High-Grade Lymphoma 6months post stem Cell transplant- What now?

This time last year I was diagnosed with a very rare T-cell lymphoma with infiltration to the eyes. It was ghastly. I had little chance of survival - my sub type was mis-diagnosed ALK-1 was negative but eventually it was confirmed PTCL-NOS. 6 rounds of chop14 with additional 3 rounds into the spine. I went into remission and 8 weeks later was booked in for PBScT stem
Cell Transplant. I went into hospital well. I received cyclophosphamide primed stem cell harvest and also HIgh dose chemotherapy. All through Covid and all alone I stayed in the hotel attached to the hospital missing my four children and partner. The neutropenia was tough, and I struggled to Sleep and eat. I was placed onto the transplant ward, other than diarrhoea, my infection affected my tummy but was thankfully manageable. I left hospital after 3 1/2 weeks. I felt weak but ready for my recovery. I am now 6mths down the line and feeling stronger everyday my hair continues to grow and bloods are good. What now though, I feel lost and really don’t want to return to ‘normal’ has anyone had any experience of this.

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Hi @NikWar4 a great big welcome to our forum, I am glad that you have found us.
What a horrible year you have had and you must have missed your 4 children and partner so much, being in hospital is such a lonely place to be.
I think after all that time of treatment and hospitalisation it is very natural to feel lost and not really wanting to return to normal.
Perhaps you now have the opportunity to reassess your life, as much as you can, and decide what and who are important to you and how to achieve those things.
Be kind to yourself, you and your body have been through a lot emotionally, physically, medically and practically.
Look after yourself and spoil yourself in little ways.
Please keep posting I look forward to hearing more about you.

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Hi @NikWar4 and welcome to the forum. Wow, that sounds like a challenging journey for you. It must have been so so difficult during covid and you have gone amazingly!
I think the hardest part is when treatment ends and you actually look back on what you have been through and now need to process it all. Your feelings make complete sense to me. I struggled with what ‘normal’ was. Life definitely wasn’t the same and for me, it entailed taking it day by day. As @Erica said, it does give you time to re-evaluate things and think about what you want.
Which part of the normal don’t you want yo return to? Have you thought about what you may want your future to look like, changes you want to make?
Its definitely a tough one. I think lots of people will be able to recognise how you are feeling.
I look forward to hearing others thoughts :blush:

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Yes unfortunately I am familiar with PCTL NOS as I have a close relative of it, Mycosis Fungoides.It is often mistaken for Mycosis Fungoides and from my reading looks the same under the microscope.I believe that chemotherapy has a reasonably fair track record with PCTL NOS?Those ALK, sometimes called ALCL, ones are pretty similar I think?They are all very rare and even the most common, Mycosis Fungoides,is 6 people in a million.I lost my finger to Mycosis Fungoides and nearly my life due to infections.But in a few weeks it’ll be only my hair as I have to undergo Total Electron Beam Radiation as it’s growing back into my skin.

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Oh @Kevan7 please keep posting how you are?

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How are you doing since you first posted @NikWar4?

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What you’re feeling is normal for what you have been through @NikWar4 . You can’t possibly have gone through all of that and be the same person. The other you is still there though, you just have this other thing to go with it. Everyone evolves throughout their life based on their experiences and you’be been through one of the toughest I can testify as someone that went through the same. Take it gradually and think about things to take forward in your life and things you’d like to achieve. That’s what brought me to this forum and to several groups where I felt my experience could be useful. Don’t forget to be kind to yourself, it’s not selfish :slight_smile:

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Hi @NikWar4 - I can sort of relate to your post in that I’ve also had a transplant and a long hospital stay (CAR-T, in summer 2020), followed by the feeling of ‘what now?’

In my case at least, that feeling hasn’t gone anywhere. Two years later, now getting on with life mostly as before, I frequently worry I’m wasting some amazing second chance I’ve been given. I am back into menial office work, I do most of the same things I used to (Covid permitting) and I have that vague feeling that I expect most people have of gradually becoming a boring old man. I don’t have any amazing insight into life to share and I still get annoyed by silly little things before my brain reminds me I’m supposed to be grateful so stop moaning etc.

I don’t think it matters though. Just because we’ve been ill doesn’t mean we have to stand out somehow. We’re allowed to have the same pleasures and complaints as everyone else, to not need to feel special or suddenly full of some grand wisdom. If you don’t want to let it change you, that’s perfectly fine. It’s also fine if you want to start volunteering or skydiving or playing speed chess every Tuesday. The important thing is there’s no pressure to do anything differently. It’s your life, so change or don’t, however you like.

The only other advice I’d give is to laugh as much as possible, about everything, whenever you can. It’s a silly life we all live and laughing’s a great response to it. Not sure that has anything to do with cancer though!

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Oh @Cid what eloquent words of wisdom and yes, laughter, smiles, hugs (covid times permitting), relationships, nature etc are all free too.
Look after yourself and keep posting

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Wonderful advice. It’s what feels right for the individual! :blush:

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I had a stem cell transplant 6 months ago. I realise this is not likely a serious problem and I’m grateful I don’t seem to have any other side effects, but in the last three months or so I’ve had several episodes where I wake up in the night with quite severe pain in my stomach and then begin to feel very nauseous before being sick. My care team said to go to my GP but this never happened pre-transplant and I was wondering if anyone else has experienced similar episodes? Thanks, Paul

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@Paul those episodes sound rather scary to me and also anxiety making.
Please let us know how you get on with your GP and perhaps make sure that you are ‘pleasantly assertive’ to get help from someone and you don’t get pushed from pillar to post. Be kind to yourself.

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I can imagine that’s very worrying. Contacting your GP sounds a good place to start. Please let us know how you get on.

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Hi @Paul,I dont have your diagnosis but I have had experiences of various “tummy aches and nausea” and I’m now having medication for that,and eat what suits me ,however I would urge you to get an examination or discuss your symptoms with your GP as advised by your team. It could be any number of "tummy things " upper tummy ,lower tummy etc etc ,and perhaps just needs investigating to help find a solution and you can get a good nights sleep again .
All the best.
Bannanacake

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Hi all and thanks for the sound advice
I think I will go with the flow and maybe try to tap into something which makes me happy, I quite enjoy walking and sewing. I think I’m just very anxious about everything. I have some blood work that has come back a little high and am having to have a pet scan to see what’s happening. It’s overwhelming, I feel like It’s been such a long road and maybe it hasn’t worked and I’ll be back to square one again. I need to embrace the days and look forward to my new future. I get so overwhelmed with it all and find myself becoming so anxious it’s debilitating at times.

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It is so natural to be anxious but it sounds as if you are looking positively @NikWar4 at things that help you embrace the days and trying to tap into things that make you happy.
Don’t forget that it is natural to have fluctuating emotions, good and bad days, happy and sad days, overwhelmingly debilitating anxious and happier days, you are human.
The forum and Blood Cancer UK support line are always here for you to say how it really is for you.
Be kind to yourself.

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Hi @Paul I have been thinking about you and I am wondering how you are doing?
Look after yourself.

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Good thanks. Just back from a few days in Spain. I spoke to a consultant at UCL for a routine check and have an ultrasound scan tomorrow and an endoscopy next week to check my stomach out. I think it’s likely just the Stem cell transplant and chemo drugs but I’m pleased they’re being so thorough and I don’t have to arrange it via my GP as previously advised.

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Hoping you didn’t have any from KE with your flights and that you had a lovely break?!
It makes it so much easier when your team sorts things out for you. So much less stress. Please let us know how you get on :blush:

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Good news that you got to Spain Paul, I expect just what you needed.
Please let us know how the ultrasound and endoscopy go and great that your team are being so thorough and that you do not have to go via your GP.
Take care of yourself

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