During October 2005 I realised I had a problem in the most private of areas. I had started a period and tried to insert a tampon and caught the tampon tube on something a little hard and I didn’t know exactly what that was. I got a mirror and had a look and discovered what looked like a mouth ulcer with a dark centre. It was not painful, not huge in size, just a little odd!
To get to the bottom of the mystery I trotted off to see my GP. Thursday 10th November was the key date. My GP asked to examine me and called in a nurse to act as chaperone.
He was non committal but said he thought I should be referred to a specialist. I had no idea how that 10 minute appointment was to become so important. I didn’t ask if it could be cancer because I had no idea that a woman could have cancer of the vulva or indeed what it would look like. I naively imagined that cancer was a lump in the body, felt through the skin. I knew you could have cancer of the breast, bowel, liver, kidney, skin, brain, prostate, testicle, ovary, womb, cervix and even penis but I did not have any idea, cancer of the vulva was possible.
Exactly one week later I saw my gynaecologist at the hospital. He examined me and said that I should come in for a biopsy which was to be scheduled for another week later. The biopsy took place on Thursday 17th November, 2006. My husband took me to hospital; I had to undress into a theatre gown in preparation for the procedure. I was also given another gown to preserve my modesty. A visit to the toilet soon got rid of that one though, because the strap fell into the loo and I managed to wee on it. At least it gave me something else to think about.
Four injections into my vulva allowed the gynaecologist to get on with his job and it had started to dawn on me that actually this could indeed be cancer. Just 6 days later I was sat in a very busy clinic at the hospital waiting for my results. My husband came with me. We went through to see the gynaecologist again for the news. Results gave a positive result and I was diagnosed with cancer. Undifferentiated,
A very brief explanation about an operation and possible radiotherapy followed and I was referred to another hospital where there happened to be a centre of excellence for women’s gynaecological cancers. What a lucky co-incidence for me that I lived only 20 minutes from such a wonderful place.
We went home, spoke to our solicitor, wrote our wills, I listed which of my possessions I wanted my friends and family to have and I planned my funeral and copied the music onto CD. I then collapsed in tears.
A few days later I had my first appointment at the clinic. At this point, I knew I had cancer and had some idea of what was to happen but the finer mechanics of it were not yet known. I had my blood taken, blood pressure measured, an ECG and a chest xray. All I could think about was how I would tell my children that I had cancer. The Macmillan nurse came through to see me and we had a discussion about how to approach the subject given their age (at that time 13 and 14). It all seemed unreal. I was calm, collected, organised and eager to get all information I could. It felt like a project at work and if I managed it properly, I’d be able to get over it and back to normal in no time.
I was then told what would happen to me and it was explained that I would have a ‘wide local excision’ which would mean removing the cancer and a 2cm margin around it. My cancer was only 1.3mm in size which is very small in cancer terms but they wanted to get a good margin around it to ensure success. 2cm in such a delicate area is huge and I could not possibly envisage how that removal of flesh would affect me. My cancer was just on the entrance to my vagina and touched very, very slightly onto the midline. This was the key, to my treatment and my specialist decided to remove lymph nodes from both groins to help prevent spread of the cancer. I didn’t understand about lymphoedema at that point mainly because I’d never even heard of it. I was relieved that I didn’t have to have a radical vulvectomy that I’d read about on the internet. I’d convinced myself that all would be removed.
At that appointment my groins were examined more carefully. A very large node could be felt which was somewhat sore when examined. A comment was made that it was unlikely to be cancerous as cancerous nodes were rarely painful. I couldn’t believe that I hadn’t thought to even examine myself in that area.
I was admitted to the hospital for surgery on 15th December, 2005 and imagined that I would be home in time for Christmas. Surgery took place on 16th December with all the usual rigmarole of going down for surgery. Luckily I was first one down so the lack of cup of tea and breakfast was not too much of a problem.
I had some sort of spinal block for which I had to bend forward and curve my spine, I’m told something like an epidural procedure. In the mean time I could see through the doors and I could see specialist and his team getting ready for me and still it seemed like it was happening to someone else and manageable. I then had the anesthetic which put me out.
When I came round from the operation I was in the Intensive Care Unit hooked up to all sorts on a fantastic moving bed with my own nurse. It would seem I had lost rather a lot of blood during the operation, removal of lymph nodes had proved tricky and I had been under anesthetic for approximately 7 hours.
My husband was frantic and he finally discovered where I was when a nurse from the ward told him where I had been admitted to but not the reason why. 17 lymph nodes were taken from one side and approximately 25 from the other. I didn’t realise I had so many just in those areas.
Self-administered morphine kept me sedated and pain free.
Eventually I went back to my side room. I cannot remember going back to the ward nor can I remember those early days. I do remember clicking on the morphine and having a number of migraine attacks which I believe were a side effect of the morphine. I had oxygen in my nose, a drip up (saline? I’m not sure), a catheter and drains out of each side of my groin.
At this stage I was very poorly. An infection set in and I had to have huge doses of antibiotics by IV. All I could do was sleep, sweat and shake. Part of me wanted to be up and walking and the rest wanted to give in. It didn’t feel manageable any more and I just wanted to give in. Realisation was starting to dawn. This was the first stage of my recovery.
The physiotherapist came onto the ward each day and on day 3 I tried to get out of bed. Unfortunately, having been moved back to an ordinary bed my back almost gave way.
The nurse came into the room at the time I was trying to get out of the bed indicated that she could not help me and I could not lean on her as I might hurt her back and she would get into trouble. I was shouting out in agony. I nearly passed out with the pain and vomited. I don’t know how I managed it – I could not stand up straight due to the pain in my back.
Mobility was made doubly difficult by the fact that I had drains placed on either groin and were placed either side of my bed. IVs also had to be factored in. It was a major operation to get myself ready to go even to the toilet once the catheter was out. I had lost my strength and the pain in my groin area and vulval area was enormous. I didn’t have the upper body strength to push my body around and I wonder if it was the fact that my nerves and muscles had been cut through right across my groins that made me lose my lower body strength.
I was still not completely aware what had been done to be and I did not want to look at anything close up. I could not cope with the visual aspect of it just yet. Nurse’s comments on changing dressings seemed positive so I hung onto those comments.
Recovery was slow. I wasn’t allowed home on Christmas Eve due to infection and I had to be on IV antibiotics. The irony of that situation was that they couldn’t get the IV antibiotics I needed from pharmacy for whatever reason and I had to take tablets orally before I went to sleep. At that point I completely lost my temper – I could have been at home, in my own bed with my husband, waking up with my boys on Christmas Day. I shouted at the staff and I am, to this day, ashamed of my behaviour that night.
I woke up Christmas Day morning to discover that Father Christmas had found me and left a little present. There were only 3 patients in the ward on Christmas Day (including me). My husband came to collect me and eventually we got home for about noon. He prepared and cooked dinner and presented us all with a beautiful dinner. My appetite had not really returned and I could hardly manage anything. I sat at my seat looking at my exhausted husband, semi-excited boys and my Mum and cried.
Between Christmas and New Year, my specialist came in to see me to give me results of lymph node biopsy. He found that one lymph node showed as positive for cancer, on my left side and it was fortunate that it had not broken out.
Feeling was starting to come back to my thighs. I had been encountering complete numbness in my thighs. The nerves were finding their routes again and this was taking many different forms. Straightforward electric shocks on my thighs and down to my knees, running water (hot and cold) both up and down my thighs, stabbing pains and pins and needles were all there at any time of the day or night.
After 16 nights in hospital, I was released to go home with my range of painkillers, dressings and antibiotics. The hospital arranged for the district nurse to come in to see me each day.
My husband stayed off work with me and helped me to get out of bed. I managed to get out of bed each morning about 8.30 to a cup of tea and antibiotics before I then could get to the shower and get my dressings off. These dressings covered my groin area and each and every morning was agony as my pubic hair was ‘waxed’ off by NHS dressings.
The nurses came in each day to change my dressings and ensure all was healing well. I had no idea about the District Nurse and what they did. Having never encountered them before, I didn’t rea
My next phase was radiotherapy and that couldn’t start until my groin area was healed. Radiotherapy was likely to break down my skin so close after healing so it had to be healed properly. 7 days a week the staff came into to check on me. I look back now and I cannot believe that I was so poorly for so long. My vulval area was checked every day or so but that really had healed very well. My ongoing problem was my groins.
District Nurses tried to encourage me to have a look at my vulva post operatively. Unfortunately, it took a very long time before I was able to do that. I was still a relatively young woman and couldn’t comprehend what these changes would make to me, my husband and my future life.
Another infection set in. More extra strong antibiotics, hardly eating any food, nasty vivid nightmares were part of my daily routine. My family didn’t know what to do with me.
Tuesday 21st February, radiotherapy finally was able to start. I was well enough to attend with sound enough skin and raring to go. Day 1, transport was arranged for me because, I lived so far out in the countryside away from the city centre, it almost seemed beyond possibility that I would be able to get there. After a few days I was able to drive myself. My appointments were all for 8.30am, so although an early start, I could be home early too and en
I have never felt so much love as I felt for people at that time on cold winters’ mornings whilst waiting for my treatment. How can so many people have cancer and others don’t know. It is just too important for the rest of the world not to know. When cancer affects you as a patient, carer or family member it is almost as if you have been swept with a brush and touched. Some are touched very slightly and others are knocked out by it. At this stage it was not my turn to be knocked out by it.
I think that the power of positive thought was also vital to my recovery. Whilst receiving my radiotherapy treatment, I imagined white light filling me and overtaking my cancer. I felt it was being taken out of my body and removed each and every session. The journey my mind took me on removed all the cancer from me.
When radiotherapy had finished, I turned my thoughts to getting back to work. My family didn’t want me to return to work – all thought it was far too soon. I intended to return to work after Easter. As fast as I could think about returning to work, another infection set in. This time an abscess on the site of the wound, on my left side. A visit to the clinic and it was drained at the clinic. More antibiotics, nasty, vivid nightmares and within another four weeks, I was back on my feet again.
Thoughts of work returned again and this time after Whitsun. So that’s what I did, returned to work. My employer was a very sympathetic employer and had a return to work policy which helped enormously. I tried a couple of mornings a week start with and soon built up to half time. Over a longer period of time, my stamina and strength built up and I was able to do more.
Six months after the operation, I had another abscess. This time worse than the last one with a hospital admission to get it sorted. More antibiotics, more vivid nightmares, and a quicker recovery.
So now, I see my specialist every six months. I have lymphoedema as a result of the removal of the lymph nodes. It isn’t the same for everyone and for me it is worse in my left leg (the side of the cancer) and the side of the radiotherapy.
I visit my local hospice for lymphatic drainage both complex and simple and I have a skincare and exercise routine to ensure my skin and legs stay in tip top condition. I am losing weight (1stone 7lbs) at the time of writing which is also taking pressure of my legs.
I am hoping that my cancer has been caught in time and surgery was radical enough to remove the necessary area. Radiotherapy should have also helped with the “belt and braces” approach, so watch this space. I’m still only 42, have a long life to live and intend to continue to live that life and vulval cancer will be something which has happened to me along my journey. It will not be reason enough to stop me traveling through life.
Caroline
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