Cancer

[tokyojoe]

No pain. Just the treatment seems to be giving me the shits a lot.

[Section_31]

5 minutes ago, tokyojoe said:

No pain. Just the treatment seems to be giving me the shits a lot.

 

That's radioactive shit though, you're a real life super villain. If there's anyone around your way who gets on your tits, now would be a great time to take a dump in their garden.

[Harry's Lad]

2 minutes ago, tokyojoe said:

No pain. Just the treatment seems to be giving me the shits a lot.

My sister in law was complaining to my Mrs about that too.

 She said she was terrified of farting and had bad heartburn. She got over that and back to normal.

She was being treated for lung cancer at the time though and had been quite ill beforehand so obviously not the same.

 

Reading your posts gives me the impression you're doing well though.

Halfway through and then on to a full recovery is what I'm sure is we're all wishing for you.

 

Kick it's arse mate.

[Champ]

On 31/07/2022 at 12:13, Champ said:

I did Not name our group but I am taking part in the Macmillan Mighty Hike walking 26 miles from Callander to Killin in Perthshire on Saturday 3 September to raise funds for Macmillan Cancer Support.

Any donations would be much appreciated

 

https://www.justgiving.com/fundraising/sheila-mackie4?

 

 

 

We’re going out for a long walk this afternoon, hopefully 13 miles plus. I’ve realised I’m really quite anxious about the challenge I’ve signed up for having struggled badly with my feet on previous long distance walks. I’m really hoping my walking shoes are going to change all that

[Harry's Lad]

2 minutes ago, Champ said:

We’re going out for a long walk this afternoon, hopefully 13 miles plus. I’ve realised I’m really quite anxious about the challenge I’ve signed up for having struggled badly with my feet on previous long distance walks. I’m really hoping my walking shoes are going to change all that

Don't forget the Compeed!

[lifetime fan]

2 hours ago, Harry's Lad said:

Don't forget the Compeed!

And Cetavlex. 
 

it’s magic cream for everything especially sweat rash in the heat. 

[Champ]

3 hours ago, lifetime fan said:

And Cetavlex. 
 

it’s magic cream for everything especially sweat rash in the heat. 

Can you still buy it?

[Champ]

6 hours ago, Champ said:

We’re going out for a long walk this afternoon, hopefully 13 miles plus. I’ve realised I’m really quite anxious about the challenge I’ve signed up for having struggled badly with my feet on previous long distance walks. I’m really hoping my walking shoes are going to change all that

Yay! Just over 17miles and not a blister to show for it. It’s gonna be all right. The relief…

[lifetime fan]

4 minutes ago, Champ said:

Can you still buy it?

Yeah online or boots will order some in for you. 

[Champ]

On 31/07/2022 at 19:06, tokyojoe said:

Done nine days out of twenty for radiotherapy now. Knackered not because of the treatment but the travelling.

 

Onwards and upwards. 

Not far off now @tokyojoe 

[Champ]

On 01/08/2022 at 19:25, Champ said:

And thank you to Anonymous (2) and Anonymous (3). I’m assuming it’s people on here as it would be a bit odd for my Friends and Family not to out themselves.

 

We’ve done a few practice walks but we’ve not done anything further than about 13 miles so far.  Now I’m writing that I’m thinking I really need to do a couple of long ones before the big event.

 

That said, my biggest fear is having to share a room the night before with someone I’ve not even met yet

And finally someone outside of you lovely people has just added to our collection. 
I know times are tight and about to get so much harder so thank you to everyone who has contributed. 
 

Why, why do we need charities to fund such vital services?

[Jarvinja Ilnow]

A couple of you messaged me after I went on a rant about that stupid music box cancer advert a while ago. Just asking what the circumstances were, and how it might apply to them. I thought long about it and decided to post what I messaged back to them here on the forum. I was in two minds because it is yet another rant, but maybe it rings some bells for some of you, particularly if you are worried that medical professionals are bullshitting you.

 

There is a severe backlog of cancer treatment and diagnosis at the moment, but the reality is also that you tend to only get diagnosed when you are already severely ill, or you fall into an at risk demographic based on age. gender or family history. There were a few missed opportunities in my own experience, and it was only an enthusiastic and vigilant nurse in A&E that asked for extra tests to be run.

 

I hope this essay is useful - it's long because I don't know which bits will ring a bell, so have included everything I can remember.

 

This is what happened:

 

For me, it seemed to start in my late 30s (2007-ish), and went on until diagnosis in 2018. I was still very sporty but started to need longer and longer to recuperate after races and matches. Slowly, gym sessions stretched further apart. I think I got mentally lazy about it and accepted it as part of ageing - also because of long-standing bad patellar tendonitis, which also required days of resting so the swelling would go down. 

 

I can't stress enough how slow and insidious it all was - I mean a glacierly slow process, so you hardly notice the change. Some times it went away, and I could get active again, but this improvement never lasted long.

 

The doctor (locum possibly) I mentioned, who accused me of being a Google hypochondriac, just pushed antidepressants at me. I only agreed to them to shut her up, and only tried them in case it was actually depression. I actually work in psychology, and triage potential mental health clients that are street-homeless, and then refer on to one of our psychiatrists if necessary. This means being able to recognise symptoms consistent with the various MH conditions. I recognised that low mood, fatigue, irritability, anxiety and loss of interest in things were present, but it wasn't those in isolation; even so I allowed respect for a medical professional to make me second-guess myself.

 

Over time, muscle definition also started to decrease - just pudginess really, and face becoming more swollen. Again, you will tell yourself you're not working out enough; even blame yourself, and think only about the symptoms, not the cause. You mentioned swollen lymph nodes - I did get discomfort in one of my armpits and under the jaw from time to time, and my Haematologist always checks them now, even though I never told her about that. It could be a case of a low immune system, and doctors often struggle with patients with less obvious viruses.

 

When I did think about the cause I initially considered it might be depression, but that never rang true with me, so I did more research. I ended up convinced I had a cortisol problem. Obviously, this didn't go down well with the GP, as previously stated. So, about 8 years of gaining more weight, more inactivity, and general shitty standard of life followed.

 

A couple of years later I had a mild heart attack and was diagnosed with Atrial Fibrillation (still waiting for an op). It turned out my organs were slowly shutting down, and the heart was struggling, but that wasn't known at the time. I was then signed off work.

 

The diagnosis only happened because of a fluke. I started fainting. Sometimes had to sit down in the street. Some days I'd go to bed around mid-day as I was falling asleep. Obviously, I blamed everything on the heart - AF meant that fatigue was ever present, though it really was a symptom of something else.

 

One day I fainted on the stairs, and fractured three ribs. After about 6 weeks I fractured them again shoving the front door open and had to go to Chelsea &Westminster A&E because of breathing difficulties. A&E were fucking brilliant - they ran all sorts of tests when I told them about cause of the original injury. I remember them apologising and saying "better safe than sorry". This actually saved my life, as I had adrenal insufficiency, and you can die if you receive a shock (like assault or a car accident). I'd been attcked and threatened on a number of occasions in my job, so between the heart and the adrenals I was a lucky fucker. This was the real reason why my organs were struggling. I saw an endocrinologist and started taking hormones. One of them was fucking cortisone! So after that GP session, 8 years earlier, I felt I'd been fucking gaslighted.

 

A couple of months later, a scan started showing enlarged adrenals. Then they started to push against the kidneys and the pain was agonising. I got a fever and went into A&E and then onto a ward. A couple of days later, I was transferred out to another hospital to see a haematologist. I'd already worked out it was cancer but just didn't know whether it was lymphoma or the hodgkin's kind. I was made up that it was none-Hodgkin, but the Dr said not to be too happy as late diagnosis meant it was already stage 4, and 40-60 survival; and that the chemo would be severe (and it fucking was!). I have a severly suppressed immune system now, but am alive thanks to that radical and new treament R-CODOX-M IVAC (the previous type had a much lower chance of survival), including 10 spinal taps and a failed stem cell transplant.

 

Macmillan's were absolute stars, as I was getting shit from the HR department, and the loan company (Zopa) who were still ringing twice a day when chemo had started, and I'd alreready told them I didn't know whether I'd live long enough to make any more payments.

 

So basically, a couple of fractured ribs saved my life, and great A&E nursing staff, not any GP. And I was proved right and the GP proved wrong. So "needless to say, I had the last laugh."

 

There's a reason there's a phrase: "I want a second opinion!" Even then, one of the problems is GP notes can be very critical of patients, and you can get the reputation of being a hypochondriac, or 'time-waster'. There is GDPR in the UK and EU, but even in other countries there are data access request symptoms. If you think you've been labelled, then definitely make a request to see your notes.

 

I hope you can get clarification and resolution. If you have an idea or suspicion of what you might have you could contact a support organisation for that particular illness and discuss it with them. They may be able to signpost you if they can't help.

 

Hope there is something helpful in all that for you. It's the first time I've written about this so thank you.

[tokyojoe]

My GP was quick on the blood test read and my PSI level was high. Maybe luck of the draw.

[Harry's Lad]

Reading Jarv's post yesterday brought back some unpleasant memories of when my Dad developed bowel cancer.

It's a long story but suffice to say he was fobbed off and paid the ultimate price for their incompetence. 

 

Good luck to everybody who has been touched by this awful disease.

 

Browsing the news sites this morning I came across this.

 

BBC News - Melanoma: 'Doctors said my cancerous mole was fungus'
https://www.bbc.co.uk/news/uk-england-london-62044136

[tokyojoe]

Get the fuck in! Finished! Just felt sorry for some poor sod looked in the changing room when I'd finished.

 

It is a one person cubicle. The place is divided up into LA rooms. Stands for linear accelerator, worth about £2m a pop. Anyway, I sussed a while ago that the changing room in LA12 had a knackered lock. So when I used it later (including today) I just put the catch down and left it unlocked. Doesn't matter as it's 90% blokes in there as prostrate cancer is the predominant cause for being there. Anyway after I'd dished out my standard NHS choccies some bloke was frantically hammering at the lock. I tried to help and then all the staff, and his missus came to help. When I left he was still there, with more in attendance. Not a nice situation for him.

 

Anyway, hope I never see bloody Rickmansworth again.

[AngryOfTuebrook]

Nice one, Joe!

[Pete]

My mates wife had an operation on her liver yesterday.  They managed to remove all the cancer in the liver.  Next step is to fuck the colon cancer off. 

[Jarvinja Ilnow]

14 hours ago, tokyojoe said:

Get the fuck in! Finished! Just felt sorry for some poor sod looked in the changing room when I'd finished.

 

It is a one person cubicle. The place is divided up into LA rooms. Stands for linear accelerator, worth about £2m a pop. Anyway, I sussed a while ago that the changing room in LA12 had a knackered lock. So when I used it later (including today) I just put the catch down and left it unlocked. Doesn't matter as it's 90% blokes in there as prostrate cancer is the predominant cause for being there. Anyway after I'd dished out my standard NHS choccies some bloke was frantically hammering at the lock. I tried to help and then all the staff, and his missus came to help. When I left he was still there, with more in attendance. Not a nice situation for him.

 

Anyway, hope I never see bloody Rickmansworth again.

Well done, mate. I can imagine the relief and joy you felt as Rickmasworth and the hopsital faded into the distance!

[tokyojoe]

4 hours ago, Pete said:

My mates wife had an operation on her liver yesterday.  They managed to remove all the cancer in the liver.  Next step is to fuck the colon cancer off. 

Best wishes mate. 

[Bjornebye]

1 hour ago, Jarvinja Ilnow said:

Well done, mate. I can imagine the relief and joy Rickmansworth and the hospital felt as Tokyo faded into the distance! 

. 

 

 

 

 

 

 

 

 

 

Brilliant news Dave x 

[tokyojoe]

Thaks Damien. I wont know anything for sure though until I see the oncologist, not till November!

[Champ]

23 minutes ago, tokyojoe said:

Thaks Damien. I wont know anything for sure though until I see the oncologist, not till November!

I can only imagine that that seems like an age away. I hope you can distract yourself as best as you can til then

[Harry's Lad]

2 hours ago, tokyojoe said:

Thaks Damien. I wont know anything for sure though until I see the oncologist, not till November!

You know how time flies once you get to our age mate, November will be here before you know it.

I'll crack open a beer or five when you tell us the good news.

[Champ]

On 04/08/2022 at 12:22, Champ said:

We’re going out for a long walk this afternoon, hopefully 13 miles plus. I’ve realised I’m really quite anxious about the challenge I’ve signed up for having struggled badly with my feet on previous long distance walks. I’m really hoping my walking shoes are going to change all that

Thanks very much @redinblack for your donation.

Walking distances in proper walking shoes is definitely the answer. No issues at all.

Unlike on Sunday when I went into town in a new pair of sandals and ripped the skin off both of my feet. I’m in agony

 

[Champ]

Well, this is it, no time for any more preparation, tomorrow is our marathon walk…although not as epic as Mr C thought who was trying to work out how we’d manage the full distance of the Rob Roy Way (79 miles)!
 

Thank you to everyone who has donated to our Justgiving page, especially the many anonymous donors who I haven’t been able to thank personally.

 

Just the carbo loading now…