Cancer update Mar 2022

Follicular Lymphoma


Haematology Appointment Feb 2022

I went to the cancer unit of my hospital for what I thought was going to be a routine appointment, I should have guessed it was going to be a little different because they did not have me booked in for a blood test which is very unusual.

The letter

when I get the letter telling me when my next haematology appointment is it always states that I should turn up 30 minutes earlier for a blood test, which is what happened with this letter and this visit but there was no blood test this time.

Seeing the Doctor

When I went in to see the haematologist, I should have guessed that it was going to be a different appointment because the clinical nurse specialist was also there which is unusual. She doesn’t normally take part in any visits to the haematologist, I was also seeing a haematologist that I had not seen before; I already like her because she’s honest and straight forward and gives it to me without any sugar coating which is exactly what she did.

The news

She told me that my case had been discussed with the team and they looked at the results of my scan or rather they looked at the results of my recent scan and could confirm that my cancer was spreading, that didn’t come as a surprise to me because I’ve been exhibiting symptoms for the last few weeks which is why they decided to put me back on chemotherapy at the beginning of the year.

She also told me that if the current treatment I was on wasn’t working and I started to exhibit more or worsening symptoms they would change my chemotherapy regimen to RCHOP which is a much more aggressive chemotherapy, this is the one where you lose your hair and other nasty side effects.

The rhetoric had also changed normally they say treatment, but she said at this point everything was now geared towards keeping me alive, when I queried her on her choice of wording, she said again my cancer had spread and that going forward they were aiming to keep me alive.

More unwelcome news

We also discussed something else that had appeared on my most recent scan, the consultant that reviewed it had spotted something on my pancreas and wanted a closer look so I’m scheduled for another scan to look at my pancreas.

I have been exhibiting some symptoms which could be associated with pancreatic problems including two that are quite a quite noticeable the first one is my poo has been floating for about six weeks now every time I have a poo it floats when it’s solid most of the time it’s diarrhoea, but it floats which is a sign that the fat in food isn’t being absorbed properly; that’s a function of the pancreas.

Another one is I’ve been having for the last two weeks excessive flatulence it’s quite noticeable these two signs alone are signs there is possibly something wrong with the pancreas if I’m honest I’m not expecting good news from the results of the next scan which should be in a weeks’ time but it is what it is I will deal with it and if it’s what I suspected it is I can only hope that it’s been caught early enough to be treated; if it’s not well we’ll cross that bridge when we come to it.

My partner says that I shouldn’t think like this because I’m just borrowing trouble, the only issue there is it’s my body I know when something’s not right, and somethings not right in my stomach area.

Since September last year and coupled with the pains I’ve been experiencing and these new symptoms I’ve been experiencing it’s telling me there’s definitely something not right. The fact that they want to have another look at my pancreas is leading me to a conclusion that possibly my cancer has spread to my pancreas. Pancreatic cancer is not very nice cancer and in the last five years I’ve had two good friends that have gone from being diagnosed with pancreatic cancer to death in under two months; that’s pancreatic cancer but maybe I’m just looking on the bad side.

Maybe it’s not that, maybe as my partner says I am borrowing trouble; but in my head its plan for the worse and everything else is a bonus and let’s be honest I’ve been fighting cancer for over nine years probably longer because it was only nine years ago I was diagnosed my cancer; it had probably been growing within me for three years previous to that so it’s fair to say that I’ve been fighting cancer for 10 years now.

I’ve had four lots of treatment and I’ve beaten it back each time and I’m not getting any younger and it’s fantastic that I’ve had 10 years, so I don’t have any complaints.

We really didn’t to discuss it that deeply because I think they want to see what the scan says but I think I know where this is going maybe I’m just being pessimistic about it I don’t know but I know when something’s not right and something’s not been right for a good few weeks with my body so I’m preparing for the worst; a depressing status I know.

More Shielding

Another thing that came out of this meeting as we discussed COVID and the relaxing of the restrictions and how I was getting on with them with improving my core fitness and I pointed out that since the new COVID variant have become dominant at the end of last year I’ve gone back to being a prisoner in my own home and I’ve given up my gym membership so I don’t go swimming.

I don’t go out to the gym anymore to keep away from people but now that we are coming out of those restrictions I looked at them and I said can I go back out to going out in public and can I go back out to the gym and swimming and both the nurse and the haematologist looked at me with a look of horror and screamed NO! at me in really loud voices.

So that’s where we are, we’re investigating my pancreas and it should happen in the next couple of weeks but we’re also looking at increasing the dosage of the medication that I’m on gradually until it’s quadrupled from 5 milligrams where I am at the moment daily to 20 milligrams daily, we’re looking at that being 10 months from now which effectively means we’ve written off this year 2022 as another year the I can’t go out so this will now be my third year as social distancing prisoner.

Coming off the steroids

Since the beginning of Jan 22, I’ve also been on high dose steroids, 30 milligrams per day and I was on those for four weeks and I felt absolutely fantastic they really made me feel good and they also stopped the pain in my stomach area meaning I didn’t have to touch the morphine which is great.

The least amount of morphine I have to take the better, you can’t stay on steroids forever and you have to come off of them by ramping the dose down which I have been doing and I’m ramping it down by 5 milligrams a week so I’ve gone from daily 30 milligrams, this week I’ve started on the 15 milligrams per day so I’m on the third week of the ramping and then next week it will be 10 milligrams.

I expressed concern that a lot of the way that I’ve been feeling good was brought on by the steroids and they also were masking symptoms and as I am reducing the dose the stomach pains are coming back.

I expressed the concern that I was dreading coming off the steroids completely because I would go back to being the old me which was quite lethargic and being ill because everybody has noticed a difference in me these last few weeks have been on steroids.

I’ve noticed how much I’ve changed how much good it’s done me but like I said you can’t be on them forever at least I assume that, but the haematologist did say that will have a look and see what’s happening once I’m off the steroids and if necessary, they can put me back on them again.

which is absolutely fantastic because if I do regress when I’m off the steroids I know that I’ve got that option to go back on them which is which is good, but at the same time bad because like I say, they don’t like you on steroids long term but they are talking about me being on the then long term.

Then what we must do is work at a dose which is enough to keep me stable but the very minimum dose.

I am not expecting good news with the with the scan of my pancreas since I’m exhibiting some other symptoms which are normally associated with pancreatic cancer, and we’ll see what’s happening there.

I’ve got appointment in a month’s time hopefully by then we’ll have had the scan done and the results back and we’ll see where we’re going from there.

I keep saying it’s a bit of a depressing status and maybe I’ve got it wrong I don’t know, but we shall see, but whatever it is I’ll deal with it as I normally deal with it and I’m just smile on.

Mentally I have prepared for the worst, and I am good with it, I really am, the problem is going to be for others around me.

Let’s hope I am wrong.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.