Monday, 30 September 2013

My Story - by G.W

Another in our series of blog posts by womb cancer survivors.

This is a story I actually did think I may have to write at some time in my life. Sorry if it is very long and repetitive but I feel as if I need to pour it all out.
When I was 10 years and 3 months old I started the first of 45 years of very heavy, very painful, flooding periods. My mother took me to see our GP and (in 1966) he told her that i was quite a "freak" as there was only one case of anyone he had heard of starting at the same age as me. I was really upset at this and my mother was never very sympathetic (we always had a very difficult relationship up to her death in 2007) - she had never told me anything about periods, nor had I been prepared for them in any way and I honestly thought at that age that I was dying with the amount of blood I was losing each month.
Over  the years, I had visited my GP several times and told him about the length of my periods - every 4 weeks without fail they would appear and last 9 -10 days - I think he was quite bemused that they were so regular and even though I told him about all the pain etc and that I suspected I had Endometriosis. I don't think (looking back) he took me seriously. However he did refer me to a Gynaecologist in 1981 (I had just got married and the same month my periods got even worse, if that was possible) After some tests he found that I had a Polyp growing on my cervix - the size of a cherry he said. He said he would remove it straightaway in the clinic as leaving it on my cervix could have meant it turning "sinister" as he put it. Well, within minutes he DID actually remove it, without any pain relief whatsoever! He just inserted the speculum and snipped it off and held it up to the light for me to see! Yuk! I was in so much pain - I actually went back to work that afternoon but my husband had to collect me and take me home.  I stayed there for 2 weeks of even heavier bleeding and cramping. I was given a "sick note" for 2 weeks as I had lost so much blood and could hardly walk.
What I didn't realise at the time was the Gynaecologist was telling me that some women are prone to polyps in their womb or cervix and some of them become sinister in later years. I remember hearing those words as if it was only yesterday. Just using so many pads and taking so much Feminax every month was costing a small fortune too. I always had to ensure I had at least one change of clothes and underwear with me - pale clothing was a definite No No. It restricted my social and working life such a lot.
Endometriosis was still never confirmed at that time and the painful periods carried on for 45 years in total. I must mention that throughout this time I was never free of bladder infections - these first appeared when I was 18 years old. Over the years I had loads of investigations and small operations/tests but no procedure was successful for very long and back came the pain and infections with a vengeance.
Fast forward from the polyp removal of 1981 to September of 2011. I was never free of really bad flu - this was relatively new for me as although I get as many bad colds/flu as the next person, I had never had it going on for so long without a break - this "flu" lasted from September 2011 to March 2012 - no break at all, in fact it got worse over the months. As well as this flu, the bladder problems had got even worse - I had been on antibiotics constantly for around 18 months. I was very concerned that the antibiotics had affected my immunity and that was why I couldn't get rid of the flu. I went back constantly to my GP and he just carried on giving me antibiotics - some for flu (which by March 2012, I had also developed a  very bad chest infection) and different ones for the bladder infections too.
 I was quite surprised at the age of 55 that I was still having  very painful, heavy periods. I used to "joke" to my husband that I thought they would never stop and they would always be with me.
At the end of March, eventually the flu got better but the bladder infections weren't getting any better and one morning in the same week I started experiencing dreadful period like cramps and excessive vaginal discharge/pinky coloured "bleeding" - I hadn't had a period since August 2011 so I was quite aware and worried that something was not right - even with the worst period that I had endured over the years this new "cramping" and dragging pain in my stomach (and back and down the front and backs of my legs and swelling in my legs) was something else. I put up with it for a week or so as I thought maybe I was going to have another period. When nothing came by the end of March, I went to see my GP. He said he thought it was the menopause and this was the "ending" of my periods. I wasn't convinced and I returned to him every 2 weeks and reeled off the same thing to him about the bleeding and cramps which were getting worse. At the same time, my bladder infections were giving me hell and I think I had just about reached rock bottom as I was so frightened, tearful and bloody angry that I was not being taken seriously and that something was so wrong but nobody seemed to want to investigate as it was being looked upon as "normal" for my age. Between March and September 2012 I must have been visiting my GP nearly every 2 weeks and still nothing seemed to concern him nor any of the other doctors I saw. - My GP was continuing to prescribe antibiotics which had cost me so much in the way of my health and finances.
Every day was a constant battle with my GP and other medical professionals. I was completely worn out with the stress of it all that I was ready to throw in the towel and I began to think "maybe it is just menopause after all".  I had nobody to discuss anything with as none of my "friends" talk about "these things" so I wouldn't know whether it was normal or not. Thankfully I did never stop going back to my GP and kept on and on at him that I think in the end he was sick of seeing me.
One day in early September, my luck started to change. My GP  referred me to the Practice Nurse for a smear test just to check my cervix after I kept on telling him the story about the Polyp of several years ago. I had always had regular smears - some even paid for privately by myself as I was always quite suspicious that every 3 years wasn't enough. Anyhow the Practice Nurse was concerned that I was getting cramps and bleeding and gave me the most painful smear test I had ever had. She said she was going to ensure enough cells were taken around the cervix and inserted the "brush" further into my womb just to "be sure". This was the 12th September 2012. I could hardly get home afterwards I was in so much agony - I was so convinced that by this time cancer was going to be found - I was just waiting for them to confirm it. I had never had pain like this in my life - I actually thought this was the end and I was dying. On the 18th September one of the other nurses at the surgery rang me to say the lab had been in touch and I had some suspicious cells growing into the womb and they had been "shedding" every month for around a year or so and they had been picked up on the slide. I can honestly say, that if I had not seen that Practice Nurse on that day in September that I don't think I would have been alive today, or at least the cancer would have been found at a much later stage.
Yes I feel VERY angry at my GP and other health professionals at the lack of awareness regarding Womb Cancer - I, and a lot of other women I later found out, had been ignored and made to feel a nuisance and all we were doing was trying to help ourselves.
Now starts my womb cancer journey itself: The ball had started to roll very quickly from the 2th September smear; 18th September I got the phone call about the suspicious cells, 25th September referred to a Gynaecologist for an examination, 5th October the transvaginal scan where I found out the thickness of my endometrium was abnormal, 8th October the very painful Hysteroscopy without pain relief and 16th October the actual diagnosis of my Endometrial Cancer.  I always knew I had cancer - it had been at the back of my mind for months so I wasn't surprised at all when she confirmed it to me. The 29th October, my first MRI scan which was absolute hell with the claustrophobia but I knew that somehow I had to go through with it. My Gynaecological Oncologist explained I had an early cancer. It was found that I had a Stage 1a, Grade 2 cancer, although I had been originally told it was Stage 1a Grade 1. 
 I was only in hospital for 2 nights and had a bad time from the anaesthetic,  and the lack of pain relief afterwards for nearly 4 weeks that I find I cannot ever forgive them for but I am trying my best to put it all behind me and if only I could get my bladder/incontinence problems sorted, maybe I could start living again - until then I feel as if I am still living in limbo.
In hospital I didn't feel as if I had a good experience, (apart from having an excellent surgeon) I was put in a ward of geriatric 80 - 94 year old women. - nobody on the whole ward except me actually had cancer and the food was terrible so I was more than happy to go home after 2 nights even though I thought initially it was a bit too early. It was a cancer ward in a cancer hospital and I was told all these other women were there because there was nowhere else to put them!
My surgeon said that my hysterectomy had been difficult because I actually DID have endometriosis (after all these years I was finally getting it confirmed what I suspected all along). He said it was stuck to my bladder and bowel and he was amazed I had "been able" to put up with all the pain and discomfort for so long!!
Yes, my surgeon saved my life but it came at a price with my worsening bladder issues. Sometimes I think did stress contribute to me getting cancer? Yes I think it probably did - my parents both passed away separately in bad circumstances in their care homes in 2007 and 2008 and my wonderful husband had lifesaving heart surgery in 2010 after years of procedures. For years previously I had been bullied at various jobs I had worked at and life in general was very very stressful.

The only positive parts of my journey were "meeting" all the wonderful ladies in the Womb Cancer Support Group whom have been my rocks since I was diagnosed.


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