Hello, well not really sure where to start. Ive been on here before and had some great support and understanding from members in the past, and hope today, someone just may say something to help in someway....My husband, 57yrs was diagnosed Aug 18 with AML luekimia, (with just a few weeks to live, we were later told). after 4 rounds of chemo, He had a SCT March 19, my grown up daughter was his doner. He has been on immune suppressants/ stemcell drugs and many other medications for such a long time now. (for past health problems, back op, IBS, depression). I thought he was getting there to a degree in the early part of summer gone, we started doing jobs in the garden and getting out for walks with the dog. Yes, all was a push but I could see an improvement. Yet, many a time he would sit very quietly and stare into space indoors or out in the garden and never really properly explained, other than, he's not the same person, he can't think of the words etc and would stammer a bit. They checked him for stroke, but all clear and 'chemo' brain was mentioned. We kept hoping he will get better. We are nearly 2 years on now post transplant, I feel he's just got worse, the belly pains and sickness pains he has are almost unbearable now, everyday having some pain or another (he is trying to get off steroids) been on them too long. altho the hospital are fantastic, I don't know if there is an answer to this, it all feels like "lets try this" so we try another tablet, or wean off one, its been such a long, long road. I really don't know if he will come through, living like this is no life. He has not reached out to anyone, he has not been close to his side of the family and over the years friends have disappeared (I write on these forums, or try to get help) but thats how he was before, so I guess we are who we are. But I get angry, when I see other people who have had cancer that see this as a 2nd chance and live life to the full or appreciate family, he spends his days mainly in bed now. Yet another part says, how can he 'do', with such pain? I go through all the motions as his wife, feel guilty doing my own thing, if I enjoy life, like why do I have the right? he has finally agreed to speak with someone at Anthony Nolan for phone support, but I just don't know if its too late now. He looks like he has given up, crying a lot, maybe thats his right.... are we, his family, asking too much, to live with this pain everyday? In the early part of transplant, he lived on ensure milkshakes, its still the same, with just a bit of porridge or mash and veggies, (child size) I worry 2 years down the line his stomach/body has not had the proper nourishment it needs to repair itself. He says I don't understand, when you feel sick you just can't eat. Its just all a mess. Lee
Hi again Lee Leedee, sorry I did not reply sooner but was recovering for my COVID jab yesterday.
I am so sorry to hear about his ongoing 'left overs' following SCT. For some the post treatment can be as hard if not harder than the SCT. The main thing that stood out to me in your post is he is willing to talk with Anthony Nolan....... its never too late.
We were assigned as Phycologist on day one when we first went through the doors of my SCT Unit and she walked with us before during and after both my Allo SCT....... but even then, two year post SCT number 2 I was still having some issues and that is when I connected in with our local Maggie’s Centre, they helped me to unpack the 'stuff' I was carrying around in my invisible rucksack all these years...... it was not a quick fix and did require me to stick with it. These folks are amazing and a lot of these services have moved onto online video support groups and one on one - worth a check out.
There are some people who do suffer from PTSD following SCT and do need professional help to navigate their way free...... eating and pain issues in some measure can be directly related to PTSD.
I had great difficulty getting back into eating but only for 4-5 months but my Specialist Nurse Consultant was badgering me all the time to 'get a grip' as the further this went on the harder it would be to climb out of the hole. She said like any muscle in the body, the stomach will get out of shape and the road back can be hard and long..... is he seeing a dietitian as I was with one immediately after each SCT?
Pain...... it took about 3 years for me to eventually ask my GP to remove my strong pain meds from my repeat prescription.... I still have some pain but I have come to understand that the less I do the more the pain develops..... I am not saying this would be the case with your husband but it was a 'light on’ moment for me.
Always around to listen and support as best as I can.
((hugs))
Hi again, first never ever feel guilty about expressing your thoughts as this is what the group is for.
A SCT journey is very challenging and everyone looking in need to understand that it’s not a walk in the park, more a climb up a craggy Scottish mountain in very bad weather without the right equipment a d sometimes we gave to look from mountain rescue.
If you have read my profile, back in December 2013 my condition became very aggressive so I was given two choices. Go direct to palliative care and I would have 2-3 years or face this head on with two Allo SCTs and go down fighting.
Yes it was all hard work, a lot of tears, a lot of stress, a lot of pain..... but I am now 4-5 years past my ‘sell by date’ and doing good.
It was a roll of the dice moment, was told it would be very hard work and indeed I may not survive but I did.
It has taken years to rebuild ‘life and living’ and this required a lot of self and joint determination between my wife and I.
I have seen 2 new granddaughters born that I most likely would not have meet and done things that were only a dream back in 2013.
I do hope you don’t mind me saying that he needs to man up, get a grip and navigate a way forward and if this requires him to swallow his pride and look for help, then he needs to do it....... I had to do it.... it’s all about looking to the future and there is always a future until there is none.
Again, always around to help and support ((hugs))
Hi Lee and good to hear things are going ok, let’s look for some positive changes to happen, and great you are getting out for exercise as I found this to be one of the best recuperation tools.
Its be an interesting winter up with us, snow on the ground since before Christmas but we are all set up for this and it does not stop us getting out and about.
The picture of the car in the snow was taken just up the hill from us and the reading on the weather station just a few miles away was two nights past - do take care and come back with an update soon - warm Highlander ((hugs))
