"I received my diagnosis of endometrial cancer on 8th June 2016. I had my hysterectomy on 16 June 2016 – my 59th birthday. It turned out to be stage 1a – with no further treatment required. Most people sympathise with having had such a serious operation on my birthday – spoiling the day. I feel rather differently. It was the best birthday present I've ever had. Quite apart from spending most of my birthday high as a kite on post op morphine (something a lot of people would quite enjoy), the surgery saved my life and meant that I am now looking forward to my 60th birthday on 16th June this year and planning a spectacular weekend of partying with my friends.
I was fortunate in many ways. I had a gap of 8 days between diagnosis and surgery – most of us who have gone through this process spend a lot of time waiting and worrying. I didn’t really have time for that. I went into work the following day, told my line manager and colleagues about my diagnosis, and returned to work nearly four months later. I am still working a phased return (4 days a week with 2 worked at home and 2 in the office). My employer still pays me a full time salary for which I'm very grateful and following a meeting with occupational health last week, I will be returning to full time work on 1 July – a little over a year after my diagnosis, and 9 months after I returned to work.
I received excellent treatment, and support from the NHS and cancer support charities from the point of diagnosis onwards. However, the reason that I was operated on so quickly was because the process of diagnosis had taken so long and they had to operate by 16th to ensure that I didn’t breach the NHS cancer treatment time deadlines,. I first went to my GP with post menopausal bleeding in early March. I was referred to a gynaecologist within two weeks and then the process stopped. My referral for a hysteroscopy was considered ‘routine’ and after almost constant badgering for three weeks, I was told that I had an appointment in August. I would probably have accepted that, if I hadn’t been through the same process almost exactly a year before. I got a two week referral and within a total of four weeks, I had had a hysteroscopy, and my follow up appointment and was given the all clear.
Eventually, I had a hysteroscopy on Sunday 29 May – the hospital was trying to clear a backlog so were doing them for a couple of weekends. After my procedure my gynaecologist came through to tell me that she’d removed a couple of polyps (as she had during the previous years hysteroscopy) and that everything looked fine, and a follow up appointment was set up for three weeks later. As I'd been through the process a year before, I thought no more of it, and went back to work a couple of days later after the effects of the general anaesthetic had worn off. The next week, I got a call while I was in a meeting at work, it was the hospital, bringing my follow up appointment forward to the next day. I knew it wasn’t going to be good news.
The next day I went to the hospital with a friend. The receptionist knew nothing about the appointment, and insisted that I had made a mistake. I was incredibly upset by this time because I know that when the NHS calls in in a hurry, there's usually a good reason. Fortunately my friend was there to support me, and we insisted on speaking to the unit manager, who eventually confirmed that I had been called in and that I had an appointment. After this little bit of confusion, I was called in to the gynaecologist, and as we went in I noticed that there was a nurse in the room and that her badge included the word ‘oncology’, so any hopes I'd harboured that it wasn’t cancer, evaporated. It was cancer. It looked to be early and unaggressive but that could only be confirmed following surgery which was booked for the following week. After going to work the following day, the rest of the time before I went in was spent having blood tests, scans, and oncology appointments. I don’t remember being terribly upset, although I was worried about my mum, who has dementia. I'm her main carer (alongside my full time job) and I was really worried about would happen to her if things went badly. Immediately after the appointment, I phoned my sister in Germany who was obviously upset, but very kindly took on the responsibility for telling my other sister. I found the process of telling people quite difficult, because I was so worried about their reactions and their sympathy and that would make me break down and cry. I actually feared that if I cried, I simply wouldn’t stop, I am so grateful to my friends and family who supported me through that awful period. I spent a couple of days shopping to make sure that my mum had everything she needed until my sister could get to London and take care of her, and tried to get myself ready for surgery.
I am single, I work full time and am a carer, and although I have no complaints at all about my treatment once I received my diagnosis, I do think that the NHS needs to do more to understand the needs of single patients. Following my surgery, I was due to be discharged the next day, but I was in no state to go home to an empty house so soon after surgery. I needed to be taken care of that night and I almost had to fight to stay in hospital for a second night. No consideration was given to the fact that as a single woman with caring responsibilities for vulnerable adult, I wasn’t able to rest or relax following discharge. I know that the NHS has to meet many sometimes conflicting needs, but many single people wont necessarily have someone they can rely on to support them in the first few days following discharge from major surgery, and that endangers their recovery.
As far as the diagnostic process is concerned. I would urge anyone who has unusual bleeding – to get it checked out. At the same time as I was diagnosed with womb cancer a friend of mine with the same symptoms found out she had cervical cancer – despite annual smears. If its odd, get it checked out, and don’t be afraid to make a fuss if your worries aren’t taken seriously.
Because I'd gone through the diagnostic process exactly a year before and was given the all clear, I knew how it was supposed to work, so knew when it went wrong. We all want to be told that we don’t have cancer, so sometimes, the fact that the medics don’t seem too worried, is something we don’t want to challenge because to us it means theres nothing wrong!"
If you would be interested in writing a guest post for us then please get in touch using the contact form.