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 again Evamaria and well done navigating across to this corner of the community.
T-Cell NHLs are rare and with this brings the challenges of how to treat them but CHOP is an effective treatment…… I had most of the drugs in CHOP back in late 2013 to early 2014 when I had my 6 cycles of R-EPOCH……. although this treatment was being used to open the door for me to go on and have an Allograft (donor) Stem Cell Transplant (See my story)…….. has this been mentioned in anyway?
As for support for you…… you need as much support as you can get.
As you see this group is rather slow but that is life with a rare Lymphoma.
You could join and post in the Community’s general Carers only support groups where you will connect with a wide range of members navigating the same support challenges.
As you are in the UK you I recommend that you check out Lymphoma Action……
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups…… and you may bump into me as I also volunteer with Lymphoma Action ;)
As you check through the link above you will see a general FB support group with 5800 members with about a third being Caregivers…… this is a good starting point.
You will also see a monthly Zoom support group specifically for Caregivers and family.
They also have a great Buddy Service where you can be linked up with someone who has walked the same support journry who you can talk with on a regular basis.
The Lymphoma Action helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
I am Akways around on here to help out as best as I can.
Hi Evamaria we are away out to our daughters for the afternoon so don’t have a good signal in the wilderness of the Highlands….. ;)
But for good reliable information stick to the Lymphoma Action website as it’s up to date and accurate……. don’t be tempted to randomly search through Google as it unfortunately will take you down dark rabbit trails.
You may have seen in my story that I had 2 Allograft SCTs…. It’s a long story.
Looking back….. our daughters were 14 and 18 when I was first diagnosed in 1999…….. but despite my many years treatments and challenges…… we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am now 9 years 8 months since my last treatment….. living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done…….
There is always hope even in the darkest times.
((hugs))
