Hi all, last time I posted I had just gone in for my transplant, pleased to say I was released last Tuesday after my lovely new cells fully engrafted. Initialy I was on a high and so happy as I’d got through treatment so well with no temps and minimum side effects, however since being home, fatigue has hit me like a brick wall. I know it’s early days ( I’m not very patient!) but it’s depressing me that I can do so little? I push myself to try to do things but it’s a struggle. How did other members cope? And how long did it last? My consultant says up to 6 weeks feeling like this
Thank you so much for keeping us updated on your progress. I am so delighted to hear that your stem cell transplant was successful especially with little to no side affects. However, I am sorry to hear about how fatigue is affecting you. It can be quite overwhelming and some people after treatment have similar affects. Lizzie, feel free to share some of your concerns with, ‘fatigue on the increase,’ topic thread where others share their thoughts and feelings about fatigue.
Congratulations on mission accomplished and I am so glad to hear you had minimum side effects. My transplant was cancelled so can’t offer any advice, but I am sure you will the need the same patience and fortitude you used to get you through your transplant to aid in your recovery. I wish you remission from “infinity to beyond”
Hi, thanks so, so much for updating us with your great progress. You and your body have been through so much, emotionally and physically and I believe that I keep going and keep going and then the delayed action of my fatigue sets in. I also have an unfortunate habit of feeling a bit better and then overdoing it !!!. Someone said patience is a virtue and I am no good at that either. Yes, it is early days and perhaps baby steps can be beneficial. I find rest, a bit of fresh air, very gentle exercise and a very few needed tasks and a very slow build up to whatever my new you might be. Please let us know how you are going, take care and a few treats are in order.
Hi @Lizzietheliz1 Congratulations on a successful SCT. I had mine 10 years ago. As I had had 2 surgeries (one involved heart and lung) and several relapses previous to my transplant my case is different to yours, as is each person’s. I can remember sitting in front of my consultant 18 months post transplant and complaining how exhausted I was. He smiled and said that it was early days and I had been through a lot and I needed to be more patient.
There are a few posts about fatigue post treatment on the forum, and how people deal with it. Don’t be too hard on yourself and just try and do a little bit each day. Most people find a bit of exercise (starting with a gentle stroll around the garden or to the shops) lifts the spirits and helps recovery.
Have a look in the life after treatment section. Best wishes
How have the last few months been for you @Lizzietheliz1, have you noticed any change or improvement to your fatigue?
Thank you all for your kind messages, I am now struggling with a really sore mouth, this also effects my appetite, my bloods are all good but remain house bound as my consultant wants me to stay inside rather than risk flu. So here I am. Had a few low moments this last week ( probably due to my impatience!) sore mouth is grim tho.
Much better thank you, have been quite poorly with extreme depression but in medication now. I have got some skin gvhd going on which is really itchy and uncomfortable? Does anyone else get this?
I’m 3 months post transplant and feel much stronger but still a way to go yet I feel.
It really is a slow process isn’t it and even slower when you have been housebound with your mind. My mind would really take over then. Is the medication helping your extreme depression? Don’t forget we are all here to support you with it and also the Bloodwise support line on 0808 2080 888 is available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. I tend to forget how far I have actually come because I am right in it. Please keep posting and sharing.
Glad to hear you’re feeling stronger, although I’m sorry to hear you’re suffering with skin GvHD, and your challenges with your mental health. Have you been offered any emotional support/counselling? Am so pleased you’ve popped back to let us know how you are.
I’m starting counselling on Monday, but although the medication has helped a lot, I’m still struggling with a lot of things. I can’t imagine ever being my old self again. Doesn’t help looking in the mirror and seeing myself with white hair that’s very slow to grow, and I’m still too thin despite eating as much as I can.
Friends and family all just think I’m ‘ well’ again now and expect me to act like it, which I try to do for their sake.
Sorry guys having a bad day
Lizzie please don’t apologise for sharing how you feel or the challenges you’re facing, this is what the forum is for and I’m so pleased you’ve shared some of what’s going on for you. I’m sorry your friends and family seem to think everything is fine now, as I’m sure others can relate often the period after treatment finishes can be as challenging as during.
Lizzie, we are here to support you during the bad days. Don’t forget the Bloodwise support line on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. My hair is also very thin and I have a skin cancer bald patch as well and I just have to block it out of my mind otherwise I would never leave the house. I find friends and family have an unconscious need to think I am ‘cured and recovered’ and it is only by having open and honest conversations that they know what it is like to be me. Please do let us know how you find the counselling on Monday, although it is a process and not an instant fix, I am afraid. Take lots of care of yourself and spoil yourself you are special.
How are you doing at the moment @Lizzietheliz1, how has counselling been going for you?
Hi Dawn thank you for checking in on me,
Counselling quite difficult and to be fair I’m not sure what I was expecting? I still have a lot of anxiety which is a challenge .
Dear Lizzie,it’s good to see your reply, how long is it since you had your transplant ? Do you feel you have progressed at the rate your should or is fatigue still a major issue for you. Fatigue is very challenging and I can see how easily it could cause depression and and anxiety, I personally find it very frustrating.
Hi. Although I tried counselling I found that I couldn’t get on with it, maybe because I had struggled on for so long without it that I had found other ways of coping. Is there any reason you are finding it difficult…unable to communicate with counsellor or struggling to express feelings perhaps? Sending best wishes xx
As you approach 6 months post transplant, I approach 6 years; and no, I never thought for one moment that I would survive this long.
It is my opinion that it is important to learn to accept the worst outcome of your illness, and then you will discover everything else becomes a positive bonus. But do not expect anybody who has not been on this journey to understand this mental position.
Take each day at a time, making the most of it within your capabilities. Do not plan longterm, as the dissapintment of not achieving will only bring on a wobble.
Remember this is all an incredibly hard situation for partners/loved ones to accept and you will put them through the mangle.
Listen to your body and pay attention - you can be bloody sure that the GVHD is looking for any slight excuse to flare.
If you are tired stop - and rest. Whilst I am over the worst of the fatigue (3 years of home early from work for a daytime nap) I still hit a wall if I overdo it.
Hi Lizzie, I am sorry you are finding counselling quite difficult and that you still have a lot of anxiety. Yes, counselling is not for everyone and it is not a quick fix, it also has to be with the right person that you feel you have a connection with and can really share with. Is your anxiety pre-existing or post diagnosis? I found I was very anxious post diagnosis and my emotions were on high alert for a long, long time and they have subsided very slowly over time. I have found CBT (cognitive behavioural therapy) helped me because I realised what I was doing and feeling, but it also helped me to chose to change my thoughts and actions, accept my feelings and then my anxiety slowly subsided, but it did take time. Please keep telling us how you are and how you are feeling as I expect so many of us will relate to them and we are all here to support you.
Hi Robin, it is good to hear from you again. I am girl for a little nap too. I am also a ‘Lady that lunches’, I don’t do evenings and do most of my exertion in the mornings. However when I worked full time I just worked, ran a home and slept for 5 yrs. I was lucky that I had accrued a lot of leave and flexi leave before diagnosis which I slowly used up over that time as well. Your words of ‘hitting a wall’ really resonated with me. Take care of yourself and please keep telling us how you are and how you are doing.