Dealing with the trauma / Delayed Emotional Response

Hi again DaveM and well done navigating across to this corner of the community.

The challenges you are facing are unfortunately real…… over my 25 years living with and being treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am now over 10 years out from my last treatment, I turned 70 last month and I doing great.

From the very start back in 1999 as a family we had an open table policy……. there was regular conversations between my wife, our 2 girls who were 14 and 18 at initial diagnosis and myself……. This carried on all through the 25 years……. Be it the good or the not so good…… we endeavoured to keep a clean table.

Yrs we had some bumps especially during late 2013 through to late 2015 when I had my main treatment including 2 Allograft Stem Cell Transplants…..

We all made full use of our local Maggie's Centre as these folks are amazing.

My SCT unit was down in Glasgow (we live in Inverness)  had a family support facility so we could all get help with the burning issues……. Nothing was left to smoulder.

Being told in late 2013 that if the plan that was being implemented did not work there were no other options apart from palliative care.

But here we are, 12 years on getting on with life….. My first type of NHL is still classed as incurable…… but it’s fast asleep…… and my team recon that my aggressive NHL is cured.

I personally have found Lymphoma Action to be a great place for support.

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 as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 6000 members.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

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.

Our simple family motto through out all these years has been rather simple……. Regardless how challenging things got we would refuse to allow the circumstances define us……… our focus was on defining how we lived despite of the external pressures.

Always around to chat. 

Hi

I had my treatment 2020 the fatigue issues took at least two years to get back to close to normal, It was a very gradual prosses.

As Mike says there is support out there and in hindsight I probably should have made more use of it though at the time there was all the added issues with covid and a lot of things were up in the air.

Speaking personally I have found it did change my mind set about what was important. For myself I did think about my mortality a lot more than I did before. I'm not sure I gave it much consideration before I was ill. On the plus side there is lots of stuff that bothered me before that are just not worth fussing about now.

Five years on I no longer worry much in relation to the cancer but sometimes just that I and my family and friends are getting older and things are finite. I have had friends that went through similar and didn't make it.

Not sure any of the above is any help for you but do speak to people about it if you can

Regards Ken