Oh deary me....

I'm upset....

On Thursday I had to go into Guy's hospital in London to have the Port-a-cath removed from my chest. This should have been a cool time for me, I thought I'd be almost excited to be having it taken out as it really marks the end of my breast cancer treatment FOREVER!!! But no... have you not learned by now that stuff doesn't always go smoothly for me!

For those of you wondering what the heck a port-a-cath is; it's a device that some cancer patients have fitted under their skin somewhere about their person (mine was in my chest but I believe you can have them put in the top of the arm for instance) They are brilliant devices because they save the 'long suffering' patient (and Doctors and Nurses) from having to go through all the trauma of having to find a decent vein to use when receiving treatment. I had mine in for when I was receiving Herceptin every three weeks because the veins in my arm had been ruined by Chemotherapy. The device sat in my chest and linked directly into my blood stream and was visible under my skin so there was never any problem trying to find it! (well there's nothing else there in the chest area to distract anyone)

It's always really difficult for me to even enter the Hedley Atkins Unit at Guy's hospital in London because Mum and I spent a lot of the time there just before she died in 2003, but that's where I usually have to go if there's any reason for me to be hospitalized because of the cancer. Most of the worst memories of my life were made in that ward. But, despite that, when I was first diagnosed with breast cancer myself I didn't need to think about which hospital to go to for too long, as, at the time, Guy's was one of the leaders in the country and had an excellent reputation. I would have to have been stupid not to go there. I kind of knew most of the staff (didn't think for one moment they'd remember me, but they did) they were leaders in research, always seemed to be involved with one drug trial or another (I think I've been involved with about 3 research projects over the course of my treatment) and it just seemed 'right' for me to go there. In fact whenever I heard of women with breast cancer in my area going to a more local hospital I really couldn't understand why they would want to.

February 7th 2005- the day before my double mastectomy, Dad and I walked up the corridor of the HAU and I was shaking and in tears. I think Dad presumed it was because of the operation the next day, but it was because of the memories that had come flooding back about mum; remembering the way she used to shuffle to the loo's, when she was still able, or to the bathrooms so I could wash her, and how she looked tiny in the beds they put her in. At that point in 2003 we'd been associated with Guys for 14 years since her original diagnosis and some of the same staff were still there from 1989. They understood my feelings about my mum and the loss of her because they saw me at her bedside everyday while she was dying. They recognised me from '92 when I arrived with a tiny Sam strapped to my chest and spent all day at her bedside even though Sam was only 5 days old (it's ironic that what made that easier to take Sam with me was the fact I was breast feeding him! I don't know how I'd have managed otherwise) So they understood that I wouldn't even be able to look down into that wing of the ward after she had died, and that I never would in my present situation. They were so kind and really helped me, often sitting on my bed in the day's after my mastectomies to make sure I was ok. Ok so none of this made it a truly pleasant experience for me but definitely made it easier to cope with. Still I was very relieved to be going home in record time 5 days after my operation in 2005.

Since that time I've been in to stay a couple of times with no problems really, when I had the port-a-cath put in place for example. But this time, with my first step down the long corridor of the ward, I knew something was different, I didn't recognise any of the staff for a start off, and by the time I got down to the nurses station it was confirmed as I noticed with shock that there were men on the ward (now while men do unfortunately get breast cancer too, it's very rare and I'm sure they wouldn't have stayed on the same ward as all the women patients) I managed to put it to the back of my mind though and told the ward clerk I was there and waited to be shown to my bed......

That's when my personal nightmare started, to cut a long story short the nurse showed me to a bed that mum had occupied for some of her final 7 months in the wing I'd been promised I would never have to face, and I showed myself up completely by just bursting into tears and running out of the ward. To be fair the staff were lovely to me (once I'd managed to catch my breath and explain) and put Dad and I into a small waiting area while they tried to sort something else out for me. But unfortunately they must have got the wrong end of the stick because the next bed they tried to show me to was virtually in the same place, just a few beds down, and I had to explain that over those last few precious months of my Mum's life she had spent time in most of the beds in that part of the ward, on and off, so it wasn't actually the bed position I had a problem with but the whole section of ward in general. By this time I was almost inconsolable. But there was worse to come...

It turned out that the Hedley Atkins Unit was no longer a breast unit. There wasn't even a seperate area for terminal breast cancer patients anymore. On the section where Mum had been, 4 years earlier, there were now women with all sorts of cancer. Even more worrying was the fact that the wing where I'd seen the male patients was now a mens cancer ward and there didn't seem to be a specialist breast surgery wing anymore. On further investigation it appears that the staff on the old 'HAU' had mostly left Guy's in disgust because they really hadn't been consulted about the changes and were only given 2 weeks notice of the closure. Worse still was that, as far as any of the staff knew, there had been no patient consultation. According to one member of staff in the ward where I ended up, now if you needed a mastectomy you would be seen in a general surgical ward! Totally totally unacceptable, and I have to say if I were diagnosed with my breast cancer now I wouldn't want to be treated at Guy's. I love and respect my consultant and he's still there I understand, so will continue to visit out patients though. I'm sure he's as upset about the whole thing as I am.

A couple of members of staff (from the other ward where I eventually ended up) encouraged me to campaign and ask questions about all this and see what I can find out, after they heard about the Herceptin campaign. So that's what I'm going to be doing. All this has come as a huge shock to me and I can't bear the thought of other women newly diagnosed with breast cancer, or even just frightened of the possibility, being denied a specialist unit to go to in this part of London. In a weird way it was always a comfort to me and my Mum to know that the Hedley Atkins Unit was there (and still being used for what it was intended for by the original benefactor's)

I'm sure I'll be writing about this again in the not too distant future as I'm learning all the time that this kind of thing isn't as unusual as you might hope in this country, surely this can't be right....

Sorry for rambling...

Jen x