say that he had been very lazy and only got up at 11:00.  He said that he was feeling even more nauseous than normal and hadn't eaten his lunch. All he wanted to do was sleep.  The sister came in at about 2pm to do all his checks, they even check his sugar twice a day, and when she took his temperature it was 37 degrees.  He slept the whole time I was there and when he stirred at about 4:30 I told him that I was going to go home and have an early night and I would be back first thing tomorrow morning.  He apologised for sleeping so much and asked me if I wouldn't please take his temperature before I leave, which I did.

It was 38.2.  It felt like everything it time froze.  The dreaded temperature spike!!  I went to call the sister immediately and she came and doubled checked it.  Within 5 minutes there were 3 sisters buzzing around him all gloved and masked up.  One was on the phone to Prof, the other was putting up a bag of antibiotics and the 3rd was taking 3 lots of bloods, one from each pipe coming out the Hickman and one from his arm.  They then phoned through to xrays to arrange that xrays be done of Jimmy's chest.  The staff are absolutely unbelievable.  Sister Kurt came in and he explained that this meant that Jimmy had an infection and that we mustn't panic because this is something that we were not expecting but they always do.  He said that they had all been talking that morning and said that they were holding thumbs for Jimmy and went on the explain that if your temperature does not spike by day 10 (since stem cell transplant) then you are over the worst and it will probably take two weeks for your blood counts to come up to an acceptable level and then you get discharged. He said he was disappointed for Jimmy now as day 10 would have been tomorrow.

I have been dreading the day that I had to sit here and tell you all that he has an infection.  You can probably tell by all my babbling in this blog.  I decided to rather come home and get some sleep as I think tomorrow is going to be a long day at the hospital. I told the sister to please phone me any time of the night if Jimmy wants me to come through and she said that she would.  I phoned through to F4 at about 7:30pm and the sister on duty said that he has had his xrays and they have sent the bloods down, I think they grow a culture, but I am not too sure about this.  She said that I mustn't worry, that he is in the best place he can be and that I should get a good nights sleep and be there bright and early tomorrow.

Tomorrow we will get the blood results back and hopefully his temperature will have dropped by tomorrow morning.  It is going to take him about a week and a half to 2 weeks to get over this infection and in this time we have to hope that he can face his food and not lose too much weight.

Just before I left I asked him if he wanted some of his supper or at least one of the shakes and he said no.  I told him that he had made me promise that I would remind him that he has to eat and all he said was "I think I lied"......