Just awful … find it so hard to think about it ! I was in flipping pieces 
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@Deb5 me too 
terrible times - and it continues
The cards we’ve been dealt - really changes you as person
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Yep sure does. Its rotten isnt it
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My wife responded very well to her treatment initially. It pains me to say it, but I feel she was abandoned by the NHS. On her diagnosis of secondary breast cancer (bones and liver) in December 2021 she was immediately referred to palliative care with a possible referral to oncology at some point in the future (which never happened). They basically kept throwing pain killers at her which made her feel awful - nausea, loss of appetite, fatigue etc. She had already lost so much weight that she was just fading away with no apparent plan for treating the disease, only managing the symptoms, for the most part unsuccessfully.
Thankfully, we had BUPA cover through my employer and were given a very quick referral to an oncologist. He said from the outset that he couldn’t cure it, but could improve it. He certainly did!!! Steroids, radiotherapy, chemotherapy and immunotherapy programmes all started within days of her consultation and vast improvements evident within weeks. Appetite back, weight gained, mobility back and pain medication dramatically reduced - almost felt like normal life in fact. She ultimately lost the fight in July 2023 but I am convinced we gained an extra year of decent quality life thanks to the treatment.
I don’t want this to sound like an argument for private v NHS, nor do I wish it to come across as self-satisfied in any way, it was just our experience and a positive story about the difference treatment can make.
With the recent Covid enquiries in the news there has been a lot of talk about people who may have died unnecessarily due to locking down too late etc. Although I sympathise, obviously, I genuinely feel my wife would have been diagnosed sooner if it hadn’t been for lockdown. The number of delayed and postponed appointments to investigate her back pain or even just failure to get an appointment in the first place dragged on for about 8 months before she suffered a catastrophic vertebrae fracture which resulted in hospitalisation and ultimately the secondary BC diagnosis.
This is what makes me think “what if?” on a daily basis.
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Oh god that makes me feel so guilty … i shouldve gone private and it might have prolonged the inevitable a while … i was gonna you know ! Omg …
@DWJ I had the same experience with NHS
Initially after her diagnosis I couldn’t fault them, the booked her in for emergency surgery which was a multifaceted surgery due to the number of organs affected, which was successful. Had she not had that surgery within that week, she would’ve died as she was going septic from the necrosis.
Then she started chemo regimen and monoclonal anti body treatment. They did a CT scan around this time and found it had metastasised to her liver.
At that point the NHS all but washed their hands of her. Declined any further surgical options, stopped the monoclonal antibody treatment, unless we were going to pay privately, and gave her 12 months with current chemo
I took her to India to have surgical procedure on her liver and a new monoclonal anti body drug, that is world standard for her cancer, but not offered by NHS as it’s not approved
The drug and liver surgical option was too little too late. I’ve agonized over the timing and if I missed the window - guess you’ll never really know
The NHS is typical bloated social bureaucracy, where risk reward is used to determine people’s lives. If they deem the potential outcome doesn’t justify the cost to NHS, options are denied
You don’t get the option to pay in or subsidize the treatment or surgery yourself, it’s denied unless you go completely private and pay in full
If I’m at the mercy of the NHS MDT decisions over life and death and have no say, then refund or cancel my tax contributions I make to NHS and I’ll pay for full private medical in my own capacity where I at least have a say or know beforehand what I’m covered for
Effectively “paying” for a service through tax deductions to NHS but they have full autonomy over medical decisions
That’s socialism for you
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@Deb5 you don’t know beforehand if the NHS is going to provide best treatment or if going private is way to go - impossible to know beforehand - UK doesn’t have a competitive private health care market because of NHS
The massive op my partner had couldn’t have been done privately because it was multidisciplinary - required gynecological specialist surgeon, colorectal surgeon, peritoneal specialist and head surgeon
Wouldn’t have been able to coordinate that privately and would have been referred to NHS regardless
It is getting to point where you definitively know you’re not going to get best quality healthcare through NHS and are rolling the dice
There’s going to start being a spike in overseas travel specifically for quality affordable health care
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Yeh and i only had 6 weeks from terminal diagnosis to him passing … the oncologist said he wouldnt survive chemo because of his previous medical history i did ask for a second opinion from leeds but never got chance to do that either … he deteriorated pretty fast … my poor man i wasctpy8ng woth going private nut it all happened so fast … thinks thats why it hit a nerve for me that post ;( i wouldve sold everything i had if i couldve saved him… ;( x
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@MemoriesOfUs
I totally undersra d where your coming from. My wife had a ter inal illness, she often tried to talk to me about the inevitable. I too shut it down,it’s what men do. I couldn’t face being without her. She always said that if anything should happen there was a box in the cupboard. When she died I opened the box and inside was evertone of her wishes, oh how I wish I’d talked it over with her. As for other relationships I just can’t see it . Right now the hurt is just to raw .Take care
Les49
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MemoriesOfUs
From my recent experience that laat paragraph is very true. Its like rhrowing a dice Les49
@Deb5 I know - I would’ve sold my soul
6 weeks is so fast - I can’t see anything you did differently would have made a difference
Just a terrible disease that destroys the body
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I know … probably not and my brothers daughter is a dr and he spoke to her too about it … its so sad isnt it … i hate re- living those times as it was so frantic and honestly bloody frightening. Had to stay calm for him but inside i was in a mess … x
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@Les49 I also wish I had talked to her - many things I should’ve done beyond that, just to let her forget about the cancer, even for an afternoon or a weekend
Just not your mindset at the time
When I took her to A&E, this was before her diagnosis and she was in pain and trying to figure out what it was, the head consultant who looked at x-rays etc said he can’t find anything immediately life threatening, but something is wrong.
Said A&E is not for diagnostic medicine so can’t do further tests but that we need to carry on pushing to get to the bottom of it - which is fair enough, A&E is for emergencies and not diagnostic medicine.
But then he said to me, so I’m not going to book her in because it’s not immediately life threatening and Christ you don’t want to be booked in here for no reason
That kind of says it all, when head consultant is saying you don’t want to be in hospital
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@MemoriesOfUs
Totally understand where your coming from we spent many 12 hour nights in A+E trying to get treatment, and then a consultant sending her for her to be back within 12 hours . Where are the days gone where you were admitted for in depth treatment. No beds. I’m sure it made her feel unwanted by the system.
Les49
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Yeh very worrying … what a mess it all is !! My husband was gonna discharge himself … horrible places these hospitals are these days … do you know i smuggled him out of hospital one day anyway and brought him home for 4 hours ! Lol … he loved it … i remember us laughing cos we felt like naughty children … he did eventually get out … passed at home where he wanted to be
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Oh I’m so sorry @Deb5 . I didn’t meant to have you second guessing yourself, I really didn’t. I sincerely apologise if my post caused you any more angst or distress. The last thing any of us need is more “if only” scenarios. I would stress that although my wife’s disease was incurable, she didn’t have a terminal diagnosis at that point. I thought they were the same thing but apparently not. The doctor explained to us that she was incurable but not terminal. I’m surmising that if she had been then perhaps the BUPA route would not have been open to us. I have also beaten myself up about not chasing a private referral sooner but my wife’s initial care on the NHS back in 2014 when she had her primary diagnosis was excellent and we had no reason to think that it would be any different this time round. The most galling thing for me is that some of her “private” treatment - the radiotherapy, for instance - was done in a NHS facility and happened within a few days as opposed to weeks or months, yet wasn’t even given as an option via the normal NHS route.
I actually get quite angry when I see the NHS being lauded as saints everywhere in the media. The vast majority I met were wonderful people but I met several awful ones along the way, too.
Apologies again for any additional upset. Take care.
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Thats ok @DWJ i know you didnt mean to … and yeh they were gonna treat my husband on nhs and then last minute said no … it was such a shock !!! They make me really bloody mad tbh. Theyre so inefficient and slow and we all know this disease needs catching early as possible !! My poor husband had to suffer consequences of that and so do we now his family i used to work in NHS and its unrecognisable how it is now to when i worked there … even a decade ago !!! Truly 3rd world stuff … x
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@Deb5 at least you got to make him smile
I wanted my partner to discharge herself last time she was in, but she didn’t want to
They were just pumping her full of antibiotics for an infection, that was never there and never showed on any blood cultures and making her sicker and sicker
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Oh dear you had an awful time of it havent you and yeh that was a good day … 
but unbeknown to me very many bad ones to follow… and i think your partner was probably scared to go home … some people are …
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