Peripheral T-cell lymphoma (NOS) struggling with supporting my husband

Hi

I joined this group today as yesterday I just broke. My husband went into hospital on Dec 6th was diagnosed on the 10th and they started his chemotherapy (CHOP 14) 5 hours later. He has been in hospital since then as there have been numerous peripheral complications and infections. He suffers from an incredibly rare skin condition called histiocytosis and he's diabetic. 

I couldn't visit in January due to covid restrictions but I can visit now. His demeanor is much changed, he is institutionalised and I think he is depressed. The chemo has worked well but his 5th cycle is delayed as they cant get his platelets up. Yesterday when I visited he was extremely short-tempered and told me not to visit for a while.  I understand being in hospital for so long is awful and I can appreciate his frustrations. I  know I don't have cancer but I am trying to hold the family together, work, and look after him too, yesterday, I just broke and had the most overwhelming feeling of not being able to cope.  So that is how I have found myself here. I'd love to hear how other partners are coping, and those of you who are diagnosed, how do you manage with your loved ones at such a stressful time 

Thanks in advance for any advice and support 

LB x

  • Hi LB  and welcome to this corner of the Community although always sorry to see folks joining us and so sorry ti hear about husbands PTCL (NOS) diagnosis. I am Mike and I help out around our variousLymphoma groups.

    This is such a challenging time for everyone involved especially with the challenges that covid brought with it.

    I was diagnosed way back in 1999 with a rare, incurable but treatable Cutaneous T-Cell NHL eventually getting top to Stage 4a.

    My diagnosis over the years actually did bounce between Cutaneous T-Cell and Peripheral T-Cell but the final biopsy and detailed pathology pinpointed Cutaneous T-Cell.

    It is a hard time, especially when long hospital stays are involved - I have had two Allo (donor) Stem Cell Transplants (SCT) with a month at a time in the unit so in some way I do understand.

    My wife Fiona was a star....... she just kept pushing through it all, continued working remotely during my 2 SCTs. We had to move down to Glasgow for my SCTs - we live in Inverness (8-9 hr round tip) so this was an added pressure. I also had to have a set of clean clothes every day in the unit.... it was all rather crazy.

    I still hear stories as to what I said and did when in the unit...... it was not me, it was the process but Fiona was able to see past it all and just kept being available and looking past the stuff that what was not me.

    The body takes a hit during treatments like these so delays are inevitable..... I see from your profile that the aim is SCT...... this again will be a challenges but it's all about keeping your eye firmly on the goal in all this.

    My story is long and complicated so make a cup of tea and hit my community name  and have a look. but the main thing to remember is regardless how had this get there is lots of tools available to keep this on track.

    There are not many carers in the groups at the moment but you could be done with talking with others supporting family specifically those going through Lymphoma treatment so could I recommend you check out Lymphoma ActionLymphoma Action is a small but very active UK Lymphoma Specific Charity.

    They run Regional Lymphoma Online Support Groups with two groups specifically for Family, Friends and Carers as there is nothing better (especially during these crazy covid times) talking with other who are walking the same support journey.

    Happy to chat more and if you have any specific questions for Fiona - ask away as she is always happy to answer as best as she can ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike 

    Thanks for replying. I read your story yesterday when I joined the group, your journey is miraculous and you are an inspiration. 

    Fiona must have been a tower of strength for you over the years. During December I felt more useful, I could visit every day and was able to shower him and help with his dressings (he had open wounds and sores from his histiocytosis)  he was in a ground floor room with a garden facing window so the kids were able to come up and visit and talk to him through there.  He was moved and now the kids can't get to the window to the courtyard without coming on the ward which they aren't allowed to do. Bloody Covid:-(  

    There are days when I don't want to visit for fear of him being contrary or downright rude and I come away in tears.  I know he doesn't mean it and that he adores me and appreciates everything I am doing in this awful time,  I am struggling to find ways of keeping his spirits up and motivating him to get out of bed and start building his strength up. His muscle wastage is awful, the physios have told him what he needs to do but he isn't doing it and when I try and encourage him I get firmly shut down.  I'm assuming there were times when Fiona had similar experiences.

    Thanks for the link to lymphoma action, there appears to be lots of support over there for carers and relatives, I will definitely be joining their community. Riding the storm and keeping our eyes on the end goal is great advice, I'll keep that in mind when I am at my low points 

    LB x

  • Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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