Editors note: This is Zena's story and is the eighth in the "Cancer - Your Story" series. Zena and myself met on a parenting forum a few years ago and immediately had a connection. The lung condition that Zena talks about is similar to the one that my mum had and I know exactly how she feels when she is frustrated with that. I could not believe how cruel life could be when I heard what happened next...
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This is my story.
My name is Zena and I already had several conditions which include a serious lung disease called Pulmonary Fibrosis. I had been on the transplant list waiting for a new set of lungs when all this happened.
In November 2008 I noticed a small lump on my perineum. To be honest it was so small that I thought that I should keep an eye on that and then promptly forgot about it.
By march 2009 it had grown to the size of a split pea and I decided that I should see a doctor. The wait for a non-urgent appointment at that time was a couple of weeks. I thought it was going to be a cyst or something, especially since in the two weeks I waited to see the doc it grew from the size of a split pea to the size of the end of my little finger.
I got to the docs and assumed the position. The first in a very large amount of times that I have since assumed the position, but I suppose we have to start somewhere. The doc took one look and told me that she thought it was a wart!!! but that it was too large for her to deal with and she'll make an appointment for me to see a gynea surgeon to have it removed.
As you might imagine, I thought that I had a genital wart. Where the fuck had that come from? Accusations flew from me to my partner. He in his turn threw accusations at me. It was not a happy time. Finally we were told that as I have a wart on my finger that I've had for years, I probably gave it to myself.
It took 3 months for the appointment to see the surgeon and in that time the lump (I refused to think of it as a wart - now I wish it bloody was one!) grew from the size of the top of my little finger to the size of my thumb. It was very painful to sit down and to walk. Sex had stopped, there was a bloody great lump in the way. I had also formed an abcess down there as the lump had blocked the batholin gland. Very painful, very embarrassing. The surgeon (gynea surgeons should NOT be good looking men - it's very embarrassing) agreed that the lump needs to be removed and put me on antibiotics for the abcess and organised for day surgery. 4 weeks later I was to see the surgeon again to see how the lump was doing. By this time the abcess was huge and I was in constant agony. A different gynea surgeon had a look and I was hospitalised immediately to deal with the infection and to have the lump removed at the earliest possible convenience.
I spent a week in hospital on intravenous antibiotics and met lots of the surgery team, including the aneasthatist, who didn't want to touch me with a barge pole as I have a serious lung condition which means that a general anaesthetic was out of the question.
So, while this good looking surgeon was going to remove a lump from right between my legs, I was going to be AWAKE!!!!!! Wide awake, not even sedated. I was duly stitched up and sent back to the ward. Spinal anaesthetic is weird and I should have had a catheter inserted as I was in pain from wanting to wee but the bladder still being paralysed from the spinal. When they finally did bring me a bed pan, there was so much there that I missed.
I had a message from the surgeon the next day that the lump had been removed, they don't expect 'anything sinister' but have sent the lump away for testing as a matter of course. I was sent home, told I didn't need anti biotics as I'd had them for the week before. I would be sent a letter with my follow up appointment. This was at the end of July.
My follow up appointment turned up for sometime in december! DECEMBER?????? Sorry, but a post surgical appointment should be within 4 weeks of the surgery surely? I'd already had the district nurse round as I'd pulled the stitches with a large coughing fit. So I rang up to complain and said it wasn't good enough. They altered it to november and as far as I was concerned, that still wasn't good enough.
Then I got a letter saying it was for the end of august. This is better I thought. I also thought it was as a result of my nagging.
I'd been on holiday in the mean time and I was aware that the abcess had not only come back, but it had brought a friend. Also I was quite sure that the lump was back. Great!
So back I go, ready to assume the position. I get called round by a nurse who in retrospect was being particularly kind. I sit for a little while with the nurse who was chatting about 'stuff' asking general questions about my daughter, was it easy to get to hospital etc. Didn't think much except that it was strange to see a nurse with that sort of time on her hands.
I get called into the surgeons room where he delivers the blow. I had just sat down when he said he has the results of the lump and that it shows considerable malignant changes. I remember thinking to myself 'shut your mouth shut your mouth shut your mouth' Eventually I got my jaw working enough to ask him what he meant.
'You have cancer of the vulva'
I don't really remember much more of the appointment. I was on my own as I wasn't expecting anything major. I remember saying that the abcesses had come back and I was again admitted into hospital. The gynea oncology nurse was on holiday, so for the week that I was in hospital I didn't have any specialist support. The nurses that were there were all very kind and supportive, but none of them could answer specifics. I had a side room and spent a lot of that time in tears not being able to deal with the information and not really having the right person to talk to. Also in this time the tumor had grown to the size of a tangerine. I was having to sit on a very painful tangerine.
However the following week it felt like all hell broke loose. I had scans and tests and finally got to see the gynea oncologist. She explained that the usual treatment for vulval cancer is surgery, but as mine was so extensive, it was in my anal sphincter and in the back and side walls of my vagina, surgery would cause more problems than it cured. I would end up being colostomised with a 'vulvectomy'. I had just turned 40. I didn't like the idea of either being colostomised or having my vulva removed anyway. The other option was chemoradiation. The chemotherapy was to be a low dose of cisplatin, which fortunately doesn't attack your hair, just to boost the radiotherapy.
I was told that the radiotherapy would be uncomfortable. I wasn't prepared for how horrendous the reality would be. Firstly I had to be scanned several times for them to work out where the radiowaves would hit. Radiotherapy works best on an even surface, but your undercarriage isn't even. The idea was that I was to be padded out with bolus's to give the area the illusion of smoothness. I was somewhat surprised that I didn't have to assume the position for this, but it was about the only pleasant surprise that I had.
Of course the radiologists have seen it all before, but I had to get to the bed with nothing on below the waist. NOTHING. Well, that's bad enough, especially when you have huge abcesses that are exploding at any given opportunity, but sometimes there were MEN on the team. Eventually I got used to that, but initially, OH MY GODS!!!! I'm half naked in front of men I don't know. When I complained I got offered counselling. The appointment of which turned up after the radiotherapy had finished.
I did as I was told. Used aqueous cream on the skin being zapped, kept the area scrupulously clean, etc etc etc. But despite all my efforts the burning was very bad. The skin had been burnt away. Going to the toilet was a nightmare and usually reduced me to tears. It was agony. Morphine did very little to keep the pain at bay. I wasn't sleeping at night, I was barely interested in eating (if you knew me, you'd know what a big thing THAT was) I spent a large part of most days in tears. The amount of drugs that I had to take, on top of those that I take on a regular basis anyway, meant I had to keep charts so that I knew where I was. I developed shingles while I was having the treatment so I also had to be treated for that.
At one point all my, erm, tender bits swelled hugely. While I was laying on the bed using a fan to try to cool things, my daughter came in and wanted to have a look. Well we're quite relaxed about nudity at home, so I said she could have a look, but explained that it wasn't very pretty but that it's all to do with getting rid of the cancer. She went. She looked. Her eyes opened up really wide and she said, with horror in her voice 'Mummy? Are you growing a willy?' Hahaha, that made me laugh.
I was looking forward to the radiotherapy ending. I had developed a phobia about going in there, which wasn't helped by the machine breaking down while I was on it. As the burning got worse, the phobia got worse, until I was nearly in tears just going in. I tried to be brave, but it is so isolating, even though you're only in there for a few mins on your own. I thought that once it ended I'd take a couple of weeks to heal up and that would be it. The oncologist was pleased with how I'd responded to the treatment and how well the cancer was clearing up. I had to have 3 blood transfusions in all as my iron count had dropped quite low.
I was in such a state when the radiotherapy ended. I was so ill. It was like I'd kept it together to get to the radiotherapy dept every morning and once I didn't have to go it all fell apart. I was drinking morphine like orange juice, and am still to have any 'out of head' experiences with it.
The radiotherapy finished at the end of november and I was hoping to have recovered in time to have a nice christmas, but that wasn't to be. Infact the burning took months to heal. I kept being giving conflicting advice, like I was told to use flamazine cream on the burned areas, then told that I shouldn't have used it for as long as I did. I was told to keep the burned areas covered, but I was also told to keep them uncovered.
I kept telling the nurses that I wasn't happy with the healing, but they kept telling me that it was quite normal for it to have taken that long.
I had an MRI in feburary of this year which showed a 4mm patch of abnormal cells. They couldn't tell whether it was still some active malignancy, dead cancer cells that were yet to be cleared up or scar tissue. Another MRI was called for in another 3 months.
In this time it seemed like the burns were very slowly healing, but it was very slow. I was still having to shower off 3 times a day, but there were improvements.
After a while I thought actually it's getting sore again, so I rang the nurses and they asked me to come and see a doctor. So I did. I had cellulitis and I had a large ulcer formed in one of the natural creases at the top of my leg. I was treated with antibiotics again, but the first lot they gave me didn't do anything, so they gave me something stronger. This started to work, but not as quickly as they'd like. By this time I'd been in hospital for 2 weeks and negotiated getting home and having my i/v treatment continued by the district nurses.
While I was in hospital I had the second MRI which showed no signs of cancer. I know I should be ecstatic, but I have been left with many problems. I have been left with colitis and have to take immodium every day as a maintenance dose. I have also now started the menopause and everything that that's started. I dunno if I'll ever get my sex life back! I don't know how long my partner will put up with me and my associated problems. I have been taken permanently off the transplant list.
3 weeks ago I went back to the gynea oncologist who agreed that the celulitis had cleared up, but that there was still inflammation there. Also the ulcer still was still there. 10 days ago I saw a dermatologist, who gave me the right cream and an emoliant to wash with. I can't use ordinary soap anymore and I can't wash my hair in the shower anymore either.
I go back to see her on wednesday. If the ulcer has not healed it might be a return of the cancer. This wouldn't necessarily have shown in the MRI. If it hasn't resolved itself by then it will be biopsy'd.
So that's it. I feel like I should be ecstatic, but I'm still in limbo. I have to survive another 5 years before they will consider me for transplant again, and that's 5 years clear of malignancy, so if this ulcer turns out to be an issue, then that's that. In the mean time life goes on. I am not quite a wife, and a mother. The housework doesn't do itself, the dog doesn't walk himself, life goes on. I'll just hope it goes on for at least 5 more years.