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My Story | Debbie J., Lower Normandy, France

Recurrent vaginal cancer, November 2004 at 48
External and internal radiation (radiotherapy), chemotherapy, lymphadenectomy, oophorectomy, vaginectomy

In June 2004, when I first started finding blood on the toilet paper after opening my bowels, I put it down to hard stools caused by constipation. A gruelling new job on a factory production line, with just one 30-minute bathroom break, meant I couldn't spend as long as usual on the toilet. This, plus the irregular hours of shift work, had thrown my poor body out of its regular routine; some weeks I started work at 5:00 AM, others at 1:00 PM. I wasn't particularly worried, though.

Then the blood started to appear on the toilet paper even when I hadn't opened my bowels. I wondered if it could be piles (hemorrhoids), but was still not really bothered. I had had a hysterectomy for fibroids fifteen years previously, so knew it could not be uterus-related. When my knickers started to get bloodstained between toilet visits, I just began to wear panty-liners, and told myself I would go to the doctor when I could identify a convenient time. They were talking about distributing free flu vaccines at work, so I decided when I went to the doctor with that, I would mention the piles.

In October, I saw my sister, who also had piles, and asked her about bleeding between toilet visits. She had not experienced this. She mentioned it later to another sister, a nurse, who asked if my cervix remained after my hysterectomy all those years ago. I hadn't been aware this was possible; I still had my ovaries, this I knew, so I had not experienced an early menopause, but no mention had been made of a remaining cervix, and I had been delighted to do away with the uncomfortable (Pap) smear tests.

Now worried, I located a local woman doctor and made an appointment with her. After a cursory inspection of my private parts, she quickly established that the bleeding was from my vagina, not piles. She attempted an internal examination, but this increased the bleeding so much that she seemed to panic, and gave me a letter to present to my nearest hospital emergency department, either next day or, sooner if the bleeding became worse. She said she could feel something unusual in my vagina but didn't know what it was. For the first time I felt a little scared, especially when she wished me good luck as I was leaving.

The emergency doctor on duty at the hospital next morning looked between my legs, but was reluctant to attempt an internal examination, so made me an appointment to see a gynaecological consultant the following week. I spent my free time during that week surfing the internet to see what my symptoms could mean. Eventually, I decided that I had something called a rectocele, a fissure between the vagina and the bowel. It sounded pretty gross to me, but my symptoms seemed to fit. I did see vaginal cancer mentioned, but it was stressed that it was an extremely rare occurrence. I was sure somehow I couldn't have cancer. After all, I led a healthy lifestyle, didn't smoke, rarely drank, was largely vegetarian, exercised regularly, had never been obese and religiously consumed my daily five portions of fruit and vegetables. The only relatives I had known to develop cancer had been heavy smokers, and no one in our immediate family had ever had cancer. So why would I?

When the consultant examined me the following week, the pain from the speculum was excruciating and, even then, he wasn't able to see clearly. He asked me if I had been playing "dangerous games." My mind boggled - I couldn't really think of a game which would damage the inside of my vagina - but I told him I hadn't even had sex for over a year because it had become uncomfortable. I had attributed this to menopause (I had recently started hot flushes as well) and a deteriorating relationship with my partner. He booked me in for an examination under general anaesthetic the following week. He didn't mention the word cancer, or biopsy, to me although when he was on the phone arranging the procedure I heard him say the word "biopsy." Alarm bells rang, but I stifled them.

I had to wait a week after the biopsy before going to see the consultant for the result, on 5th November 2004. I took Pete, my partner, with me, as I felt it important he hear what was said; I knew I was unlikely to remember. The consultant said it was a very serious condition. I had something abnormal in my vagina and they had to treat it as cancer. He never actually said I had cancer, only that the growth would have to be treated as cancer. He rang the regional cancer centre to make an appointment for the following Monday, then gave me a letter to give to the consultant there.

I steamed open the letter (who wouldn't!) and read that I had an adenocarcinoma in my vagina. After learning I had cancer, I told Pete that if my condition was terminal, I would marry him so that he would benefit from my pension. I planned my will and started listing songs I would want played at a memorial service, after being cremated. I guess it was my way of feeling I was in control of the situation. Again I surfed the internet for information about vaginal cancer, but the facts and figures seemed irrelevant, and what I really wanted - a story by a survivor of vaginal cancer - seemed impossible to find. All I located was a sad tale by a husband who had lost his wife to a brain tumour after she contracted vaginal cancer. It was not the kind of story I wanted to read.

My consultant at the cancer centre was the chief radiologist. He said the treatment options were surgery, radiotherapy (internal and/or external) or chemotherapy, or a combination of all three. I was booked for another examination under general anaesthetic, and various other scans and tests to see if the cancer had spread. A secretary took my details and said all treatment would be free, as would transportation expenses.

The surgeon drew me a diagram of the tumour in the vagina, and I was surprised to see it was not a round ball as I assumed, but a kind of corruption of the vaginal wall, close to my bladder. He said surgery would involve removing my bladder in order to get the required margin, so I would be better treated by radiotherapy and chemotherapy alone.

Radiotherapy was scheduled for the following month since I had long previously promised to take my daughter to Paris to celebrate her 21st birthday. Because this was possibly the last birthday I'd be able to spend with her, no expense was spared, and I took copious photos. The radiotherapy began the day after I returned home from this adventure. I had external radiotherapy every weekday for 28 sessions, and chemotherapy (cisplatin) all day every Monday. I developed terrible diarrhoea in the middle of the second week, which made the area around my anus so sore I dreaded going to the toilet and couldn't sleep. I found I was up every hour and a half during the night, and this contributed to the general exhaustion I felt as treatment progressed.

I was given what were supposed to be soothing enemas to be inserted at bedtime, but I couldn't insert them myself, and Pete found it very difficult because the insertion process was agony. This was one of my all-time lows - lying on a towel on the bed, crying whilst Pete tried to insert the enemas, and then giving up because it was hurting me too much. Anti-diarrhoeal tablets helped a little, but then if my stools became hard the pain of passing them was worse than ever; I preferred the diarrhoea. I was careful what I ate over Christmas and New Year, but managed to participate in all the festivities and wear a smile, all the time thinking, "This may be my last Christmas - I need to give people happy memories of me."

Internal radiotherapy was the next step in my treatment plan.  Based on my internet research, the very idea filled me with horror and disgust. I had been unable to ascertain exactly how it was administered, but knew something radioactive had to be put into my vagina, and I dreaded it. I had quite a wait before the doctors decided the vagina had healed enough after the external radiotherapy to make a silicon mould of my vagina. I listened to favourite music through a Walkman during the process, which amused the doctor, and, for some reason, had to be done twice.

About a week later, treatment began: in the isolation ward the mould, or tampon, was inserted into my vagina under a general anaesthetic, and I was connected to a machine. One lead from this machine was plugged into a socket in the wall, whilst another lead was plugged somehow into the mould in my vagina. The machine had to be switched off every time anyone entered the room, and vibrated slightly when this happened. I had a urine catheter as I was unable to leave the bed, and was given a low residue diet (I had had an enema before the mould was inserted.) Sleep was impossible, as it was uncomfortable and I could hardly move; I just listened to all-night radio and willed the hands of the clock to go round, as I knew I had to receive the radiation for 24 hours.

One of the lowest points of my entire cancer journey came when the doctor came to remove the mould. She said the tumour was still there, so I had to have the treatment for a further 24 hours the following week. I couldn't believe it, and really wondered whether I was strong enough to endure a further night like that I had just experienced. But the medical staff had done so much for me already, I felt I would be letting them down not to continue the treatment.

The following week when I booked into my room I noticed that there was no socket for the machine in the room, and the nurse explained that it would be needles this time. Again the mould was inserted under general anaesthetic, but this time, instead of wiring me up to a machine, the doctor came in and inserted lots of long, thin needles into the mould in my vagina, each with a little metal "flag" on the end which stuck out of the vagina and made any movement painful. In addition, whereas the previous catheter had caused me no problems, this one made me feel as though I was desperate to urinate the whole time. The night seemed to pass more slowly than ever, and I have to admit, it was one of the few times I cried, longing to ask them to take everything out and just let me go home; it was not just uncomfortable, it was sore. But I thought of the Jews during the Holocaust, and how they had even worse things done to them, with nothing to look forward to afterwards except death in the gas chambers after losing all their loved ones, and I reminded myself how very lucky I was by comparison. I was even able to smile when the oncologist joked, on coming to remove my instrument of torture, that they had a special offer on and I could have three for the price of two if I'd like to come along the following week again - I was grateful she was only joking.

The following month, April, I had another biopsy under general anaesthetic, and on 3rd May I was told there was no more cancer in my vagina. I had a dinner party with close friends to celebrate, and everyone told me how well I looked. On 24th May, I noticed, in the shower, that there was a tiny, pea-sized lump in my groin. I had to go away from home to attend a funeral, but when it was still there on my return, I felt obliged to show it to my local doctor. It wasn't that I was worried myself, but I was worried that the cancer centre might tell me off if I didn't mention it until my next follow-up appointment. They had put so much effort and money into saving me; I felt I owed it to them to take responsibility for my own health.

The doctor sent me straight to the cancer centre, who did a biopsy straight away, though only as a precaution as it didn't have the usual qualities of a tumour. Sadly, the biopsy tested positive for cancer. In my naivety, I actually thought they could probably remove the lump through day surgery, and it came as a shock when the anaesthetist said the operation - keyhole surgery - would take at least three hours.

As I came round from the general anaesthetic, the surgeon passed my bed and informed me, as I vomited into a bowl, that he had removed 26 lymph nodes, plus my ovaries, "because they had been damaged anyway by the radiation." I was rather taken aback, simply because this had never been presented to me as a possibility, but it seemed logical to do this if they were damaged anyway. I was told three of the lymph nodes had tested positive for cancer.

My entire groin and vulva area were very swollen after this keyhole surgery. For the first few days I had drains coming out from each groin, but eventually these were removed. I was discharged after twelve days, but the groin area kept swelling up. A nurse came to my home daily to inject me so that I did not form clots, and he advised me to return to the hospital when the swelling did not go down. I returned twice, and each time, the doctor on duty stuck in a needle to drain the fluid out of the area - apparently lymph, which had not yet re-routed itself after the removal of the 26 nodes. But apparently inserting the needle could in itself encourage the formation of more lymph, so I was prescribed painfully tight cycle-type pressure shorts, which I had to wear continually - they even had a hole so I could use the toilet without pulling them down.

I was sickest during this period. I felt weak and drained, and although I forced myself to wander about as much as I could, I spent most of my time lying on the sofa whilst those around me worked. We had a succession of young volunteers helping with the animals and garden, and I felt humiliated being seen in such an incapacitated condition - I had always been so full of energy and enthusiasm. As I suspected, a thermometer confirmed that I was running a fever.

We went out for a meal, then, the next day I returned to the hospital to check that the shorts were doing more good than harm. They removed the shorts, and then admitted me because of the fever. No one ever said the shorts had caused the problem, and I had to have another scan in case there was another tumour causing the fever, but it proved negative, and after another twelve days in hospital, on an infusion to lower the fever, I was allowed home, though for the first time this was lying in an ambulance rather than sitting in a taxi.

I was prescribed a course of lymphatic massage, and very gradually the swelling went down. I remember my delight when I was able to return to my usual sleeping position, on my tummy, for the first time, and when I was able to explore, with my dogs, a seven km walk I had seen from the taxi on my daily treks to the radiotherapy sessions.

The following December, however, a routine MRI scan revealed yet another abnormality in my vagina. A biopsy indicated that it was not cancerous, but the surgeon felt it wise to remove the vagina anyway, whilst the abnormal cells were still so small that the vagina could be removed without removing my bladder. I had this surgery on 31st January 2006, and, to me, it seemed the most major of the surgeries. I awoke with a naso-gastric tube and an excruciatingly sore throat, both of which were totally unexpected, plus a scar from belly button to vulva. The scar gave me much less pain than the throat, which remained sore long after the tube was removed. The worst pain was the colic, though, which I had never had before and would not want again.

I was not allowed to eat or drink for a week, after that I was given only natural yoghurt and stewed apple, neither of which I liked. They kept asking me if I had had a bowel movement, and I wanted to know how I was supposed to produce a solid movement when they were only feeding me a liquid diet. They would not let me go home until the magical solid movement had been passed, so I made a pig of myself as soon as I was given solid food, and of course, suffered terrible colic and vomiting. I became very upset, as I desperately wanted to return home to my animals, but was scared that the terrible pains would come back.

For the first time they gave me something to calm my nerves, and after a couple of days, they let me go home, clutching a precious few very expensive, but fast-acting anti-colic lozenges. After about a week, my tummy returned to almost-normal, though to this day, I still have times when, if I don't get to the toilet immediately, I soil myself, and I have a permanent pink-tinged discharge from "somewhere down there," which the doctors seem to regard as normal. It seems ironic that, two years later, I am still using the daily panty liners I started wearing before I was even diagnosed.

In May 2007, I found a tiny lump in the side of my right breast, an area which would not have shown on the routine mammogram I had in February. I mentioned it at my check-up with the oncologist, and she arranged for a precautionary biopsy, but I heard nothing so assume it proved to be nothing. I am on three-month check-ups for now, but feel almost as fit as I was before diagnosis. I tire more quickly, but that could be a result of my age, as I hit 50 last November. I am also more forgetful than ever, but whether that was the chemotherapy or just my age we will never know.

When I was first diagnosed, I never asked myself the question, "Why me?" In fact, I used to ask, "Why not me?" I read somewhere that one in four people develop cancer at some time in their lives, and as I was one of four sisters, I was really pleased that I could be the one, as I would hate to watch any of them battle the disease.

Having survived, though, I do find myself asking, "Why me? Why did I survive when so many others with young families or promising careers do not?"  To me, being a cancer survivor is a huge responsibility. One has to justify the fact that one has been given this "additional life," as I call it. I feel tremendous pressure to live it well, to earn it, to make it worthwhile. It is not easy when one is living in a foreign country, unemployed, and virtually penniless as a result of a cancer diagnosis, but I try to live each day as though it were my last. I appreciate the little miracles of nature that surround me. And although she lives in a different country, I try to be there for my daughter, a disabled young woman still struggling to find her identity in a challenging, demanding world. She keeps reiterating how glad she is to have me to talk to as I am the only person that really seems to understand her. I pray that I will be here for her at least until she finds that special person who can fulfil that role for her when I am gone, but I thank God for each extra moment that I am undeservedly given.

 

May 2008

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