Hello there,
My dad unfortunately had the diagnosis of FL following a blood test back in October. Stage 3 - he had extreme breathlessness and his blood counts were all over the place, almost no RBC and hundreds of WBCs. He had his first chemo treatment at the start of December and has been in hospital from two days after that struggling with sepsis, pneumonia, pleurisy and now has blood in his stool.
It’s so hard to see him like this, completely bed bound without any strength and he seems to be slowly losing hope. I’m his only family and I’m trying to remain strong for him but he keeps saying he’s suffering and even mentioned Switzerland to me… I can’t even begin to imagine what’s going through his head right now!
Any advice on what I can do to help support him emotionally? He’s usually so strong!
Hi Rhi96 and a warm welcome to this little corner of the Community but sorry to hear about your dad……. there are significant practical and emotional challenges of supporting your dad and indeed yourself but well done reaching out.
I am Mike and I help out around our various Lymphoma groups. I don’t have Follicular Lymphoma but I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Skin T-Cell Non Hodgkin’s Lymphoma (Skin (Cutaneous) T-Cell Lymphoma)
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Based on my long experience there has often been times where the way forward was impossible to be seen……… but I am still here all these years on, turned 70 back in Nov and getting in with life.
A few questions…
How old is dad?
Is he in or has he been on treatment and if so…. what treatment was it?
What is your dad’s clinical team saying about the way forward?
Are you in the UK?
Always around to chat ((hugs))
During my many days in hospital having my treatment I sat with many men in their late 70s early 80s who were having treatment…..
At a more senior age there is more chance of complications but these can be managed.
Having had sepsis and pneumonia a number of times I can understand the anxiety it develops….
As you will see, this group is on the slow side and this may well be down to the high profile of 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.
All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… you may want to widen your support and information base by checking them out
They run various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others care givers who have walked or are walking the same journey……
Their Closed FB group alone has over 6200 members and unfortunately you would most likely bump into me on there also ;)
They also have a great Buddy Service where you can be linked up with someone who has walked the same support journey.
The LA 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.
