My Wife and I (Our Story)

Sorry to hear this. My brother was diagnosed with this about 3yrs ago. He went through all of his treatment and is currently living with it. He takes drugs for it, has monthly tests, and while it'll never go away, he's still living OK.

Hope things get easier. It sounds like so much all at once.
 
Long tough read that, you both have my sincere sympathies and I wish you all the best in what is to come.

Don't really know what else to say, I fear that many stories like this will come back from GPs & the NHS due to COVID - horrible situation to be in.

At times since thinking back from June 2021, I always thought why would the NHS put all their eggs in one basket for Covid and appear to neglect everything else. As it is still happening a lot to this very day it seems.

This was what happened to my father before Covid was even a thing back in 2018. The GPs kept insisting painkillers or antibiotics. Yet he kept getting worse until collapsed/999 on January 2019 when his immune system turned on itself.

In my experience hospitals dismiss people as hypochondriacs and always assume you are wasting their time.

I wouldn't go to my local one ever again

That happened to me when I encountered a septic shock from a tooth infection. Tooth filling collapsed and cracked tooth. Face had all ballooned up. They thought I was faking it for attention when getting booked into A&E. I couldn't stop shaking on October 2020. It took several hours to recover from it, being paralysed on the floor for 30 minutes at one point with extreme cold sweats.

I had to be wheel-chaired into the hospital from the car. Sitting in a wheelchair looking like a crazy person twitching like mad in A&E.

I've got better things to do than fake a septic shock for attention from hospitals. Never having experienced such a thing like that before.
 
At times since thinking back from June 2021, I always thought why would the NHS put all their eggs in one basket for Covid and appear to neglect everything else. As it is still happening a lot to this very day it seems.

This was what happened to my father before Covid was even a thing back in 2018. The GPs kept insisting painkillers or antibiotics. Yet he kept getting worse until collapsed/999 on January 2019 when his immune system turned on itself.

It goes back even further than that when my father was diagnosed with bowl cancer it was initially shrugged off as piles. That was 2006. You have to question where a lot of these doctors actually got their qualifications from.

My niece who is of Lithuanian origin was fainting and got no help. Ended up going back to Lithuania and was diagnosed correctly with a heart condition that needed operation. That was circa 2015 in essentially a second world country.

To flip it on its coin when we had both our children the support and team in postnatal were nothing short of exceptional.

Apologies for going ot but the main NHS is a good thing but the GP surgery side of it really needs reforming big time as shown by the many posts on here.
 
Apologies for going ot but the main NHS is a good thing but the GP surgery side of it really needs reforming big time as shown by the many posts on here.

So true. The way the system is now I don't even know who my doctor is. I don't have one. You're just referred to your local surgery and you're more or less just a number to them. The last time I can remember my GP would have been 2002. I never see the same GP anytime I've to go there with my father. The nurses, yes. The GPs all seem to work part time and spread out across a large number of surgeries.

So many people I keep hearing it is massive problems trying to get their prescriptions before their last lot has ran out. Or it has already happened. Our surgery has an extremely bad reputation for that. Or they were lost and forgotten to be prepared. "Come back in 2 - 4 hours."
 
I'm so sorry to hear your story.

There are no real words that any of us can really say to help but I hope that your wife is as good as possible and that the best will happen.
 
wishing you and your family all the best,

it’s a shame because i have complete trust in the science of medicine and those who design such treatments. It’s just a shame that the whole process is hindered by humans “brushing it off” with a diagnosis based on assumption.
 
I'm sure writing everything down would have helped in some way, it's hard to vent when you're having to be the one in control of such a hard situation.

If you need a stranger to talk to, to vent to, drop me a message.
 
That is just terrible and my heart goes out to you, your wife and family. Sadly although the NHS has done a stellar job against Covid other services are going down the pan and GP surgeries seem to be so afraid of catching Covid they refuse to see patients.

We have gone through a similar experience with my wifes sister. Over a year ago she started complaining about a severe pain in her lower skull where the spine joins, like someone sticking a red hot poker in at accompanied with lot's of pressure. She phoned her GP surgery who would only give her a telephone consultation and the doctor prescribed painkillers and anti inflammatories.

A month on and there was no improvement, in fact she was worse so she phoned the GP surgery again and yet again could only get a telephone consultation. He gave her even stronger painkillers. Two weeks later and she was still worsening. She phoned the GP surgery and got the same response, telephone consultation and the strongest painkillers he could prescribe. By this time she was struggling to eat, could hardly move her head and couldn't sleep. She went to A&E in tears hoping to get a scan and to be examined for the first time. Fat chance. They reckoned she had a trapped nerve and to go back to her GP. What a load of crap but that's NHS Grampian for you. I was thinking by now that she had a disk collapsed as her symptoms were similar to mine when I had a disk collapse in my neck. She kept pushing for a scan but her GP who still hadn't even examined her wouldn't refer her and kept adding more and more pills.

March last year we had a family funeral and we picked up my sister in law on the way. We were shocked by how much weight she had lost. She could barely move and spent the day being pushed around in a wheelchair. We persuaded her to try A&E again but that got her nowhere and they referred her back to her GP.
April 24th last year she was found collapsed in the street one evening. The ambulance was called and she was taken to ARI (Aberdeen Royal Infirmary). They performed tests on her blood but she wasn't in a fit state for a scan. She was slipping in and out of consciousness and when she was awake she was highly confused. She had a scan a month later and they found a lump at the base of her brain and it couldn't be operated on. She spent several months in hospital yet they did no further investigation and only treated her for pain. She was transferred to a nursing home on December 14th.

On December 30th they did another scan and finally told us what was wrong. She had stage three brain cancer and there was no way to remove it due to it's size and position. Maybe if they actually did something sooner they could have. They started chemo which made her even worse and was constantly slipping in and out of consciousness. All this time we have not been allowed to see her as her selfish idiot sons took both visiting slots and wouldn't give one up so that my wife could see her sister. She had another scan at the end of January to find out how the cancer had progressed and found that she only had a matter of days, maybe a couple of weeks. They started reducing the chemo and Maggie eventually passed away on February 4th. We weren't allowed to see her since she first went into hospital back in April last year.

Her funeral was the 9th February and it was by far the worst funeral I have ever been to and she deserved far better. Her sons arranged it and they must have gone for the cheapest cremation package they could find because there was a 10 minute non-religious ceremony followed by everyone (15 people as that was the maximum allowed for the package they chose) following the coffin out to the hearst which then drove off. Apparently it would drive around the block and wait for everyone to go as the cremation wasn't until the middle of the next week. That left everyone in the car park briefly chatting before each made their way home. No wake, no flowers, nothing. It was awful. A couple of weeks later my wife phoned the son (her nephew) who was sorting Maggie's affairs out to ask for a keepsake or some photo's only to be told that everything was sold to pay for the funeral (we offered to pay) or binned and nothing was left. My wife got off the phone and burst into tears and it took ages for me to calm her down. What a terrible thing to do, they didn't even have the decency to ask if she would like anything. Her car alone would have more than covered the cost of the funeral. The best we sould manage was to copy Maggies Facebook photo's before they nuked that as well.

I can't help but feel that If her GP did the job he is paid to do that Maggie may still be with us and personally I think he should be struck off. Sadly this seems to be normal these days as we can't even get a appointment at our GP surgery either and they insist on telephone consultations. Even on the rare occassion you do get a appointment to see the nurse the reception staff makes things difficult. I had a appointment with the nurse two weeks ago and you have to press a call button under a video camera to speak with reception before they will let you in. I told them I had a appointment with the nurse and the receptionist said it was a telephone consultation to which I replied it's a bit difficult to have a blood sample taken over the phone!! She finally let me in, the waiting room was empty. I am still waiting for the results.
 
Really don't know what to say :( Just awful :(

As for hospitals, they really don't want to get to the root of any problem these days. Just fob you off.

Wishing for the best possible outcome for you.
 
Thanks for all the kind words everyone.

I'm absolutely saddened to read of similar experiences. In a strange way, I'm (glad? sad? angry? I don't really know the feeling) it wasn't just us having a hard time. It's a weird feeling to know we're not the only ones going through it, and having the issues, but its not a good thing. (no idea if I explained that well at all)

Scratch another one up for the District Nurses not attending again yesterday. That's probably the 4th or 5th time now, where they just haven't shown up with not so much as a phone call to let us know they can't make it. It's hard to stay positive and strong when even after 3 months have passed, things still seem to be going wrong.
 
In my experience hospitals dismiss people as hypochondriacs and always assume you are wasting their time.

I wouldn't go to my local one ever again

Sadly this.

Although my cousin is a doctor and she says that they take men, young and middle-aged coming into A&E very serious. I know from experience that I have to be on death's door or in mind-altering pain to even consider seeing a doctor. When I presented at A&E with kidney stones (unknown at the time), I was seen immediately and treated within 24 hours.
 
OP, very and genuinely sorry to hear this. That was a tough read, especially as a father myself.

Hope things work out and keep us up to date.
 
Very sorry to hear this, NHS is such a lottery depending where you are in the country, even more so with covid and areas where the numbers are high :(
 
So sorry to hear this

If I could give any advice, it's as others have said, it's like a lottery, be persistant with hospitals , they sometimes take while do scans, analysis, even the well known hospitals, and after even a surgery in a vulnerable place (even a sample surgery) don't let them discharge quickly and let them go home , they need further days post surgery monitoring. It can go the wrong way
 
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Really sorry to read this. With OP in mind, and delete this if inappropriate but people can register to be stem cell / marrow donors to help all manner of amazing people get better.

https://www.dkms.org.uk/get-involved

Is who I'm registered with, I can't think of a more amazing thing to do than save a life. I believe they share a database amongst other donor databases as well for max coverage.
 
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