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Post by suze on Oct 13, 2010 20:19:19 GMT
welcome in here, xgirlpilot ..
"Got a new GP" must be the severest shorthand for how you felt about that .. these tales of doctors ignoring signs are soooooo depressing ...
I hope your reduction and surgery goes all according to plan ..dunno if you've had time to read around yet and see that I'm a bowel cancer patient too ... 48 when it started, 52 now
I also had chemo tabs at home and radiation for six weeks ... are those side-effects you list here what you actually experienced or what you fear? I didn't suffer too much with the hands and feet at that stage .....tho the constipation when the radiation got going was something quite else for me! The treatment inflames the area and in my case that virtually closed the remaining gap .... OOUCH!
I agree with you about the Anti-cancer book, and hope you might join in here, and maybe post your techniques for managing the diet, etc? I'm very happy for ppl to post wherever they want in here, if the site suits you ...
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Post by suze on Nov 6, 2010 9:08:38 GMT
Seems like this programme is working for me ..
yesterday my six month scan showed a small (very small) lesion where the previous tumour had been on lung ... onco is holding off treatment to see if it grows, he's not worried about it at the moment
He will scan again in January, so a few more months out of treatment for me, and we're planning some sun for Christmas!
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Post by xgirlpilot on Jan 13, 2011 17:08:12 GMT
Hi again, Suze... Well, I finally had my surgery - 12 inches of colon removed, and the surgeon had to cut it open to make sure he'd gotten the tumor - it was completely healed on the outside, and shrunken from 8 cm to 1.3 cm inside. So the radiation and chemo (and my lifestyle changes!) were very effective. Not completely effective, tho - 2 out of 13 lymph nodes tested positive for cancer, another 5 showed signs of killed cancer. So now I'm waiting for a porta-cath to be installed on my chest, and I'll start 5-FU and oxyc?? something or other as soon as it's installed. 8 cycles, 2 weeks each cycle. Not looking forward to it, but anxious to get it over with. I managed to dodge the colostomy bag, after all. I went into surgery completely prepared for a permanent stoma, and woke up without one - very lucky me! Also had a complete hysterectomy, the hot flashes since then have been astounding. The recovery from the bowel surgery has been difficult - the docs don't tell you much about what to expect. They don't tell you what you can do about it, either. Luckily I have a Traditional chinese Medicine doc who gave me some herbal preps that have really made a difference. Plus a tub of yogurt with flax oil in it morning and night really helps! Hopefully won't take too terribly long before my bowels and I are friends again... Thanks for listening...
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Post by suze on Jan 14, 2011 9:28:21 GMT
Hiya -- glad to hear that things were pretty good for you with the radiation treatment, it is amazing .. and good you avoided a stoma too .. YAY My ovaries were taken out with my surgery and I had severe hot flushes -- so I know what you mean .. my surgeon advised me to get oestrogen patches .. I love them! it is worth asking about at some point .. tho my GP is quite conservative about them cos they might slightly increase risk of breast cancer, and heart issue I dont have any other risk factors to compound the risk and I think it is more than worth it to be comfortable! She made me read this handout and "ask my oncologist" but he isn't bothered !! and my surgeon says there is some reserach to suggest that oestrogen is protective in bowel cancer, so <shrug> I had 5 FU and the poxy-oxy .. good luck with that, and come back to compare notes .. my next scan is now only two weeks away! My wife is very certain that the anti-cancer regime will be doing the job .. let's hope so .. otherwise it'sll be back in treatment .. you will probably find the chemo plays havoc with your bowel action too .. maybe fluctuating from one extreme to another .. mine certainly does when I am in chemo ... my personal preference is to keep it loose and take that ghastly laxative they offer ... but I had a stoma when I was on the oxy-poxy regime, and my second lot of chemo was different (included one called irinoticin and very constipating with a functioning bowel ... ) horrid ... all the best x
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Post by anne on Jan 20, 2011 21:10:07 GMT
I met my new GP just after Christmas, and he read the information my old GP passed on about myeloproliferative disease and over production of platelets, and how I would be put on medication (a form of mild and permanent chemotherapy) at 60, unless my platelets shoot up very high indeed, when they will do it at once. So he cheerfully observed "you've got 15 months to go then" which made me feel like I must take every advantage of enjoying myself until then ... but then i ask myself why on earth I should assume it will be awful - it won't be anything like the cisplatin etc etc I was on for the breast cancer.
As for my new dentist - he looked at the stuff about platelets and blood clotting and said, "so you are at greater risk of a, errrrm, ummmmmm, er, blockage?" Yes, I replied, they've told me I could have a stroke, and smiled happily. If this doesn't ensure he is a kind and gentle dentist then nothing will!
This is really a little warble, a muse on the hiatus my life is in from the medical point of view ... my own breast cancer has gone, I'm considered cured, and I feel wonderful, I know I have been tremendously lucky considering .... but I know there will most likely be other medical stuff to confront in the reasonably near future. I do feel as though this year, next year .. in my lovely new location, new opportunities, acquired wisdom ... these are most certainly a gift and once that can't be wasted. Maybe this is my time of life to shine out.
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Post by Mark on Jan 20, 2011 23:49:02 GMT
Like a star going supernova.
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Post by suze on Jan 21, 2011 8:16:53 GMT
Anne, this is interesting to read. I agree with Mark, think supernova! I know you are resistant to the whole anti-cancer thing, but eating the diet is THE most gentle chemotherapy!
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Post by anne on Jan 29, 2011 18:18:30 GMT
I love this supernova image you have given me ..
xx
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Post by anne on Feb 16, 2011 22:49:38 GMT
Another little warble, and apologise because it is simply continuing the same theme from reply # 34. I still have the feeling of being tremendously blessed, incredibly lucky, a feeling deep inside that something profound is going to happen, and my life will not end until I've done what I came to do ...
..I've just deleted Uriah Heapy creepy apologies and I'm just going to enjoy the feeling while it lasts, good feelings need to be recorded..
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Post by suze on Feb 19, 2011 18:14:31 GMT
That's good anne.
I hope you are right.
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Post by mumndad on Feb 20, 2011 16:53:04 GMT
Bowel test fine results came last Wed.
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Post by suze on Feb 20, 2011 17:35:50 GMT
Bowel test fine results came last Wed. Very pleased to hear that mum, I think one of us dealing with this is quite enough! x
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Post by alison on May 15, 2011 20:16:12 GMT
Hi all, my story or journey as I like to call it began in November '09 when on the plane back from Egypt I spent most of the flight back in the loo for what I thought was a holiday bug, it may or may not have been but that was the start of my visits too my GP. Bloating followed, I had started a strict healthy eating regime the May before and had by this time lost 2.5 stone and was feeling good, but from a size 18 I was back in my size 24 jogging bottoms which were still uncomfortable due to bloating, I had also developed SERIOUS wind problems about a year ago that was rapidly getting worse and incredibly embarassing! I had rectal bleeding, a tiny amount, only occassionly. I mentioned all of these symptoms to my GP who diagnosed IBS and piles, relieved and not wanting to argue I scuttled out of her surgery collected the alloted pills and went home to be cured! Huh! The pills did little and the rectal bleeding continued although still quite mildly. Then one April night I woke up feeling very sick and queasy, couldn't be sick, but went to the loo lots, and noticed rectal bleeding on the 3 occasions I went during the night..... I'd never had to pass a motion in the night before let alone 3 times and the blood worried me as my husband had been seriously ill a couple of years previously with Ulcerative colitis, so of course I was convinced I had something similar! The queasiness by this time was replaced with a terrific pain in my side just below my ribs and I had very bad backache, I hadn't slept all night and it wasn't getting any better, so persuaded my husband to take me up to A&E. There they diagnosed piles (again, and this time they even examined me) and gall stones. I eventually saw a specialist about the gall stones and he noticed that the A&E Dr had mentioned the rectal bleeding on arrival, he asked me about it and I said it had returned to it's normal pattern of just a bit occasionaly on the loo paper. He hummed and ha'd a few times and said that although he was 99.9% sure it was piles he was sending me for a colonoscopy just to make sure. The date for it arrived for June 19th 2010 the anniversary of my Mother's death 2 years before, it seemed an omen and something I didn't feel I could cope with and was about to cancel it, when an iota of common sense crept into my brain and said 'Mum would say don't be stupid - GO!' So on a bright Saturday morning my husband Bob drove me to the hospital, had my scan and was told about 20 minutes later that I had cancer, had 2 tumors, 1 in the rectum and 1 at the far end of the ascending colon, as far away from each other as was possible to be! I would need radical surgery and an ileostomy. It was all said in one breath, quite a lot to take in when you think you have a mild case of piles! Eventually had a CT and MRI scan which showed the cancer fortunately had not spread , but I had 2 nodules on my lungs that were so small they were of indeterminate origin. Next came the visit to my surgeon who agreed with me that I would need the whole of my colon and rectum removed, I had decided on this option as I read that when you have more than 1 tumor the possibilities of it returning were high, so the best possible result was the removal of the whole of the offending organ! My husband had had his removed for his Ulcerative Colitis 3 years before and was living comfortably with his ileostomy now, doing whatever he wanted and fully returned to work. I decided to do the same I was fortunate enough to know all there was about ileostomies and they did not hold the horrors for me that they do for most people, in that I was very fortunate! My son was getting married in August and my surgeon decided that surgery could wait until a week after the wedding, my gallstones unfortunately did not agree with him! One week exactly prior to the wedding I was again rushed to A&E in excruciating pain, this time a gall stone had got lodged in my pancreas and I now had pancreatitis, was not allowed to eat or drink for 3 days and was put on a drip, was unlikely I'd make the wedding. My consultant with a twinkle in his eye said I was greedy enough requiring a 2in1 operation already ( having 2 tumors removed) and now he was going to have to do a 3in1 as he was going to have to remove my gall bladder too, I asked if he could do a 4in1 and do a tummy tuck as well, I won't repeat what his reply was! It was agreed I could go to the wedding as long as not one iota of fat passed my lips! The wedding on August 28th 2010 was a very emotional affair as you can imagine, but very happy. A week later on September 2nd I was back in hospital for my 3in1 op that was performed by key hole surgery and took 6 hours. I was put on the advanced recovery programme and despite a tummy bug I went home 9 days later, made a very fast recovery and was going down a zip wire in Wales 7 weeks later. Then came the follow up visit to my consultant who told me they had found affected lymph nodes on both tumors and although they thought it was contained wanted me to go on a preventative course of 12 sessions of chemo - Oxalyplatin and 5FU. I started this on December 2nd 2010 the day Kent saw the worst snow storm since 1987. The 10 mile drive into hospital was horrendous, as all I could think of was what if when we came home that evening we got caught in snow drifts and I had to walk miles after chemo - had no idea what I would feel like - also wearing the chemo pump containing the 5FU - had no idea what this would look like or how big it would be at that point! Oh boy! The ideas your mind plays on you especially in the wee small hours! Anyway after 3 sessions of chemo I saw my oncologist for a review when he told me that unfortunately the scan I'd had prior to chemo had showed up mets on my liver and lungs, the 2 that were originally there were MUCH bigger and I had loads of them on both the liver and lungs, NOT what I'd wanted to hear, especially as I'd gone on my own, just thought it was a review of how I was getting on with chemo, felt very angry, had convinced myself that I was one of the lucky ones who'd been caught early and here was I talking to a McMillan colo-rectal nurse ( whom my oncologist had speedily passed me on to) telling me that some people have quite a good quality of life for about 5 years! Thanks a bunch, I'd bargained on a lot more than that! I'm 58 and reasonably active! Anyway I coninued my chemo for another 3 sessions then it was halted and I was scanned again and that horrible wait before seeing the oncologist, that keeper of your fate. I insisted on my husband coming too this time, didn't think I could handle any worse news on my own this time without hitting someone if they came out with some crass statement! This time the news was good, all the mets on my liver had gone as had all but the original 2 on my lungs and they had reduced in size! Boy, was I relieved, the oncologist actually smiled and said well done, what I'd done exactly I don't know I told him, it was his expertise! So now I have just finished 11 of 12 chemo's and have my last one (I hope) on May 26th, then get scanned again and see my oncologist for the dreaded results on July 6th. I hope and pray the results will be in my favour, but I am well aware of the twists and turns of this disease, so I await the results with baited breath. During my journey I have remained ever positive, refuse to believe those who tell me that I may only have a few years and am a great believer in thinking that positivity alongside lifesaving treatments is the best way ahead and that one needs the other to work most effectively. I have been accepted as a patient voice for the charity Beating Bowel Cancer and am awwaiting news of training to become one of their Health in the Workplace talkers. I am also working with the hospital I am treated at talking to patients who are newly diagnosed with bowel cancer, but are having difficulties coming to terms with it and also with stoma nurses showing people that stomas are not the horror that they believe and encouraging them to go ahead with surgery. This has been great therapy for me and given me a newly found confidence. I want to be actively involved in increasing awareness of the symptoms of this dreadful and little talked about disease, the silent cancer and have already held 2 awareness days. My greatest passion is to talk to GP's to tell them they are not diagnosing quickly enough, they do not ask the right questions, it is too easy to pass symptoms off as IBS or piles, most of them still think of it as an old persons disease, when we increasingly hear horror tales of young people in their 20's being left too late in their diagnosis and sadly losing their battle for life before it has really begun. Thank you for reading my story, Alison
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Post by suze on May 16, 2011 8:50:13 GMT
Hello Alison, thanks for sharng your story.
I hope your outcomes are good in your next scan. I have one due again soon, and could just curl up in a cornere for hour and jsut cry and cry atm, I am so full of fear .... though if the news is bad again, I will just deal with it as I always do, I imagine!
I guess you found this forum from my link in the Bearting bowel Cancer forum?
Good for you on taking on a patient's voice role. I think it is true that we help ourselves by keeping acitve and expecting thigns to be OK .. but just a few days b4 a scan, I find that hard to sustain, and my fear is the elephant in the room at the moment.
I hope you will also read the Anti-cancer book. The nutritional advice in that is very intersting and I find it helps me to control my weight.
You mentioned your size in yoru post .. have you got bigger during your chemo? I did, both times I had treatement I put on weight, even though I wasn't eating very much due to nausea for days on end! .. I guess the steroids and the lack of activity are enough to pile on the pounds ...
I like the look of the new bowel cancer forum, perhaps I should put up a thread of useful links in here .. or in there .. or both!
x
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Post by alison on May 17, 2011 11:20:36 GMT
Thinking of you Suze for your next scan results, it's the worst time, you're frightened to be optimistic and frightened to be negative... no-mans land is a very lonely place. Yes, found the forum through the link from Beating Bowel Cancer forum. Yes, must read the anti-cancer book, have read a lot of your threads on good foods to eat, many of which I do eat, but maybe I should increase the quantities! Went to my local Sainsbury's yesterday to get Ghee, but none to be found, will try Asda today, unfortunately we have no Indian stores near us to get it there, but I will persevere! Yes, my size is fluctuating, I'm lucky in as much as I don't get nausea, the steroids make me ravenous tho' and I crave the wrong foods then, mostly carbs, cake, bread etc. Have put on 2.5 stone since having surgery and chemo. I am very active atm, the steroids also make me very hyper, I can feel tired in my head, but my body just wants to keep going and at times when meeting friends I can talk for England, most embarassing as I know I'm doing it but can't stop, fortunately I have good friends who find it quite amusing! Excess energy I put into baking and make around 80 scones, cakes and biscuits for my chemo unit each fortnight as well as filling my freezer for when I have a busy chemo/awareness week. One side effect I have is a very dry mouth almost permenantly, which is worse at night, it feels permenantly burnt as if I've just drunk a cup of tea straight from the pot! Have the saliver spray, but that doesn't do much, have tried pineapple, again not much relief, peppermints seem to be the best, as they also take away that metallic taste, but not good for my weight or teeth which also seem to be suffering during chemo! Still only one more session of that to go, but what next? My thoughts are with you for your next lot of results and kick that elephant in the corner for me! Alison
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