Jewish Health

Stewart: And then about a week or so later, eventually they decide that I can go back on the ward. So I go back on the ward, and the nurse is there who actually sent me down to Intensive Care. She was surprised to see me, she didn’t think I was coming back. She told me. Within a couple of days, they are wheeling me out of the ward, which was a ward of five beds into a private room. I said, “Well what’s happening now?” “You’ve caught MRSA.”

 

Marilyn: And that was to boot.

 

Stewart: So I now spend five or six days on my own in this ward.

 

Marilyn: And he’s not getting any better.

 

Stewart: And I’m still not getting any better.

 

Marilyn: And he’s losing more weight.

 

Stewart: I’m losing weight. I’m not going to the toilet as I should be going. I’m still being fed through a tube, and then I think one day, Marilyn had – something came to her.

 

Marilyn: I was standing outside and I really thought we weren’t going to bring him home. And I don’t know something just clicked in my, back of my mind. I was desperate. I’d looked everywhere. I’d spoken to people. I’m not unintelligent. There was something not right. Something had been missed.

 

Then in 2001 after a series of investigations to try and sort out the Crohn's Disease problem which continued to rear its ugly head again, and this involved having a radioactive breath test, which was a bit dodgy, and breathing into these tubes for twenty four hours and they were able to determine that there were a series of very nasty bacteria in my gut. And the way to deal with this nasty material was to have a six week course of different antibiotics. 

 

Now I persevered with this over the summer holidays, what an idiot I was, I should have done it in term time, because it was just awful. It was an awful summer holiday because it was just like diarrhoea only magnified by five or six times, because these antibiotics were going through me and washing me out completely.

 

Anyway at the end of the course, things did actually improve dramatically and I felt really, really well. And I thought whey this has done the trick. And then a couple of months later I started bleeding from the back passage and bleeding and bleeding and I went back to the consultant and unfortunately I didn’t see the consultant. I saw a junior doctor. And junior doctor said, “Oh well, we’ll do a blood test.” And the bleeding continued for another couple of months I think.

 

In the end urged on by doctors I knew I made an appointment to see the consultant and I insisted on seeing the consultant this time. And as soon as he heard what was happening, he arranged for me to have a colonoscopy and from that it was discovered that I had a small cancer in my lower rectum. 

 

And I said, “Well this is amazing. I was told years ago by my GP that because I had Crohn's Disease it meant that I was unlikely ever to have cancer of the bowel.” And the reply I got was that they’d changed their minds and now it seems that if you Crohn's Disease you’ve actually more likely to get bowel cancer. So that was a bit of a blow.

 

And, because the cancer appeared in the lower rectum, it mean that the operation I would have for this would be pretty drastic and involved the whole of the lower part of my bowel being removed everything my back passage disappearing completely, it was sewn up and being fitted with a colostomy. 

 

This was a pretty awful thing to contemplate and I said, “What would happen if I didn’t bother to have the operation?” And the surgeon just shrugged his shoulders. I mean he could have been a little more eloquent, but I suppose that said it all really.

 

Well I went into hospital to have some surgery. I was having a repair job done and I had the surgery, and ten days later I was to have the sutures removed, and just before that I started to bleed. At the time they just tried to stop the bleeding, and I went up and had sutures removed. And the bleeding just continued. They couldn’t stop it. So after a day or so I was taken into intensive care, and then I was whisked back up into the theatre to have another repair to stop the bleeding. And I was re-sutured, brought down, everything was fine, kept under observation and I started to bleed again. This was another week or so after and I was taken up to surgery again, and re-sutured again. I came down and a week later started to bleed again. 

 

I was given blood transfusions at that stage. I had blood going in. I don’t know how many pints of blood they put into me, but eventually, my original physician who was working in the hospital bumped into my husband and he said, “Have they checked all the factors?” And he said, “Well I’ll find out.” He mentioned it to the surgeon and eventually the Head of Haematology came in and he said, “I’m going to take you back up and check again.” So I went back up. I was waiting on the trolley, waiting to go into surgery again, and my surgeon came rushing into me. I was heavily sedated, and he said to me, “Where were you born?” I said, “I was born in England.” And he said, “Well where were your parents born?” I thought, this is crazy, what is he asking me questions like this for? So, the next minute, I said, “Well my father actually was born in Romania, my mother was born in Scotland and…” “Well where were her parents born?” So I said, “Well my mother’s parents were from Poland originally. Of course my father was born in Romania, but my mother’s parents were born in Poland.” And he said, “That’s it. We’ve got it.” 

 

My mother was diagnosed with breast cancer in, in January 1992, and after she was diagnosed I went to my GP and said, “Could I have a mammogram?” And he said, “No. You’re too young.” Because under the National Health, they only grant them sort of every three years once you get to the age of 50 which actually means that the first time you could be called you could be nearly 53, if the records are up to date. I was called at 53!

 

Anyway I suppose I should have made a fuss, but I didn’t. And I just thought, well I will pay and I will go to the Well Woman Clinic and I’ll have a, the check up, and I’ll have a mammogram.

 

Anyway as a result of that I did go. I subsequently then went to study in Israel for a year (1992-1993) and registered with a student health service and had a totally different experience. When I just had to fill in a form about my health situation… my health status and family, family background, the minute they saw that my mother had been diagnosed with breast cancer, they said, “Oh well, we’ll send you for a mammogram.” 

 

And they sent me straight away for a mammogram as just part of preventative things. And at that mammogram which was like just a year after my first one in UK, they actually found something that they thought might need further looking at, so they sent me, and I had... it was examined and I had fine needle aspiration and an ultrasound and they said, it was actually just thickening, it was just sort of like a cyst. Nothing necessary to worry about, but it should be watched. So they would give me a letter for when I returned.

 

So once I returned in Sept 1993, I had this letter, that I should be followed up, and because, at that stage I had private health insurance through my work, I decided that I would take, use that opportunity and go to a doctor that was recommended, and have it checked out.

 

So after that I actually was able to have annual check-ups and twice things have been found, but then they were just cysts. So in 2000 when I got my little card from [doctor], who was the physician that it was time for me to come for my check, it was actually the week before I was having exams. I was studying part time and I was doing an MA in Holocaust Studies at UCL and I thought, you know I could put it off until after the exams. And I said that’s just a check up, I might as well just go. I can go on the tube and…

 

Anyway I went. And it was already Stage II. So if I hadn’t actually been sort of taking initiative myself, I think by the time it would have been found, it could have been too late, you know. I felt sort of in a sense, in that sense, probably a big let down by the health service. I mean I maybe should have pushed, but on the other hand, you shouldn’t have to push to get good preventative care. 

 

Okay. So my childhood was dogged by my father’s mantra, which was “Have your bowels been opened?” [laughs] And I suppose I became a bit paranoid about that, so I have a strong suspicion that my father’s paranoia about having one’s bowels open transferred to me. And, whether that affected my subsequent history I don’t know, but certainly as a child I suffered from stomach pains quite a lot, and this got progressively worse when I was at the secondary school, which I didn’t like. In fact I hated secondary school.

 

So any excuse to have the day off was something I took very easily. Whether it was bunking off or just being genuinely ill I’m not sure, but that’s what I did. But it got worse and worse, so that even though I managed to get into sixth form I didn’t stay for the full course. I left in my first year, not exactly ignominiously but it was something I wasn’t particularly proud of.

 

I managed to get a job at Unilever in an office and they said, “As long as you’re not ill or anything, you’re okay.” But I was constantly being ill with diarrhoea and stomach pains. So I had been under [hospital], which is quite a famous hospital for gastrointestinal problems. But they never seemed to be able to pinpoint what my problem was. And eventually they, kind of washed their hands of me, and their parting shot, or the parting shot of one of the doctors as I was leaving from my examination was, “Oh by the way, don’t drink so much.” And I didn’t have a clue what he meant by this, whether he meant don’t drink too much alcohol, which I didn’t anyway or just don’t drink fluids. But that was all he’d left me with, you know. Off you go into the great wild world and don’t drink too much. 

 

So, nothing improved, whether I drank or not anyway. So eventually my sister, [sister], who was a nurse at the time, suggested I go to a private doctor. At that time I thought ‘wow a private doctor that’s something like £5 an hour’, which was almost two weeks of my then wage. But I did go and I saw a [doctor], who interviewed me, examined me, and arranged for me to have an X-ray on the NHS and he called me back after the X-ray was done and completed and said, “You’ve got Crohn's Disease.” Just like that, and I’d been going to [hospital] for I don’t know how many months or years even, and they’d never been able to diagnose anything, but as soon as I went privately, I was diagnosed with Crohn's Disease.