Aged 50 I had pretty much stopped having periods but was having intermittent spotting. Following a pelvic ultrasound scan I was diagnosed with fibroids, told that it was quite possible that I would get a bit of spotting due to the size of them as I moved around and that the fibroids would as reduce in size as I went through the menopause and not to worry.
Roll forward 3 years, I felt very well but was having hot flashes and so I went to see my GP to see if I could get some help. The locum Doctor prescribed a combined HRT treatment. I started taking HRT and felt marvellous in terms of my skin/ hair/ energy/ hot flashes but noticed my vaginal secretions were slightly different. I put this down to the additional oestrogen in my body and wasn’t worried.
The next year was very difficult for me in terms of work and family life. The spotting was increasing in severity and I was getting a bit of bloating, which I put down to stress. A year after starting HRT, I went back to my GP to ask if I should stop it. Luckily for me the Practice Nurse was concerned and arranged some blood tests Ca125 and Ca19-9. I stopped the HRT and the bleeding stopped almost immediately. However, the blood tests went on to show something abnormal so I was sent to the Gynaecology Rapid Action Clinic for a pelvic ultrasound scan. This time the scan showed some abnormal cells as well as a very thick womb lining and fibroids so further investigation was required. I was somewhat duped into having a hysteroscopy without anaesthetic so that I could get the appointment quicker (sooo painful, tragic that the NHS staff suggested that a couple of painkillers would suffice!). The biopsy conducted during the hysteroscopy confirmed that I had endometrial adenocarcinoma (a type of womb cancer) and I received this news on New Year’s Eve 2018. It wasn’t a very Happy New Year!
Initially I had been booked into my local hospital for a small operation in the New Year to remove the abnormal cells (a “polyp”) but this was cancelled when my cancer was diagnosed. I was then booked in for a laparoscopic (key-hole) hysterectomy in my local hospital.
Further tests were conducted (CT scan/ MRI scan/ X rays) which showed that the cancer had actually spread to my pelvic and para-aortic lymph nodes which staged my cancer at Stage 3C2. This meant that I couldn’t have surgery at my local hospital after all and I was referred to the Queen Elizabeth Hospital in Gateshead which is the Northern Gynae Centre of Excellence. It also meant that I would need to be treated with surgery, chemotherapy and radiotherapy.
Whilst waiting for surgery I went into googling overdrive to find out more about my cancer type and treatment options. I came across Womb Cancer Support UK and started following the posts. One post mentioned the “Canceractive” website and forum which I started following too. I purchased a book called “Everything you need to know to beat cancer” by Chris Woollams and started changing my lifestyle to maximise my chances of becoming cancer free. I also got a “Personal Prescription” from Chris Woollams to fine tune what I needed to do. I changed to the “Rainbow Diet”, ditched sugar; ate organic food wherever possible, took supplements including probiotics, walked every day, got more sleep, and eliminated stress wherever possible. There was also guidance on how to manage chemotherapy and radiotherapy effectively which proved to be very important (not necessarily what the NHS would advocate though!)
In February 2019 I was booked in for a radical hysterectomy at Gateshead which included removal of womb, fallopian tubes, ovaries, head of cervix, and the omentum (fatty layer under the diaphragm as well as pelvic and para-aortic lymph nodes. The operation was planned as keyhole surgery but with the possibility of a larger incision as necessary. On the actual morning of my surgery, I was informed by the Clinical Lead that there was a possibility that I might have two primary tumours and that ovarian cancer may be present too so I was being prepped for possible bowel involvement and had to give consent for a stoma should it be necessary. As I was wheeled into the theatre waiting area five hours later, I was informed that I was having a different Consultant, a different Anaesthetist, a different operating theatre and a different operation! So I had to give my consent all over again…. This time I was definitely having a major operation with a vertical incision. This was a real low point and I felt so vulnerable in that moment as my cancer journey was ever changing and getting progressively worse. However, I was confident that I was in the right place for the surgery, I was fit as I could be for the surgery having prepared well, and that I would have a positive outcome. The surgery took five and half hours which scared my husband and son witless as they thought it would only take 3 hours, but I am glad to say that the surgery went very well and there was no Ovarian cancer to worry about too. I woke up able to wiggle my toes (no paralysis from the epidural) and no stoma bag!! I recovered from the surgery really quickly and was allowed home after 4 days with a very neat scar!
In September 2019, I started 25 sessions of radiotherapy to my whole torso at my local hospital although my treatment was supervised by my consultant based in Newcastle. I felt sick on my very first treatment and was informed that I couldn’t possibly be feeling sick as that side effect doesn’t start for a few weeks and they suggested maybe I was just worried? Over the next few weeks, my side effects became increasingly severe and the local staff continued to ignore what I was saying and refused to examine me. I self-diagnosed “severe radiation proctitis” and was so concerned that I went to see my GP. He agreed with my diagnosis and said that I was very close to needing a colostomy bag as the damage was so great to my lower colon/ rectum from the radiotherapy treatment. We researched the best practice treatment regime to repair the damage and he wrote a letter to the hospital staff to advise pausing my treatment and explaining what medication was required. The next day it took me hours to finally arrange to get the prescription from my local hospital that I needed to heal the damage. I chose to stop radiotherapy treatment at this point. I completed 19 of the planned 25 sessions which didn’t make my Radiotherapy Consultant very happy but I didn’t want to risk further surgery arising from the treatment itself.