Going through 6 rounds of R-CHOP took it out of me, mentally and physically. Luckily had very supportive husband to help me through it. I kept using the future as a way to keep going - when I'm better, I'm going to do this, I'm going to feel that.
I finished in late April and am in remission. Yeah!
To recover physically, I have adopted a Whole Foods, Plant Based diet. I am definitely getting stronger. I am back to my normal weight.
As for emotionally, I'm not anywhere near the same or 'back to normal'. I developed a few strategies to get me through the pain. I was in severe pain every moment of every day during R-CHOP, with no relief. My strategies sound stupid, but they worked for me. I fell asleep (and could only fall asleep) with a guided mediation, my sister gave me aloe vera infused spa gloves and socks that I have to wear if I want to sleep, I put an extra pillow across my abdomen to slightly compress my stomach - that was the big one. Without the compression, my insides hurt so much, I couldn't relax. And a few other things.
Now, I don't have that pain at all. But I still can't let go of these strategies. As if I'm worried, they'll return. I feel like I'm experiencing PTSD or something (not to take away what people who go through PTSD go through). I just physically and emotionally cannot live without these things. So every night time is a big deal getting ready for bed.
I'm also terrified of anyone with a cough or cold! Not to mention Covid. I rarely leave the house and when I do, I'm masked up, gloved up, and social distance from absolutely everyone. I let three people go ahead of me in the grocery store because I didn't want an unmasked person standing behind me, breathing in my direction. A woman's kid coughed near me and I winced and she flew off the handle that I should just relax, her kid didn't have Covid. She didn't get it. I'm scare of ALL germs, not just Covid.
The food was easy. This emotional recovery is the hard part. I wasn't expecting this. All those future plans I had where I was going to finally be happy... I still don't have the joy. I'm just scared.
Thanks for letting me vent. I'm sure just getting this out is a step in the right direction. I appreciate the venue to do so.
'
Hi.
I'm yet to go through my treatment but totally understand how you feel about the germ situation! I feel like I'm getting paranoid! So many people I know with colds or covid, I panic as soon as I hear a sniffle.
It is really challenging at the moment and I'm sure you would feel more like your old self of it wasn't for covid.
Let's just hope the spring sees a reduction in cases so we don't feel so vulnerable.
Congratulations on being in remission though, that is fantastic news.
All we can do is baby steps, think of little treats but still feel safe.
Have you taken up any of the counselling? It might help if you haven't done so already?
All the best.
Paula
Hi RedHeadSurvivor and welcome to this corner of the community.
Well done in getting through your treatment and out the other side...... the 'other side' can be as challenging as the treatment journey especially dealing with the emotional aspects of being treated for cancer.
I have been on my journey for over 22 years (see my profile) so I have developed a frame of mind that can pigeonhole the battles that go on between the ears.
When you are diagnosed you are unknowingly given an invisible rucksack put on your back...... we go through treatment collecting 'stuff' and slowly the weight of the 'stuff' on your back weighs you down - you need to unpack this load.
Talking to people face to face can help unpack the load 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. Do also check out for a local Maggie's Centre in your area as they run great Heamatology Support Groups.
Do also check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.
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.
We are around to chat this through more ((hugs))
It all takes time and is a gradual proses
I finished treatment in July 2020 and most of it is just memory's now. But it didn't happen overnight. Covid didn't help and it's just in the last few months I have been back on buses and trains etc. Have been out to restaurants and the odd pub but I'm selective where I go and try to go for quieter times and days when I can.
Check up times are still a concern each time but also reassuring when done. Nothing has shown up related to the lymphoma and an other possible issue has been detected early and is being followed up presently.
If your strategies for getting to sleep work for you stick with them.
Not sure anyone will be that relaxed when someone coughs near them for a long time
Hi, do read the paper Mike has provided a link for its helped thousands over the years as we all struggle to cope with life post treatment. I often think one of the barriers we all face is accepting life does not get back to normal. Once you/we accept that, you develop new strategies to enable progress to life after treatment and adjustments are made. The other bit of advice is be kind to yourself and when you have an off day or a wobble don't worry, tell yourself its ok and all part of life and your ok with it.
You will get to a better place and it just takes time, how long varies from person to person, but do be assured it happens, I am over 10 years post treatment for dlbc and enjoying everyday, which you will too.
take care
John
Thanks for your kind words. I didn't think I needed counselling until I wrote this post. Now, I am reconsidering. I sound down in the dumps. I think I needed to see my own words in front of me to notice it.
Best of luck in your treatment. Strategies help. Mine are bizarre, but worked for me. You will find yours!
My best advice is positive self-talk when you're really in the thick of it. Not easy and not possible all the time!
Everyone is different, so don't compare your experience with ANY ONE ELSES! You do you. You listen to your body. And you focus on your recovery!!!!
All the best,
Susan
Thank you for your kind words! It's comforting to know it's normal. Everyone is different and we all go through it! Thanks again
Thanks for the reminder. It does take time! I'm quite impatient. As my body is returning to normal, I want my mind and outlook to be there, too. Thanks, too for the encouragement. I'm sticking with my strategies. When they're no longer needed, they'll no longer be needed. Until then.
Thank you so much for the reply, the encouragement and the many resources to help me! I will be reading the paper today. Thanks again!
Hi there Susan
I’m late to the party but so much of what you wrote resonates with me. You underestimate the trauma you’ve been through - it is PTSD. It’s often only when you look back at the journey that you realise that.
When I got my treatment plan I said I didn’t want counselling and then I changed my mind. I’m in remission too - radiotherapy for 3 weeks in January to make sure it’s left the building so to speak. I’m having counselling via the hospital now so that I can unpack it as I go. Some sessions I’ve just sobbed for nearly the whole thing - it’s such a release. If you can, I’d definitely recommend it. And your sleep strategies - they’re all physically healthy ones (and they work) so as others have said, just go with it.
Wishing you all the best for the future and brighter days ahead
Gill ️
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