Mental health post-transplant

General advice
1

Hi all,
Apologies in advance for this ramble. I am not even sure exactly what I am looking for, but something has been bothering me for a while and I wondered if anyone else had any similar experience.
I am almost 18 months post-transplant now, and incredibly lucky and thankful to say that everything is going well (touch wood!). It sounds so silly and trivial given the brutality of the immediate post-transplant experience (mainly GvHD) but I am left with an uneasy feeling in relation to mental health, and I wondered if anyone else had experienced anything similar?
First a bit of background. I had a tough time post-transplant, which resulted in me going back into hospital for around 7 weeks around Day 50. Perhaps partly due to shock, cumulative effect of intensive treatment/ staring at the same 4 walls for so long, high dose steroids that were being pumped into me, etc, etc, at that time I went severely off the rails mentally (depression, suicidal thoughts, that sort of thing). I was referred to a clinical psychologist and after several months felt much better about myself and I am pleased to say I don’t have those thoughts anymore. But to replace it, I am now left with quite intense anxiety - it comes and goes so it is not a permanent thing. I suppose I have always been an anxious person but this feels different - it has physical substance - rapid heart beat, dizziness, digestive problems - I’ve had panic attacks in the past but it is not that - at least it does feel like that. I’ve had counselling, CBT, medication and they have all helped, but it is definitely still there - it is an almost daily thing. It doesn’t bother me that much, but I am just trying to rationalise it as I didn’t have these problems before the transplant. It got me wondering whether the transplant in some way affects the chemical balances in your body? Or whether it is a response to trauma, or whether it is just general anxiety about the cancer coming back - myeloma is technically incurable, so I suppose I have certainty rather than uncertainty about it coming back which might be changing how I am looking at things? Or is it none of those things, or a combination all of those things? And part of me just says what is wrong with you - you are so lucky and shouldn’t even be thinking in this way. I guess I am at a point where I can’t rationalise it in my head, and so I wondered if anyone else had experienced similar in their experience and whether they had any tips/insights that might help? How I might describe it is like it feels the post-transplant experience is like a pendulum. I have been so emotionally high at times post-transplant (so thankful to be alive, seeing/experiencing things in a very different light, etc) but on the other hand so emotionally low, or on edge. I just wondered if it was just a general cancer experience thing, or perhaps something connected specifically to chemical changes post-transplant in the body - eg, I had gynecomastia for a short period after transplant so I was thinking could there be chemical imbalances in the mind post-transplant as well?

Anyway I told you it was a bit of a ramble. I would be really interested if anyone else has any experience of this and has any tips/insights.
Cheers
Greg

2

Hi Greg,

You’re right to raise this, as what we have all been through and those out there that are still in the process is probably one of the biggest challenges we will face in our lifetimes, and we all cope in different ways, some better than others.

Personally I don’t think I have any long terms mental issues but then I’m further down the path than you at four and a half years post transplant. But I have certainly had issues during my treatment and had to be referred to a clinical psychologist for a short time. This was after being readmitted to hospital just a few days after being released home for the first time after my transplant. This knocked me for six and I was hit with severe depression. Thankfully it was only for a short period so I didn’t need much support at that time, but I can see how those affected for longer periods might need prolonged support. I had treatment for GvHD for about 2 years post transplant but during that time I didn’t need further ‘external’ support and haven’t done since.

Before all of this began I’d like to think I was a fairly stable person and didn’t get stressed easily. It takes quite a bit to ruffle my feathers but that’s just my normal personality. I wouldn’t say my treatment has necessarily changed that but I do find sometimes that I perhaps have a shorter fuse before I lose my rag. If anything I’m less tolerant of people who get hung up on minor things and I have the ethos that there is more to life, which our experiences will certainly have taught us. I tend to lose my temper with my boys, but perhaps that is a product of the age they are now at rather than a change in me.

I do feel more emotional about things though sometimes and find tears welling up at times if I think of something upsetting or watch something upsetting on TV (DIY SOS is guaranteed to bring a lump to my throat and often makes me cry!) and certain songs that remind me of my diagnosis also get to me. Seeing others go through adversity is often what sets me off and even posting replies a couple of times on here to patients who have faced bad news has upset me and I’ve had to take a few minutes to compose myself again.

I don’t know whether to put some of this down to chemical changes as such or just a product of what I’ve been through or maybe even the fact that I’m getting older (I’m now 50) but there does sometimes feel like something has changed, though in my case I wouldn’t say severely.

The underlying concern for us all is our cancers coming back, but as time goes on I feel more confident about the future and hopefully you will too. Being told at my last checkup that my consultant thought I was now ‘cured’ certainly helped my confidence as it was the first term I’d heard that term being used by a medic since I started treatment.

I guess the main thing is not to bottle it up and seek help, which you evidently have. For me when somebody riles me I just stop and think there’s more to life than this and try not to bite. Think what you’ve come through and that you’ve come out the other side and view that as a success. Nobody can take that away from you.

We’ve all had highs and lows and we’ll continue to have them as we go about our daily lives but hopefully the highs should outweigh the lows now.

I hope this helps and you know you can always share your thoughts on here with people who know what you’ve been through.

All the best,

Steve

3

Hi Steve,
Thanks for getting back to me, it was really interesting to get your perspective on things. I definitely agree that emotions go all over the place after a transplant. I am just a bit muddled about how much of this is to be expected given the disease and the treatment or whether it is actually a side effect of the treatment itself? I have read studies about personality changes post-transplant - I don’t think my experience is as dramatic as that but it did get me thinking. Also, does the inflammatory response in the body affect the mind too? I.e., any slight health concern sends me spiralling mentally, and I sometimes wonder if the reverse is true too - and does the fact we effectively have new immune systems change things too (in terms of response to things mentally as well as physically?) Or whether I have just become too tuned in to problems with my body over the past couple of years that now things are going well I am inventing things because I can’t cope with the feeling that everything is ok (even though I yearned so much to get to this state!) Or am I just over-thinking things - which I have a tendency to do!!!
All I know is that things feel different post-transplant. I think you are right that time changes things and learning/developing is a continuous thing, so this might just be another phase on the journey. I just think about my mental state now and compare it to how it was before. Things are bound to change, it’s just a strange feeling to think I can’t control my brain in the way I once could.
Wishing anyone reading this all the very best,
Cheers
Greg

4

Hi Greg
Thank you for being so honest about how you have felt throughout your recovery and how you feel now, it is so important to raise awareness of the affects of treatment and transplant on mental health. Even if people do not post on here, many will read your post and relate to your feelings. Sadly not all will have verbalised how they feel and even fewer will have sought help so if this post empowers them to do that, you sharing has been a very positive thing.

In my 14 years of working with people having transplants everything you have felt has been said to me at one time or another, so its very normal. Obviously like Steve has said it is different for everyone and no 2 experiences are the same but at some point in recovery most patients will experience either feeling low in mood, depressed and struggle to find motivation. The time points this happens varies and like you it is rarely one single period of time but something that can come and go and depends on many factors. Some patients struggle in the beginning, some will feel fine and then 1 or 2 years later the enormity of what they have been through will hit them, some patients struggle once things get better because they have less hospital appointments, life returns to normal and they have time to think about what has happened to them. There is no right or wrong. I think in your case because of your diagnosis you have the uncertainty, however there are a lot of patients who I have spoken to who are many years out of transplant but still feel that uncertainty. Sadly I think receiving a diagnosis of cancer has that affect in taking away our feeling of security with our health. I think its unlikely that your feeling is to do with the treatment you received causing a chemical imbalance but more to do with your experiences.

I think the really important part of this is acknowledgment, that recovering from transplant can be tough physically and mentally, acknowledgment that its OK to say how you feel, that you are angry, sad, scared or can’t even put it in to words. Acknowledgment that this experience has changed you and that you might feel stronger, more insightful yet less tolerant and more vulnerable than you were before. And acknowledgment that you need support from family, friends or professionals. That might be for a period of time or on going either way its brave and necessary and it will enable you to understand how you feel and move forward. The whole reason you had the treatment and transplant is to move forward with your life and taking care of your mental health is equally as important as your physical health and I hope you continue to get the support you need to stop these feelings of anxiety.

I think both your post and Steve’s are very powerful and will give others courage to say how they feel, so thank you.

BW
Hayley

5

Hi Hayley,
Thanks very much for your post. As ever your words are full of wisdom. I think I just need to give myself time to iron things out in my head. Like you said, I really hope anyone out there reading this and feeling in any way similar looks into the options that are out there or just feels more confident to talk about it. I sometimes feel it can be seen as a sign of weakness and it really isn’t.
All the best,
Greg