Well, what a deeply unpleasant week this has been.

[Gavrushka]

That's some progress.

It's taken more than half a year to get here! Half a year of constantly having a dressing on the wound, not being able to take a proper bath because dirty water and open wound don't mix so well, etc. Heck, up until the last two or three weeks I've been having to swap the dressing twice a day because there was so much discharge from the wound--I must have gone through a good 2-3 full binbags of discarded dressings by now.

Wish I'd known earlier. - I've just had to bin almost *a thousand pounds worth* of dressings because the surgery couldn't take them back! - But it is a relief that it is finally healing. - The chemo would have slowed the process, but I do fully appreciate just how difficult life becomes with an open wound.

You sure have had a damned unpleasant journey, but this is one very positive milestone.

[pjknibbs]

Just sitting in the hospital reception area before heading in for second chemo session. Hopefully it'll take a bit less than 14 hours to get it all done this time, because I'd kind of like to be home this side of midnight!

[Gavrushka]

Just sitting in the hospital reception area before heading in for second chemo session. Hopefully it'll take a bit less than 14 hours to get it all done this time, because I'd kind of like to be home this side of midnight!

I hope you remembered your laptop charger!

And I hope you'll be heading home soon.

[pjknibbs]

I did have the charger with me--probably could have got away without it, though, although it would have been marginal (the laptop I was using has 9+ hour battery life, which is about its only good feature). Finally finished up at 5:30pm and got home about an hour later, was then in bed for 8:30 because I was feeling so tired.

[pjknibbs]

Well, that wasn't a fun day. They took two attempts to get the cannula in and it was so painful once they started to pump the stuff they they had to slow it right down, so a half-hour session took two. Think the vein they used was still at least partially knackered from the last session before Xmas!

[Gavrushka]

Ouch! - Yeah, a canular isn't much fun at the best of time, but at least they have managed. - The one time I needed one, I was dating a phlebotomist, who was present while it was being put in, and she went to excruciatingly detailed lengths to explain just how big and painful the needle was, much to the nurse administering's amusement.

Hope this session hasn't hit you too hard. Is there one more scheduled or is it a scan first?

[pjknibbs]

Should be scan to see what progress is like, don't have a date for that yet though.

[LV]

Just popping in Mr Knibbs, great to see you're still going at it.

[pjknibbs]

Thanks, LV!

Update on that scan, by the way, I now have a date for it--next Wednesday at MRI. Then it's a matter of what the results show.

[pjknibbs]

Well, bugger. The PET scan results are in and, to borrow the doctor's words, they're not all that they hoped for--the lymphoma is still there. That means the suggested stem cell procedure is out, because that's essentially more chemo and it's already been proved not to work twice. So I need to get booked in for discussions about something called CAR-T (I think) therapy. Pretty sure that's last chance saloon territory, though.

[euclid]

Keep the spirit up, Paul. A drawback but the car-t cell therapy has a high success rate (40-60%). I guess you've googled it already so I spare the links here. You can do it!

Cheers Euclid

[Gavrushka]

Paul, they have these other options because sometimes they're needed. - A successful resolution is still what the doctors are aiming for.

My thoughts are with you, and I do fully understand just what a rollercoaster this is for you.

Wishing you well.

[RegisterMe]

Hi Paul,

I haven't frequented OT for a while now, so wasn't aware of your illness, or how things have progressed. Gavrushka let me know, so I thought I would pop by. It's hard, for me anyway, to find the right words in a situation like this, but what I can say is that I admire your fortitude and equanimity in the face of everything, and I really, really wish you all the best.


RM

[pjknibbs]

Didn't feel like equanimity when I went to bed at 5:30pm yesterday because I was so upset, but I'm feeling better mentally today. Not much point worrying about it, after all, I can't change anything at this point--will have to hope the CAR-T succeeds where chemo has failed.

[RegisterMe]

Perhaps not, no. I'm sure there have been moments that have been terrifying, upsetting and bleak. But this thread essentially recounts your experiences over the last nine months or so, and I think there's been equanimity aplenty.

[greypanther]

That's not good news, but at least there are still options. I would also agree with RM, you have handled the whole thing very well, better than me I suspect. Any idea when you will get the new therapy?

Anyway, good luck and try to not worry, which I know is far easier to say then do.

[Observe]

I am very sad to hear about your continued suffering and I wish there is something I could say that would help. Alas, I am at a loss for words, other than to let you know how much I admire the way you are dealing with this. Frankly, I doubt whether I would have your courage in the face of something so devastating as you are going through. Equanimity is easy when everything is going along like a song, but not so easy when everything is going wrong. All of us know that our days are numbered, but I sincerely hope that you still have many happy days ahead of you.

[Antilogic]

Hey PJ,

RM told me about this post. So sorry to hear about what you're going through. I hope everything works out okay.

I had just been reading about this CAR T stuff this morning - https://www.theguardian.com/society/202 ... -of-cancer. It seems promising, I think there's a lot there to have hope about.

[Rapier]

Paul, I don't feel I have the right words, so please imagine I'm typing exactly what you want to hear from me. A lack of words doesn't mean I'm not hoping everything goes well for you - I'm very much hoping it does.

Ray

[pjknibbs]

Thanks for the well wishes, everyone. I have a telephone conversation with the docs booked for the 18th, but that was booked before the PET scan results, so not sure if that's still happening or not. I have a definite appointment booked for Tue 1st March, though, we'll see what they say then.