Dear All!
I promised an account of my journey so far to help, if I can, others to put this awful condition in perspective so here goes!
In 2009 I was approaching my 69th birthday and enjoying life working 3 days a week for CAB. I was running an outreach centre twoo days a week and overseeing the employment rights advice given out by the volunteers. I had some problems with bloating and flatulence and felt a bit tired but I was managing a 6-8 mile walk on a monthly basis and regularly cycliung 10 miles to the gym and back and taking 5 aquarobics classes each week. I was also looking forward to my holiday win France with Cycling for Softies.
Just before I went off on holiday I noticed that I was not able to eat as much as previously but I thought nothing of it. I had seen my GP and neither of us took my symptoms particularly seriously, probably a touch of IBS was the conclusion.
Once in France I found that I was not as fit as I thought I was. I managed the 20km each way on the first day but, that evening I was unable to manage more than a few mouthfuls of the delicious dinner that was laid on.
The second day I had trouble keeping up on the bike. As it was heavier than my Dawes Sonoran and had only 6 gears compared with the 24 I am used to at home I blamed the bike.
The bloating, however, got worse and, while I could usually manage some bread and coffee at breakfast by dinnertime I could not eat more than a few mouthfuls and I was having to leave the table because the flatulence was becoming embarassingly malodorous and noisy and, of course totally uncontrollable.
I returned home over the bank holiday week-end but, luckily, by phoning from France I had managed to get an appointment on Tuesday 2nd September with my GP. I told him I was feeling distinctly unwell and he gave me an internal. His conclusion? "I think you have a tumour but you are eligible for the fast track". I felt totally devastated, I was not expecting this and I had no-one with me as I live alone. I was given an appointment with the colo-rectal consultant for a sygmoidoscopy on the Friday and my sister dropped everything to come with me. That was when I got the "there's some good news and some bad news! You have not got colon cancer but there is something outside the colon!". At some point I had my first CA125 test and later discovered that it stood at 11,000! The following week I had a CT scan and a week later I saw the gynae surgeon and was referred for a biopsy. I was also given a drain which relieved the pressure on my abdomen and I lost 12lb in wight overnight! Wonderful!
That was when I got the devastating news that I had Ovarian Cancer. My surgeon, however was, and still is, fantastic. He told me I was stage 3c which meant that it had spread beyond the pelvis into the abdomen. As far as he could see there were no other organs involved and, at this stage, the cancer was treatable but not curable. He simply said that I would need to learn to live with it and treat it like having any other chronic illness such as diabetes. That, very matter of fact approach, has stood me in good stead. My lovely daughter, my sister, and my son, none of whom live near, took it in turns to come with me to clinic and chemo in Leeds. I had 3 cycles of Carbo/taxol and, as soon as my hair started falling out, I shaved my head. My son took me to get my wig but I only wore it 3 times, preferring crocheted juliet caps and elaborately tied scarves. I went exotic!
I had a few bad moments and remember my daughter and I clinging to one another and howling outside the lifts in the very elegant atrium of the oncology unit at St James Hospital in Leeds.
My son and his wife sensibly told their boys, then aged 10 and 7 that I had cancer. They were fascinated by my bald head and thought me weird when I threatened to get a face painted on the back of my head and look like that character in Harry Potter!
In January 2010 I had my debulking op, having noticed that the tumour in the omentum, which they had biopsied, and which I could feel, had shrunk from 2cm by 1 cm to less than the size of a pea. The op got "everything visible" and I was home within 5 days. The following week my sister came to take me for chemo 4. I had been neurotic, since starting chemo, about the risk of infection so did not worry too much when I started to get bad pains in the area of the scar. My chemo was delayed because my white blood cell count was up but no-one could find any source of infection and my temperature was normal. Not having had any major surgery since my appendix was removed in 1955 in the Hoylake equivalent of The Royal, I did not realise that pain on making any kind of move was not normal.
My sister had to get home and I was not getting over the chemo as quickly as usual so I went home with her. We arrived at her house in Wallasey and, as I got out of the car I felt a rush of warm liquid fill my knickers. I rushed to the loo to find a disgusting mess!. My sis rang NHS direct, who told me to go to A&E as it was sunday. I told him mnot to be stupid, I had just had chemo and was not going to risk infection so I was told to see my siuster's GP the next day. My temperature, meanwhile, was still under 37 so I was not concerned other than feeling really unwell. I saw my sister's GP the next day and got antibiotics. she took a swab for testing and told me to rest and take plenty of fluids. That night my temp reached 38 at midnight so I rang St James' as instructed and was told, go to A&E and they were wonderful. Side room in A&E, immediate IV antibiotics and blood transfusion, and treatment so good that I refused St James' offer to send an ambulance for me. I had a further erruption from the scar the following day but, after a week in a private room in the gynae ward at Arrowe Park hospital I returned home right as rain. I was back on chemo in a couple of weeks and by the end of March there was no further sign of disease.
Having taught statistics I know that being told that only a minority of people diagnosed at my stage get to 5 years means nothing for me as an individual. I was determined to be in that minority. My hair grew back and my children took me to the Opera in Verona for my 70th birthday. I went on a cruise to the Baltic in September 2010 and took my daughter to the town in Portugal, where I spent part of my childhood, for Christmas. I had been having monthly reviews and had even moved to three months when , in January 2010 my oncologist told me that my CA125 was rising. Another CT scan revealed a large tumour in the pelvic area between my vagina and the anterior wall of the colon. Back on Carbo platin but no taxol because of residual neuropathy so, thank goodness no hair loss. This time I did the chemo by myself. Unfortunately I had an allergic reaction to carboplating and transferred to cisplatin. after 4 cycles I felt sick and exhausted CA125 was still raised and the tumour was not shrinking. It was, however operable. It was removed on Dec 4th 2011. Unfortunately it resulted in a non reversible colostomy and I have spent the last year learning how to manage it.
I have learned to irrigate, which gives me control and, very soon, I will dispense with bags and use caps to cover the stoma.
My CA125 is 7, I look and feel great, I was told that, when it comes back as quickly as it did last time then it is agressive and periods of remission are likely to be short. This time I have had a year and there is no sign of it! I am doing as much as I can, enjoying life and, in January I am giving a party to celebrate over a year cancer free. I have steroid induced diabetes but I am managing my blood sugar so well with diet and exercise that, if I had not had the diagnosis and levels of 25 when in hospital, I would be classed as normal. A pity as metformin is likely to slow down the growth of OC cells.
I feel positive and in control of my life. I know it will be back sometime and, when that happens I shall deal with it. I will have chemo and endure the side effects if it is effective but, if it is not I will need to weigh up the effects of the OC against the side effects of the chemo. I am seeking quality of life and, not necessarily, quantity.
This has been a long blog but I hope that it may help some of the newbies to see that it does not have to be the end of the world.
I am 72, live alone having divorced 14 years ago after 33 years of marriage. I have a full and active life and look forward to beating the stats. If I don't at least I do not have Alzheimers, Parkinsons, MS or MND, all of which are degenerative and present the prospects of a shrinking range of activities and increasing dependence on others.
Love to All
Margaret xxxxxx
Follow up
My mum was supposed to have possibly 5-8 litres of fluid drained from her tumor today, but a scan showed no fluid. Is this bad?
Can’t believe it misdiagnosed again now looks as though I also have kidney cancer. 
Just some advice please! 
Para Aortic LN Surgery Update & Question
