Cancer Influencers #6

[Megasmon92]

Im not talking about her home care team, I specifically worded it that way because I knew someone would bring up that it was free. I was talking about how being less in pain due to her private care meant she was able to even have home care, that plus more money to modify her living environments. Monique was so ill she couldn’t even leave her bed nevermind go home.

Look, this isn’t a competition about how Deborah actually was equal to us all. Yeah she had some NHS stuff, yeah she paid for some stuff herself, yeah she had some insurance.

Point is, no one should be written off because of their stage/lack of wealth. If Rich wants this surgery and has found people able and willing, he should be entitled to that without people saying there’s no value due to how advanced he is. Even if he was 1% chance of survival that’s more than the certain death he faces otherwise.

Ive just read back my last few posts and I can see why it came across wrong. I would never think someone doesn't deserve the chance of survival at all, I hope Rich gets the surgery he needs to give him any chance there is. I mean if someone offered me surgery to give me a chance I would snatch there hands off. I am in complete agreement that people should be given a chance at life if there is options out there.

 

[DoctorFlocci]

Im not talking about her home care team, I specifically worded it that way because I knew someone would bring up that it was free. I was talking about how being less in pain due to her private care meant she was able to even have home care, that plus more money to modify her living environments. Monique was so ill she couldn’t even leave her bed nevermind go home.

Look, this isn’t a competition about how Deborah actually was equal to us all. Yeah she had some NHS stuff, yeah she paid for some stuff herself, yeah she had some insurance.

Point is, no one should be written off because of their stage/lack of wealth. If Rich wants this surgery and has found people able and willing, he should be entitled to that without people saying there’s no value due to how advanced he is. Even if he was 1% chance of survival that’s more than the certain death he faces otherwise.

Deborah didn’t have HIPEC so her situation (& pain) will have been different to Monique’s.

Monique had HIPEC - she found someone able & willing to proceed after she was declined by the NHS - to her detriment, imho.

A dozen (or so) are capable of the HIPEC (/similar variants) surgery but BowelBro will struggle to find one who’s willing - regardless of wealth - given his clinical situation, which is unique (as it is for every patient).

Outcomes like Monique’s will rightly alter the acceptance criteria for this type of surgery.

 

[jackolantern]

Deborah didn’t have HIPEC so her situation (& pain) will have been different to Monique’s.

Monique had HIPEC - she found someone able & willing to proceed after she was declined by the NHS - to her detriment, imho.

A dozen (or so) are capable of the HIPEC (/similar variants) surgery but BowelBro will struggle to find one who’s willing - regardless of wealth - given his clinical situation, which is unique (as it is for every patient).

Outcomes like Monique’s will rightly alter the acceptance criteria for this type of surgery.

He's already found someone who is willing. Why do you have to be right about this? Can you not just accept that regardless of whether you think Rich should have the surgery or not, it is his body, life and choice on trying to achieve that? Yes the most likely scenario is he is going to die from this, even if he gets the surgery and yes on the very small chance he survives, it will no doubt come with a cost. But right now, he has life quality so if he wants to cling to even the tiniest chance of preserving that, bleeping fair play to him.

 

[Glitteryflipflops]

She maybe was just so used to a privileged life it was normal to her and didn’t think about the fact it was different for others

Possibly.

I remember when she used to talk about her treatment on the podcast and in the media etc, she often very heavily implied that the reason that she got such great care and had such a great relationship with her team was because they were willing to go the extra mile because they really liked her as a person or something. I remember her saying that when she was diagnosed Stage 4 her oncologist said to her 'I'm going to do whatever it takes to keep you alive for as long as possible' or words to that effect, but missed the bit where he meant 'because you are paying shitloads of money for your care'.

I was an avid listener of the podcast and it never even occurred to me that she was a private patient until she very briefly mentioned it in the Panorama documentary, and then the penny dropped and it explained a lot! Maybe I'm just not very quick off the mark, I did think she was getting great treatment, but I didn't click she was getting it all privately!

 

[jackolantern]

Possibly.

I remember when she used to talk about her treatment on the podcast and in the media etc, she often very heavily implied that the reason that she got such great care and had such a great relationship with her team was because they were willing to go the extra mile because they really liked her as a person or something. I remember her saying that when she was diagnosed Stage 4 her oncologist said to her 'I'm going to do whatever it takes to keep you alive for as long as possible' or words to that effect, but missed the bit where he meant 'because you are paying shitloads of money for your care'.

I was an avid listener of the podcast and it never even occurred to me that she was a private patient until she very briefly mentioned it in the Panorama documentary, and then the penny dropped and it explained a lot! Maybe I'm just not very quick off the mark, I did think she was getting great treatment, but I didn't click she was getting it all privately!

I think it depends on your experience of the system I suppose, I knew from early days she had private care but I can totally see how people would be none of the wiser, that's part of the reason she always bothered me so much. It makes me really upset to think of people terrified facing a cancer diagnosis, but feeling somewhat reassured they'd get care like that only to then be faced with the reality. I'd like to hope she was just so in her own world it didn't occur to her, but you could be right and she was just narcissistic or simply didn't give a tit. We won't ever know I suppose. Same with the money she raised, some will say it was to help others, some will say it's because she wanted the 'fame' and fawning.

 

[Glitteryflipflops]

Slight change of subject but I saw Steve Bland had done a post about doing the Walk the Walk Moonwalk next year and how he had started 'training' for it. Which I thought was a bit odd as he has done at least one marathon fairly recently I think, so why would he start training for a walking marathon that's not until next May?

Then I saw on his stories that it is actually an #AD accompanied by a very 'addy' scripted pre recorded video. Does this mean he is being paid by a breast cancer charity to advertise their event? Why the hell would he not be promoting it and doing it for free?!!!

 

[DoctorFlocci]

He's already found someone who is willing. Why do you have to be right about this? Can you not just accept that regardless of whether you think Rich should have the surgery or not, it is his body, life and choice on trying to achieve that? Yes the most likely scenario is he is going to die from this, even if he gets the surgery and yes on the very small chance he survives, it will no doubt come with a cost. But right now, he has life quality so if he wants to cling to even the tiniest chance of preserving that, bleeping fair play to him.

Bib: that was never my assertion / contention

 

[LittleMissRuby]

I was referring to BBs end of life care. Monique was writhing in agony in an NHS ward. Deborah was able to die at home surrounded by her loved ones due to community nurses. A lot of this will be because her pain was better managed leading up to this point due to her private care so she wasn’t in such a bad way. She also was better able to afford home comforts no doubt and her home better suited. I agree Moniques surgery was fruitless, but I wasn’t talking about that. Nor does it mean Bowel Bro doesn’t deserve the chance if he wants to take it.

Granted BB's activr treatment was absolutely above and beyond Moniques for sure. But the end of life care/lack of pain control were down to choices by monique and or her parents. The NHS may not be great for active treatment, but (again my own personal opinion) we DO do end of life planning and care well. If she hadn't have been so reluctant to have pain relief for fear of being out of it, or insisted in fruitlessly aggressively treating infection and infection....she could have easily gone home to be cared for and passed away peacefully in her own home. But the decisions they made for her meant they kept her in an acute hospital setting chasing treatments they believed were going to make her better. So yes I agree her end of life seemed tragically barbaric and mis managed, but from my perception (not claiming to be right), that was down to her and her families choices.

 

[candyland_]

Could Monique have had a better quality of live if she took the strong pain relief that was offered? I know she used to resist it and battle through but she couldn’t leave her hospital bed for months at a time. She was advised to remove drains but kept them in despite the constant infections. I know she was between a rock in a hard place but I think things could have been managed better but she didn’t seem to have any relationship with her hospital in the final months. Rich doesn’t have much of a rapport with his consultant whereas Deborah was close to hers and it got her a long way.

Regarding Rich and HIPEC - I don’t think he understands how barbaric the recovery would be. He has a good quality of life as things stand so it could be a huge step back for him if it didn’t work.

Granted BB's activr treatment was absolutely above and beyond Moniques for sure. But the end of life care/lack of pain control were down to choices by monique and or her parents. The NHS may not be great for active treatment, but (again my own personal opinion) we DO do end of life planning and care well. If she hadn't have been so reluctant to have pain relief for fear of being out of it, or insisted in fruitlessly aggressively treating infection and infection....she could have easily gone home to be cared for and passed away peacefully in her own home. But the decisions they made for her meant they kept her in an acute hospital setting chasing treatments they believed were going to make her better. So yes I agree her end of life seemed tragically barbaric and mis managed, but from my perception (not claiming to be right), that was down to her and her families choices.

This is basically what I wanted to say but I posted before I had fully caught up.

 

[wintercynic]

He's already found someone who is willing. Why do you have to be right about this? Can you not just accept that regardless of whether you think Rich should have the surgery or not, it is his body, life and choice on trying to achieve that? Yes the most likely scenario is he is going to die from this, even if he gets the surgery and yes on the very small chance he survives, it will no doubt come with a cost. But right now, he has life quality so if he wants to cling to even the tiniest chance of preserving that, bleeping fair play to him.

He hasn’t found someone who will do it though. He’s found various people who are offering ‘IF you can get to this point, IF you don’t have cancer in your liver, IF you don’t have cancer in your lung, IF your scores are low enough, IF you do this number of sessions of chemo’ then they may consider it.

No one (as far as I can tell) has said they categorically will do HIPEC.

I’m not saying he shouldn’t try for it. But no one has said ‘yes, let’s get the surgery scheduled for next week, I’ll do it’. It’s all ‘ifs, buts and maybes’.

 

[candyland_]

JM said Rich had other options if he couldn’t do HIPEC and that he wouldn’t give up on him but ended his involvement via his secretary with a stick to chemo comment so things must be bleak. He knows his stuff so it probably is cancer of the liver - his oncologists word that it isn’t cancer can’t be trusted.

 

[jackolantern]

He hasn’t found someone who will do it though. He’s found various people who are offering ‘IF you can get to this point, IF you don’t have cancer in your liver, IF you don’t have cancer in your lung, IF your scores are low enough, IF you do this number of sessions of chemo’ then they may consider it.

No one (as far as I can tell) has said they categorically will do HIPEC.

I’m not saying he shouldn’t try for it. But no one has said ‘yes, let’s get the surgery scheduled for next week, I’ll do it’. It’s all ‘ifs, buts and maybes’.

Sure, but if someone has told him he can have the surgery if it isn’t cancer in his liver, then it makes complete sense him going to the ends of the earth to try and find out if it is.

 

[LittleMissRuby]

Sure, but if someone has told him he can have the surgery if it isn’t cancer in his liver, then it makes complete sense him going to the ends of the earth to try and find out if it is.

Yes, it doesn't seem to make much sense that everyone has written him off on the 'what if it's cancer in your liver'. I know PET scans aren't infallible but it's gotta be better than guessing based on the CT results

 

[jackolantern]

Yes, it doesn't seem to make much sense that everyone has written him off on the 'what if it's cancer in your liver'. I know PET scans aren't infallible but it's gotta be better than guessing based on the CT results

Exactly, especially as he’s had opinions saying they are cysts. I appreciate the lung has complicated matters but there still is the potential it’s in neither so naturally he’s got to be sure on that before ‘giving up’.

 

[Zulusam]

Is it possible that NHG didn’t mention it as they don’t believe it is cancer though? Whilst I appreciate it sounds bad, and you wouldn’t want one - a lesion is not automatically cancer, especially after a bad infection? They are they same people who claim no liver cancer either….so either they’re grossly incompetent or they just don’t believe it’s actually an issue? It goes without saying they should be double checking, given the circumstances. I can absolutely see how this whole situation has just got completely out of hand ~ it’s like they’ve decided he’s a lost cause and why bother investigating. Just let the bowel cancer finish him off and no one close to him would be any the wiser. But he has also said that whilst the consultant and he do not have a rapport - that consultant is very very good. So……that only leaves a malicious intent. Because people who are very good tend to at least try and do their job properly whatever the constraints of a system are. He could even have said we are too stretched to help so go private. I’m sure Richard would have found a way. This is all so much of a mind duck to even outsiders. I cannot understand any of this!!

 

[candyland_]

Can Northampton be trusted at this point? He’s had two different surgeons say he’s likely to have cancer spread while NGH says he doesn’t.

 

[SaintLeo]

Is it possible that NHG didn’t mention it as they don’t believe it is cancer though? Whilst I appreciate it sounds bad, and you wouldn’t want one - a lesion is not automatically cancer, especially after a bad infection? They are they same people who claim no liver cancer either….so either they’re grossly incompetent or they just don’t believe it’s actually an issue? It goes without saying they should be double checking, given the circumstances. I can absolutely see how this whole situation has just got completely out of hand ~ it’s like they’ve decided he’s a lost cause and why bother investigating. Just let the bowel cancer finish him off and no one close to him would be any the wiser. But he has also said that whilst the consultant and he do not have a rapport - that consultant is very very good. So……that only leaves a malicious intent. Because people who are very good tend to at least try and do their job properly whatever the constraints of a system are. He could even have said we are too stretched to help so go private. I’m sure Richard would have found a way. This is all so much of a mind duck to even outsiders. I cannot understand any of this!!

Regardless of whether they thought it was an issue surely they should still have mentioned it as something they found? I had to have a hysterectomy due to my cancer and my consultant gave me a run down of the fibroids, ovarian cysts and other none cancer related stuff they found (it was a general sh*t show down there!) He even ended by saying “obviously none of this matters now cos we’ve taken it all away but you still should know what we found”.

It’s Rich’a body so if something is going on he should be told. It’s not for the drs to decide to withhold information because they don’t feel it’s worthy of sharing.

 

[Zulusam]

Oh I completely agree - I’m just trying to come up with anything that might explain the no mention? Of course it should have been conveyed. I can’t see any reason not to…,other then to just get out of not having to do anything about it……

 

[wintercynic]

Sure, but if someone has told him he can have the surgery if it isn’t cancer in his liver, then it makes complete sense him going to the ends of the earth to try and find out if it is.

I absolutely agree that he needs to find out what the liver lesions/cysts and lung lesions/infection is. Especially given his main aim is to have the HIPEC. However no one has told him they will do it. Everyone is prevaricating - it almost feels like they’re looking for reasons to say no to him, but that aren’t their fault.

You can’t have the bowel surgery because of your liver lesions. You can’t have the liver surgery because of your lung lesions. You can’t have chemo for too long cos it would kill you. You can’t have the HIPEC because your scores haven’t dropped enough.

At the end of the day, he’s no further on. He’s got spread throughout his abdomen and pelvis,, possible spread to liver and lung, is a generally healthy guy, has done nearly all of the chemo offered and no one is willing to give him an answer as to:

-if the lung is resectable then can I have that and then HIPEC

-if the liver is resectable then can I have that and the HIPEC

If my scores get below a certain level, and the lungs and liver have been resected then can have HIPEC.

and asking a load of medics where their knowledge is in the ‘well i can resent the liver but I can’t guarantee HIPEC can happen after’ va the ‘Well I’d do the HIPEC but all these things have to align, oh and they might find something In a liver ablation which means that’s it, not an option at all. So not my call” and then going to the lung person who says “well, the lungs aren’t the problem, we could try and clear those, but I can’t guarantee they’ll agree to HIPEC if I take the lung out”.

its a swirling mess of clinical decisions, not made with any coherency because it relies on different specialisms. Who all consider their ‘success‘ being removing the liver lesions to enable him to go for HIPEC. Not HIPEC being the success in itself.

 

[Florence Nightingale]

He's already found someone who is willing. Why do you have to be right about this? Can you not just accept that regardless of whether you think Rich should have the surgery or not, it is his body, life and choice on trying to achieve that? Yes the most likely scenario is he is going to die from this, even if he gets the surgery and yes on the very small chance he survives, it will no doubt come with a cost. But right now, he has life quality so if he wants to cling to even the tiniest chance of preserving that, bleeping fair play to him.

It is his life and choice however, at the moment he has a fair quality of life, but this operation could kill him especially if his body is weak or his quality of life might be non existent especially how Rich felt when his chemo before the one he’s on now made him want to give up and die. The operation is for the purpose to cure ? Give him more time ? Get rid of the cancer ? If he has it and is bed ridden and in the state Monique was in I really cannot see the point, just a slow painfully agonising death. Where do you stop and say no ?
I have an example a woman in her 60’s diagnosed with bowel cancer was fairly fit & healthy but for the cancer. She wanted to live so had an op to get rid of as much as possible whilst given a colostomy. The op was a big one the cancer worse than anticipated. The patient did not do well and was virtually unconscious and bed ridden for 10 days tubes bringing all the vile stuff into a bag her wound was bad and infected and as well as that she had chemo which was going on continuously. Long story short is she had fluids but not eating/drinking was so so ill and her Dr said we need to speak to your family this wasn’t the right thing we did for you. Was moved into a hospice and passed away very quickly. A sad ending.