Hello,
I am new here. And it feels like I am walking through the most horrific nightmare as I write.
Almost four months ago my partner suddenly fell very ill with very high fevers. After many weeks of life threatening critical illness, including severe sepsis, embolisms in multiple organs, kidney and liver failure, and three massive GI bleeds, what seemed to be a mystery disease has now been diagnosed as the above : Panniculitis like subcutaneous T- cell lymphoma with HLH. This diagnosis was a shock and delivered only last Friday. He is on Anakinra, an antibody, to treat the HLH and starts CHOP therapy today for the lymphoma. He is alteady very weak after weeks of severe illness he can barely sit up in bed, has lost 2 stone and has debilitating eye infections that make it difficult for him to see. He was a completely healthy man before, eating well and exercising daily.
He really struggles to understand what’s happening to him and while he is slightly oblivious to the severity of his condition he is very scared of course.
Over the weeks it has become clear that I am his sole carer, that his family and friends are not able or willing to support him through this. Most of them live abroad.
I am wanting to do everything right and support him, but I have spent the last three months by his hospital bed, often 8-10 hours a day and I am completely exhausted and in so much emotional pain and worry that I can’t sleep or eat and just cry now. I take all what’s left to be positive and supportive whilst with him and have a complete breakdown the moment I leave the hospital.
I often think I can’t do this anymore.
I am sure I am not alone with that feeling?
what do people do ?
Hi Evamaria
This is such a challenging time for you both to navigate…. as my wife Fiona always said……. especially during the very challenging days…… “we will take each day as it comes, celebrate the good days and push through the not so good days”
Have you connected in with the Lymphoma Action…. Support Platforms… yet?
There are many Caregiver's who are in the same position as yourself in the various groups….. a good number supporting family with CNS Lymphoma as well as those going through Stem Cell Transplants….. ‘talking’ can help you a lot.
I have had 2 Allograft Stem Cell Transplants (June 2024 then Oct 2015)….. so we know this rollercoaster rather well.
Actually one of this months Lymphoma Action Special Focus Groups is all about Stem Cell Transplant…… where Clinical Nurse Specialist Michelle Kenyon from King's College Hospital will be talking about stem cell transplants.
There will be the opportunity to ask general questions and meet others and share experiences……. you would bump into me as I am one of the facilitators.
Tuesday 22 July from 6.30pm until 7.30pm follow the link below.
((hugs))
lymphoma-action.org.uk/.../special-focus-support-meeting-stem-cell-transplants
Oh that is good Stephanie.
The SCT Focus Group is for both Caregivers and Patients….. there is always more patients than careers but it’s a good opportunity to hear stories and better understand the process……. I will be the one with the HeyJimmy hat on 
