2016/06/28
Tuesday, 28th June
If it's not one thing then it's the other....
Jimmy was discharged yesterday and is now recuperating at home. But this was not without its dramas. On Saturday he started with what felt like gout in his foot. By evening he had a full blown gout attack in both his feet and right knee and was in so much pain he could not even change position in bed. This of course led to his back muscles cramping up again and a very miserable patient. I don't think the staff on duty have had much experience with gout in high care, which probably makes sense, but unfortunately they did not give him the treatment he needed fast enough. They were giving him pain injections which should have been administered 6 hourly but they weren't having much effect so he was getting them 2 hourly. The more we tried to tell them that he needed a voltaren injection they wanted to wait to see if he would get relief from the tramacet injections. On Sunday morning after Dr Du Toit had seen Jimmy he prescribed the voltaren injection. When I got there at 1:30pm Jimmy had still not had the injection. When I asked about this they casually said they would phone the pharmacy to see if it was ready. Jimmy got his injection and within 30 minutes, although still in pain, the throbbing has stopped.
So yesterday he got discharged but could still not walk due to gout. We wheeled him to the car in a wheelchair and then Emma and I lifted him into the car. Once home we had to support him and take as much weight off his feet as possible to get him into the house. Last night he could still not walk to the toilet or the bedroom at bedtime. The good news is that he is better today. He still can't walk unassisted but he can at least move his feet without terrible pain.
And of course Jimmy lived up to being Jimmy and announced to me this morning that if his feet are better tomorrow he is going back to work. His blood counts are all below normal and he really doesn't need a secondary infection so I had to convince him to take Prof's instructions seriously and go back to work on Monday which is when he has been booked off until.
His platelets have come up nicely again to 127 and we got the infection marker results back and these had dropped back down to 18 from 80 (10 being normal).
2016/06/24
Friday, 24th June
Jimmy seemed a lot more positive today. Prof saw him in the morning and Dr Du Toit did his rounds while I was there.
We had some more results back and Jimmy has an upper and lower respiratory infection which is a mixture of viral and bacterial. They are going to repeat the infection markers again tomorrow to see how much change there is from the 80 and also do antibiotic saturation levels. I presume this is to see if they can increase them or to see if they need to be increased. His temp was slightly up today and his blood pressure has dropped a bit but generally Dr Du Toit is happy with Jimmy's progress.
Hopefully when I get there tomorrow he'll have the TV on.......then I will know for sure he is feeling better :) Thanks very much for all your messages and support, I have passed them on to Jimmy and he is very grateful.
We had some more results back and Jimmy has an upper and lower respiratory infection which is a mixture of viral and bacterial. They are going to repeat the infection markers again tomorrow to see how much change there is from the 80 and also do antibiotic saturation levels. I presume this is to see if they can increase them or to see if they need to be increased. His temp was slightly up today and his blood pressure has dropped a bit but generally Dr Du Toit is happy with Jimmy's progress.
Hopefully when I get there tomorrow he'll have the TV on.......then I will know for sure he is feeling better :) Thanks very much for all your messages and support, I have passed them on to Jimmy and he is very grateful.
2016/06/23
Thursday, 23rd June
Life is certainly never dull and as the years and months pass since Jimmy's diagnoses in April 2014 it becomes more of a realisation that things will never be normal again and we need to accept the new normal, some of us more than others.
Had I blogged on Monday or Tuesday it would have been in the tone of a very disgruntled carer looking after a cancer patient who is in complete denial of his situation. I only wish Jimmy would accept the new normal...but I am feeling slightly more calm again now and not as angry with him. An anger born out of my love for him.
Emma and I got back from our trip on Monday to find Jimmy at home sick with flu and a very chesty cough. I was absolutely gob smacked and couldn't believe that we had spoken to each other a couple of times during the day while we were on route home and he never thought to mention this to me. The first thing I did was get our flu meds out and dose him up and take his temperature. It was 35.1 which is normal for him. I then proceeded to blast him and ask how long he has been sick for and why he didn't make an appointment to see the Dr on Saturday instead of playing golf!! I phoned our GP and made an appointment for 9:30 on Tuesday morning. The Dr diagnosed rhino sinusitis, conjunctivitis and an upper respiratory tract infection and booked him off till Friday saying that if he gets worse or doesn't start feeling better then we need to come back immediately. We came home with 5 different meds and proceeded to take Jimmy's temperature every hour. By the evening his temperature was 36.something which for you and me is normal but already a bit higher than Jimmy's normal. Also bear in mind that because of his weakened immune system we have to report to high care if his temperature reaches 38. I endured a second night of no sleep, listening to his breathing and comparing each breath to the last and wondering of his chest was getting tighter and praying we caught this early enough and the antibiotics will kick in. I took his temp at 8am on Wednesday morning and it was 37.3 and again at 9am and it had shot up to 38.5. I phoned through to the chemo clinic and they said to bring him in straight away. Jimmy was assessed by his haematologist who booked him straight into high care where he was put on a drip and intravenous antibiotics.
They did bloods, chest x-rays and some cultures to identify the infection. By last night Jimmy's temperature had stabilised at 37.6. His blood counts are all down as well as his platelets which have dropped to 75. His infection markers are quite high at 80 (normal is 10) so this is a definite indication that there is infection. But I have to say that his symptoms were definitely not as bad as previous times when his blood pressure was low and he was short of breath. His chest x-rays came back not being very clear as there is quite a bit of damage from previous infections so they compared them to his last ones and we are relieved that we caught this pre-pneumonia and it is more than likely a bronchial infection. They are concerned that he has a very bad cough and are not prepared to chance it that the infection gets worse so he will stay in high care until Monday on intravenous antibiotics. Today Jimmy's temperature was back to 35.6 and they had him on a Nebuliser for a short while.
I have decided that I am going to enlist the help of a cancer support group representative (not quite sure what you call them) or hospice and get someone to sit down with Jimmy and explain to him that he has to listen to his body and take the necessary action when he is not well. He has to accept that he has cancer and a compromised immune system and will never be normal again and that next time he has to be intubated and ventilated he might not be as lucky. He needs to understand how these episodes affect everyone in his life and how much it is wearing me down. His friends have spoken to him and God knows how many times I have spoken to him and each time he promises me he will change...... Yesterday morning he sat on our bed crying and apologising for not acting on this and for what he is putting us through again. I know that Jimmy is scared.....once you have cancer it NEVER goes away. It consumes your head almost 24/7, you never know what is going to happen when, you over analyse every new change or symptom and as a carer it is the same for me. I believe Jimmy needs help to face these fears and accept the new normal and know that we all still believe he is a hero for being such a fighter and coming through this terrible disease as well as he has. That he will never be judged for saying that he feels tired.....He will always be my hero xx
Had I blogged on Monday or Tuesday it would have been in the tone of a very disgruntled carer looking after a cancer patient who is in complete denial of his situation. I only wish Jimmy would accept the new normal...but I am feeling slightly more calm again now and not as angry with him. An anger born out of my love for him.
Emma and I got back from our trip on Monday to find Jimmy at home sick with flu and a very chesty cough. I was absolutely gob smacked and couldn't believe that we had spoken to each other a couple of times during the day while we were on route home and he never thought to mention this to me. The first thing I did was get our flu meds out and dose him up and take his temperature. It was 35.1 which is normal for him. I then proceeded to blast him and ask how long he has been sick for and why he didn't make an appointment to see the Dr on Saturday instead of playing golf!! I phoned our GP and made an appointment for 9:30 on Tuesday morning. The Dr diagnosed rhino sinusitis, conjunctivitis and an upper respiratory tract infection and booked him off till Friday saying that if he gets worse or doesn't start feeling better then we need to come back immediately. We came home with 5 different meds and proceeded to take Jimmy's temperature every hour. By the evening his temperature was 36.something which for you and me is normal but already a bit higher than Jimmy's normal. Also bear in mind that because of his weakened immune system we have to report to high care if his temperature reaches 38. I endured a second night of no sleep, listening to his breathing and comparing each breath to the last and wondering of his chest was getting tighter and praying we caught this early enough and the antibiotics will kick in. I took his temp at 8am on Wednesday morning and it was 37.3 and again at 9am and it had shot up to 38.5. I phoned through to the chemo clinic and they said to bring him in straight away. Jimmy was assessed by his haematologist who booked him straight into high care where he was put on a drip and intravenous antibiotics.
They did bloods, chest x-rays and some cultures to identify the infection. By last night Jimmy's temperature had stabilised at 37.6. His blood counts are all down as well as his platelets which have dropped to 75. His infection markers are quite high at 80 (normal is 10) so this is a definite indication that there is infection. But I have to say that his symptoms were definitely not as bad as previous times when his blood pressure was low and he was short of breath. His chest x-rays came back not being very clear as there is quite a bit of damage from previous infections so they compared them to his last ones and we are relieved that we caught this pre-pneumonia and it is more than likely a bronchial infection. They are concerned that he has a very bad cough and are not prepared to chance it that the infection gets worse so he will stay in high care until Monday on intravenous antibiotics. Today Jimmy's temperature was back to 35.6 and they had him on a Nebuliser for a short while.
I have decided that I am going to enlist the help of a cancer support group representative (not quite sure what you call them) or hospice and get someone to sit down with Jimmy and explain to him that he has to listen to his body and take the necessary action when he is not well. He has to accept that he has cancer and a compromised immune system and will never be normal again and that next time he has to be intubated and ventilated he might not be as lucky. He needs to understand how these episodes affect everyone in his life and how much it is wearing me down. His friends have spoken to him and God knows how many times I have spoken to him and each time he promises me he will change...... Yesterday morning he sat on our bed crying and apologising for not acting on this and for what he is putting us through again. I know that Jimmy is scared.....once you have cancer it NEVER goes away. It consumes your head almost 24/7, you never know what is going to happen when, you over analyse every new change or symptom and as a carer it is the same for me. I believe Jimmy needs help to face these fears and accept the new normal and know that we all still believe he is a hero for being such a fighter and coming through this terrible disease as well as he has. That he will never be judged for saying that he feels tired.....He will always be my hero xx
2016/06/13
Monday 13 June
We've seen Winter arrive since last I blogged....today especially is freezing and we're hoping the heavy rains that have been forecast will make their appearance as our dam levels are so low. Snow has been reported in the Western and Eastern Cape as well as KZN and the Free State today. Actually.....I think it's going to storm later because Jimmy fixed the kitchen light last week!
Jimmy has been travelling quite a bit, Monday to Friday, and only been home 1 week in the last 4 but he is good spirits. We had our monthly appointment with Prof Novitzky on the 30th. Jimmy still had the rash on his chest area and under his arms and after ruling our allergies Prof is convinced that it has to do with his auto immune disease which developed as a result of the stem cell transplant. He doesn't want to put Jimmy on any more cortisone as he believes this had a big roll to play in Jimmy getting Pneumonia last year as a result of extended use of cortisone. We are monitoring it at the moment and it does look like it has calmed down a bit. He is also still battling with repeat eye infections but in the bigger picture it's not serious. I have to share with you that Jimmy put the dog's eye drops in his eye on Saturday...thankfully we had no side effects like cocking his leg on the lounge suite ;) We also got back some results - his platelets are sitting at 111 which is below the normal range again but this is to be expected as he is now completely off cortisone as well as the NPlate injections. The only thing of significance with the liver function test results was that his immunoglobulins are low (these are your antibodies). We are going to see how strong Jimmy is with winter here now and if he is too susceptible to infections then he will have a monthly infusion of antibodies. The swelling in his legs and feet is much better and his body doesn't seem as stiff anymore either. We also got back the M-protein results and these are still between 0% and 5% which is classed as remission.
The good news is that Jimmy has at long last started his Thalidomide maintenance treatment. We are going into the 3rd week already and so far so good as he hasn't presented with any side effects. He has even had a cold which did not develop into anything worse, which was a big relief. I just have to keep reminding him to take his temperature once a day! We see Prof on the 4th again for a routine checkup which won't be any great shakes.
And apart from this life has gone back pretty much to normal. Emma is nearly finished writing her midyear exams, the last one being on Wednesday and I have also been helping out at the high school with some exam facilitating. It was my birthday on Friday (21yrs + VAT) and we had a lovely family meal out. Emma and I are going away for a few days on a girlie road trip and I am really looking forward to this. I was very spoilt and got a Polar A360 fitness tracker for my birthday.
And then tomorrow Ewen, Jimmy's Dad, leaves for the UK for 4 months. He is going to spend some time with young Ewen who lives in Bourton-on-the-Water as well as take Isabel's ashes back to Scotland and go and visit their families. I am really going to miss him xx
Jimmy has been travelling quite a bit, Monday to Friday, and only been home 1 week in the last 4 but he is good spirits. We had our monthly appointment with Prof Novitzky on the 30th. Jimmy still had the rash on his chest area and under his arms and after ruling our allergies Prof is convinced that it has to do with his auto immune disease which developed as a result of the stem cell transplant. He doesn't want to put Jimmy on any more cortisone as he believes this had a big roll to play in Jimmy getting Pneumonia last year as a result of extended use of cortisone. We are monitoring it at the moment and it does look like it has calmed down a bit. He is also still battling with repeat eye infections but in the bigger picture it's not serious. I have to share with you that Jimmy put the dog's eye drops in his eye on Saturday...thankfully we had no side effects like cocking his leg on the lounge suite ;) We also got back some results - his platelets are sitting at 111 which is below the normal range again but this is to be expected as he is now completely off cortisone as well as the NPlate injections. The only thing of significance with the liver function test results was that his immunoglobulins are low (these are your antibodies). We are going to see how strong Jimmy is with winter here now and if he is too susceptible to infections then he will have a monthly infusion of antibodies. The swelling in his legs and feet is much better and his body doesn't seem as stiff anymore either. We also got back the M-protein results and these are still between 0% and 5% which is classed as remission.
The good news is that Jimmy has at long last started his Thalidomide maintenance treatment. We are going into the 3rd week already and so far so good as he hasn't presented with any side effects. He has even had a cold which did not develop into anything worse, which was a big relief. I just have to keep reminding him to take his temperature once a day! We see Prof on the 4th again for a routine checkup which won't be any great shakes.
And apart from this life has gone back pretty much to normal. Emma is nearly finished writing her midyear exams, the last one being on Wednesday and I have also been helping out at the high school with some exam facilitating. It was my birthday on Friday (21yrs + VAT) and we had a lovely family meal out. Emma and I are going away for a few days on a girlie road trip and I am really looking forward to this. I was very spoilt and got a Polar A360 fitness tracker for my birthday.
And then tomorrow Ewen, Jimmy's Dad, leaves for the UK for 4 months. He is going to spend some time with young Ewen who lives in Bourton-on-the-Water as well as take Isabel's ashes back to Scotland and go and visit their families. I am really going to miss him xx