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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Day 47

Hi
My father in law is now on day 47, and having fought off 2 colds which has taken it right out of him , all energy he had was being used to fight the cold , and with having the donor stem cell transplant, he has no energy what so ever.

We are no finding that it is a struggle to get him to drink , actually a struggle to get him to do anything , all he does is sit in the living room in the day with about 5 layers on and the heating on full and then goes to bed , he doesn't want to go anywhere or see anyone , I feel like he is slipping into a bit of depression , maybe as he doesn't see an end to the tiredness

I thought maybe him moving around and going out would help but he doesn't want to do anything . When he last seen the doctor he was told that if he gets another infection it may kick off the lymphoma again, which is making him worry now .

Any ideas or what will help to get him out of this cycle .

Answers

  • Hi

    Sorry to hear your father in law is struggling at the moment, just been having a chat with my wife who looked after me post transplant and whose memory of those first few weeks post transplant are better. We both think that it is early days yet.

    We tried to have a structured day, I remember just getting up showered and dressed and going downstairs was a massive effort. Once settled I watched some TV (I was never a TV fan but I had little other options). My wife would go off for a newspaper and return with goodies from a local bakery, I got to look forward to these treats. I had difficulty with drinks tea and coffee had a metallic taste so we tried a variety of different fruit flavoured cordials which I soon got used to. If eating is a problem try something like Complan, they gave it to me in hospital with ice cream, I got quite used to it.
    It would be good to try a short walk each day if only up and down a driveway or a few minutes along the street which might lead to seeing a neighbour for a bit of a chat.

    Maybe try a visit to a local coffee shop or visit the hospital cafe on appointment day. You could make contact with Macmillan Nurses, depending on where you live they may visit you and give you some support, and don't forget Anthony Nolan Patients Family team, they are always there to help you.

    Be patient, small steps one day at a time, and I'm sure things will improve, but also raise your issues with the transplant team, my wife used to keep a diary of my day to day progress which she took with her on the clinic days and which she could refer to and raise any issues, it just helped her to remember.

    Best wishes, keep in touch.
    Peter
  • Thanks Pete , it is so difficult to watch as he has always been a strong proud man , I feel like he just can't see the end of it , so won't try and do anything , but I will speak to my mother in law she is amazing .
    Keeping a diary is a good idea , I'll suggest that to her .
  • Michelle,

    I remember these feelings well and was probably very much the same as your father-in-law at about the same stage. Drinking and eating was a struggle and I too was inclined to stay in bed and had no motivation to get up and about. In hindsight that probably extended my recovery as it took longer to regain my strength.

    Peters advice is spot on and it's a case of taking small steps at a time and being patient. At day 47 it is still early days and he will be recovering from the after effects of the transplant still. His taste will be strange, but that like everything else will recover and return to normal. It's a case of finding something that he doesn't mind the taste of to eat and drink and even if that is all he eats then that's good. I survived for a long time on porridge and soups, supplemented by the nutritional milkshakes and pasteurised yoghurts. The small pots of rice pudding were also nice at the time.

    I also remember the difficulty staying warm and whilst the rest of the family were sweating with the heating turned up, I was shivering and wrapped up in a blanket. That like everything else will go away as your father-in-law recovers but I do remember it being many months. It will not be helped that we are going into winter.

    If he can get up and about a little to get the smallest amount of exercise it will help rather than staying in bed. Even if that is making his way from his bedroom to the living room. Getting up to go to the kitchen to get a drink or some form of snack will also give him a small amount of exercise.

    It will get better but it does take a long time, a lot more than he might expect. From our point of view all we can do is assure you and your father-in-law that it does get better and whilst it is easy for us to say be patient, we all know how it feels having been in that position ourselves. For many of us we didn't have the assurance of this forum, so hopefully this will help him know that he isn't alone.

    Take care and pass our regards on to your father-in-law.

    Steve
  • Hi Steve

    It's always good to read your replies and comments. You have a better memory than me so your comments remind me of things I've forgotten.

    I too had porridge every day for months, it was something I could manage with ease and had a variety of toppings, honey and maple syrup. I also went through tubs and tins of rice pudding, they were like comfort foods.

    You have also reminded me that I also sat during the day with one of those lightweight fleece blankets and that was during the Summer months! Happy days. I agree with everything you say and hopefully it will give some encouragement to Michelle's father in law.

    Hope you are keeping well.

    All the best,

    Peter.
  • Thanks Peter,

    I'm keeping very well thanks and feel as good as I did before all of this began, though my memory does laps at times - my chemo brain!!

    I'm glad the days of feeling cold are over but wasn't sure whether that was down to my skin GvHD or whether it is something that is common to SCT patients generally, perhaps due to the effect on our blood. I wonder whether some cells act like anti freeze and help us stay warm.

    I'd be interested to hear thoughts from others on shivering and feeling constantly cold.

    Cheers,

    Steve
  • Hi all,

    I'm now 6 months post-transplant and I definitely feel the cold far more than I used to. I've lost a little bit of weight post transplant which I don't think helps (the insulating layer of fat isn't quite what it was). I've really struggled as the weather has turned colder over the past few days. The effects seem worse at night when I can't get warm in bed.

    I think losing body hair post chemo must have an initial effect on our sensation to cold and I guess the weight loss also contributes (although I know not everyone experiences this).

    Anyway I would echo both Steve and Peter's comments. It's important to get up and about and try and maintain some sort of daily routine even if that is just getting out of bed, showering and going to watch TV. I was lucky and haven't experienced the chronic fatigue that others have had but the whole process took its toll on my physically and it was a good four months before I started to feel anything like my old self. You've got to stay positive - set daily and longer term targets. Day 100 is certainly one to look forward to and your father-in-law is well on the way to achieving that.

    Regards,

    Rob.
  • All off this rings so true.even now nearly three years post Sct fatigue is still a major issue but you just work through it.as for feeling the cold prior to aml I never really felt the cold,but now it's gloves coat and hat as soon as is gets cold.I recognise the worries about infection but this fades in time.
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