Hodgkin lymphoma

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

As I said in your post in the New to Community I don’t have HL but have been on my Lymphoma rollercoaster since 1999 dealing with 2 rare types of T-Cell NHL.

My Consultant told me that going through the treatment process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months in treatment….. and this was done without any training.

Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much much longer than you would think to get back to some normality.

Not giving yourself enough time could be a backward step.

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3 months post my last treatment I was just out of my wheelchair and able to do a few steps with my walking sticks…..

Your body has been through a lot, you may well be suffering from muscle loss……. and this is where the counterintuitive mindset kicks in as the less you do the longer it takes to overcome the fatigue.

Setting small achievable daily goals is the way forward…. once I was back walking with my sticks ny aim was the first lamppost on our street and back again….. I did that for a week 2 times a day then extended it the next week. 

When I felt I needed a nap I (or my wife) would set an alarm for about 45mins…… then I got up for a little walk around the house, made a cuppa.

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.

Hello Juleswalkingintherain (are you the cause of all this rain!?). I was one of he lucky ones in that even after 4 years off and on of treatment for HL, although occasionally feeling weary immediately after a treatment, I wasn't too tired. Mike,  the Highlander, is right - it is probably a matter of time. I would suggest you speak to he Nurse Specialist associated with your treatment centre for advice. Also Lymphoma Action organisation run support groups for people in all stages of treatment and a "like-minded" group might help.

And don't forget laughs and hugs!!!!

All the best and have a long-distance hug from me

Pete X

Hi Pete….. Jules, as Pete has mentioned you may want to checkout Lymphoma Action…… Lymphoma Action the UKs main Lymphoma charity.

If you are in the UK you can connect in with their various Support Platforms…

I highly recommend these groups especially their monthly Remission Zoom Group 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……

The LA Closed FB group alone has over 6300 members and unfortunately you would most likely bump into me on there also ;)

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course that highlights the post treatment stepping stones we all have to navigate.

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. 

Hi Jules - I’m just over a year out from the same treatment (last one went in Jan-25) and I’m only JUST getting my energy levels back. 

It really does take an age especially if I haven’t slept well for a few nights. I’ve found slowly slowly building up my outdoor walks has helped a lot (the puppy we got before I diagnosed helped with that).

As always, the highlander is right. Just got to accept that it will take a while BUT I am all but back to where I was before this whole thing flipped my world upside down…

Hello Pete,

Thanks for your reply

lol I could be the cause of all this rain, but seriously it rained every time I had the opportunity to stretch the legs during long stays in hospital hence the title chosen.

Juleswalkingintherain !

Hi MJ Hodgkins Bloke,

Thanks for your reply,

I think the outdoor walks could be a great way going forward for me, i'm fortunate to be still ok with walking, well once around the supermarket leaning on a trolley is where i'm at,

but once all this rain eases Pete ;) I think the walks in nature could be the way forward, Thankyou

Juleswalkingintherain !

Hello Jules - recovery can be like having a baby- you can jump up and down or lay flat on your back- it will still take 9 months (not as bad as man-flu) so that is what it is. I think the knack is not to push yourself too much - could be counter productive. And yet there is the frustration at not being able to do what your brain wants you to.

And stop walking in the rain - dunno where you live but in deepest Kent it has been a lovely day and hope it is grand in your area.

Have another hug

Pete X

Hello Highlander,

Please excuse me for not replying sooner,

Thankyou for your replies with the links to other groups, as you have mentioned just talking with others within the same experience is proving to be helpful going forward.

Juleswalkingintherain.

Hello Tenterden Pete,

Your right about the brain just wanting to move faster than the body can and the frustration of that is what I need to deal with at the moment.

Yes we did have a nice day yesterday but i missed it with some anxiety, but hoping its nice again today to get out among nature, Im down south in the Westcountry Devon,  aka

" The Wetcountry " 

Juleswalkingintherain 

Hi Juleswalkingintherain  no need to apologise….. we all know the challenges of navigating the post treatment world.

Getting out…. even in the rain ;) is good for our wellbeing and recovery. Living up in the Highlands of Scotland we made use of the amazing east walk we could be directly from our house….. then once my strength and muscle mass improved we became more adventurous.

Did you read the paper…..

After Treatment Finishes - Then What?

….. what did you think?

Even 10 years out from my last treatment I still read it through a few times a year.