Bluebell

I looked at this forum a year ago when diagnosed with terminal ovarian cancer which started in a fallopian tube.. the same side that aged 23 I had had an ovarian cyst removed. I am 75 and was apart from arthritis,  otherwise fit, enjoying life with my wee dog in the Highlands of Scotland, lots of friends and regularly visiting friends and family in New Zealand and Australia.

My main sudden symptom was incredible fatigue. As my sister 3 years before had in Oz, huge successful surgery, chemo and radiotherapy for ovarian cancer my GP sent me for a scan and nothing was discovered. A year passed and due to a fall on ice was in hospital and investigated for non painful mass on omentum, fluid in abdomen and vomiting ++. Discharged to GP who concentrated on chest injury and said abdominal probs were constipation. 

Treated for this with disgusting Movicol, eventually began to eat so no constipation. Still vomiting. Ascites in legs feet and abomen after 2 months becoming grosse. GP not interested till I got very angry ..then suddennly CT scan and diagnosed with metastises from ovarian cancer.

The care since then by Highland NHS has been excellent. So much useful equipment as well as being in Hospice day therapy, really fun and wonderful art room and selling our creations. Macmillan provided first a chair and bed handle the most useful things. So many more things and advice from OT's, physio etc.

6 litres of fluid was immediately drained last April and I was suddenly, normal and brain unfogged. Had an indwelling drain in for some weeks which kept fluid down but tumour filled up spaces after a few weeks.

My gynaecologist absoluutely pushed chemo to allay further sympmtoms in spite of me with a terminal diagnosis definitely not wanting chemo. She is definitely in the mode of extend life by any means not quality. My oncologist a lovely man treated me as a fellow professional (a praactiing nurse for 50+ years) explained in detail both sides of chemo. I reiterated NO CHEMO. My sister and then daughter with breast cancer had both recently gone through it with me as support person. I knew enough about chemo!

Since then my health improved from the chest injury and I had a wonderful sunnny happy summer and autumn with people flying from everywhere to see me. My goal was energy and have kept eating and my weight up. I have written a family archive, sorted a million photos and constantly communicated with friends worldwide so every day have cheerful messages about everyone's happenings.

I feel we with a long term terminal diagnosis are the fortunate ones. We get all the fuss and sympathy where people with far more uncomfortable illness don't.

I have had a full life and from the start felt 75/76 was a respectable age to live. I had a great 75th party and have planned a really nice Life Celebration with a tree planting in New Zealand, my second home, a year later.

The trajectory towards my passing has sped up of late. I had 2 weeks in the Hospice while the Palliative care team brilliantly sorted any pain and discomfort. I had been under dosing myself as so worried about constipation. That too was immediately sorted ..Yay!

I have so many useful phone numbers. Help offered from Marie Curie to the dustbin man taking my bins. People come with chat, flowers chocs and gin!

My sadness has been for my children having to go through this and having to rehome my wee dog.

The best thing I did was stick to my guns re no chemo. Ii have had over aa year of quality time to relinquish my  busy life slowly and say all that had to be said. Also hopefully I have been able to start all sorts of people talking sensible about end of life planning. Also that here is TIME after a person dies to be with them. To get used to them in a new dimension.

I hope to die in the friendly happy hospice but if I unexpectedly die at home I will call upon the charity, 'Pushing up the daisies,' the journey home. They advise on logistics like cold packs and enabling time to be with your loved one after death. Not being rushed to a funeral home, however nice they may be.

Spiritually I have total trust that whatever speck of stardust started this amazing world of ours is totally capaple of lovingly putting me back into stardust again..

 

  • Hi there ...

    I feel very humbled reading your post ... there's a lot to be said for respecting everyone's choice ... and being supported in that choice ... weather it's no treatment, or wanting everything offered .. 

    It's always good to find out the % of success with treatment and without .. sometimes as low as 3 % ... so getting all the info and advice .. must make their own decisions... thus having a bit of control, where at times feels like no control ... 

    I like you, are taking every day and grabbing life with both hands ... l had a total right masectomy .. no to radiotherapy because of my very fragile bones ... and yes to tamoxifen ... every one was my choice ... I'd never try to sway anyone ... l was blessed to have a supportive family and oncology team ... 

    So I'm sending you a vertual hug... brave lady ... yes you are brave ... and I hope every day you have left, are pain free, with a hand to hold ... bless ya ... and thank you ... chrissie