My Journey, as promised!

My Journey, as promised!

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

34 Replies

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  • Thank you Margaret love x G x :-)

  • Thanks G!

    M

  • Well must say I admire you Margaret you have gone through so much and basically on your own. I am lucky I have a husband who although he needed a bit of coaching to start with re the housework he is doing ok now. Must say he did a lot when I fist came out of hospital. Its been 6 weeks now and I am managing to do things myself. You are doing so well and if I ever get to 70 I will think of you maybe you will still be riding your bike somewhere.

    Keep strong not only for yourself but to give hope to all the other ladies on Ovacome now and in the future. Maybe we should all start another BLOG "THIS IS MY LIFE" BC and WC that is Before cancer and with cancer. Although a lot of us will remember WC as all those trips to the loo when we had to pass water so frequently. I remember at work I would be in the middle of serving and hopping about just wanting a wee.

    Look after yourself and long may you ride.

    Love Babs x x

  • Weeing ..every ten minutes ...could not go more than that .....

    It was very differcult to go anywhere .... and at school last year Mrs Buck was in the toilet if anyone asked ....

    Love Jan xxx

  • Oh Babs! How awful, the weeing I mean!

    I assumed that was age as well! Combined with the fact that I drink at least 2 litres of liquid every day (most of it non alcoholic! LOL). Actually coping alone is not as bad as one might think. My attendance allowance allows me to pay my lovely friend Ruth to do the things around the house that I still cannot manage and I do not have to worry about a husband getting upset and feeling squeamish! My daughter and sister have been great and I have a very wide circle of fantastically supportive friends - we call ourselves FNT and if you want to know more about them google FNT York! they have been a tower of strength over the last few years visiting, taking me shopping helping to cheer me up when I am down and just generally "being there" for me.

    Love M xxxxxx

  • Thank you for sharing your experiences and thoughts with us, Margaret. Great attitude! I am sure we will all wish you a long and happy time the clear, so you can pack in many, many more fun experiences. Also, as time goes by, there are newer and more interesting developments in OC treatment, so the present situation doesn't necessarily represent all that is to be. Long may you continue to be our friend and voice of wisdom on here, Margaret. Blessings and love to you

    Wendy xx

  • Margaret it's so interesting to hear the whole story of your cancer journey. I'm sure it will be a great help to many of the newbies.

    Hope you manage to keep the disease at bay for many along year so you can continue to be one of our Ovacome pillars!

    Lots of love

    Linda xxx

  • I'm in awe. Such strength...

    Sue

    X

  • Thank you for writing about your journey Margaret. It is so inspiring, insightful and full of wisdom. Here's wishing you many more healthy and happy years.

    Love

    Mary xx

  • Thank you for sharing your story with us Margaret, it is truly inspiring and made me laugh in parts. Carry on as you are and stay happy, positive and in control.

    Love Linda xx

  • Thank you all!

    Most especially for your support!

    I keep hoping that, at the next recurrence there will be chemo as effective for my cancer as carboplatin but which I am not allergic to! So far I havr found this journey fascinating! I have just told my GP that, if he has any patients likely to have colostomies I am more than happy to let them come round and see my equipment and talk about the impact! The stoma nurses are excellent but they are stretched, mine covers most of N Yorks! Sometimes just meeting someone who has been there and coped can help!

    I just hope I can be of use to others!

    Love & more thanks!

    Mxxxxxxxxx

  • Dear Margaret ....

    Saying you feel very positive and in control of your life will give so much hope and strength to those now starting out on their Journey .

    Thank you xxx

    Love Jan xxx

  • Hope so!

    Love M xxxxxxxx

  • Thank you for sharing your story with us, it is so painful at times to relive past events, but we all have so much in common. It is important not to feel alone, love Diane xxx

  • Hi Diane! indeed it is! Mx

  • That story of your journey is great!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • Thanks! M

  • Hi Margaret

    Thank you for being able to tell your story- we've not met yet but I do so feel that I know you.

    Have a good weekend!

    Love

    Anne xx

  • Thanks Anne!

  • Thank you Margaret for sharing your story, it made me cry (in a good way:). Your story makes me think of those people who deal with it a couple of times then it's gone, and now you've had a year free maybe it won't come back.

    Jane

    x

  • If it doesn't something else will! LOL!

  • Dear Margaret

    Your story was really inspirational because it shows that, if we are determined and have a dose of pragmatism, we can get on with our lives post-diagnosis and it will still be full of wonderful things.

    I think your offer of being available for people to talk to if they are anticipating a stoma is such a good idea. Nobody talks about this so it becomes a 'big deal' and something we all fear. Just reading your blogs and comments since I've joined the site is an example to us all that we can cope with whatever this disease throws our way and move on and continue to enjoy all the wonderful things life has on offer. I recall how it was a challenge for you initially but so good to hear now that you can progress to a cap fitting rather than bags which are problematic. I'd encourage anyone who is worried about a colostomy to contact Margaret.

    There was an article in the Ovacome mag about exercise. I'm impressed how you keep up with your cycling, aqua-robics and the gym. I have no doubt this is making a huge contribution to your general feeling of well-being and happiness and also giving you the best chances of a good long second remission.

    with love xxx Annie

  • Regretably not much exercise at present except for walking daily! Not feeling well today! Lack of sleep & cutting back on painkillers!

    M

  • thanks m for sharing your story keep well xx jan

  • Thanks Jan!

  • Hi Margaret

    Thank you for sharing your story. I love coming on to this site and being uplifted by the wonderful attitude of the ladies on this site. I am 2 years into remission from stage 4 and living life to the full and trying to forget but every now and then I get a 'moment' and have to snap myself out of it. It's stories like yours that help.

    Love and hugs Chris x x

  • Well done Chris!

    That's the spirit! I get those moments too but (bolshie cow that I am) I am determined that they are not going to win! You give me encouragement too, in that 2 years remission after stage 4 diagnosis is really bucking the stats! Keep it up!

    love Mxxxxxxx

  • Hi Margaret

    Thank you for your vivid account of what you have gone through. I too admire your attitude.

    Have to add - what a lovely photo! Keep up the boshieness

    Monique x

  • Inspirational, Margaret!

    Isadora

  • Not compared to what some of you have gone through!

    M

  • Hi Margaret, it was interesting to read your story. In June this year my mum got diagnosed with Ovarian cancer 3c also, she has gone through the same process, 3 chemos, a debulking op and a further 3 chemos. She has just had her scan which the oncologist said showed no sign of cancer. Her last CA125 count was 16, and at the start it was 12,000. So really its great news, and we are just hoping that like you mum will beat the statistics, and this horrible cancer will be beaten, whether it comes back again or not. x

  • Each win is a small triumph! I do not think about beating it just about making the most of each period of remission. I will deal with the next recurrence when it comes in whatever way seems apropriate at the time!

    Meanwhile Good Luck to your Mum! Those of us who secrete CA125 are lucky because we get early signs to trigger the scans and such before the B gets too big or too extensive to deal with!

    Love M xxxxx

  • Thank you Margaret - I am at the beginning of my journey but reading about yours has helped put things in perspective, irritatingly my ca125 does not show and although diagnosed at stage 4 it was only 9 pre op.

    I hope you continue to shine you are an inspiration Amanda x

  • Good luck Amanda!

    It is so much harder if CA125 is not a good marker!

    Love M xxxx

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