Long term affects

Hi again PDD and good to see you have navigated across to this group. What you are feeling and experiencing post treatment, even 18 months out from treatment, for some folks can be normal. 

We can often underestimate what our bodies go through during treatment both physically and mentally.

I am over 6 years out from my last treatment….. my treatment path was rather different from yours (see my profile) so life is now lived at a different pace with a changed mindset and outlook.

At times, living the post cancer journey is like living in a parallel universe - you can see your old life but regardless what you do you can not get back on to that same path.

Following my 22+ years treatment, a situation my family and I were unwillingly put into. It did actually make us review life and everything that we once thought important.

So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

Being in a group of people who have not walked the cancer journey can be challenging as at times all the talk will often revolve round superficial stuff……. your (my) mind will often disconnect as we have a different ‘view’ on life and just living…… most people don’t ‘get’ this.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What by Dr Peter Harvey as it highlights the post treatment milestones.

A few years back I did the ‘Where now?’ course at our local Maggie's Centre - it was great at helping me sort out all the ‘stuff’ I had collected in the invisible rucksack we are all given when we first get diagnosed….. over the diagnosis, treatment and post treatment months….. years even we keep throwing stuff into the rucksack and never clean it out….. resulting in us getting piled down by all the ‘stuff’

Lymphoma Action run Live your Life workshops. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to chat.

Hello Mike.

Thanks for your response and advice.  I am glad you pointed me in the right direction on here as I can already see other people who have been through the same thing. It’s just frustrating that other people just don’t understand. People assume that because your hair grows back and you look better then you must be back to your normal self. 
Thanks again for your advice on the paper. I will look this up very soon.  
many thanks 

PDD

Hi PDD

Similar  to yourself I had  Large B Cell Lymphoma and started treatment 1st April 2020

After a year I was in remission and while I was not back to 100% I was happy to accept where I was. It has taken almost another year to get to the point where I think I am back to the same fitness I had prior to diagnosis. It has been a slow proses and it's only recently I have realised that some of the discomfort I had from the area of the mass etc has disappeared.

I think I should point out that I am no longer working and have the luxury if I have a day where I feel tired I can have a lazy day. I have also had the time to work on getting fit again, I have managed to get back Skiing again recently which back in 2020 I could not envisage doing again. It is a slow process

I do think it is difficult for people to understand if they have not been close to serious illness and also they really don't know what to say and prefer not to broach the subject.  

Hi and welcome to our small group, I was diagnosed and treated back in 2009 and like you suffered for a few years post treatment, some elements do improve and some continue, it really does vary from person to person. One thing that did help with the fatigue was my GP eventually tested me for vitamin D deficiency and it turned out I was, taking fit D on prescription has made a big difference. So may be worth having a chat with your gp as for the first 2 to 3 years everyone just kept saying it takes time, but I found the fatigue debilitating. 

I did have a discussion with my consultant after some time and he did admit their focus was on treating patients and beating the disease, there was little focus on the recovery of patients and this has not really changed, I have fed in to several research projects over the years and hopefully one day they will get that for some life can be a challenge post treatment.

Do read the paper Mike has highlighted it has helped thousands over the years. 

John 

Hello Garfield’s 

Thank you for your response. I’m glad to hear you are doing well. It’s just frustrating I still feel so tired and full off aches and pains. My work is physical and we are always busy so obviously that is wearing me out through the week. I will keep plugging away and hopefully things will improve. 
Kind Regards 

Paul