49yo - Just diagnosed with Stage 3 DLBCL

Many thanks for the feedback,

The tablet count was because the pharmacy only had 5mg steroids (and I needed to take 100mg!)

I am working a bit - but I do tend to feel wiped out after a couple of hours, so I'm consciously limiting myself.

Luckily in terms of munchies, I'm more into savoury than sweet, and being vegetarian/pescatarian helps that as well (no hidden complex sugars), and no, I'm not thirsty, just religiously drinking as instructed :-)

Luckily the only mouth issues I've had was a little sensitivity to hot/cold a couple of days ago, which passed quickly.

The irony is at the moment is that I almost want my hair to fall out so people know I'm ill! Ridiculous I know, but I still feel a bit of a fraud at the moment lol.

Hi Paul

Just dropping by to see how you’re doing? Hope you’re feeling ok and managing well.

I start my R-CHOP tomorrow, can’t say I’m looking forward to it but it’s been reassuring re-reading your earlier posts.

Take care and hope to read an update from you soon.

Sarah

Hi Sarah,

It's all gone surprisingly well. I have PET scan tomorrow, then I have my 2nd Chemo session on Tues, so the first 3 week cycle is over.

The only real side-effects I've had are Tiredness and mouth ulcers, and my hair started to fall out earlier in the week (I opted to shave it all off, but accept it's much easier for a bloke as no-one bats an eyelid)

The tiredness meant that in weeks 1 and 2 I was snoozing both mornings and afternoons for 1-2 hours at a time, but now at the end of the 3 week cycle, just an hour or so in the afternoon. 

The mouth ulcers were probably my own fault - The steroids make you famished for the first two weeks, and I have been eating too many sweet things - I also forgot to use the mouthwash 4 times a day, so I'd recommend less sweets and remember to gargle! 

To be honest, I've had worse hangovers than any of the side-effects so far. 

One thing I have found (and something that various people advised me on here) is don't think you are more capable that you actually are - Even a couple of hours of desk-based work wipes me out, and you'll be shocked how tired you can get sitting in the garden talking to your family (even the interesting ones!)

Having a sense of humour (gallows humour in my case) helps cut through the "anything I can do..." pitiful looks, but that's a personal choice - my cousins and friends all know my sense of humour, so I've been wearing "Not Dead Yet" T-shirts, and "When my hair grows back, it's going to be ginger and curly"

In summary - Whatever you have made this into in your mind will almost certainly be nothing like the reality, and the nurses in the Chemo units are wonderful, patient people who will take all the time you need to explain the treatments and reassure you.

Good luck tomorrow,

Paul

Great update Paul

Hi Paul

Great to hear from you and I’m so pleased that you’re getting through treatment well. Thanks for the advice, can’t tell you how much I appreciate it. It really sounds like you’re smashing it with positivity and humour.

Thanks for the info regarding work, I am worried about my job. I work from home, admin based stuff, on a laptop and phone all day, not stressful but busy. I am hoping to continue to carry on - mainly for financial reasons - I don’t get paid when I’m off sick, so that’s a concern for me. I’ll just have to see how it goes I guess.

Anyway, good luck for the scan tomorrow. 

Thanks again and take care,

Sarah

Scan went well.... tbh - 45 mins of travelling time followed by 2 hours of boredom.... Hopefully when I speak to the consultant later in the week there are no additional surprises, so it will have been worth it.

Just sorted out the most important thing..... Doughnuts for the Chemo Day Unit nurses

I'll report back later in the week to detail how the 2nd session has gone, and what (if any) new or changed side-effects I've had.

Good that things went well Paul DengieBloke so now look for some good news. My memories of doing the weekly 9hr round trip (Inverness to Glasgow to Inverness) for a 10min appointment are thankfully a distant memory now

Hi Spring2021

Just reading through your posts and wondering how you’re getting on? Hope you’re keeping well and it’s all going to plan.

Sarah

Hi there,

Thanks for checking in.

All ok here thanks.  I had Cycle 5 last Thursday.  Side effects all as expected so far and whilst a bit annoying, all do’able.

Still working full time albeit from home.  Although I did go into London last week for a team meeting.

As I may have mentioned before I don’t feel ill which I think really helps have a positive mind set.  Although I get the results of my latest CT scan on Thursday, where they will tell me if it’s even working. So obviously hoping it is but what will be will be. Once you get on this rollercoaster you get philosophical about it fairly quickly. 

Still exercising and eating healthy, marginal gains and all that! 

I’m keeping in touch with family and friends regularly but limiting the people I actually see.  Partly due to keep a risk of infections to a minimum but also because I don’t want  it all to be about me.  I’m not trying to pretend it’s not happening but other people often have a morbid curiosity and I just can’t be arsed to talk about it, even though I try hard to change the subject :0)

Even if it is working I still have inpatient chemo to help rule out CNS involvement in the future and radiotherapy to help blast the bulkier mass so still stuff to endure but just taking each stage as it comes and trying to get on with life in the meantime. 

I have always tried to eat well, fruit, veg, nuts, oily fish, kefir yogurt, drink green tea, kombucha etc. So I was annoyed when I was told I had cancer but my Consultant reminded me that doing those things wasn’t wasted as it may have stopped me getting a large organ cancer which can be trickier to deal with.  So I figure the saying ‘you don’t know what worse luck your bad luck has saved you from’ fits quite well :0)

I’m not a saint by the way, I like crap food and wine too.  So currently living for Saturdays during Week 3.  It does make you appreciate the small things in life so much more. 

Hope you are doing ok?

x

Hi Sarah,

How did your first session go?

Mine 2nd was yesterday, and other than my body deciding to freak out when the canula went in - I'm not bothered by needles or blood, but the nurse struggled to find a vein and I came over all hot and sweaty... next thing I know I wake up with 6 nurses around me - totally embarrassed! - Still, I think they forgave me as I'd bribed them all with Dunkin Donuts on arrival

As per normal, by the time I got home I felt Stoned/Wiped out, and went to bed at 9pm, waking this morning at 4am  - The Prednisolone does this (The 'P' in R-CHOP), and I'm starving as well! 

So now that's done, I have 9 days of total isolation, then a few days after it's my 50th Birthday - which due to the Chemo is being scaled right back to close family in the garden for an afternoon BBQ (instead of the usual 'drinking to 3am with guitars and signing in the man-cave)

Anyway, hope your treatment goes as well as mine has so far.

Cheers,

Paul