Effing cancer is an effing effer, frankly

Effing cancer is an effing effer, frankly

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22

2,314 posts

138 months

Thursday 14th July 2022
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ED209 said:
Mam is still clinging on, it’s breaking my heart seeing her and what it’s doing to my dad.

Me dad and my brother who have been here 24/7 for almost a week now are also tired. We are obviously starting to get on each other’s nerves and things are becoming tense. It’s been an absolutely st week.
Sometimes when quick would be the kindest way, death can be slow. I'd only just met my wife when her mum died. A small group of us cocooned ourselves into the house, no one out, no one in. My wife was only 18, her mum somehow clung on until her 25th wedding anniversary. My wife came from the mum's bedroom and said to her 11-year-old brother "mummy's going to go to sleep now". It's still a powerful memory 24 years later.

And of course, because it's fking cancer, the 'faulty' gene that potentially puts my wife in harm's way of the same cancer (HNPCC) is nothing to do with the bonkers rare cancer she actually has.

fk you cancer.

Sat in Tuscany, day 3 of a cruise that a year ago seemed impossible. Thank you NHS.

billflin

159 posts

269 months

Friday 15th July 2022
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FactoryBacked said:
Hodgie said:
FactoryBacked said:
billflin said:
Never in a million years did I ever think that I would have any meaningful input to this thread. There is no history of cancer in my family, and I am reasonably(!) young and healthy.

I am a long-term poster but this is a second account, because I have elected to keep my situation known to only a very small number of people.

I also have no idea why I am posting this. I have written it, deleted it, written it again....Anyway....

A few months ago I noticed something not quite right with one of my testicles. It was much "firmer" than normal.

A quick Doctor Google indicated that it could be nothing but could be something. I presumed it would be nothing. I felt (and have felt throughout) absolutely fine.

Completely out of character I did something about it, and was able to see a GP a week or so later. She wasn't sure what was going on.

Unfortunately that was where the NHS fell over, and whilst I was put on a two-week referral, at the end of two weeks I was told that there were no appointments and they didn't know when there would be. By this stage I was in a bit of a state and that news was devastating. I am fortunate that I have private health cover with work and I got in touch with them. A week later I was seeing a consultant, who within about two seconds concluded that it was highly likely that I had testicular cancer and that he could operate a week later.

I am not ashamed to admit that I was absolutely stunned and hugely upset. I was immediately taken off for blood tests and given plenty of information, all of which went in one ear and out of the other.

I had arrange to meet some mates at the pub straight afterwards, so I sat through the evening as if nothing was wrong, laughing and joking, whilst at the same time wondering how I would tell my wife.....It was bizarre. I held it together for about 10 seconds when I got home.

Although I had the best of care, the following days and weeks have been highly stressful. The blood tests were clear, a CT test was largely clear except one area of concern (a subsequent PT scan gave me the all clear - a massive relief). I had the op a week after the first consultation. I am still processing what has happened, but feel that I have been radically put out of kilter. I am told that I will get used to this in due course but that feels a long way off. It upsets me that I do not feel like myself.

I now have a difficult decision to make as to whether to have a single round of chemotherapy to "sweep up" any baddies that might have escaped, or just have surveillance. I would be interested to know if anyone else has faced the same decision? The chemotherapy would reduce the risk of recurrence from circa 20% to 2-3%. However on that basis there is an 80% chance that I am cured and I do not need any treatment. The advice for me is that the decision is finely balanced. I have to make it soon.

I could ramble on and on about the impact that this has had on me. That would, however, be very self indulgent and probably unhelpful for others. Moreover, I am aware that I am actually incredibly lucky. It was caught early, is completely curable, and compared to others I have had a very easy ride so far.

In my limited experience - and for anyone reading this - I would say two things. Firstly, you know if something is up, so do something about it. There was a period of time in my teenage years where having so many people get their hands on my balls would have been an achievement. Secondly, take 10 minutes to double check critical illness/income protection/life insurance policies just to check that you are covered. Knowing that will remove a significant layer of stress should the worst happen. A particular low point was logging in to my work computer at 3am to try and be sure that we would be OK financially should the news be bad or get worse.
Have you decided on your course of treatment yet?

Happy to offer any advice I can as I was in the same position 18 months ago. I've got my one year post-treatment CT scan in a week or so, so it's all still pretty fresh.

Re: chemo, I didn't have any option as it had spread to my lymph nodes but I would have taken it anyway if offered. I had three rounds of BEP and then also needed the RPLND operation to be sure. I would equate one round of chemo to a really bad hangover that lingers a bit!

I found the Macmillan testicular cancer forum very useful to read through. I felt much more appraised, calm and in control during consultancy appointments as a result.
Hi FactoryBacked,

How did you get on with your scan? Good luck if you haven’t had it yet!
Thanks for asking, got my full set of blood tests tomorow and then scan shortly after.

Feeling much less anxious this week. Sunshine and some evening walks have helped clear my head a bit.

I've been the picture of calm since treatment finished, probably a little too matter of fact even, aside from the occassional passing thought of what I'd faced last year. But as this key date has approached I have suddenly become more and more anxious. It has been all consuming.

The long term side effects which have thankfully been quite mild were suddenly amplified a hundred times over. Every ache and pain was my body telling me the cancer was back and it had spread. I even convinced myself I was one of the tiny percentage that end up with leukemia last week.

I guess it never really fully leaves you, metaphorically, even after the physicality of a bout of successful treatment.

Big love to everyone on this thread who is currently facing up to the unknown either themselves or alongside loved ones.
FactoryBacked, good luck - the above really resonates with me. The idea that I will never truly be free of this is frightening.

Hodgie, how are you getting on with the recovery from the carbo? In reality it was a foregone conclusion and I had no choice, but I have "decided" to go ahead with the chemo, hopefully next week so that I can get it out of the way. I am absolutely dreading it.

Strength to all those facing this disease in its many forms - anxious about results, dealing with the consequences or supporting somebody.

Hodgie

170 posts

161 months

Friday 15th July 2022
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billflin said:
FactoryBacked, good luck - the above really resonates with me. The idea that I will never truly be free of this is frightening.

Hodgie, how are you getting on with the recovery from the carbo? In reality it was a foregone conclusion and I had no choice, but I have "decided" to go ahead with the chemo, hopefully next week so that I can get it out of the way. I am absolutely dreading it.

Strength to all those facing this disease in its many forms - anxious about results, dealing with the consequences or supporting somebody.
Hi Billflin,

I’m completely fine now and back at work. Im
currently having my bloods taken for the follow up!

Im sure it won’t be as bad as you are currently imagining. It’s not pleasant but compared to the chemo regimes others go through it’s fairly mild. It’s certainly given me a lot of empathy for others who are really being put through it.

For what it’s worth I think you’ve made the right decision.

A couple of bits of advice, based on my experience of it;

- when I felt nauseous eating actually helped reduce it, a strange feeling eating while feeling sick but it did help. The steroids and anti sickness tablets help with this.
- it made me constipated, have some medicine ready to counteract that if it happens as that wasn’t nice.

Good luck, you’ll be fine. Let us know how it’s going!

Thoughts with everyone facing this stty disease in all it’s forms. Reading through this thread it’s horrendous what people have been through, but there is also positivity with people getting through it for anyone who’s reading and facing it or a loved one.

ED209

5,751 posts

245 months

Saturday 16th July 2022
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ED209 said:
Mam is still clinging on, it’s breaking my heart seeing her and what it’s doing to my dad.

Me dad and my brother who have been here 24/7 for almost a week now are also tired. We are obviously starting to get on each other’s nerves and things are becoming tense. It’s been an absolutely st week.
She is still hanging on the poor bugger. Over the last couple of days she has given us a couple of real scares.

No quality of life for her now at all. Of course I love my mother and don’t want her to be ill or die but it’s so awful sitting watching the state she is in. It’s no way to live.

trixical

1,057 posts

176 months

Saturday 16th July 2022
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ED209 said:
She is still hanging on the poor bugger. Over the last couple of days she has given us a couple of real scares.

No quality of life for her now at all. Of course I love my mother and don’t want her to be ill or die but it’s so awful sitting watching the state she is in. It’s no way to live.
So sorry to hear this ED209, i've looked back through some of your posts & can't see if hospice was considered or discussed at any point?
Given the levels of exhaustion you, your dad & brother have now hit it might be worth considering for the comfort of everyone, especially as the Dr has been in recently to see how your mum is. When I helped with a family member at the end of their battle the Dr eventually stopped by to discuss it (with an immediately available spot) 1 day too late when they were no longer conscious to be convinced.
In hindsight I think we all would have pushed that more as them being at home didn't benefit anyone including the sick party.

Edited by trixical on Saturday 16th July 12:02

ED209

5,751 posts

245 months

Saturday 16th July 2022
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trixical said:
So sorry to hear this ED209, i've looked back through some of your posts & can't see if hospice was considered or discussed at any point?
Given the levels of exhaustion you, your dad & brother have now hit it might be worth considering for the comfort of everyone, especially as the Dr has been in recently to see how your mum is. When I helped with a family member at the end of their battle the Dr eventually stopped by to discuss it (with an immediately available spot) 1 day too late when they were no longer conscious to be convinced.
In hindsight I think we all would have pushed that more as them being at home didn't benefit anyone including the sick party.

Edited by trixical on Saturday 16th July 12:02
Her wishes were to be at home so that’s where we are. We do have carers coming in and doing personal hygiene stuff though which helps a lot. There’s also no way we could even discuss a hospice with her now.

As blunt as it sounds the only reason the doctor called was so that he can issue a certificate when she passes.

trixical

1,057 posts

176 months

Saturday 16th July 2022
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ED209 said:
Her wishes were to be at home so that’s where we are. We do have carers coming in and doing personal hygiene stuff though which helps a lot. There’s also no way we could even discuss a hospice with her now.

As blunt as it sounds the only reason the doctor called was so that he can issue a certificate when she passes.
Ok you have my sympathies, good to hear you have some external agency support. It was the same wish with my family member but I think they would have been convinced if the Dr had put forward the argument to them after a while of the melee of being at home.
Having been through it/seen it there are plenty of our friends/family who would have previously had the same wish that have now changed their minds.

Apologies to be graphic, when the time comes you will still need to have a Dr certify it before the body can be removed (& remove any medicine drivers - critical) & if its out of hours your options may be limited & it may take some time as you'll be bottom of the priority list, so have numbers on hand & prime them. & someone will need to be interviewed by the Dr (mine was by phone) to be the name of the present person on the cert, its not awful but is sad & some detail needed iirc so you or your brother will probably want to do this rather than your dad, whomever is present.

My thoughts are with you

ED209

5,751 posts

245 months

Saturday 16th July 2022
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trixical said:
Ok you have my sympathies, good to hear you have some external agency support. It was the same wish with my family member but I think they would have been convinced if the Dr had put forward the argument to them after a while of the melee of being at home.
Having been through it/seen it there are plenty of our friends/family who would have previously had the same wish that have now changed their minds.

Apologies to be graphic, when the time comes you will still need to have a Dr certify it before the body can be removed (& remove any medicine drivers - critical) & if its out of hours your options may be limited & it may take some time as you'll be bottom of the priority list, so have numbers on hand & prime them. & someone will need to be interviewed by the Dr (mine was by phone) to be the name of the present person on the cert, its not awful but is sad & some detail needed iirc so you or your brother will probably want to do this rather than your dad, whomever is present.

My thoughts are with you
Thanks, I think you mean a doctor to confirm death. The doctor visits so he could issue a death certificate in order to avoid the need for a post-mortem etc.

I have attended hundreds of sudden deaths over the years as part of my work so I know how it all works. As well as giving me knowledge more worryingly I thing it has made me emotionally numb to death so I am really worried that when the time comes I won’t be upset and it will just be another dead body. Most people won’t understand where I am coming from but I have seen bodies in all sorts of states, decomposed, peaceful, having died traumatic deaths, child deaths, I have cut dozens of people who have hanged themselves down and I have performed cpr in vain on a murder victim. These things are not normal and have messed me up a little bit.

trixical

1,057 posts

176 months

Saturday 16th July 2022
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Yes, brain fade oops. At least you know the process, we were blind to it & didn't really get any guidance (not helped further by being in one county by geographical area but a different county by postal town), the district nursing team were the most helpful.

i'm sorry you've seen all that, but i'm sure you did it all with respect to those who passed and their families.

ED209

5,751 posts

245 months

Monday 18th July 2022
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Lost mam at 5pm yesterday. Very peaceful in the end. We are all devastated but it also came as a relief, she fought it so hard in the last week or so and it was awful to sit and watch towards the end. I hope she wasn’t distressed but it appeared to me like she was until she was too weak to fight any more.

She had been fighting cancer for about 3.5 years in total and must have been in in mental and physical pain but she never complained once. Right until she was physically unable to she was still always putting her grand children and children first irrespective of what was happening to her.


loafer123

15,455 posts

216 months

Monday 18th July 2022
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I’m sorry for your loss, but glad her suffering is now over.

My advice is to take time to remember the good times, and let the last couple of weeks fade away over time.

BrickCounter

151 posts

63 months

Monday 18th July 2022
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Sorry to hear that ED209.

While it obvious to see from your posts how difficult it has been, she had her final wish.

Take some time to yourself, you deserve it.

Starfighter

4,937 posts

179 months

Monday 18th July 2022
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Some news to share.

My wife was diagnosed with bowel and liver cancer in April 2021 and a few weeks of testing. She was told she had a 50:50 of living 2 years and an outside chance of 4 years. The world fell apart for us. Operating was not an option as the liver tumors were too many and too large tumors to work. Chemo was the only option with some drugs selected by on genetic screening.

After 6 months of chemo her team had another chat with the liver team at Birmingham who said that they could work what they could see after the chemo. So she went in for the operation and had half her liver removed in November. In march she had a second major operation to remove the bowel cancer.

Her CT scan and all the other data cam back last week and she is now cancer free. She will be tested again every 3 months for 2 years and then every 6 months for life.

There is hope out there.

motco

15,980 posts

247 months

Monday 18th July 2022
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Starfighter said:
Some news to share.

My wife was diagnosed with bowel and liver cancer in April 2021 and a few weeks of testing. She was told she had a 50:50 of living 2 years and an outside chance of 4 years. The world fell apart for us. Operating was not an option as the liver tumors were too many and too large tumors to work. Chemo was the only option with some drugs selected by on genetic screening.

After 6 months of chemo her team had another chat with the liver team at Birmingham who said that they could work what they could see after the chemo. So she went in for the operation and had half her liver removed in November. In march she had a second major operation to remove the bowel cancer.

Her CT scan and all the other data cam back last week and she is now cancer free. She will be tested again every 3 months for 2 years and then every 6 months for life.

There is hope out there.
Bloody marvellous Starfighter! She deserves to survive for going through all that!

trixical

1,057 posts

176 months

Monday 18th July 2022
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Sorry to hear the news ED209, she was clearly a very strong lady & will be remembered. Look after yourselves.

That is amazing news Starfighter.

Adrian E

3,248 posts

177 months

Monday 18th July 2022
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Starfighter said:
Some news to share.

My wife was diagnosed with bowel and liver cancer in April 2021 and a few weeks of testing. She was told she had a 50:50 of living 2 years and an outside chance of 4 years. The world fell apart for us. Operating was not an option as the liver tumors were too many and too large tumors to work. Chemo was the only option with some drugs selected by on genetic screening.

After 6 months of chemo her team had another chat with the liver team at Birmingham who said that they could work what they could see after the chemo. So she went in for the operation and had half her liver removed in November. In march she had a second major operation to remove the bowel cancer.

Her CT scan and all the other data cam back last week and she is now cancer free. She will be tested again every 3 months for 2 years and then every 6 months for life.

There is hope out there.
Great news - I've shared my own experience of bowel cancer with metastasis in the liver (and the lung as well, as it turns out) on here in the past - it's particularly sobering that secondaries in the liver were basically palliative care only across the board about 5 or so years ago (the Macmillan website was only updated a couple of years ago to remove that news, which scared the crap out of me!). I saw my awesome liver surgeon in Guildford today for my latest post-op follow up (I had my 3rd liver resection 4 weeks ago - I've had 25%, then 10%, then 50% removed) and histology confirmed they'd got the 2 buggers that showed up last summer completely. One was right by the major blood vessels in the centre of my liver, so although they weren't big they were bloody awkward to access, hence removing the whole left lobe this time. Good job it grows back in 3 months!

The chemo is the worst bit for me - 3x 3 months of treatment has ruined me physically, but at least I'm still here! Hopefully with time I'll get some of that back, although some of the side effects like eyesight are probably permanent damage, and lord knows if I'll ever get the muscle mass back to allow me to mountain bike properly again.

My bowel op was the 'easy' first bit - 6" chopped out and job done; no stoma and all been good since (touches wood!)

'Just' the one lung tumour, which they kind of knew about a year or more ago, left to deal with. That'll be the upper lobe of my left lung to come out keyhole soon. Hopefully I'll actually be free of this, except the infernal 4 monthly CT and MRI scans for the next 5 years. My diagnosis was early 2020 as Covid kicked off.....

I've been on this journey with an old school friend I've known for 40-odd years who had a brain tumour removed (or rather, the bits they could get to) about 4-5 years ago and has had a relatively good run of it until last year, when a routine scan showed it'd grown aggressively into the brain stem and they couldn't operate - chemo initially helped, but then stopped working. His Mrs messaged me the other day to say he's in hospital having become unresponsive at home, and she hopes he can come home for palliative care with his 2 kids about. I'm feeling really conflicted, knowing 'there but for the grace of whatever' I could still find myself in that position. I'm just about recovered enough to consider the drive to see him, if he's allowed home, but not sure I can keep my emotions in check. We shared tents on school camping trips, got drunk together as teenagers, and he was an usher at my wedding - he's always been there and I'm not sure I'm ready to face the reality that he won't be....

The big C definitely sucks big time, but it's nice to hear the good news as well as share in the grief of those whose loved ones are not so fortunate in terms of outcomes.

Big hugs to all

Adrian

RC1807

12,556 posts

169 months

Monday 25th July 2022
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My Dad (T2 diabetic, recovering from sepsis, 77 years old) had a lesion on his face that his GP didn't take seriously.
It turned out to be skin cancer.
Then he had a 2nd case.
They were both removed, so he had a lot of stitches / scarring on his face.

Oncology check up then found he had stage 4 lung cancer a couple of months ago.

Friday morning he had problems with movement and complained of a cloud in his vision. He was having an aneurysm.
He was admitted to hospital again on Friday.
He had a CT scan and they found the cancer's metastasised to his liver and he has 3 tumours on his brain. One is the size of a golf ball and is causing the bleed. It's affected his ability to move and also his speech and memory.

I don't get on with my Dad at all, but knowing he's suffering like this is terrible.

The Drs are now trying to make him as comfortable as possible whilst organising palliative care. I don't think he'll last more than this week as they can't treat the bleeding in his brain.

GT3Manthey

4,548 posts

50 months

Monday 25th July 2022
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RC1807 said:
My Dad (T2 diabetic, recovering from sepsis, 77 years old) had a lesion on his face that his GP didn't take seriously.
It turned out to be skin cancer.
Then he had a 2nd case.
They were both removed, so he had a lot of stitches / scarring on his face.

Oncology check up then found he had stage 4 lung cancer a couple of months ago.

Friday morning he had problems with movement and complained of a cloud in his vision. He was having an aneurysm.
He was admitted to hospital again on Friday.
He had a CT scan and they found the cancer's metastasised to his liver and he has 3 tumours on his brain. One is the size of a golf ball and is causing the bleed. It's affected his ability to move and also his speech and memory.

I don't get on with my Dad at all, but knowing he's suffering like this is terrible.

The Drs are now trying to make him as comfortable as possible whilst organising palliative care. I don't think he'll last more than this week as they can't treat the bleeding in his brain.
So sorry to hear this

billflin

159 posts

269 months

Monday 25th July 2022
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I am now on day six of my cycle of carboplatin.

The side effects have been much milder than I had anticipated, which has been a relief. The anti-nausea meds really worked for me and I have not really felt sick at all, although the indigestion has been bad at times. My sleep has been very poor and I am definitely in the "exhausted" phase now, but do feel that I am working my way out of it.

Thanks to all who have offered support/guidance. Best of luck to those facing this disease in its many forms.

ED209

5,751 posts

245 months

Monday 25th July 2022
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ED209 said:
Lost mam at 5pm yesterday. Very peaceful in the end. We are all devastated but it also came as a relief, she fought it so hard in the last week or so and it was awful to sit and watch towards the end. I hope she wasn’t distressed but it appeared to me like she was until she was too weak to fight any more.

She had been fighting cancer for about 3.5 years in total and must have been in in mental and physical pain but she never complained once. Right until she was physically unable to she was still always putting her grand children and children first irrespective of what was happening to her.
Not cancer related as such but heard today one of my mates from work took his own life yesterday.. shyte.