"In August 2016 I noticed slight spotting, but as I had been doing heavy work in the garden that day I thought perhaps the strenuous work had brought on a period. I did think this was odd though, as five years earlier I’d had a hysteroscopy due to heavy, continuous bleeding ( 3 months in total) which I just put down to ‘going through the menopause’. I just assumed that’s what happens during the menopause, so I hadn’t sought medical advice and just got on with it. After the hysteroscopy, I had not had any further bleeding so this spotting did cause alarm, is it possible to have a period after all this time ? Over the next day or two and with no further bleeding I carried on as normal and tried not to be concerned.
Approximately three weeks later the same thing happened again, this time I really was panicking as I had not been doing strenuous work. My initial fears came back on top of new ones. I made an urgent doctor’s appointment but was seen by a Practice nurse and not a Doctor. The surgery advised me that their Practice Nurses can deal with such matters, however, at my appointment I was merely assured that ‘these things can happen’ I challenged this, maybe so, but not after five years? I was not prepared to accept her explanation, it was obvious to me that this needed further investigation and I wasn’t going to leave until my fears were taken seriously. Blood samples were taken and I was advised that these would show if I had started the menopause! Having gone 5 years without periods, surely I was already post menopausal, not going through it?
One week later I returned for the results and was advised I was going through the menopause! I challenged this further, as after 5 years surely it was obvious that I had gone through it already. The nurse merely stated that she didn’t know what to do with me! I decided to take matters in to my own hands and asked to be referred to the same gynaecologist I had seen five years earlier.
Five weeks later I met with the Gynaecologist and a further hysteroscopy was arranged. Three weeks later the hysteroscopy was carried out and I was advised that I would get the results in 6 weeks time.
After two and a half weeks I received a call asking me to return to the hospital for an appointment with a different Gynaecologist. I instantly knew something was terribly wrong! Why would I be brought in sooner and why was I not seeing the same Gynaecologist. I had to wait 4 days for the appointment day to arrive, during that time I was unable to eat, sleep or work I could barely even speak, I was frozen with fear, my mind was unable to rest I just knew this was not ok.
My Sister came along to the consultation with me, on 18th Nov. 2016 as she was as terrified as I was. The gynaecologist asked “do you know why you’re here”? No one had told me anything, but I replied… “Because I have cancer” to which he replied “yes” ………
He began to explain that it was Grade 1 endometrial cancer which had been caught early and with a total hysterectomy I had a very good chance of surviving. He said that he had many ladies who have had the same diagnosis and who have gone on to live their lives without any further problems. I didn’t really believe that part, my Father had died of cancer and whilst I understand every cancer is different that experience is the only one I had to recall. In my mind I had no choice but to agree to the hysterectomy as without it things would only get worse. I was referred to a Specialist women’s hospital and began a further 6 week wait.
Strangely, on leaving that consultation I felt a sense of relief, which is I know sounds bizarre, I wasn’t relieved I had cancer, it was merely a relief from all the waiting and worrying and mind torture of not knowing. I knew that the future was even more terrifying but at least I knew what was going on and what we were dealing with and I could now concentrate on doing everything I could to get this ‘thing’ out of me as fast as possible.
My sister and I hardly spoke on the drive home, after all, what can you say? I felt so bad for her, knowing what we all went through with my father’s illness and subsequent death, I didn’t want her to have to go through all that again with me!
I am single so the only people I had to tell were my Brother , Sister and their Children.
I didn’t want to have to tell my Niece and Nephew, they were very young when their Grandad had died but all the same they were aware he was very poorly. We are a family that speak openly and honestly with each other about everything, so there was no question of not telling them yet, I didn’t want to give them the news and leave them the huge weight of the situation. Once you have told someone you can’t take it away again. I felt terrible for bringing such pain and worry to the people I love so much.
I was at my sister’s house when my nephew who is now 24yrs old came home, he was aware that we had gone for the results that day, he came through to door and took off his coat sat on the sofa and got out his laptop to do some work, I couldn’t say anything. Minutes later my sister came in the room and asked ‘have you told him’? I just looked at my nephew and said, I don’t need to tell you do I love.. he said, No! .. It’s just so strange.. When things are ‘really’ bad.. You always ‘just know’. He hugged me for 20 minutes straight, he just didn’t let go. It broke my heart.
My niece was away with her job only returning the next day, but called my sister to see how it went. I felt it was wrong to withhold the information from her, but at the same time I felt it was not right to tell her this type of thing whilst she was away from home and on her own. So we just said that we had seen the consultant and not to worry. I felt very uncomfortable knowing that I was withholding the truth from her and she knew something was wrong, saying, what is it? Just tell me. The next day I told her but she was hurt that we hadn’t told her immediately and couldn’t see why I had waited until she was home and not alone. She’s just fine now and I was able to explain my reasons, which she understood.
My brother also lives away so I called and spoke to him the next day. He wasn’t aware that I had had any problems or tests prior, but, in light of our experience with our farther (we all have to have invasive tests every couple of years) it is never really far from our minds, we are all only to aware of the possibility that cancer can come to any of us at any time. He was shocked but is a pretty cool guy and went straight in to ‘Brother’ mode and has been a massive support ever since.
During the weeks ahead I rang the hospital every day, often twice a day in the hope of getting a cancellation. The hospital were very understanding and assured me that it was perfectly fine to call and check but unlikely that anyone would cancel, however, I had to try, as whilst it was only 6 weeks to them, it was a full three months since I first went to my doctors. I was acutely aware too much time was passing.
I researched immune boosting foods and recipes and made these predominant in my diet, doing everything I could to give my body the best chance. I continued to work as normal and as the weeks passed it all felt a bit surreal. I was carrying on as if nothing was happening, I felt like I should be doing all the things Ive ever wanted to do, visit all the places Ive always wanted to see, but I wasn’t! I was just working as normal. I thought perhaps I could take a holiday now, whilst I still can, but then I thought I might miss the chance of an earlier surgery date if im not here!
Eventually 6 weeks passed and my surgery day arrived. 5am start on 28th Nov. 2016 for the journey, I was eager to get there but terrified also. I was advised that I was last on the list for that days surgery, could this wait get any longer! It was late afternoon before I was taken to theatre.
I awoke later that evening after approx. 5 hours laparoscopic surgery. I was pretty sick after the anaesthetic but that’s normal for me. I didn’t sleep much with nurses checking me through the night but I was assured all went to plan and the next day I felt a little better.
I was shocked at the size of my stomach with all the gas from the operation causing swelling, It was uncomfortable and I found it very difficult to eat much, just the slightest bit of food left me full up as there was just no room. I also suffered with severe trapped wind in my ribs and shoulders, again from the gas used in the surgery. I was discharged 48 hours later having passed several little tests like being able to walk without pain, take a shower on my own and go to the toilet. It seemed very soon to be going home but the surgeon was happy everything had gone well and I was to return in 3 weeks time for my results.
I normally live alone, so I went to stay with my Sister whilst I recovered as I was unable to do any of the normal day to day things for a while yet. I was given paracetamol and ibuprofen as painkillers, I was expecting to have to take something stronger, but they did the trick. I reduced the painkillers as the weeks went by and was gradually able to do more and more things for myself. My swollen stomach had gone back to normal and I was able to eat more. I would get pain only if I had done too much, maybe walked for too long that day or if id simply done too much too soon.
Three weeks passed and my Sister took me back to hospital for my results. I was dreading this day, but, I had doing everything I possibly could so far and whatever the outcome I would continue to do so.
My results were positive, I was advised that the surgery went well and that the cancer hadn’t reached the muscle, therefore, no further treatment was required. Naturally, I was hoping for this outcome, yet I wasn’t convinced. Im not sure you ever can be? Perhaps that is a combination of previous experience, being afraid to believe it, or that you’ve been worrying for so long you can’t just stop immediately. Perhaps like many things it’s just a slow realisation as things return to normal that maybe, just maybe, I was very lucky.
I have a further check up in three months time, then will be followed up every four months for the next three years. Now all I can do is stay as healthy as possible, live my life as full as I can and hope that I have been one of the lucky few to survive.
As a result of my experience I have contacted my doctor’s practice to request that their procedure is changed and that any lady young or old who reports unexplained or changes in bleeding is automatically referred to a gynaecologist, or at least a doctor for full and proper testing and onward referral.
My own experience is the frightening truth that if I had not pushed for onward referral and insisted my concerns were taken seriously I would have been sent away under the illusion that nothing was wrong and that ‘ it’s common to bleed unexpectedly’ ‘it happens to lots of women’ all these things were said to me. Let’s face it, we all want to be told that it’s all ok, no one wants to be told there is a serious problem. I could have so easily walked away that day under the illusion that I was ok, but if I had so easily done so, six months or twelve months later my story would have been so very, very different"
If you would be willing to share your story then please use the contact form to get in touch.
Kaz xx.