Hi everyone 
I wanted to introduce myself & tell you a little bit about my journey as the wife of a cancer patient. My husband had non Hodgkin lymphoma 18 years ago. After a year of treatment he was eventually given the all clear & life returned to normal. Fast forward to December 2017 when a suspicious lump appeared in his lower back. Scans followed by a biopsy confirmed Non Hodgkin lymphoma in January 2018. He started on the long chemo road but unfortunately the tumour refused to respond to the very many different regimes thrown at it! He was very lucky to be referred as the 1st patient in the country to receive car t therapy for NHL. Unfortunately, it wasn’t successful and he was pretty much at the end of the road. The way his lymphoma behaves is apparently incredibly rare & no consultant that we’ve met has encountered anything like it. At this point he was given a 6 to 9 month prognosis. As a last ditch attempt he had surgery to remove the 5kg tumour from his back in October ‘19. It was an enormous op & it took many months to recover but the histology from the surrounding tissue was very encouraging. Wind forward to March 2020 & 3 new tumours appear in his groin. Lengthy chemo (old fashioned bendamustine) & the tumours have “gone” He’s due to go in for a donor stem cell transplant this month. They’ve now found a new active tumour in his spine but are pressing on with the transplant. This has been a long road & we approach every twist & turn with humour, positivity & acceptance. My very young adult son has recently been diagnosed with Parkinson’s, it’s incredibly rare but not unheard of. I’m now really struggling to cope with life & I know I need to get myself some help but I don’t know where to start. I’m not really a “get it all out there” type but I need to find another gear to be able to supporting them both. Sorry for the lengthy post but if anyone has any suggestions as to where I start I’d be very grateful.
Hi Brow and welcome to the Online Community but sorry that you had to find us and especially sorry to hear about your husbands ongoing journey.
I have been on my NHL journey for over 22 years now (hit my name for my story) and have been through two Allo (donor) Stem Cell Transplants so do understand the journey you are both now moving towards. I will also say that I went into both my SCTs with active cancer cells.
We actually have a dedicated Stem cell transplant support group as this would be a good place to connect with patients and family on the same SCT treatment pathway.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones) You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends and I see you have joined our Carers only group where you will connect with others supporting family and friends through their cancer journey.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up or a Maggie’s Centre as these folks are amazing and a lot of these services have moved onto online video support groups. Our local Maggie’s (Inverness) are starting to open up their one on one support .
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available.
This service provides lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
I will keep an eye open for you in the SCT Group.
All the very best ((hugs))
