Update: What's Been Happening
27 November 2016
I have not updated for a while. A lot has gone on and not very much has gone on.
As noted in my last blog, I underwent a lot of tests at the Christies Hospital. I was referred back to the eye hospital to get a new biopsy done.
So what we do know is that I have a large tumour. I was first told it started in my brain and went to the eye and sinus from there - I was told the nerves in the tumour show it started in the brain. The Christies thought it started in my eye. It is connected into my brain (on the right side) but the biggest part is in the eye socket. Certainly the largest pain came from when the tumour was shrinking it was literally ripping things in my brain and really, really f*cking hurt. So it is a tumour, it just swings between three parts of my head (sinus, eye & brain).
So, I was referred back to the eye hospital to get new biopsy done. This is when hell on earth started.
On the first appointment I was told that they did not know I had been referred back to them, please could I come back in a week. I came back in a week and was told that they did not want to do radiation just yet because it would likely break my eye. The tumour had shrunk massively from the drug I was on, so they would look to move me to another drug to shrink it fully, and finish off the last of the cells using radiation.
I was told to come back on 20 October 2016 and a chap would be there who would be prescribing the new drugs.
I attended on 20 October 2016. I was told no appointment had been made for me. I remonstrated, given how important this was. I was told to take a seat and someone would call me. I read a book. I looked up two and a half hours later to realise everyone had gone home. I was sat in an empty clinic waiting room - no one else was there. Reception was closed - gone home. I felt absolutely humiliated. There was no appointment, and the receptionist did not tell anyone I was there.
I went home expecting that a new appointment would be made. After-all, the chap was attending that appointment to prescribe this new drug - so someone would figure out that an appointment had been missed.
A week later I had a massive problem with my leg again. Third time this has happened. I realised that it is probably a blood clot, because my leg had swollen up massively, was bright red and I could barely walk on it (the pain was unbelievable) and I could not straighten out my leg, making walking almost impossible. The pain was behind the knee at the top of the leg on the back. Every medical site made it clear that was likely a blood clot. I immediately stopped taking the drug I was on, as one of the significant side effects of it was blood clots. That drug probably caused the blood clots.
Nothing happened. I had been lost and had no way of getting back in the system. I tried calling my surgeon's secretary, but she never answered the phone. I had no one else to ask.
The tumour started to grow back, as I was off the drugs that had shrunk it. I have now been four months since it was diagnosed, but we were still waiting to fix the main treatment - allegedly this new drug they were talking about.
On 21 November 2016 (a full month after my non-appointment) I got a call from the Christies. They were very apologetic, but the scans I had in early/mid September showed that my lungs had blood clots in them. Unfortunately, radiology had simply not done a report on the CT scan. Suddenly someone had remembered to do it and emailed it to the Christies (who had ordered the scan). He was very apologetic, but please could I come back to the Christies to get some heparin (blood thinner). he sent the prescription to pharmacy, where I picked it up from. I was to inject 15,000 microgrammes a day. I must tell my surgeon when I see him. I explained that I had fallen out of the appointment system. I picked up the Fragmin 0.6ml of 15,000 microgramme single self-dose injections. I have two months' worth.
In August when all of this started I made a complaint to my GP. I was told by my GP that the huge swelling on my eye was hay fever. As a consequence, I left it. The antihistamine weren't working, but I kept putting off going to see my GP because I was busy and it was just hey fever (in one bloody eye - I don't think so). So, when I knew it was a great ruddy tumour and not hey fever I write a very polite letter asking them to get another more senior GP to look at what happened and tell me whether that was a mistake, or whether any GP could be unlikely to make that mistake. The trust wrote to me to say they would be in touch by 19 October 2016. Then they wrote to say they would give me a final response by 9 November 2016. Past that, nothing. As at 27 November 2016 I have nothing from them - not even an apology for missing both dates that they promised to respond. So, I wrote them a letter telling them that I am passing it to the GMC. Their response? A letter acknowledging my complaint - they would investigate and get back to me. So, four months after it first happened, my GP practice had literally nothing to say about a GP telling me a huge tumour in my head was just hey-fever. It took my optician less than 10 days to investigate and produce a full report showing that when I had my eyes tested in September 2015 there was no indication of the tumour. My GP cannot respond. I am livid.
In September 2016 I had a CT scan. The doctor who ordered it did not follow up asking the radiologists for a report. My surgeon, when reviewing the CT scan (I know, because I saw the CT scan and could see how much the tumour had shrunk) also did not ask for the report, nor did he notice the report was missing. They took two full months to realise that someone in radiology ought to tell my medical team that my lungs have blood clots in them.
I was incandescent with rage - my GP is useless, my hospital is useless and I am f*cking tired of being referred to yet another hospital - I had four in three months (eye hospital > Manchester Royal Infirmary > Christie's > Eye Hospital).
So, on 21 November 2016 I made a complaint to the patient liaison team, including a complaint that I had slipped out of their computer system. I was incandescent with rage over this. I was furious I had slipped through the net. I was very very angry that no one had realised there was no radiologists report with the CT scan they were all looking at. And I was f*cking furious that the radiologists had over-looked telling anyone that I had blood clots in my lungs for two months. Now, don't forget that I am also certain I have blood clots in my left leg. I had been unable to tell them because I could not get an appointment with them. I made my feelings very clear. I told them at the very least they must acknowledge the complaint within 24 hours because, frankly, I expected them to lose the complaint.
Did they even so much as acknowledge the complaint? No, they ignored it. I was told by telephone that they did not know when someone could call me back - they were just too busy.
So, on 23 November I emailed them and told them that I thought the entire NHS trust was a despicable shambles. I was livid. I told them they could shove it up their arses, I want nothing to do with the doctors or the patient liaison team. They literally do not care. They literally have ignored me for five weeks and not noticed. I could have died from blood clots travelling round my body and not one single person gave a shit about it.
I was even angrier that on 21 November 2016 (when I got home) I found a letter from my surgeon to the chap who was meant to be at the appointment that did not happen on 20 October 2016 (I was, as usual, CC'd into the letter). My surgeon had written to him to invite him to attend a meeting with me. The letter was dictated on 9 October 2016, but was not typed up until 19 November 2016. So even if I had had an appointment on 20 October, they would not have produced this miracle drug because they had not even written to the guy.
I cannot tell you how angry I was by this point. Fury is an understatement. I do not think I have ever been this angry in my life. They are literally dicing with my life now.
So, on Friday 24 November when the patient liaison team finally called me I told them to fuck off. Sorry to be blunt. Four months and I have had nothing but a merry go round. They are disorganised. They are a shambles. And most of all, they are too busy to give a shit. The patient liaison team is so busy that they cannot even respond to complaints, and only responded when they did because I sent in an absolutely blistering, screaming rage of an email. Otherr-wise I expect I would not have heard from them.
I am exhausted by it all. I have had enough of them and I have had enough of the pain as this bloody thing now starts growing again. I keep telling everyone it is all ok and things will be ok. I don't have the heart to tell people what an absolute shambles the NHS is. If they are doing this to me, what the hell are they doing to people who do not have life threatening illnesses? How on earth can this shambles happen? How can someone just slip out of their systems with no way of connecting and telling them that something is wrong? How on earth is the complaints' process so busted that they cannot even see complaints urgently that deal with life threatening situations like going two months with blood clots in my lungs that lay unnoticed because the radiology team are too busy to do reports and the two teams over-seeing my treatment failed to notice that no radiological report was sent across with the CT Scan that they were all working from?
I am livid. I am angry. I am upset. I want absolutely nothing to do with them. I will have to - the bloody thing is growing again - but frankly I want nothing to do with them. I want nothing to do with my GP practice who cannot even respond to serious complaints.
People have been asking how things have gone. I have said it has been going great - but it hasn't. I haven't seen anyone since 9 October because their systems failed. The only contact being when the Christies called to say I have blood clots on my lungs - though of course I have no one to discuss this with. The first drugs did actually work and shrank the tumour massively - but that was a drug I was not allowed to stay on medium term because of the dangerous side effects - which clearly created the blood clots. So I have had to stop taking it - though I had no one to talk this over with because their systems failed. I have no one to tell that I have a blood clot in my leg. No one to talk to about the blood clots in my lungs. No follow up scans to see where the blood clots are now - or how many of them there are now. I am ashamed I have been telling everyone everything is ok because I have been too embarrassed to say that the system has completely failed and I no longer am being seen by the hospital. How on earth do I explain how this is even possible? Labour & the Conservatives have shafted our NHS so badly that even people with huge tumours growing in their heads get lost in a system - imagine what is happening in our mental health hospitals where the budget cuts have been worse? Imagine what will happen now that the Greater Manchester mayor will pick up the NHS budgets and has to cut it in half? It is currently £4 billion and they have to cut that. The NHS has broken and cannot work any more and I have just been too exhausted and embarrassed to tell anyone.
I have a tumour that is now started to crush my eye again and to do whatever it is doing to my brain. It hurts - it hurts a lot. The pain is constant. Slowly my eye is moving out of focus as the tumour pushes it out of the eye socket again. When it gets big enough I will re-start the drug that reduced it (the one that caused the blood clots). I have no confidence in any of the medics or hospitals - I really do not ever want to see any of them again. And despite how warm and wonderful people are being, I feel utterly alone.
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