This has been a week of ups and downs but nothing serious. Increased shortness of breath on exertion, a little weight loss and some slight nose bleeds. It could have meant my blood counts were falling. This is a potential side effect of Rituximab and can occur quite suddenly anytime between now and February. Anyway in clinic this morning the blood counts were stable so I was trying to make 2+2=5! In fact my weight had recovered a little this morning and no further nose bleeds or breathing problems today. I think this is just part of the general background 'noise' of good and bad patches on the winding road to recovery.
The Rituximab IVI that I had 10 days ago has worked a treat. The EBV has dropped to zero and Prof thinks it will probably stay that way. It is one of the many weekly blood tests I have will continue to be closely monitored for the moment. As well as the full blood count and EBV they also checked the level of chimerism, kidneys, liver, magnesium, calcium, Ciclcosporin level and CMV! I think that is all!
Meanwhile the steroid dose continues to be decreased. Ten days ago I was on a hefty 40mg daily. 'Hefty' for a GP, not for a haematologist. By next Monday I'll be on 10mg with hopefully a further reduction next Thursday. The other immunosuppressant, Ciclosporin, stays the same for the moment.
I also see the dietitian every week because my BMI is a little low. This week she added yet another food supplement, Calogen, to the Scandishakes, Fortisips and Complan!! When the Complan and Fortisips are used up then I just continue with the first two three times a day. At least the Scandishakes taste OK. Haven't tried the Calogen yet.
A couple of other things. The reason I don't get clear answers about the MRD (Minimal Residual disease) result is because my tumour doesn't have an MRD marker. Apparently only 50% of tumours have the marker and mine isn't one of them. Instead the lab fall back on an older test called FISH which is much less sensitive but a lot better than nothing.
The other thing Karine and I learnt was how very very expensive one of my drugs is. The anti-fungal preparation costs £300 per day. I have got five little packets of this stuff plus an opened packet, enough for about six weeks, £15,000 worth! No wonder the NHS is in financial trouble!
Meanwhile I continue to slowly improve. The GvHD is under control thanks to the steroids and Ciclosporin, it had better stay that way as the doses are reduced!
Many of the side effects of the chemotherapy are gone but the Cilosporin causes a variety of annoying problems. Dry mouth and food tasting of cardboard. The fatigue is gradually lessening.
I've stopped taking afternoon naps. Still getting insomnia from the steroids, hopefully that will go in the next few weeks as I come off them altogether. In the meantime reducing the dose quite quickly like this is making me very trembled all over, a recognised side effect. Another new experience. This year has certainly been rather novel. My side effects are having side effects as Snoopy said!
My brain seems to function in a rather random manner. I think one word and say another, forget things I know full well and sometimes quite simple tasks defeat me yet when I come back to them a few hours later I have no problem. We played a board game with Noelle and Graeme a few days ago and I made a complete dog's dinner of the final scoring so next time someone else will have do it. No one seemed to mind too much, the fun was in the playing of the game. Talking to other stem cell transplant patients at rehab this lunchtime several of them complained of the similar problems with words and memory. It's 'chemo brain'. No one seems to know how long it will last but it does go after a while.
Enough for now.
* Arctic Monkeys - 'Whatever People Say Say I Am ....' - 1st track
Thursday 26 November 2015
Saturday 21 November 2015
D+121 - "It is not in the stars to hold our destiny but in ourselves* "
Another quote about the future I came across a year or two ago is from Ambrose Bierce's "Devil's Dictionary", a book of satirical and cynical definitions.
"Future, n. That period of time in which our affairs prosper, our friends are true and our happiness is assured."
A slightly different blog to usual. Karine spotted an article in the Guardian - NHS Mandate article yesterday about the consultation period for the NHS Mandate which is updated every year. It doesn't seem to have been publicised very much and the consultation period seems quite short.
There is a link to the Mandate in the first paragraph of the article, it's quite short and you can comment on it. Not being able to sleep because of the steroids I stuck down a few randomn thoughts last night. They don't always address the questions asked but I went ahead anyway! Comments positive and negative welcome!
4. Do you agree with our aims for the NHS Mandate to NHS England?
The aims seem very worthy but so general that they don't address the grass roots problems of the service as seen from the patient's point of view or from the staff's perspective.
5. Is there anything else we should be producing in sending these to NHS England?
Firstly, please please stop reorganising/restructuring the service every 2-3 years or so. Each reorganisation is a huge distraction and a waste of clinical and administrative time. They rarely achieve what they claim to. Equally they are less catastrophic than some of their critics would have us believe. As a doctor for over thirty years I very quickly learnt that if I kept my head down each new reorganisation would be replaced quite soon by another one and that the basic organisation would carry on very similarly.
Secondly, to relieve the huge pressure on the secondary care service we need proper funding of primary care, proper funding of mental health care, proper funding of social care and proper funding of the Public Health Service. Without all of this the hospital service will continue to face increasing pressure on its workload, staffing levels, financial situation and most importantly the quality of care received by patients
6. What views do you have on our overarching objective of improving outcomes and reducing health inequalities including by using new measures of comparative quality for local CCG populations to complement the national outcomes in the NHS Outcomes Framework?
Any new measures of validating CCGs need to be properly evaluated before being introduced. Evaluation should include looking at outcomes, mortality and morbidity rates as we'll as patient experience of the service.
Whatever measures are introduced should impose little or no extra administrative load on administrative and clinical staff.
7. What view do you have on our priorities for the health social care system?
Weekend Mortality:
The reason for the the different mortality figures for Sunday admissions needs to be properly investigated and understood before coming up with solutions. The BMJ article that sparked this debate was an epidemiological study that highlighted the association between the day of the admission and different mortality rates. The authors made it very clear they were claiming an association and not any cause and effect.
The government seems to have already made up its mind that making doctors work weekends is the answer to the problem. It doesn't seem at all interested in finding why this is happening, but seems much more interested in a simplistic once size fits all quick political fix. The vast majority of doctors do weekend work anyway. Interestingly patients kept in over the weekend have lower mortality rates suggesting that they receive good quality care over the weekend.
Why is the mortality rate higher for Sunday admissions? Here are a few possible reasons....
- Difficulty accessing primary care services.
- A different clinical mix of patients are admitted on Sundays, if so how are they different and why is there a difference?
- Differences in the amount of medical staff, consultants and juniors, on duty
- Levels of of nursing staff on duty.
- Just having the right numbers of staff is not enough, many nurses and doctors are specialised. Each unit in the hospital needs an adequate supply of such nurses. Quality of care will suffer if a psychiatrically trained nurse has to cover an oncology ward, or a chemotherapy trained nurse has to do weekends in psychiatry.
- Over reliance on locums and bank nurses at weekends compared to during the week.
- Reduced access to investigations.
There may be different solutions for different specialities. There is evidence that the level of nursing care in stroke units and ITU may be the important factor.
Finally the government is presuming that all these excess deaths are avoidable.
8. What views do you have on how we set the objectives for NHS England to reflect their views in this consultation?
It is not clear to me that NHS England has been involved in the drafting of the Mandate but rather that it will be imposed on them and that what will be imposed will be what the Department of Health and the Treasury decides. NHS England's input seems to have been the very important Five Year Forward Plan but nothing after that, I hope I'm wrong!
9. Do you have any other comments?
This consultation has been very poorly publicised. I only found out about it because someone else pointed it out to me and I am someone who reads the medical press. Either I need to be more attentive or the department needs to improve its publicity.
Whilst we're in political mode this week's BMJ reports that Andrew Lansley, now a member of the House of Lords has become an advisor to Roche Pharmaceutical amongst other health related companies. Guess who introduced the Cancer Drug Fund and guess which drug company was one of the main beneficiaries of this policies. David Cameron said in 2010 that he wanted to put a stop to this revolving door between government and industry!
As a cancer patient I have a rather personal interest in having the best drugs available for treating cancer but not at the expense of other specialities and other patients. Didn't someone say 'we are all in this together', it doesn't always seem like that. What makes cancer more special than say another fatal disease such as heart failure? - nothing at all I would suggest but it is a populist policy and good for catching votes.
Enough, rant mode off!!
By the way, I'm doing fine!
* Shakespeare - not sure where in Shakespeare.
It turns out this is a misquote from Julius Caesar! - "The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings."
"Future, n. That period of time in which our affairs prosper, our friends are true and our happiness is assured."
A slightly different blog to usual. Karine spotted an article in the Guardian - NHS Mandate article yesterday about the consultation period for the NHS Mandate which is updated every year. It doesn't seem to have been publicised very much and the consultation period seems quite short.
There is a link to the Mandate in the first paragraph of the article, it's quite short and you can comment on it. Not being able to sleep because of the steroids I stuck down a few randomn thoughts last night. They don't always address the questions asked but I went ahead anyway! Comments positive and negative welcome!
4. Do you agree with our aims for the NHS Mandate to NHS England?
The aims seem very worthy but so general that they don't address the grass roots problems of the service as seen from the patient's point of view or from the staff's perspective.
5. Is there anything else we should be producing in sending these to NHS England?
Firstly, please please stop reorganising/restructuring the service every 2-3 years or so. Each reorganisation is a huge distraction and a waste of clinical and administrative time. They rarely achieve what they claim to. Equally they are less catastrophic than some of their critics would have us believe. As a doctor for over thirty years I very quickly learnt that if I kept my head down each new reorganisation would be replaced quite soon by another one and that the basic organisation would carry on very similarly.
Secondly, to relieve the huge pressure on the secondary care service we need proper funding of primary care, proper funding of mental health care, proper funding of social care and proper funding of the Public Health Service. Without all of this the hospital service will continue to face increasing pressure on its workload, staffing levels, financial situation and most importantly the quality of care received by patients
6. What views do you have on our overarching objective of improving outcomes and reducing health inequalities including by using new measures of comparative quality for local CCG populations to complement the national outcomes in the NHS Outcomes Framework?
Any new measures of validating CCGs need to be properly evaluated before being introduced. Evaluation should include looking at outcomes, mortality and morbidity rates as we'll as patient experience of the service.
Whatever measures are introduced should impose little or no extra administrative load on administrative and clinical staff.
7. What view do you have on our priorities for the health social care system?
Weekend Mortality:
The reason for the the different mortality figures for Sunday admissions needs to be properly investigated and understood before coming up with solutions. The BMJ article that sparked this debate was an epidemiological study that highlighted the association between the day of the admission and different mortality rates. The authors made it very clear they were claiming an association and not any cause and effect.
The government seems to have already made up its mind that making doctors work weekends is the answer to the problem. It doesn't seem at all interested in finding why this is happening, but seems much more interested in a simplistic once size fits all quick political fix. The vast majority of doctors do weekend work anyway. Interestingly patients kept in over the weekend have lower mortality rates suggesting that they receive good quality care over the weekend.
Why is the mortality rate higher for Sunday admissions? Here are a few possible reasons....
- Difficulty accessing primary care services.
- A different clinical mix of patients are admitted on Sundays, if so how are they different and why is there a difference?
- Differences in the amount of medical staff, consultants and juniors, on duty
- Levels of of nursing staff on duty.
- Just having the right numbers of staff is not enough, many nurses and doctors are specialised. Each unit in the hospital needs an adequate supply of such nurses. Quality of care will suffer if a psychiatrically trained nurse has to cover an oncology ward, or a chemotherapy trained nurse has to do weekends in psychiatry.
- Over reliance on locums and bank nurses at weekends compared to during the week.
- Reduced access to investigations.
There may be different solutions for different specialities. There is evidence that the level of nursing care in stroke units and ITU may be the important factor.
Finally the government is presuming that all these excess deaths are avoidable.
8. What views do you have on how we set the objectives for NHS England to reflect their views in this consultation?
It is not clear to me that NHS England has been involved in the drafting of the Mandate but rather that it will be imposed on them and that what will be imposed will be what the Department of Health and the Treasury decides. NHS England's input seems to have been the very important Five Year Forward Plan but nothing after that, I hope I'm wrong!
9. Do you have any other comments?
This consultation has been very poorly publicised. I only found out about it because someone else pointed it out to me and I am someone who reads the medical press. Either I need to be more attentive or the department needs to improve its publicity.
Whilst we're in political mode this week's BMJ reports that Andrew Lansley, now a member of the House of Lords has become an advisor to Roche Pharmaceutical amongst other health related companies. Guess who introduced the Cancer Drug Fund and guess which drug company was one of the main beneficiaries of this policies. David Cameron said in 2010 that he wanted to put a stop to this revolving door between government and industry!
As a cancer patient I have a rather personal interest in having the best drugs available for treating cancer but not at the expense of other specialities and other patients. Didn't someone say 'we are all in this together', it doesn't always seem like that. What makes cancer more special than say another fatal disease such as heart failure? - nothing at all I would suggest but it is a populist policy and good for catching votes.
Enough, rant mode off!!
By the way, I'm doing fine!
* Shakespeare - not sure where in Shakespeare.
It turns out this is a misquote from Julius Caesar! - "The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings."
Tuesday 17 November 2015
D+117 - "Troubles come not singly....... * "
Actually things aren't that bad and in any case the title is a misquote, the proper quote is below.
My EBV has risen so I'm in DCU all day having an infusion of something called Rituximab which costs a fortune, a £1000 pounds someone told me at the weekend but I haven't checked. I will be here all day, it is a very long slow IVI. I'm hoping for a long boring day, being interesting and causing excitement in a medical setting is not to be recommended!
EBV stands for Epstein Barr virus and causes glandular fever amongst other things. My family has a bit of a history with this particular bug. Most of us have had it and were quite poorly with it. The only medical exam I ever failed was in the immediate aftermath of EBV. My father died of it.
Because both my sister and I have had it I'm vulnerable to it. After you've had EBV it survives in some of the white cells but the immune system normally controls this without any problem. In case you think we Thornhills are peculiar in this respect 90% of the world's population carry this bug.
The reason the EBV has risen is because the increased immunosuppression needed to control the bowel GvHD means my bone marrow is being held back and so is no longer keeping the EBV at bay. It is only in recent years that it has become routine to monitor EBV levels. Before that we didn't really know how to test for it. When new tests came along it took time to work out which tests to use for monitoring, how often to do the monitoring and at what level to treat it.
The treatment can be quite toxic. Reactions to it are common and it reduces all my blood count parameters so this is not a treatment to undertake lightly. Previous normal practice was to treat when the patient became ill. The problem with that is that EBV in immunocompromised patients can make us very ill quite quickly and it can easily become dangerous, "ask for me tomorrow and you shall find me a grave man" as the dying Mercutio quipped in Romeo and Juliet.. So this IVI is very welcome. So far it is going very well, no adverse reactions.
Over the past week my energy levels have improved and my exercise level is getting back to where it was before the GvHD. Yesterday Graeme Walker came round and took me to Gunthorpe. We walked along the river for nearly an hour and a half, albeit rather slowly, and it felt absolutely fine. It was wonderful to be out in the countryside and the fresh air.
At the weekend we had some friends round on Saturday evening partly to say 'thank you' for their support and partly to celebrate Karine's birthday. Alexi and Lucy stayed with us and we had a lovely birthday Sunday lunch 'en famille' with Charlotte, Stewart, Bethany and Eden as well. All in all a very enjoyable and relaxing weekend.
* 'When sorrows comes they come not in single spies but in battalion form'. Hamlet
My EBV has risen so I'm in DCU all day having an infusion of something called Rituximab which costs a fortune, a £1000 pounds someone told me at the weekend but I haven't checked. I will be here all day, it is a very long slow IVI. I'm hoping for a long boring day, being interesting and causing excitement in a medical setting is not to be recommended!
EBV stands for Epstein Barr virus and causes glandular fever amongst other things. My family has a bit of a history with this particular bug. Most of us have had it and were quite poorly with it. The only medical exam I ever failed was in the immediate aftermath of EBV. My father died of it.
Because both my sister and I have had it I'm vulnerable to it. After you've had EBV it survives in some of the white cells but the immune system normally controls this without any problem. In case you think we Thornhills are peculiar in this respect 90% of the world's population carry this bug.
The reason the EBV has risen is because the increased immunosuppression needed to control the bowel GvHD means my bone marrow is being held back and so is no longer keeping the EBV at bay. It is only in recent years that it has become routine to monitor EBV levels. Before that we didn't really know how to test for it. When new tests came along it took time to work out which tests to use for monitoring, how often to do the monitoring and at what level to treat it.
The treatment can be quite toxic. Reactions to it are common and it reduces all my blood count parameters so this is not a treatment to undertake lightly. Previous normal practice was to treat when the patient became ill. The problem with that is that EBV in immunocompromised patients can make us very ill quite quickly and it can easily become dangerous, "ask for me tomorrow and you shall find me a grave man" as the dying Mercutio quipped in Romeo and Juliet.. So this IVI is very welcome. So far it is going very well, no adverse reactions.
Over the past week my energy levels have improved and my exercise level is getting back to where it was before the GvHD. Yesterday Graeme Walker came round and took me to Gunthorpe. We walked along the river for nearly an hour and a half, albeit rather slowly, and it felt absolutely fine. It was wonderful to be out in the countryside and the fresh air.
At the weekend we had some friends round on Saturday evening partly to say 'thank you' for their support and partly to celebrate Karine's birthday. Alexi and Lucy stayed with us and we had a lovely birthday Sunday lunch 'en famille' with Charlotte, Stewart, Bethany and Eden as well. All in all a very enjoyable and relaxing weekend.
* 'When sorrows comes they come not in single spies but in battalion form'. Hamlet
Wednesday 11 November 2015
D+111 - "Now Hands That Do Dishes.....* "
Warning, if you are nervous about catching an infection or are obsessional about cleanliness then it is perhaps best to skip this blog.
One of the things drummed into immune depressed patients is the importance of hygiene. An allograft stem cell transplant carries a 10% mortality risk and it seems to me that the biggest contributor to this figure is infection. Graft rejection, GvHD liver disease, blood clots and kidney troubles are other factors that spring to mind. A haematologist might not agree precisely with all this but I don't think I'm far off.
To reduce infection risk we are kept in hospital in isolation till our white cells start to reappear. The individual rooms all have filtered air blown into them which then escapes via the two sets of doors that separate the room from the rest of the ward or via the ensuite shower room. The doors are kept shut at all times. The air is filtered so that the level of dust in the room is kept to a minimum. Riding on normal household dust are huge numbers of fungal spores. Think of the late winter sun streaming in obliquely through the window and how much dust can be seen floating in the air, well that's what we see in our house anyway!
The hospital room and shower room are carefully cleaned seven days a week, all flat surfaces wiped and the floor mopped to reduce the dust. We are urged to keep the number of different people visiting to a minimum to reduce exposure to bugs. Some hospitals actually limit the maximum number of people you are allowed to have visiting, Nottingham is a little more flexible. I had two visitors most of the time, Karine and Charlotte with Alexi and Lucy visiting from Newcastle whenever they could, that was it.
We are all on continuous antimicrobial drugs, antiviral, antifungal and two different antibacterial preparations whilst in hospital and will stay on some of these for life.
Nevertheless the biggest risk of infection comes not from others but from ourselves and in particular from our hands. Hands go everywhere on our bodies and on the objects around us and pick up myriads of bugs as they do so. Many bugs can survive quite happily for long periods away from a host. Hand washing is therefore of paramount importance and not just after going to the toilet. In hospital we are given antiseptic wipes to use before each meal so as not to transfer bugs to our mouths. In the first few weeks of chemotherapy I was too ill and shocked to realise this properly until I was put right by the nurses. Mouths and to a lesser extent ears and eyes are the major portals of entry for the bugs.
At home the same personal hygiene rules apply especially in the first few months or if the level of immune suppression has to be increased as mine has been last week because of the GvHD. Apart from hand hygiene the other big thing is door handles, particularly in the kitchen and most important of all the fridge door handle. Karine is brilliant at protecting me from myself and at wiping everything including food preparation areas, door handles etc. The house is littered with antibacterial wipes, alcohol gel and Dettol and dilute bleach. I try to only touch things that are clean and to consciously not wipe my eyes or mouth with my hands. It was surprising how often I was doing these things.
It his hard to keep a sensible perspective on all of this and not go over the top or become blasé and lackadaisical. It pays to not have too much imagination or you would never touch anything ever again.
Other advice includes not shaking other people's hands or hugging friends. On discharge last week I was reminded specifically about this. I quite often wear gloves when we go out and Karine opens doors for me. I'm to avoid crowded places like theatres, cinemas, pubs, public transport (if possible) and busy restaurants. We've eaten out twice so far but only when we thought somewhere would be quiet. I've taken to checking the hygiene standard ratings on the the Food Standards Agency website. Anything less than five stars will get a miss. I've even been been told to avoid supermarkets at busy times for the next couple of weeks, a dreadful hardship! Pets and children can also pose a risk.
As for food I am on a 'pregnancy diet' for the first year or so. No soft or blue cheeses, eggs must be cooked to death, pates are out. No takeaways, avoid reheated food, shellfish, cream cakes, live yogurts, prepacked sandwiches, loose cooked sliced meats and anything not completely fresh. It is surprising how even some hard cheeses are made with unpasteurised milk. Unfortunately the label doesn't always tell you whether something has been pasteurised or not. Anything not cooked needs careful washing, apparently dried fruit is not cooked. Often there is uncertainty. For example what about the dried fruit in muesli? We just avoid such foods. Alcohol is to be kept to a minimum though it is not completely banned. I think I've had three small glasses of wine in the last six months. Surprisingly, it hasn't been a great hardship.
Despite all of this I'm eating eating well and having a rich varied diet thanks to Karine. At times I feel I'm being rather paranoid about infection but having read the blogs of other sufferers and come across patients running into very serious trouble with infection including some fatalities I don't think I'm being too paranoid. The bugs really are out to get me! Nevertheless life is starting to get better generally, the distortion of my taste buds is lessening and I am very gradually starting to enjoy food more and more.
* Fairy Liquid advertising jingle!
Thursday 5 November 2015
D+105 - "Get Me Out Of Here* "
Hurrah, it looks like I'm turning the corner. My immunosuppression treatment was stepped up further three days ago - cyclosporin drip - and everything has slowed right down. Yesterday was my last day on the IVI so it's back onto oral therapy now, big doses of ciclosporin (for anyone interested - 130mg bd ) and steroids (prednisolone 50mg bd). Hopefully that will be enough to control the GvHD. Then we start the gradual process of reducing both of these.
Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.
Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime. Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.
All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.
* Paul McCartney "New" track 14
Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.
Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime. Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.
All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.
LATE NEWS - 2.20 pm - Prof has just popped in between clinics and done a quick review, I'm going HOME later today - fantastic!!
* Paul McCartney "New" track 14
Sunday 1 November 2015
D+101 - "Another Day* ""
Hurrah, it looks like I'm turning the corner. My immunosuppression treatment was stepped up further three days ago - cyclosporin drip - and everything has slowed right down. Yesterday was my last day on the IVI so it's back onto oral therapy now, big doses of ciclosporin (for anyone interested - 130mg bd ) and steroids (prednisolone 50mg bd). Hopefully that will be enough to control the GvHD. Then we start the gradual process of reducing both of these.
Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.
Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime. Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.
All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.
* Paul McCartney "New" track 14
Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.
Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime. Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.
All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.
LATE NEWS - 2.20 pm - Prof has just popped in between clinics and done a quick review, I'm going HOME later today - fantastic!!
* Paul McCartney "New" track 14
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