My husband was diagnosed with follicular lymphoma in 2017 and we found out In dec 2020 he needed to start treatment January 2021. I'm so concerned his becoming very depressed with covid and the risks to him as none of the vaccines have worked, his life is just stuck at home behind closed doors.
I was wondering how others in the same position are coping and if anyone can help. We have a dog which we take out for walks but that's all we have done since covid started. I've suggested getting some counselling but he refuses as he feels so alone.
Any help will be greatly appreciated.
Hi again Dom Rep and well done navigating across to this corner of the community.
I can understand your concerns for your husband. The mind can make things very hard to navigate the cancer journey and covid has made it that bit harder and it is very easy to become trapped in fear.
There is lots of evidence that the vaccines are actually making a big difference to 'our' ability to live a normal-ish life during these covid times.
The tests available to check our antibodies are not able to cover all areas of the immune repose to the vaccines but I have talked with many people on here and on another Lymphoma Support Platform where folks with Lymphoma who have develop covid are having very minor reactions and we also have a few antibody treatments available if required.
This is a massive diffrence from the early days of the pandemic. Were are now moving towards covid being endemic in the population and we will have to accept that we need to navigate life being mindful as to what we do and who we see. This is no difference to any of the great pandemics in history..... the advantage is that in no other time in history, we are much more prepared to deal with this.
I have a diffrent Low Grade NHL diagnosed back in 1999 (hit my community name for my story). After 14 years, 900+ Dermatology treatments/clinics my condition became very aggressive so between Sep 2013 and Oct 2015 I had 6 cycles of R-EPOCH (750hrs), 45 radiotherapy zaps and two Allo (donor) Stem Cell Transplants (June 2014 and October 2015) and was eventually told I was in my first long term remission in September 2016 - until then I only ever had 6-9 months in remission then back into treatment...... so I am living the dream.
I now have a permanently low immune system with my blood counts on the low side of the acceptable range so very open to infection and yes, since Oct 2015 I have been 6 times back in hospital (32 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2 and A Fib......... but in no way has this robbed me of the gift of living life.
I was basically shielding (before the word become a thing) following both my Stem Cell Transplants as catching a simple cold could be disastrous........ but we were carful in who came into the house ensuring they were well, we did go out often for lunch, we were just carful where we went and walked many many miles through the Highlander where we stay.
When covid kicked in, like many I was told to shield so I did what I was told and stayed safe for 99 days but did do some big jobs around the house.... rather enjoyed it actually.......... but we found navigating through the last few covid year to be rather straight forward as we just did what we had done for my Stem Cell Transplant years.
We have been on holiday over the past few years, stayed in hotels, visited family, meet up with friends and had meals out. We are just carful. Up in Scotland masks are still required and even when the requirement is taken away we will still wear then until we feel things have improved. We visited our daughter and family down in Surrey last Sep and were happy to wear our masks even when people around us were not wearing them.
In fact we were wearing masks back in 2014-15 when we went to hospital....... we got some odd looks but not now.
We also wore masks in busy areas like shops etc........ but we tended to have a scarf covering the masks....... we just adapted life to live as full a life as we can........ and not to let 'the dream' of life be defined by what was going on around us - but WE define how we live within the parameters.
Do also check out for a local Maggie's Centre in your area as these folks are amazing and they do run monthly Online Heamatology Support Group that may help.
You may want to have a look at the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups for both patients and carers and has a very good Lymphoma Buddy Service where your husband can be linked up with someone who has walked the same treatment journey.
Happy to talk more at any time.
I would talk about the suggestion about a Lymphoma Action Buddy as this is a low commitment connect that can provide a high yield.
Always around to answer your and indeed any questions your husband has ((hugs))
