Where do I start?

Hi All

Im posting this in this forum having copied my original post from the new to the community forum and was advised to come here instead....

Post reads:-

Feeling a little lost.

Wandering around in my own mind and getting nowhere.

Frustrated

Angry

Upset

Feeling useless

Hands tied

Just some of the things going on at the moment.

In short my lovely wife had Covid 19 in December 2021.

As a long-time asthma sufferer she deteriorated rapidly and her breathing was becoming more difficult as the weeks passed, with no interest from GP's.

I rang 999 end of the 1st week of January and an abulance collected her from the house (I wasnt allowed to accompany her)

She spent the night alone in a side ward of A&E after having accessed a nebulizer and oxygen.

During this time she was x-rayed andshe was found to have a mass in her right upper lung lobe close to the trachea.

Further investigation concluded that this was indeed a cancer and she was elected for urgent surgery to remove the whole of the upper right lobe as well as the immediate lymph nodes.

Post surgery she was advised by the surgeon to follow a path of adjuvent chemotherapy at our local hospital and was assigned an oncologist.

4 weeks post surgery we met with the oncologist who in a rather haughty manner questioned her need for chemotherapy as the surgery, in his opinion had cured her, and he felt that it would have little benefit to her long term prognosis as she was clear of any cancer.

However we deceided that we bolt and brace this thing to make sure and elect for the adjuvent treatment.

6 cycles of cytoplatin and pemetrexed followed (not nice I'm sure those who know would agree)

Off we go in July 2022, feeling knackered, shell-shocked but alive!

1st scan in August went ok, all good no problems.

2nd scan in November went ok, carry on

3rd scan in March 2023, something odd, come back in 2 weeks.

scan, blood tests, MRI. we think we detect something but cant be sure, give it a couple of months.

We do the same at the end of June 2023 and by middle of July 2023 its confirmed. 

The cancer has returned in the bottom of her right lung, the middle of her left lung and in her lymph in the neck.

We are then, by NHS standards, fast tracked into a new cycle of tests, scans, x-rays, probing, for 8 weeks until they decide a new course of treatment.My wife was then told that the metastic status of this cancer means that it cannot be cured, only treated and that the best course of action is the following:

2 year cycle of Pembroluzibab immunotherapy intravenous treatment every 21 days

Permanent cycle of Pematrexed chemotherapy intravenous treatment every 21 days.

CANNOT BE CURED . Prognosis.... no comment, don't know, depends, could be years, then again......

The new treatment started in October 2023 and she has tolerated it extremely well. Other than initial sickness and of course permanent fatigue, she displays an incredible life-force of which I am immensly proud and forever astonished by.

The immunotherapy was withdrawn at the end of October this year; according to those in the know, there is no actual benefit to life expectancy in extending the treatment further than 24 months.

So we continue on just the Pemetrexed every 3 weeks until the inevitable time comes when either

1. It stops working

2. She can no longer tolerate its side effects

I have no one to talk to about this who would have any direct empathy over her plight or begin to understand what the last 3 years has been like for her.

We take as many breaks and holidays as time allows us, but I see the decline.

She has constant nagging ache and pain in her lower back. (for which she had an MRI last week but we wont get the results till after Xmas). Update now shows that she has developed arthritus in the lower back.

Her skin is sallow and bruises so easily.

Her stamina for any form of physical effort is diminishing rapidly

Her breathing is shallow and weak.

She is tired constantly and can sleep until mid day at least.

They say she is doing fine and there's no progression, but is the treatment slowly killing her?

I am frightened. I feel powerless. I can only watch and that alone is agony in itself.

I feel like we are in our very own horror movie.

I'm sorry to go on, its the first time I have spoken in depth about this (or even written it down).

I did start a diary but it became too morose, too sharp to read, so I stopped.

We are both subtly aware that she will not survive this and she is terrified of the end game (the internet being full of the darker stories behind this)

What do I do, where do I go and what can I do to make her life better.

She is kind and says things like "without you I wouldnt be here now" and stuff, but I do just feel like the other person in this story, who just gazes on and has no power to put things right again.

Jan26 Update. After not receiving any immunotherapy for the last 3 months, she has actually become weaker and she is convinced that the Pembroluzibab in some way counteracted the debilitating effects of pemetrexed somewhat. I'm not sure if this is really true but I'm content to let her live with that thought for now.

She had a major kidney infection last week resulting in a 9 hour stint in A & E because the 24 hour emergency oncology clinic was full! and we were told just to come to A & E with her symptoms and we would be fast tracked as oncology emergency. 9Hours is a pretty good fast-track (NOT).

Anyway pumped with IV antibiotics and now feeling a little better but obviously this has put her chemotherapy back a few weeks.

xx