Day 30 & 31 - Stem Cell Transplant
Well, another 2 days have passed and I really don't have much to tell you.
Jimmy is still doing ever so well. He is so strong. Today his white blood cell count is at 0.1 and his platelets are sitting at 13 (normal is 250). Dr Fine said he would have his first platelet transfusion today but by the time I left the hospital at 6pm he had not received this yet. They have now added some more nausea medication to the list that he is already taking. He gets this as and when he needs it but is still feeling nauseous. He is eating very little but the shakes make up for it and hasn't lost much weight at all, which we are very happy about.
He was very tired today, less talkative, didn't want to shower and dozed on and off but this is all due to his low platelets. Dr Fine said that these two days will be his most crucial as his system is very low and he will be most at risk of getting an infection. Jimmy's normal temperature is quite low, usually around 34.9 and 35.2 and at lunch time today it was 36.1 or 36.2 so they are keeping an eye on this. And still no mouth sores !!
Just a couple more days and then we are definitely on the upward climb again. I can't believe he has been in hospital 10 days already. I feel like part of the furniture...
ps Almost 22000 views of the blog :)
2015/01/30
2015/01/28
Wednesday, 28th February
Day 28 and 29 - Stem Cell Transplant
Jimmy is still doing very well considering how his body is now definitely on a downward spiral. This morning his white blood cell count was sitting at 0.03 and his platelets at 38. He has stopped vomiting but is still gagging, apart from when he eats or drinks anything, but even at the mention of his lunch arriving just before 12:00. He started his Neupogen injections today which will be given to him once a day for 10 days to try and boost stem cell production until his stem cells graft and his body is able to produce them on its own. He is also on some other medication 3 times a day to help prevent bleeding which is another side effect of the chemo. And then also some more medication to help keep the mouth sores that they are expecting him to get, to a minimum. Dr Fine explained that these form in the mouth, down the throat and right into his colon. They are expecting his system to 'crash' in the next 4 days when his white blood cell count will be 0. At this stage he will be given platelets and blood transfusions. And then it is the slow recovery of getting all his levels back up again. She says this happens quite slowly at first and then they tend to jump quite quickly and unless he gets sick, contracts an infection or has any kidney problems, this should take about 2 weeks from when his system crashes.
Of course the ever positive Jimmy still thinks he is going to defy the norm and be home in 10 days. Nothing wrong with being positive. I mentioned before that his sense of taste is now completely gone and there is also something strange going on with his sense of smell. Yesterday, after I showered him, he put his deodorant on and asked me to please buy his usual deodorant as he doesn't like the smell of this new one. Jimmy has been using the same deodorant for the last 2 years.
The days are very long at the hospital for me and I can only imagine what it must be like for Jimmy because he has to sleep there too. We busy ourselves with movies and since I finished my crochet chemo blanket I have now started a transplant blanket.
Last night I left him after 9pm only to find that I had been locked into the hospital. As luck would have it my cell phone would not dial out either. Bare in mind that from this specific door Jimmy is 2 floors up and about half a kilometre further back. So I started sending him whatsapp messages, asking him to ask the sister on duty to phone reception to open the door for me but Jimmy was watching the Bafana soccer game and oblivious to my predicament. Eventually I could hear someone was passing the passage on the other side of the door so I banged hard with my car keys on the door and about 10 minutes later security came to unlock for me. I had left the Pajero at home for the gardener to wash and come through to the hospital in my car. Apart from having some idiot driving so close to me on the highway and over Ou Kaapseweg that I couldn't even see his headlights in my rear view mirror, the computer in my car started telling me that I was losing tyre pressure and had gone into run flat mode, or something to this effect, and that I mustn't drive faster than 80km p/hr. There I was thinking that all I have to do is get home and tomorrow I would use the Pajero again. So this morning I go out to leave for the hospital and the Pajero battery is so flat the starter motor didn't even swing. I drove down to the garage very slowly and got them to check the tyre pressures and then according to my on board computer (yes I ask myself do I really need this in my life) I had to reset the tyre pressure on the computer, which I did. So far so good, no more funny messages. Once I got to the hospital I phoned our local auto electrician and they came up to the house and jump started the Pajero and then took it down to the workshop and fitted a new battery. I would have jump started it myself but it was parked in the top driveway, bonnet facing in, so I could not park anywhere near it to jump start the battery. And then my dear friend Maureen came to my rescue late this afternoon and picked me up to go down and collect the Pajero.
The good news is that the irrigation system is now up and running beautifully and the gate motor that was playing up seems to have just sorted itself out. Hooray for that!
Thank you so much to you all for the lovely messages and telephone calls that I receive on a daily basis. If you have phoned and I haven't answered I must apologise if I haven't returned your calls but I am doing this as and when I can. Patsy, you definitely come to mind xx
Jimmy is still doing very well considering how his body is now definitely on a downward spiral. This morning his white blood cell count was sitting at 0.03 and his platelets at 38. He has stopped vomiting but is still gagging, apart from when he eats or drinks anything, but even at the mention of his lunch arriving just before 12:00. He started his Neupogen injections today which will be given to him once a day for 10 days to try and boost stem cell production until his stem cells graft and his body is able to produce them on its own. He is also on some other medication 3 times a day to help prevent bleeding which is another side effect of the chemo. And then also some more medication to help keep the mouth sores that they are expecting him to get, to a minimum. Dr Fine explained that these form in the mouth, down the throat and right into his colon. They are expecting his system to 'crash' in the next 4 days when his white blood cell count will be 0. At this stage he will be given platelets and blood transfusions. And then it is the slow recovery of getting all his levels back up again. She says this happens quite slowly at first and then they tend to jump quite quickly and unless he gets sick, contracts an infection or has any kidney problems, this should take about 2 weeks from when his system crashes.
Of course the ever positive Jimmy still thinks he is going to defy the norm and be home in 10 days. Nothing wrong with being positive. I mentioned before that his sense of taste is now completely gone and there is also something strange going on with his sense of smell. Yesterday, after I showered him, he put his deodorant on and asked me to please buy his usual deodorant as he doesn't like the smell of this new one. Jimmy has been using the same deodorant for the last 2 years.
The days are very long at the hospital for me and I can only imagine what it must be like for Jimmy because he has to sleep there too. We busy ourselves with movies and since I finished my crochet chemo blanket I have now started a transplant blanket.
Last night I left him after 9pm only to find that I had been locked into the hospital. As luck would have it my cell phone would not dial out either. Bare in mind that from this specific door Jimmy is 2 floors up and about half a kilometre further back. So I started sending him whatsapp messages, asking him to ask the sister on duty to phone reception to open the door for me but Jimmy was watching the Bafana soccer game and oblivious to my predicament. Eventually I could hear someone was passing the passage on the other side of the door so I banged hard with my car keys on the door and about 10 minutes later security came to unlock for me. I had left the Pajero at home for the gardener to wash and come through to the hospital in my car. Apart from having some idiot driving so close to me on the highway and over Ou Kaapseweg that I couldn't even see his headlights in my rear view mirror, the computer in my car started telling me that I was losing tyre pressure and had gone into run flat mode, or something to this effect, and that I mustn't drive faster than 80km p/hr. There I was thinking that all I have to do is get home and tomorrow I would use the Pajero again. So this morning I go out to leave for the hospital and the Pajero battery is so flat the starter motor didn't even swing. I drove down to the garage very slowly and got them to check the tyre pressures and then according to my on board computer (yes I ask myself do I really need this in my life) I had to reset the tyre pressure on the computer, which I did. So far so good, no more funny messages. Once I got to the hospital I phoned our local auto electrician and they came up to the house and jump started the Pajero and then took it down to the workshop and fitted a new battery. I would have jump started it myself but it was parked in the top driveway, bonnet facing in, so I could not park anywhere near it to jump start the battery. And then my dear friend Maureen came to my rescue late this afternoon and picked me up to go down and collect the Pajero.
The good news is that the irrigation system is now up and running beautifully and the gate motor that was playing up seems to have just sorted itself out. Hooray for that!
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| A glimpse of our own personal isolation ward cinema |
2015/01/26
Monday, 26th January
Day 27 - Stem Cell Transplant
Wow, time really seems to be dragging. Each time I type the date at the start of a blog I second guess myself as it really feels like it should be February already.
I have just walked in the door from the hospital so this is just a quick update before the power goes off for load shedding at 8pm. Jimmy is very nauseous and can't keep any food down so he is now on nutritional shakes a couple of times a day but even with these he just takes little sips. Dr Fine changed his nausea medication at lunch time to a stronger pill at a cost of R1000 per pill!! Hopefully they do the job. She explained to us that they will not discharge him from isolation until he is back to the weight he was when he came in so I don't think they will mess around and if they see that he really can tolerate any food then they will tube feed him sooner than later. His taste buds have gone for a ball and nothing has any taste now.
Other than this though, he is doing well. He started reading a book I downloaded in his kindle today, and nice crime story, so hopefully he will get into reading a bit. We moved the chairs around in the ward today and put his laptop on the trolley table. We closed the curtains and made a very comfy 'ward cinema' and spend 2 hours watching a movie. At least this makes the time go a bit quicker.
I saw Janette again this afternoon and she says that Ron's temperature had started to drop but they were busy putting a catheter in as his kidneys aren't working properly.
And then we also had some sad news today. I have become quite friendly with one of the chemo patients daughters at the clinic. Her mom and Jimmy were on the same rotation for chemotherapy and Pam, her daughter, always sat next to me and asked me about crochet as she had never tried it before. She once brought me a dress that she had made to show me which she had hand sewn. We last saw them when Jimmy went through to the clinic for his Zobone injection at the beginning of January. Pam sent me a message this morning to tell me that her mom passed away last night. This is quite a reality check....it's the second person that we have got to know that has now passed away.
So with the power going off now now, all that is left to do is get into bed and read my book.
Wow, time really seems to be dragging. Each time I type the date at the start of a blog I second guess myself as it really feels like it should be February already.
I have just walked in the door from the hospital so this is just a quick update before the power goes off for load shedding at 8pm. Jimmy is very nauseous and can't keep any food down so he is now on nutritional shakes a couple of times a day but even with these he just takes little sips. Dr Fine changed his nausea medication at lunch time to a stronger pill at a cost of R1000 per pill!! Hopefully they do the job. She explained to us that they will not discharge him from isolation until he is back to the weight he was when he came in so I don't think they will mess around and if they see that he really can tolerate any food then they will tube feed him sooner than later. His taste buds have gone for a ball and nothing has any taste now.
Other than this though, he is doing well. He started reading a book I downloaded in his kindle today, and nice crime story, so hopefully he will get into reading a bit. We moved the chairs around in the ward today and put his laptop on the trolley table. We closed the curtains and made a very comfy 'ward cinema' and spend 2 hours watching a movie. At least this makes the time go a bit quicker.
I saw Janette again this afternoon and she says that Ron's temperature had started to drop but they were busy putting a catheter in as his kidneys aren't working properly.
And then we also had some sad news today. I have become quite friendly with one of the chemo patients daughters at the clinic. Her mom and Jimmy were on the same rotation for chemotherapy and Pam, her daughter, always sat next to me and asked me about crochet as she had never tried it before. She once brought me a dress that she had made to show me which she had hand sewn. We last saw them when Jimmy went through to the clinic for his Zobone injection at the beginning of January. Pam sent me a message this morning to tell me that her mom passed away last night. This is quite a reality check....it's the second person that we have got to know that has now passed away.
So with the power going off now now, all that is left to do is get into bed and read my book.
2015/01/25
Sunday, 25th January
Day 25 & 26 - Stem Cell Transplant
Saturday
When I got to hospital on Saturday morning I was pleasantly surprised to find Jimmy up and sitting in his lazy boy watching sport of television. We decided to get the whole shower rig marole over and done with. All the sticky patches are still on his chest but he is allowed to unclip them now to shower. Showering is not the easiest of tasks as the shower cubicle is quite small and he is constantly attached to a pole with at least 4 IV bags running into him at a time. He also can't get his chest wet as this will loosen the covering on the Hickman which could lead to infection. So I hold the pole and all the tubes in one hand and spray him with the hand held shower. I then lather up the face cloth, using one hand, and he washes himself and then I spray him off. A good team effort.
Jimmy is generally in good spirits but because he hasn't had any of the side effects of the chemo yet he is already saying that he doesn't know how he is going to handle being in hospital for 6 weeks. He is not allowed out his ward and the only people he sees are the staff. He is bored and I never thought I would ever say this but he is even tired of watching sport. I took the drifter through for him as he only has 3 DSTV channels but we couldn't get it up and running. He started reading a book but I think he has too much on his mind to read. I told him that he mustn't think about the time he has to spend there as he is only 5 days in and rather concentrate on being strong and coming home earlier. Every time I change position in the chair he thinks I am going to pack up to go home and asks if I am leaving. We have basically spent the last 9 months together and he told me that he misses me so much it's scary. When I did eventually say that I need to get home because the girls were coming for the night he asked if I couldn't sleep over. I think he is very scared about having to deal with the terrible side effects of the chemo. It is very hard to see Jimmy like this.
Sunday
I only went through to the hospital at 3pm today because the girls were here. I feel like I am torn in two. I know Jimmy wants me there as much as possible but I also feel guilty leaving the girls at home. It really would be so much easier if the hospital was closer then I could pop in a few times a day. The traffic is a nightmare no matter what time I go through too.
Jimmy has started to feel nauseous so they going to up his anti-nausea meds but from the sound of things this is going to be trial by error as some meds work for some patients and not for others. The sister did say that they would keep changing it until they find the right one. He doesn't have much of an appetite and says that anything he puts in his mouth makes him feel like he is going to gag and this includes the mouth rinse that he has to use 5 times a day to try and prevent mouth sores which is another side effect of the chemo. He has to blow into a plastic tube which has a plastic box on the end with 3 balls in it. The idea is to take a deep breath and then blow out so that the balls float in the box (much like those floating lottery balls). He has to do this a couple of times a day for 5 minutes at a time to make sure that he is using the bottom half of his lungs or he could get Pneumonia. This makes him gag too. I took a radio through to him today so that he can at least listen to Cape Talk and keep up with the news. Tomorrow I am going to suggest that we watch one disc of a series each day together as this should give him something to look forward to.
The sister advised me to today that possibly from tomorrow or by Tuesday I will have to wear a mask while I visit him as his various counts have started to drop. Jimmy's white blood cell count is at 1.3 (normal 4 to 11), this will drop to 0. His platelets have dropped from 290 to 80 (normal is about 250). She said that once they get to 30 and below, which they expect to have happen during the next few days, he will have to get platelet transfusions. I can't remember what his red blood cell or haemoglobin counts are but they are also dropping off.
Jimmy started using sleeping tablets on Friday night so he has finally had 2 nights of better sleep although he says he dreams about stupid things all night and Jimmy never dreams. I must be honest but I am also dreaming allot at the moment. Probably our over active minds. Speaking of which, on Friday morning I was driving through to the hospital and couldn't get over how tired I was feeling. I nearly fell asleep in the bumper to bumper traffic which was crawling along. I actually gave myself a pep talk, telling myself that I have to pull myself together as I still have 5 weeks ahead of me of this. On Friday night I went to take my pills as I was about to get into bed, only to realise that I had taken my night time pills in the morning. No wonder I was so tired!! I must make a point of putting my glasses on when I take them in the morning :)
Well....tomorrow is Monday again which means we are almost a week into Jimmy's isolation stay. The time has gone relatively quickly...I hope the next few weeks fly by.
We have made friends with Ron and Janette who we have come to know at the clinic. Ron is also in isolation at the moment, in the ward right next to Jimmy's. Whenever Janette is there and she has seen me then she sends me a text from Ron 'in cell block B' to find out how it's going with Jimmy. I would like to spare a thought and prayer for Ron tonight as he spiked a temperature of 39 this afternoon.
Saturday
When I got to hospital on Saturday morning I was pleasantly surprised to find Jimmy up and sitting in his lazy boy watching sport of television. We decided to get the whole shower rig marole over and done with. All the sticky patches are still on his chest but he is allowed to unclip them now to shower. Showering is not the easiest of tasks as the shower cubicle is quite small and he is constantly attached to a pole with at least 4 IV bags running into him at a time. He also can't get his chest wet as this will loosen the covering on the Hickman which could lead to infection. So I hold the pole and all the tubes in one hand and spray him with the hand held shower. I then lather up the face cloth, using one hand, and he washes himself and then I spray him off. A good team effort.
Jimmy is generally in good spirits but because he hasn't had any of the side effects of the chemo yet he is already saying that he doesn't know how he is going to handle being in hospital for 6 weeks. He is not allowed out his ward and the only people he sees are the staff. He is bored and I never thought I would ever say this but he is even tired of watching sport. I took the drifter through for him as he only has 3 DSTV channels but we couldn't get it up and running. He started reading a book but I think he has too much on his mind to read. I told him that he mustn't think about the time he has to spend there as he is only 5 days in and rather concentrate on being strong and coming home earlier. Every time I change position in the chair he thinks I am going to pack up to go home and asks if I am leaving. We have basically spent the last 9 months together and he told me that he misses me so much it's scary. When I did eventually say that I need to get home because the girls were coming for the night he asked if I couldn't sleep over. I think he is very scared about having to deal with the terrible side effects of the chemo. It is very hard to see Jimmy like this.
Sunday
I only went through to the hospital at 3pm today because the girls were here. I feel like I am torn in two. I know Jimmy wants me there as much as possible but I also feel guilty leaving the girls at home. It really would be so much easier if the hospital was closer then I could pop in a few times a day. The traffic is a nightmare no matter what time I go through too.
Jimmy has started to feel nauseous so they going to up his anti-nausea meds but from the sound of things this is going to be trial by error as some meds work for some patients and not for others. The sister did say that they would keep changing it until they find the right one. He doesn't have much of an appetite and says that anything he puts in his mouth makes him feel like he is going to gag and this includes the mouth rinse that he has to use 5 times a day to try and prevent mouth sores which is another side effect of the chemo. He has to blow into a plastic tube which has a plastic box on the end with 3 balls in it. The idea is to take a deep breath and then blow out so that the balls float in the box (much like those floating lottery balls). He has to do this a couple of times a day for 5 minutes at a time to make sure that he is using the bottom half of his lungs or he could get Pneumonia. This makes him gag too. I took a radio through to him today so that he can at least listen to Cape Talk and keep up with the news. Tomorrow I am going to suggest that we watch one disc of a series each day together as this should give him something to look forward to.
The sister advised me to today that possibly from tomorrow or by Tuesday I will have to wear a mask while I visit him as his various counts have started to drop. Jimmy's white blood cell count is at 1.3 (normal 4 to 11), this will drop to 0. His platelets have dropped from 290 to 80 (normal is about 250). She said that once they get to 30 and below, which they expect to have happen during the next few days, he will have to get platelet transfusions. I can't remember what his red blood cell or haemoglobin counts are but they are also dropping off.
Jimmy started using sleeping tablets on Friday night so he has finally had 2 nights of better sleep although he says he dreams about stupid things all night and Jimmy never dreams. I must be honest but I am also dreaming allot at the moment. Probably our over active minds. Speaking of which, on Friday morning I was driving through to the hospital and couldn't get over how tired I was feeling. I nearly fell asleep in the bumper to bumper traffic which was crawling along. I actually gave myself a pep talk, telling myself that I have to pull myself together as I still have 5 weeks ahead of me of this. On Friday night I went to take my pills as I was about to get into bed, only to realise that I had taken my night time pills in the morning. No wonder I was so tired!! I must make a point of putting my glasses on when I take them in the morning :)
Well....tomorrow is Monday again which means we are almost a week into Jimmy's isolation stay. The time has gone relatively quickly...I hope the next few weeks fly by.
We have made friends with Ron and Janette who we have come to know at the clinic. Ron is also in isolation at the moment, in the ward right next to Jimmy's. Whenever Janette is there and she has seen me then she sends me a text from Ron 'in cell block B' to find out how it's going with Jimmy. I would like to spare a thought and prayer for Ron tonight as he spiked a temperature of 39 this afternoon.
2015/01/23
Friday, 23rd January
Day 24 - Stem Cell Transplant
The big day has arrived. And how we have waited for today for Jimmy to have his stem cell transplant. I got to the hospital and went to find out if his blood results had come back yet and was told the Doctor had them. This is just typical....there is never any yes or no answer. Just like we never know how well something is going to work or how long something is going to take. I then got clever and asked Jimmy if he had breakfast thinking that if he was nil per mouth then he would be going into theatre to have the Hickman removed and replaced with a new one. Yay, some good news, he did have breakfast. Of course now my mind was running along again thinking oh crap! Does this mean he has an infection in his blood stream?
Dr Fine arrived about an hour later with a big smile on her face and asked Jimmy is he ready for his transplant? I asked her about his blood results and she said that the bacteria had come from one of the tubes in the Hickman and not from his blood so they would carry on with the antibiotics and there was not need for a new Hickman. This was such a relief. I knew the last thing Jimmy wanted was to have to go back into theatre and secondly, he doesn't need an infection before his cells have even been wiped out.
Dr Fine set everything up for the stem cell transplant. The stem cells are transplanted from a bag through the Hickman into Jimmy's blood stream. Much like a blood transfusion and it didn't even take 30 minutes. Dr Fine wished Jimmy happy birthday saying that this was the first day of his new life. She had given him a big fat Phenergan injection before I got there and this had made him very drowsy so I'm not even sure he was 100% sure of what was happening most the time. They had him hooked up to all kinds of machinery and monitored everything every few minutes. And with that it was basically over.
Jimmy was very groggy and spent the whole day sleeping so I left the hospital early. I got home at 3:30pm and he has just phoned to say he sees I'm not there :)
So now they monitor Jimmy very closely because by Monday/Tuesday most his cells will be completely wiped out. Dr Fine warned me that tomorrow Jimmy will have a funny smell and that this is a side effect of the transplant but it only lasts a day and Jimmy probably wouldn't be able to smell it but I would. Loovveelllyyyyyyyy.............
9 Months of build up to today and it is over. I thought it would be different somehow but I suppose this is because Jimmy doesn't feel any different yet. Of course I do know that we are far from it being over and there is quite a road ahead of us over the next few weeks but this too shall pass.
And the Zebra did come back to visit after I left the hospital yesterday afternoon.
The big day has arrived. And how we have waited for today for Jimmy to have his stem cell transplant. I got to the hospital and went to find out if his blood results had come back yet and was told the Doctor had them. This is just typical....there is never any yes or no answer. Just like we never know how well something is going to work or how long something is going to take. I then got clever and asked Jimmy if he had breakfast thinking that if he was nil per mouth then he would be going into theatre to have the Hickman removed and replaced with a new one. Yay, some good news, he did have breakfast. Of course now my mind was running along again thinking oh crap! Does this mean he has an infection in his blood stream?
Dr Fine arrived about an hour later with a big smile on her face and asked Jimmy is he ready for his transplant? I asked her about his blood results and she said that the bacteria had come from one of the tubes in the Hickman and not from his blood so they would carry on with the antibiotics and there was not need for a new Hickman. This was such a relief. I knew the last thing Jimmy wanted was to have to go back into theatre and secondly, he doesn't need an infection before his cells have even been wiped out.
Dr Fine set everything up for the stem cell transplant. The stem cells are transplanted from a bag through the Hickman into Jimmy's blood stream. Much like a blood transfusion and it didn't even take 30 minutes. Dr Fine wished Jimmy happy birthday saying that this was the first day of his new life. She had given him a big fat Phenergan injection before I got there and this had made him very drowsy so I'm not even sure he was 100% sure of what was happening most the time. They had him hooked up to all kinds of machinery and monitored everything every few minutes. And with that it was basically over.
Jimmy was very groggy and spent the whole day sleeping so I left the hospital early. I got home at 3:30pm and he has just phoned to say he sees I'm not there :)
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| The bag of stem cells |
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| Dr Fine monitoring everything as the stem cells are transplanted |
9 Months of build up to today and it is over. I thought it would be different somehow but I suppose this is because Jimmy doesn't feel any different yet. Of course I do know that we are far from it being over and there is quite a road ahead of us over the next few weeks but this too shall pass.
And the Zebra did come back to visit after I left the hospital yesterday afternoon.
2015/01/22
Thursday, 22nd January
Days 23 - Stem Cell Transplant
The good news is that Jimmy did see some Zebra on the slopes of Devil's Peak after I left the hospital yesterday. I hope they come to visit him each afternoon.
They picked up bacteria in his bloods today and don't know if it is in his blood or from one of the Hickman tubes. So what they have done is drawn some bloods from his arm and sent this off to be tested. They really battled to get the bloods as his veins have hardened from the chemo and the nurse says when this happens it is difficult to tell the difference between a vein and a tendon. In the end though, they did manage. In the meantime they have put him on antibiotics as a precaution. If these bloods come back clear then he will go into theatre tomorrow morning to have the Hickman removed and another one put in on the opposite side of his chest. If these bloods come back positive, they will put Jimmy on a stronger antibiotic but at this stage, no matter the outcome, they will still do the transplant tomorrow. They have been taking his temperature allot during the day and it has not spiked so hopefully this is a sign that it is in the Hickman. Not that Jimmy wants to go back into theatre but at least it means that he doesn't have an infection.
The only other change today is that his appetite has already lessened. He had jungle oats for breakfast and with the blood procedures going on they only brought him his lunch at 14h00 instead of 12h00. His comment was "lunch already?...I'm still full from breakfast". And he really did just pick at his food.
He is not getting much sleep at all and the sister explained to me today that it is a side effect of the chemo and not them bothering him at night to take his vitals. I also thought this was strange because he has complained about not being able to sleep for 2 nights but didn't fall asleep at all today while I was there. I really hope that they give him a sleeping tablet tonight.
Thanks again for all your lovely comments. I have read through them very quickly now but it is almost 10pm so will read them properly tomorrow evening once I am home and reply. It's a long day sitting at the hospital, showering Jimmy etc and I am definitely not used to driving to and from the hospital each day. I can't believe that I used to work around the corner from UCTPAH and drive this route every day in the peak hour traffic!
Please keep Jimmy in your prayers tomorrow xx
The good news is that Jimmy did see some Zebra on the slopes of Devil's Peak after I left the hospital yesterday. I hope they come to visit him each afternoon.
They picked up bacteria in his bloods today and don't know if it is in his blood or from one of the Hickman tubes. So what they have done is drawn some bloods from his arm and sent this off to be tested. They really battled to get the bloods as his veins have hardened from the chemo and the nurse says when this happens it is difficult to tell the difference between a vein and a tendon. In the end though, they did manage. In the meantime they have put him on antibiotics as a precaution. If these bloods come back clear then he will go into theatre tomorrow morning to have the Hickman removed and another one put in on the opposite side of his chest. If these bloods come back positive, they will put Jimmy on a stronger antibiotic but at this stage, no matter the outcome, they will still do the transplant tomorrow. They have been taking his temperature allot during the day and it has not spiked so hopefully this is a sign that it is in the Hickman. Not that Jimmy wants to go back into theatre but at least it means that he doesn't have an infection.
The only other change today is that his appetite has already lessened. He had jungle oats for breakfast and with the blood procedures going on they only brought him his lunch at 14h00 instead of 12h00. His comment was "lunch already?...I'm still full from breakfast". And he really did just pick at his food.
He is not getting much sleep at all and the sister explained to me today that it is a side effect of the chemo and not them bothering him at night to take his vitals. I also thought this was strange because he has complained about not being able to sleep for 2 nights but didn't fall asleep at all today while I was there. I really hope that they give him a sleeping tablet tonight.
Thanks again for all your lovely comments. I have read through them very quickly now but it is almost 10pm so will read them properly tomorrow evening once I am home and reply. It's a long day sitting at the hospital, showering Jimmy etc and I am definitely not used to driving to and from the hospital each day. I can't believe that I used to work around the corner from UCTPAH and drive this route every day in the peak hour traffic!
Please keep Jimmy in your prayers tomorrow xx
2015/01/21
Wednesday, 21st January
Days 22 - Stem Cell Treatment
When I got to the hospital this morning Jimmy had already had his chemo and he was sitting up in bed, glasses on and working on his laptop with sport on in the background on television. He was looking very relaxed and is very pleased that the area where they put the Hickman line in is no longer uncomfortable and his neck was feeling much better too.
The only thing that he really complained about is the fact that they do his vitals every two hours right through the night so he didn't sleep very well and said that it was a long night. Dr Fine had said yesterday that she would write up a script for sleeping tablets but Jimmy says they never gave him one so I suggested that he ask for one tonight. Maybe he'll be a little groggy and not wake up properly each time they come around and at least fall back to sleep a bit quicker.
He is plugged into a whole lot of machines today and this is to keep tabs on his heart etc. while he is having these 2 days of chemo. They also gave him 2 injections for nausea while I was there and so far so good as he is not feeling nauseous at all.
I think tomorrow will be much like today was and then on Friday they put his stem cells back. We say goodbye to his old immune system and hello to a new one!
Here are some photos of his ward.
My other news is that today my baby turned 16! Emma was a bit disheartened having to start the first day of school on her birthday but her friends all remembered and she ended up having a very special day. We went out for some Sushi to celebrate this evening and Megan phoned Emma on FaceTime to wish her while we were out, which was a lovely surprise.
And then of course it is just typical how life works. Jimmy has been gone for 2 days and the irrigation system has stopped working, our motorised gate is not opening or closing and the dog is vomiting everywhere.
But as the saying goes "When life gives you lemons make lemonade"........cheers :)
When I got to the hospital this morning Jimmy had already had his chemo and he was sitting up in bed, glasses on and working on his laptop with sport on in the background on television. He was looking very relaxed and is very pleased that the area where they put the Hickman line in is no longer uncomfortable and his neck was feeling much better too.
The only thing that he really complained about is the fact that they do his vitals every two hours right through the night so he didn't sleep very well and said that it was a long night. Dr Fine had said yesterday that she would write up a script for sleeping tablets but Jimmy says they never gave him one so I suggested that he ask for one tonight. Maybe he'll be a little groggy and not wake up properly each time they come around and at least fall back to sleep a bit quicker.
He is plugged into a whole lot of machines today and this is to keep tabs on his heart etc. while he is having these 2 days of chemo. They also gave him 2 injections for nausea while I was there and so far so good as he is not feeling nauseous at all.
I think tomorrow will be much like today was and then on Friday they put his stem cells back. We say goodbye to his old immune system and hello to a new one!
Here are some photos of his ward.
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| This is Jimmy's view of Devils Peak from his bed. Excuse the bad photo but the window is very dirty and they don't open. He has been looking for the Zebra but not seen any yet. |
My other news is that today my baby turned 16! Emma was a bit disheartened having to start the first day of school on her birthday but her friends all remembered and she ended up having a very special day. We went out for some Sushi to celebrate this evening and Megan phoned Emma on FaceTime to wish her while we were out, which was a lovely surprise.
And then of course it is just typical how life works. Jimmy has been gone for 2 days and the irrigation system has stopped working, our motorised gate is not opening or closing and the dog is vomiting everywhere.
But as the saying goes "When life gives you lemons make lemonade"........cheers :)
2015/01/20
Tuesday, 20th January
Day 21 - Stem Cell Transplant
As promised, I said I would update the blog each evening to keep you all in the loop. Today went very well. Allot of new things to learn and take in but in a day or two we will both be professionals at this.
Jimmy was in theatre for an hour while they put his Hickman line in and then while he was in recover they did some chest xrays. This is just to make sure that he is fit for the heavy dose of chemo he will be having. He was a little bit uncomfortable afterwards, complaining that his neck felt painful and stiff on the right have side but Dr Fine was in to see him about 2 hours after the operation and she says that this is normal and by tomorrow he will be aware of the Hickman line but it won't bother him like it is today. It did bleed quite a bit once he was back in his insolation ward but the sister didn't seem too worried about this. The most important thing is to keep it clean and infection free so it has already been cleaned and used to take 3 huge syringes of blood which means that it is working too.
Jimmy's ward in F4 is much bigger than I thought it would be but I still think it is more like a cubicle. I will take some photos tomorrow so you can all see what it looks like. But basically each patient is kept completely separate from the others. There are 6 isolation wards in total. Once Jimmy is in he cannot leave. It consists of 2 rooms; the first has all the medical supplies and fridges etc. You enter this, close the door, wash your hands twice and then enter his ward (the 2nd room) and close the door behind you. He has a state of the art bed, a lazy boy, a desk, 2 cupboards and chest of drawers and his own on-suite bathroom.
I have to go into the change rooms when I get there and undress to underwear and then put on scrubs and covers over my shoes. Jimmy is assigned a sister and she is the only one that sees to him. She also does not see to anyone else so that there is no bug sharing.
Dr Fine explained to us today that he will get chemo tomorrow and Thursday (Melphalan) and then they will do the transplant on Friday (put back one bag of his frozen stem cells). She says it will take about a week and then his eg white blood count will drop to 1. She has already prepared us for the fact that he will get some kind of infection as his body just won't be strong enough. He will also go off his food and force feeding him will cause him to vomit so they will feed him intravenously. I dietitian will come and see him tomorrow and apart from the 3 meals a day that he gets in hospital he will have 3 to 4 shakes a day to build him up a bit now for when he can't eat. His food has to be heated to 200 degrees - no wonder he won't feel like eating....I don't think there will be much taste left after a nook like that!
I am very impressed with the whole set up. I spoke to the hospital manageress today and she organised a monthly parking fee for me at R60 instead paying the daily R7 if I get the parking ticket stamped. She also said that if there is no parking available that I should driver up to the top parking and she has given me a number to phone and they will come and collect me and drop me at the front door. She explained that when Jimmy is at his worst I am more than welcome to sleep over if he wants me to.
So....for now this is about all the information that I know. Jimmy is in good spirits. He has already sent me a message to say that he is really missing me.
And just so that you know we haven't lost our sense of humour yet.....
As promised, I said I would update the blog each evening to keep you all in the loop. Today went very well. Allot of new things to learn and take in but in a day or two we will both be professionals at this.
Jimmy was in theatre for an hour while they put his Hickman line in and then while he was in recover they did some chest xrays. This is just to make sure that he is fit for the heavy dose of chemo he will be having. He was a little bit uncomfortable afterwards, complaining that his neck felt painful and stiff on the right have side but Dr Fine was in to see him about 2 hours after the operation and she says that this is normal and by tomorrow he will be aware of the Hickman line but it won't bother him like it is today. It did bleed quite a bit once he was back in his insolation ward but the sister didn't seem too worried about this. The most important thing is to keep it clean and infection free so it has already been cleaned and used to take 3 huge syringes of blood which means that it is working too.
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| Jimmy's new office |
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| A close up of the Hickman Line
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I have to go into the change rooms when I get there and undress to underwear and then put on scrubs and covers over my shoes. Jimmy is assigned a sister and she is the only one that sees to him. She also does not see to anyone else so that there is no bug sharing.
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| My new uniform.
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I am very impressed with the whole set up. I spoke to the hospital manageress today and she organised a monthly parking fee for me at R60 instead paying the daily R7 if I get the parking ticket stamped. She also said that if there is no parking available that I should driver up to the top parking and she has given me a number to phone and they will come and collect me and drop me at the front door. She explained that when Jimmy is at his worst I am more than welcome to sleep over if he wants me to.
So....for now this is about all the information that I know. Jimmy is in good spirits. He has already sent me a message to say that he is really missing me.
And just so that you know we haven't lost our sense of humour yet.....
2015/01/19
Monday, 19th January
We had a fabulous weekend spent with very special friends and have to say that Jimmy thoroughly enjoyed his 'send off'. It was lovely to see everyone so pleasantly surprised with how well Jimmy is looking and doing.
So...the big day has arrived. We have to be at UCTPAH at 8am tomorrow and Jimmy goes into theatre at 10am to have his Hickman line put in. Originally he was going to be admitted to high care and then to F4 Isolation ward on Wednesday but they phoned this afternoon to tell us about the change in time and that he will go directly to F4 tomorrow. We will also have a whole educational thingy explaining all the do's and don'ts in the morning.
A big thank you to everyone for the phone calls and lovely messages of well wishes. It's going to feel very strange in this house for a while. Jimmy and I have been joined at the hip for the last 9 months.
So...the big day has arrived. We have to be at UCTPAH at 8am tomorrow and Jimmy goes into theatre at 10am to have his Hickman line put in. Originally he was going to be admitted to high care and then to F4 Isolation ward on Wednesday but they phoned this afternoon to tell us about the change in time and that he will go directly to F4 tomorrow. We will also have a whole educational thingy explaining all the do's and don'ts in the morning.
A big thank you to everyone for the phone calls and lovely messages of well wishes. It's going to feel very strange in this house for a while. Jimmy and I have been joined at the hip for the last 9 months.
2015/01/13
Tuesday, 13th January 2015
To all our family and friends,
Wishing you a Happy New Year
Is it not scary how time flies? My last blog was on Christmas Day and here I sit again, 19 days later and we are already half way through January 2015. So hello to you all. Most of you are probably back at work by now, I started yesterday again, and how easy we fall back into the routine that makes up our daily lives. Hopefully your special Christmas time and New Year celebrations are not a distant memory already. We both wish for you all a fabulous 2015 filled with lots of love, happiness, good health and success in whatever it is that you set out to do.
As you know we were contemplating going camping and were discussing should we go or should we stay. Stan (my brother) and his wife Michelle had bookings at 3 of the SANParks camps and since it was just the two of them camping we were able to piggyback on their bookings an join them. We made a decision that we would see how far we got and if, at any time, Jimmy felt that he wanted to come home we would turn the car around and come back. We left here on Saturday the 27th with the caravan on tow and went up to my folks to spend to nights with them in Bredasdorp. On Monday morning we drove up to Graaff-Reinet and joined Stan and Michelle at Camdeboo National Park for 3 nights. It's a very laid back park with not much to do other than takes drives through the park and relax. It is the 2nd year in a row that we have been and we have still not seen the Buffalo and I am now seriously wondering if this is in fact a myth. Even the receptionist says that it wasn't until she had been working there for quite sometime before she saw them and thought the other staff were pulling her leg.
We spent New Years eve at Camdeboo but went to bed before midnight. All the fresh air is exhausting! I got into bed at about 11pm thinking that I wish I could delay New Year's by a few months. With stem cell transplant hanging over us the like a huge thunder cloud it was the last thing I wanted to come soon.
From Camdeboo we headed towards Addo National Elephant Park. A nice short distance of about 3hrs. We woke up early, packed up camp, stopped in Graaff-Reinet for breakkie and then hit the road. We were very lucky with all our sites, as most of the SANParks operate on a 'choose an available site on arrival' or 'you are allocated one on arrival', and in spite of the heat we managed to get a nice shady site each time. It was lovely sitting around the campfire at night with a huge watering hole right behind us which meant we could listen to the sounds of the animals at night. One night it was Elephants and the next it was the call of the Jackal. It was quite hot in Addo so we did morning and late afternoon self drives through the reserve and I relaxed and read in the afternoons and Jimmy enjoyed an afternoon snooze.
After 3 nights at Addo, Stan and Michelle were moving on to Nature's Valley and I asked Jimmy how he was feeling and if he wanted to go home as we could split the journey and sleep over somewhere on route back. He did not want to hear any of this. So once again we were up early to pack up and hit the road with another distance of 3 hours ahead of us. Nature's Valley is exactly how it is named, the most beautiful valley of nature. The park is a forest of trees and you feel like you are camping with fairies. This was to be our chill spot for the next 5 nights as there was no more getting up early to go game viewing. We went for walks in the forest to see the Big Tree. We packed a picnic lunch and spent the afternoon on the beach and swam in the lagoon. Jimmy and I popped into Plett to stock up on food and had lunch at Mug 'n Bean. I was very happy that they were so busy and the service was a bit slow as this gave me an excuse to leave him at the table and go and 'window shop' and of course I found the exact dress I was looking for :). On Tuesday the 6th we awoke to that gnawing feeling in our tummies that Brad would get his matric results at 12:00. Poor Jimmy could not contain himself and at 12:03 he phoned Brad and said he is sorry but he just can't wait any longer for the news. We were elated that Brad passed; he struggles terribly with his languages, specially Afrikaans since the beginning of high school and he even passed Afrikaans. We were so excited that the 4 of us decided to hit the local pub and celebrate!
The five night flew and on Friday morning we were up early again to pack up and hit the homeward road. It had rained throughout the night and we had to pack up wet groundsheets and collapse the caravan roof with very wet canvas. Just outside George we stopped for breakkie and said our goodbyes and went our separate ways. Stan and Michelle wanted to take it easy as Stan's camper was giving him a bit of engine trouble. It's quite a distance back so as we neared Swellendam (which is about half way) we decided to phone ahead and see if they had a site available, which they did. This was a good excuse to break the journey and dry out the roof and all our wet towels and groundsheet etc. Rather than get home at about 6pm and then have to open everything up the next morning again.
And this was a brilliant idea. I have to tell you that from 3 days back already I was feeling very anxious about coming home and facing the whole cancer thing again. I developed a stye and was very teary the last day. We had had a wonderful break away from it all. I know I have said over the last month or so that Jimmy is a different person but it was as if this holiday had waved its magic wand. The old Jimmy was truly back including his wonderful sense of humour. It was amazing to hear him laughing. He even enjoyed the odd beer here and there. He spoke and chatted more this 2 weeks that we were away than he has since April. The new Jimmy with no hair :). Aren't you guys out there jealous? He hasn't had to shave for the last month. His head is now completely bald and as smooth as a babies bum. Even his eyebrows have thinned out.
To Stan and Michelle; Thank you from the bottom of my heart for sharing your holiday with us and giving me back my Jimmy xx
To Stan and Michelle; Thank you from the bottom of my heart for sharing your holiday with us and giving me back my Jimmy xx
Oh....and my other news is that I finished my queen size crochet chemo blanket!
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| brag.... |
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| ...brag..... |
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| ....brag |
Yesterday we phoned the clinic to remind them that Jimmy needs to come in for his monthly Zobone (calcium) injection and Sister Wendy said that Mr Brown had been trying to get hold of us. We phoned him back and he informed us that Jimmy needs to report to high care next Tuesday at 7am. He will go into theatre at 8am to have his Hickman line put in and then he'll be taken back to high care for the rest of the day and night while they pre-hydrate him. This is putting fluids into him so that the chemo doesn't burn his veins etc. On Wednesday morning he will be transferred to F4 Isolation ward where they will administer a heavy dose of chemo for two days and on Friday the 23rd they will transplant his stem cells. So this is the big it.... We knew Prof was coming back on the 19th and had sort of resigned ourselves to the fact that Jimmy would probably go in sometime during the following week. I was sitting opposite Jimmy while he was on the phone and when he put it down we both looked at each other and said 'crap, this is a bit quick'. But we are actually very grateful that the ball is rolling and the sooner we get this over the better.
All went well with Jimmy's Zobone infusion today. We also got a copy of his itinerary and the first thing on the list is to have safety bloods taken the day prior to being admitted. I asked Sister Wendy about this as they had done them when he was in high care having the 2 days of chemo prior to stem cell harvest. She explained that safety bloods are the tests they do for HIV and other diseases and unless Jimmy had been a naughty boy, she said that we would not have to have them redone. She was busy putting the line is his arm as she was explaining this to which Jimmy says 'well then I guess you had better do the safety bloods again'. She looked up absolutely shocked, looked at me and then at Jimmy and when she saw that he was joking she burst out laughing. She even high fived him. Sister Wendy is a real character. She used to run the F4 Isolation ward before she resigned to go and work for 8 years in the Arab Emirates. She has only been back at UCTPAH for a few months but she says she is already itching to go work somewhere else again and is thinking of going to one of the African countries.
There was only us and one other patient in the clinic today while we were there so it gave Jimmy the ideal opportunity to ask all the questions he had about isolation. She says that this round of chemo that he will have is the heaviest yet and they take his body right down and he is basically left with no cells. They then start Neupogen injections to stimulate growth while his body gets strong enough to start producing its own cells. She says it is almost a given that he will get some kind of infection while he is there and there are loads of side effects. One of them being that his skin is going to be super sensitive for some time after and that he will hardly be able to touch himself it is so painful. Some people also have a complete change in the colour of the pigment on the skin. It goes a much darker, very tanned colour. This can take months to return to normal and with some people it never does. She says that just like your hair, your skin changes colour and texture too. There are too many different side effects to mention here but hopefully Jimmy will only suffer a handful of them and I will of course keep you all posted along the way.
We have a busy weekend ahead of us as we get together with friends at home so that they can say 'goodbye' to Jimmy as, if all goes according to plan, he should be released from F4 Isolation ward around the 18th of February and then go into high care for 2 nights before he comes home again.
It's going to be a long, stressful month and one, not without some complications but we are positive and ready for this. This is the last stage in our journey with Multiple Myeloma to the road of recovery.
I pray that Jimmy will be strong.
* I have uploaded some photos of our holiday. Click on the link on the left hand side of the home page 'Camping: National Parks' under the heading 'Getting away from it all'.
PS. I have decided to make my new years resolution that I will make a better effort of commenting on all your lovely comments. Please keep them coming, they mean so much to Jimmy. (I have edited this blog and added this bit on)
PS. I have decided to make my new years resolution that I will make a better effort of commenting on all your lovely comments. Please keep them coming, they mean so much to Jimmy. (I have edited this blog and added this bit on)