Oh @Caroline30 well done on making it through ‘the talk’. When I went in with my daughter, I came out and had a panic attack.
This forum supported me and made me realise they have to tell you everything to cover themselves and so that you can make an informed decision. Someone suggested flipping the stats to a positive which I found quite empowering.
Be aware that they usually follow up the talk in writing so expect a chunky letter.
Quickly popping in to say ‘have courage’ - the talk is dreadful - as Erica says they have to cover absolutely everything. I came out of mine and said to my husband that I felt worse and more pessimistic than I had when I got my initial diagnosis.
However, I can offer really positive vibes. Today is the fifth anniversary of my transplant. I have survived chronic skin Graft-versus-host-disease, admission with a very high calcium probably due to the Graft-versus-host-disease, Covid, PCP pneumonia, and not only am I here to tell the tale, I am fit and well and active. We are planning our first summer holiday abroad for six years (nothing too rash, just taking the car to the Benelux countries). I have grandchildren that I would not have lived to see without the transplant and life is good. It will never be the same as it was before, but all the fear and unpleasantness has been enormously worthwhile.
Oh @diana how really great to hear from you and now 5 yrs later you are supporting others.
Your 5th anniversary oh, I can feel a celebration on the cards for you, enjoy and really look after yourself and please do keep posting
Hi @Kaylasmom I have responded to your other post.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do tell us about how you are struggling.
Be very kind to yourself.
Hi @Kaylasmom, there’s no doubting that there are plenty of struggles post-transplant. My post was intended as something positive that is there at the end of the tunnel.
You don’t say how long ago your transplant was. There are lots of people on the forum with different experiences from different transplant centres. My transplant was in Southampton and I was lucky to have brilliant Bone marrow transplant nurse specialists who were available by phone in office hours.
Don’t struggle alone, the forum is great for support.
Just to echo what @Diana said—it’s not an easy journey, but there is definitely light at the end of the tunnel!
I had my transplant in July, and I’ve actually found the recovery phase even more challenging than the treatment itself. During treatment, there were constant updates and short-term goals to focus on, whereas after the transplant, it can feel like you’re stuck with so many restrictions and the “end goal” still feels far away.
What has helped me is learning to appreciate the small things and setting shorter milestones. I pictured myself moving (we changed flats in October), then looked forward to Christmas, and this month, I got a puppy! Each time, I told myself, I hope I’ll feel better by then, and looking back, I realize how quickly time has passed.
It hasn’t been easy, but you are stronger than you think, and you will get there too! My next little milestone is hoping to be well enough to go to the South of France for Easter—fingers crossed!
Wishing you a smooth recovery. Take your time, and remember that from here on, the goal is simply to get a little stronger every day!
I am currently 3 weeks post transplant, had 2 rounds of flag ida at the end of last year to treat agressive Acute myeloid leukaemia (AML). I feel like the walking dead and hoping to read the whole of this thread to hear everyones experience.
I went in strong and focused and ive come out a terrified wreck
hello
i am 102 days . and its a struggle for sure … mentally for me as i was use to being out working all the time and now am just home all the time ? a lot … alone . so it’s so hard and thoughts are always racing . i love to hear others who have gotten through and innnow it will come … I am here to talk if you would like
Hi @LyndsayE and @Kaylasmom perhaps it is early days and you and your bodies have been through a lot medically, emotionally, psychologically, physically and practicality.
Also you have been cared for in hospital for a time and now you are at home and not working, it can feel lonely and abandoned and your thoughts and emotions take over…
Suddenly everyone expects you to be better and normal services resumed.
The Blood Cancer UK support line is there for you both on 0808 2080 888
Give yourselves time and be ever so kind to and look after yourselves
Hey hope this finds you doing ok?
I am day 261 post transplant so almost 9 months now. I’m feeling much brighter and stronger but have days where I’m completely exhausted. It’s so scary at first and you do feel like you’ve just swapped the hospital for your home. You’ve no energy to do things but at the same time you want to make the days go faster.
It does get easier just go week at a time and then you’ll start to notice it. I remember asking my consultant what could I do. We started with short outside walks which really helped my mental health and at quiet times of the day. Maybe something to consider.
You’ll get there, each journey is different but hopefully this gives you some reassurance.
Take care happy to chat Jill
Oh @Jilly and @Kaylasmom I am such a believer in fresh air and appropriate exercise, it has really helped my mental health, it sets me up for the day.
Look after yourselves
Hiya, Everyone will be different and it will depend on your medical teams advice. For me I’m back at work on a phased return. I work as a Lecturer and have been able to return in a remote capacity so not on campus yet. I had a really good occupational health assessment and the doctor worked with me to come up with a phased return over 4 months. I started back when I was 6 months post transplant and I’m currently working 70% of full time hours.
I meet up with small groups of say max 3 friends for lunches out midweek when it’s quiet and less people around. I haven’t started my vaccine program yet due to issues with my bloods and I might be having a DLI top up in April but my consultant was happy for me to start doing a bit more which is great. I’ve even been allowed into my kids primary school to watch his show. I say by the open doors of the hall away from others but it meant so much to us all as a family. I was diagnosed back in Jan 24 and it feels a lifetime ago and yet not. It does go easier and the anxiety does ease. Remember baby steps and don’t feel bad about asking your medical team what you can and can’t be doing at this stage. Hope that helps
Hi Caroline, I’ve been reading your posts with great interest and gleaned lots of interesting info so thanks for that! Caroline,do you mind if I ask what your mutations were and also how old you are please? Apart from the Acute myeloid leukaemia (AML) curve ball, are you generally healthy with no underlying conditions. I’m absolutely rapt that you’re making such good progress and the fact that they have told you that you won’t need a transplant is amazing. Reading your messages makes me wonder about trying the treatment as I’ve declined so far and am just on support services. Presumably you didn’t go through Myelodysplastic syndrome (MDS) but we’re diagnosed once it had changed into Acute myeloid leukaemia (AML). Such a complicated cancer! Keep up the great work Caroline, you’re doing brilliantly! Much love and hugs, Sally
Hi @Caroline 30!
I’ve been reading your posts with great interest and gleaned lots of interesting info so thanks for that! Caroline,do you mind if I ask what your mutations were and also how old you are please? Apart from the Acute myeloid leukaemia (AML) curve ball, are you generally healthy with no underlying conditions. I’m absolutely rapt that you’re making such good progress and the fact that they have told you that you won’t need a transplant is amazing. Reading your messages makes me wonder about trying the treatment as I’ve declined so far and am just on support services. Presumably you didn’t go through Myelodysplastic syndrome (MDS) but we’re diagnosed once it had changed into Acute myeloid leukaemia (AML). Such a complicated cancer! Keep up the great work Caroline, you’re doing brilliantly! Much love and hugs, Sally
