Had my fourth R-CHOP last Friday week and I've not felt so low

Sorry I've not replied earlier.  I don't get on here very often. I guess you've had a couple more lots of chemo since you wrote.  I really hope you're not feeling so bad now.  My chemo finished at the end of July and although I feel tired most of the time I'm feeling much better than I did just a couple of weeks ago. My doctor prescribed anti-depressants and they helped enormously, I guess I'll be on them for a while but it's worth it.  Now I'm finding the worst part is my toes and feet being numb and ankles quite painful which I can put up with - I take a couple of painkillers when it's too bad.  My Consultant told me that it'll take a while for all the side effects of the chemo to go.  My grandson said, and it's true, that the problems I'm having won't last forever and it'll be worth it when I'm better, bless him.  As you said, it's a real mental roller-coaster. I've my post-chemo PET scan on 14th to see if I need further treatment and some radiotherapy just afterwards.  I'll find out the results of the scan on the 24th and I'm keeping everything crossed.  Strangely, and I don't know why, but I sort of missed the cycle of chemo, drugs, blood tests and occasional transfusions for the first couple of weeks or so afterwards!  Anyway, keep up the good work. Knowing that our friends, relatives and people we've never met say prayers for us and send hugs and best wishes really does help.  Thanks for your message. Hugs and prayers sent for you too and everyone who may read this. Take care.

Hi Andyoddjob

Just reading your post and I’m feeling exactly the same. I had my 4th r-chop on Friday and I’ve hit an all time low yesterday. It’s really shocked me to be honest as I’ve been so upbeat and positive since getting over the initial shock of diagnosis. Ive carried on as if nothings wrong but yesterday I saw a picture from 6 yrs ago when I was on holiday with friends…it popped up on social media out of the blue and it really upset me. 6 yrs ago life was good, a lot has happened over the past five years all pretty grim and to put the icing on the cake so to speak I get a cancer diagnosis. 

My half way scan wasn’t as good as I hoped for, and I don’t know whether it’s the steroids or just the reality kicking in. I’m not afraid to admit I’m struggling at the minute.

It’s nice to read your story and I hope you continue to improve both mentally and physically. Sending you best wishes.

Sarah 

Hi Sarah

What you have said is so relatable - as ever. A friend came over last Friday and I showed her a picture on my phone screensaver of me and partner outside a club in Ibiza in 2017 and I broke down. We are still those people, with other life experiences overlaid on us, including this s&@! Social Media is a devil for only curating the glossy bits from our previous moments. Have you used the counselling service from MacMillan or via your specialist team? 

I’m so sorry you feel so low. I do remember a post recently where your consultant said things were as they should be. As one of the nurse specialists said to me on a call on Monday “we do this day in day out”. And I was panicking when I mentioned the rarity of my case and she said “oh, we’ve seen nasal cases before”. It’s not easy being patient but you inspired me when you said you were still living your life. 

I have my meeting tomorrow morning which I am both dreading and wanting to be here. I know everyone has said it’s the worst bit. I shall refrain from Google - really not helpful.

With love 

Gill x

Hi Sarah,

I'm sorry to hear that you are going through the mill at the moment.  I've no doubt you find it hard to see when it'll end as I did, but it won't be long now when you'll start to feel much better.  You must speak to your team about it though if you haven't already, talking to my specialist nurse really helped me. I also used the Macmillan online chat service which is brilliant.  If you haven't tried it already it's here: Chat online - Macmillan Cancer Support . If you can get to speak to your GP he/she may be able to help too.

I know it's hard to be positive at the moment, but I made my consultant laugh a couple of appointments ago after she told me that I looked so much better than when she first saw me on the ward I replied "Every Day In Every Way I'm Getting Better and Better". I found out later that it was a line, Michael Crawford used in the comedy series Some Mothers Do 'Ave 'Em in the '70s!  I try to say it out loud every day now.  It's only a little thing, but it's helped me.

My daughter recently posted on FB a memory of when we went to a folk festival only a couple of years ago.  It seems like a lifetime ago.  However, when I get better I know we will be doing these sorts of things again.  A friend and good neighbour I chat to online said I should try to plan ahead for all the lovely things I will be doing in the future.  Maybe I'm odd! but I've found this helps to daydream about what I really want to do when I'm well.

Anyway, I hope you'll find some of my ramblings useful and know that my love and prayers are with you always.

Best wishes, Les

Hi Sarah, Less, Gill…… the Lymphoma journey is such an usual ride, the moment you think you have pigeonholed one part of the journey something else comes along and the circle starts again but it’s all about progression, making headway some way or another.

The link below will take you to a short blog I did a few years back based on a walk my wife and I did on a nearby mountain - tell me what you think….good or bad.

community.macmillan.org.uk/.../i-have-always-thought-that-giving-up-is-not-an-option-it-s-more-of-a-stepping-stone-to-what-is-next---thoughts-from-our-community-champion-mike

That’s lovely Mike - Thankyou for sharing it with us 

Hi Gill,

I just wanted to say good luck for tomorrow morning will be thinking of you.

Take care,

Les

Thankyou so much Les, you too

Hi Sarah,

I hope you are feeling a bit better than a few days ago.

I thought I’d post an update in case this helps.

I finished my RCHOP on 15th July.  Since then I’ve had 2 hospital stays for high dose methotrexate both of which were nowhere near as worrying as I had expected and on both occasions I was in and out in 3 days and not the expected 5 days they warned me about.  

I have had my pre-planning meeting for my radiotherapy this week and I start 3 weeks worth of that in a couple of weeks.  I am expecting side effects, mainly bowel/bladder related so I’ll have to see how that goes but just really excited to now be on the final hurdle.  

I’ve been told my PET scan will come 6-8 weeks after.  It needs to be this far out apparently to make sure it doesn’t pick up cancer cells that are still dying. Obviously I’m hoping it won’t show any but I can’t waste time worrying about that now.

Anyway my main reason for posting was to say that my hair is growing back! In all places ;0)

I only lost my eyebrows/eyelashes during the last cycle and within a fortnight they started coming back.  The hair on my head is also getting there.  Definitely not at the stage I can go wig free yet but it’s great to see my old face slowly emerging again :0)

I appreciate we all react differently and I don’t want to give false hope but hang on in there, the real you will slowly start to come back too.

Take care.

X