March is Ovarian Cancer Awareness Month, so to recognise this I’ve been speaking with three members of our Ovarian cancer group, and asked them to share with the Community a little about their experiences, and any tips they might have on coping.
If you’ve had any thoughts or an experience with ovarian cancer you’d like to share, go ahead and do so in the comments section below.
'My main difficulty was telling people I loved...I felt guilty...'
Posie:
“My diagnosis came at the beginning of November 2018, and it was a shock. I attributed many of the symptoms I was suffering to the ageing process and long walks with our new puppy. Once diagnosed things moved very quickly as I was on the two-week plan, no appointment should take longer than two weeks from request to seeing a health care professional. My main difficulty was telling the people I loved, family and friends, about the diagnosis – I felt guilty about bringing this horrible thing into their lives. Once I visited the hospital I felt so much better. Strangely being amongst other patients normalised everything and I realised I must take this on and fight back. I changed my diet, and focusing on that helped me feel I was doing something positive to help get through the chemo and for the future. I kept up with the exercise though this was sometimes difficult. I talked to everyone who wanted to ask me about my diagnoses and treatment. Macmillan’s Community makes it so much easier to talk to others without feeling you’re depressing someone.
“After my third chemo my CT scan could not pick up any sign of the tumours on my ovaries or peritoneum, there was no obvious sign anywhere else in the body, my CA125 was down from 400 to 11, I was delighted. I have my fourth chemo today and hopefully I will have surgery in early April followed by two more chemo sessions. It is very early days for me, but I think I have found a way for me to get through this and being part of the Community has helped a lot.”
Hooked66:
“I first noticed an issue when I came across a small swelling low in the abdomen in July 2018. The swelling grew very quick…Next step was an ultra sound which revealed a complex ovarian cyst, then a few weeks later an internal ultrasound which revealed the cyst had grown to 14cm’s in diameter. A CT scan in late-September showed that the cyst was indeed most likely malignant. Surgery was then planned for mid-October where a full hysterectomy and removal of the cyst which had now grown a lot bigger was planned.
“Stage 3b ovarian cancer was diagnosed prior to chemo starting which was a shock…During my operation it was found that the disease had spread to various organs, but most was removed leaving a very minute few 'grains' on my bowel which were left to avoid the removal of part of the bowel, the surgeon being confident that the treatment I was to receive would take care of that successfully.
“6 cycles of chemotherapy were then organised beginning mid-November and have just ended on the 6th of March. At the moment no further treatment is needed, tumour markers have shown to be normal in my last 3 blood tests.
'I found it useful to keep a diary and write everything down...'
“The only thing I would suggest is that everyone's diagnosis is unique to them and not to compare their situation with another person’s journey. I found it useful to keep a diary and write everything down, from symptoms, progress through surgery chemo side effects, and questions that I needed answers to, and the most important thing, try to remain as positive throughout as possible.”
SussexOvarian:
“I was diagnosed May 2014 with stage 3 high grade ovarian cancer which had spread to the peritoneum…My own doctor was wonderful, but the local consultant was arrogant, dismissive, refused CT scans and finally when I decided to have a hysterectomy his last words to me as I was going down to theatre were “It isn’t cancer”. His first words when I finally saw him afterwards were “I’m sorry. I’m so, so sorry”.
'This routine got me through...'
“During recovery days after chemo I found I could not watch television or read much…I tried other things. I bought colouring books (not busy patterns but flowers and landscapes) and I knitted. It was important to get up and walk around even if it was for a few minutes each time slowly around the house or garden. I always had a nap after lunch for an hour. This routine got me through...
“My trick to get to sleep is to imagine I am in the garden of the house I grew up in. I ‘walk’ through looking at the front door, the path, the gate, lifting the latch etc, feeling the wood, down the road and so on. It’s surprising what I can remember. Each time there is more. I usually do the same walk but occasionally change to the rooms of the house, or the garden. Choose a place where you were happy, the innocence of most childhoods usually has less distractions…I only recently found the Community, but I am so glad I have. I already feel less alone and have found answers I needed.”
Diagnosed or affected by ovarian cancer? You might like to join our Ovarian cancer group and talk to others in a similar situation. You can also learn more about ovarian cancer, from symptoms to treatment and support coping, via the Information and support section of our website.
