My story – Part Three Final

2015-05-11

It took about two weeks for us to receive a letter from the new hospital, 25 miles away. I got an appointment with the loveliest consultant in the world, Dr Razek.
He was an older man with a kind face, a bit like a granddad. I remember his smile. He told me not to panic. He said “I do this every day, and I will do my best to help you, it’s my job!”

It was like a miracle, for a minute there I dared to believe that my luck was changing. He said he couldn’t guarantee that it would work, but he drew a picture of what he was going to do, he explained it all. He shook our hands and he smiled again.

We went home a little more hopeful. All we had to do was wait for a date. They said it could take up to six weeks, but that if a spot came up, they would call me. I think I was a little more relaxed for a while. Amazing what a little effort does for a person. He gave me ten minutes and hope; it was all I needed to feel a bit better.
The nurse at the hospital was lovely and she said I could ring her if I had any questions or to check up on dates, so after a couple months of waiting I rang the hospital to ask.

It turned out that five days after meeting with Dr Razek, he had a huge heart attack and there was nothing they could do, he passed away. I was once again devastated, for him and his family and of course for me. He had been my only hope in this big fat mess.
The nurse was also really upset, she said they all were. It was so sudden and they spoke so highly of him, he was one of these people who really cared about what he did. They made a plaque for him by his office, I see it when I go to visit my new consultant.

She reassured me that they had hired a replacement, and that he too was lovely.
We met with the new consultant a couple of weeks later and talked about my operation. He said he would do exactly what Dr Razek had agreed, he said he would try to help me. I was grateful, he is a nice guy and he also seemed interested in helping. All I needed was a date. What I learnt from Dr Razek is that there is always hope and I should not give up.

A few weeks after my meeting with the new consultant, I had a pre-operation assessment. I got a call the next day, I remember it was my birthday. My platelets were low and so they couldn’t operate yet. I had to have more blood tests and until they could be sure that I would be safe for my operation, they couldn’t arrange it.
I had blood test after blood test and my platelets kept dropping. I was referred to the haematology department in the new hospital, where I met various consultants. Once again it was not helpful, none of them could tell me what was wrong.

After a few more weeks of faffing around, they referred me to London, St Thomas’s hospital.
It took six more months to get seen. Finally I was diagnosed with a systemic lupus, mainly in my joints. It causes me pain, swelling, arthritis, fatigue and low energy. To be honest by then I think I was just fed up with being messed around, these people tire me.

It’s not brilliant, but I take medication daily which has subdued some of the worse symptoms of my lupus and it keeps some kind of control over it. I am also under the care of the Lupus Clinic in London. They specialise in pregnancies, or so they keep telling me. When I have the money for IVF they will help me. A lot of women with lupus have babies so there is no reason why I couldn’t try myself.

Saying no to me is like giving me a challenge.

The London clinic eventually wrote to the hospital to tell them that it was ok for them to operate. My platelets have varied all my life (I did tell them this at the beginning and my GP knew as well but never tested me). They had gone back up, but I just had to give myself injections after my operation to make sure I didn’t get blood clots.

The operation day finally came. My mum came with me. We were all full of hope, of course. At last, the surgeon explained he was hoping to just clear my tube and even have a go at fixing the other one.
I woke up from the op and my mum was there again. I was so anxious to see my surgeon, he is actually a lovely guy and I knew he had my best interest at heart. He came over and I could see it in his face, it didn’t work. In fact, because of the delay in my care my tube had got so bad it was enormous and it could have burst at any time. He told me he wasn’t surprised at the pain I’d had, and wondered how I had managed to handle it for so long.
My other tube couldn’t be fixed either, and in fact it wasn’t looking good. I went home and completely broke down. I had no more hope, no money and no support with what to do next.

My poor Mum and Shaun didn’t know what to do or say to reassure me.

All I felt was that I didn’t want to live anymore. I spent weeks staring at the walls and crying. I did try to fight the hospital and the GP with a team of lawyers. Despite me not agreeing with what they wanted to argue, they went ahead with it anyway and after two years of fighting, they lost my case.
The GP admitted liability, but the lawyers argued that had I been treated in 2010 I could have had IVF. The GP just replied that I wouldn’t have been eligible for it because I was single at the time.

Single people don’t get IVF on the NHS. Apparently, I’ve been told that a fallopian tube isn’t worth a thousand pounds in court.

Never mind the fact that I haven’t been able to hold a job down for the last three years and that I spend days not leaving the house. Never mind that they ruined my chances of having a child naturally. Never mind the trauma they have caused with their ignorance and lies. They laughed at me and gave me nothing. Sometimes I wish I would bump into my old GP somewhere, make a scene. I don’t know, just tell him what he’s done to me. And the hospital, I wish I could tell them too.

The lawyers didn’t have the guts to go against the hospital, so that’s that. I’ve run out of time, so even with better lawyers, it’s too late.

Despite my right tube being out, I was still having pains, so I asked my consultant. After another painful scan, he told me he had to operate because the infection had spread to the other tube. So just over a year ago, I had my last operation.
It’s all over, I am discharged and off their hands. As I said, unless we win the lottery we’re not getting anywhere fast.

I suppose if I was ten years younger I wouldn’t feel so bad, I could try to work and save like mad, but I don’t have long left and this kind of money takes years to save. Who has £7000 for one go of IVF to hand! Never mind three or four goes! There are so many people online asking for donations for one thing or another, we’re all in the same boat.

I think that these private clinics are just money making machines, they exploit people’s misery by charging them thousands of pounds for a chance to do something that most people take for granted. What’s the point of progress if you can’t access it?

Shaun and I have been to open days at our local private IVF clinic. They were very welcoming and it was informative, but once they hear that you don’t yet have the money, they soon move on to the people who do.

In my head I have as much chances as anyone else for IVF to be successful, but already on here I’ve met a few people who are on their third, fourth or fifth go… and they had the first two or three on the NHS!
Clinics themselves tell you that it takes on average three goes to be successful.
We’re certainly not rich and we definitely can’t get into debt. No bank will lend us the money to have IVF, it’s not an option for us.

So here we are. I’m sorry it’s a long story, as they say.

“Made by Steffie B” is going really well considering I make crochet Cuties. Everyone has been amazing, I am trying to help myself and right now it’s the best I can do. Trust me, I work really really hard at this.

It’s tough to motivate yourself when you are depressed but I try. Shaun encourages me. We have a little blackboard in the lounge and we add the totals up every time a Cutie gets adopted. He praises me, I have a cry and I feel better, I feel hopeful and then I’m down again.

It’s a daily struggle and because I’ve been low in the last few weeks I haven’t been able to write much, or so I thought. But what I couldn’t do was write pretending that everything was ok because it isn’t.

I do mean what I say in my previous blogs and I don’t want to be miserable, but I suppose I will have to write as I am if I’m going to do it regularly. Be honest. It may also help me move forward.

Most days start with great difficulty, but once I get going and I start talking to you all, or posting the Cuties and getting good feedback and support, I feel better. On the quieter days I take it personally and feel like no-one cares. I know it’s unreasonable.

When it’s quiet at night, the nightmare comes to me over and over again. I struggle to get to sleep, so Shaun, bless him, talks to me. He stays up with me reassuring me that I am doing well and that we’ll make it ok together. He reminds me of the all brilliant crazy friends I’ve made online and how they support me, and so I go on another day.

Thank you
Steffie x

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