Bowel Cancer - My journey so far

7 minute read time.

I was on holiday in Bulgaria and got constipated. That's how it all started. After 5 days of being unable to go to the loo I went to see a doctor who took blood tests said I had peritonitis and that she thought it was from my appendix and was taken to hospital for an emergency op. When I got there they scanned me and said they thought it was a problem with my overies and kept me in. I had taken a laxative that morning which worked during the first evening in hospital. They gave me high dose antibiotic for 5 days, then decided to operate. I didn't know what I was letting myself in for. I woke up on a different ward, managed to lift the covers of my stomach to see a mass of dressing which appeared to cover the whole of my stomach and abdominal area. I later discovered they had cut me accross the bottom to get to the ovaries, then noticed an abcess and cut me up the middle to just under the breast bone. I also had a two inch cut on eash side where they had pur in drains. The translator explained things as best he could and said there was nothing nasty there, just an abcess and could not tell me where the abcess was or what had caused it. I was in that hospital for just under 5 weeks in total and could not wait to get home. I flew back to Britain and saw my GP as soon as I could. He could not believe the mess they had made of me. I said I wanted my bowel checked out as the constipation had been the start of it all and I had a bad feeling about it. He agreed, but as Bulgarian hospital had said 'no cancer' I was not an urgent referral. At the end of June 2007 I was seen in the clinic, biopsies were taken and an appointment made for colonoscopy. When I went for the colonoscopy the consultant told me I had cancer and faced a major op. CT and MRI scans followed, then the consultant called me at home and said that they were arranging surgery, but that it may take up to 6 weeks for this as he felt the presence of a Urologist and Gynacologist would be needed. My surgery was eventually booked for 5th September 2007. I had cancer in my sigmoid colon and part of my large bowel, part of my small bowel ws crumbling and had to be removed. I was given a permanent colostomy. I had a very large tumour pressing against the base of my spine which had engulfed uterus, ovaries, tubes and damaged the ureters from my bladder. I had a full hysterectomy and the ureters cut and joined with a stent and the tumour removed from the base of my spine. I had a secondary on my liver. I recovered well from this op and started chemo 3 weeks later. The relationship with my ex fiance deteriorated as I got better and he walked out just before Christmas 2007. In Feb 2008 I was referred to Leicester for see a liver specialist who agreed to a liver resection. He managed to do this via keyhole surgery and at my next blood test in April my CA count was within the normal range. If i could have done a double back flip at the time I would have, I was so pleased. I completed my chemo in the June, then had further MRI and CT scans which showed a spot on my liver and a tumour on my lung. My oncologist assured me both were operabIe. I was booked in for a PET scan which showed active cancer cells in liver, lungs and a para aortic gland. Having spoken to the other consultants they did not think it would be curative to operate due to the very large area which had originally been affected and the location of the para aortic gland being particularly difficult to get to, further surgery related risks etc so I have been having more chemo. Third lot of chemo 4th cycle and I've been so down and just not able to stop being miserable. I have always been positive throught this whole thing, but I'm thinking everything just hit me all at once. I've been so busy looking forward and being positive that I've not given myself the chance to feel bad about what has happened and it's all just bottled up. So I've gone to the docs and he's given me anti depressants. Yesterday, I've been to see my oncologist who tells my CA count is back within the normal range. Yippee!!!!!!! She says not to get too excited as I have further CT and MRI scans booked for the end of Feb and that the chemo I am having can hold the cancer back, but will not cure it. I don't care what she says. I feel like I've kicked it's butt for a second time, and if I could do that while feeling so low, think what I can do when I cheer up again. Although I live alone, my family and many friends have been been a great support to me. But the one who'se there for me every day wagging his tail and wuffing is my dog Bobby. He's helped me build stamina as I have to walk him and he seems to know when I'm having a good or a bad day. He has been a godsend. So, I have one more chemo to go on this cycle, then scans end of Feb and results March. I'll keep you posted.

 

Sorry, I've not updated this blog for ages.  Since the last entry (above) my amazinbg oncologist persuaded consultants to operate and in August and Sept 2009 I had surgery to resection the liver and remove the affected para aortic glands, and the upper lobe of the left lung removed. I was thought that I did not need radiotherapy. I thin had nearly a year in remission.  Unfortunately, it came back with a vengance in September 2010 on both lungs and liver. Although they were operable, it was thought not to be the best course of action. I agreed with this decision as  it took me a long time to get over the double  surgery they previous year. I asked about the Avastin and the Interim drug. My oncologist knew about the fund but said no directives had been given regarding how to apply, when it would be available etc. I decided not to have chemo at that time, and see how my body would cope on it's own. Then came the news (Via beating bowel cancer website) that the Interim Cancer Drugs Fund would be made available as of 1st October 2010. My oncologist applied and I was given funding for the drug until April 2011. I have had 3 cycles so far of Avastin, Irenotecan and 5fu. I'm due another CT scan mid February, so will let you all know whether the Avastin is doing it's job. 

During my remission I kept busy by setting up a support group for anyone with a Colostomy, Ileostomy or Urostomy. It's called Ostomistics and we meet twice a month at Stanground Community Centre in Peterborough. We had our first meeting in May 2010 and now have more than 30 members. So if you live in the Peterborough area and have a stoma, or think you may have one in teh future, come along and meet us. We're a friendly bunch. I've had my colostomy since Sept 07, but have learned so much from the group, it's been fantastic and is a great support to all.  We also have a facebook group with over 60 members. I did a 1 hour radio show for Peterborough FM in June 2010. The aim was to raise public awareness of life with a stoma. Then in September I was interviewed by Sky News about the Cancer Drug Fund and went to London courtesy of Beating Bowel Cancer for the launch of the 'Wishing Wall'. In October I was on the One Show, again talking about the Cancer Drug Fund. Then went off to Benidorm with my good friend for a week of laughter before starting my  current treatment. 

I'd love to hear from any of you who are also having Avastin. 

 

Anonymous
  • FormerMember
    FormerMember

    It's not really the surgery, I am terrified but I want rid of this tumour, but I find hospitals so difficult. They do what they can for me, I have a room on my own, they close all the doors so I can't see anything scary when I walk in but yesterday I couldn't even make it to the room. I had to be talked in from the car park which took half an hour and the n I cried for 3 hours. That was just to have chemo. They didn't give me another appointment as they said I am too distressed by it so I may just have the tablets. The next chemo was the last before scan and surgery but after that they will have to do chemo at home I think. I tried so hard to be brave but after 2 chemos I ran out of courage.

    I read so many stories of people's bravery on this site and I feel bad about the way I act but it's a phobia and I have a difficult time controlling it.

    Thanks for your good wishes, hope you are feeling OK.

    Love Jen XX

  • FormerMember
    FormerMember

    Have you considered hypnosis?  I may have forgotten how you came to have the hospital phobia, but hypnosis is very good.  I went to a friend who was a member of the Institute of Curative Hypnotists to get me through my driving test.  Since he went for the set and gave me confidence, I passed the test (at the 17th attempt), and went to university and got a degree.  

    It all went back to a GP who I never forgave, even after the hypnosis, but I have forgiven him now for being insensitive and fairly incompetent.  He's pushing up daisies now.  

    Hello Heather

    You are courageous!  How long was this holiday in Bulgaria?  Wouldn't it have been better to lay off the hardboiled eggs, and wait until you got home?  It seems you were pretty bad before you went though.  

    I knew a year before my diagnosis that there was something the matter, but didn't take it very seriously.  It was a refusal of a blood donation because my haemoglobin was low.  When I started losing weight, I put it down to more walking because I couldn't afford to use the car.  Then once I got work, I didn't want to have to give it up, so ignored it for 6 months.  I was very, very lucky, because the cancer was only in my bowel.  

    What kind of long haired dog do you have?  I have a medium coat border collie who needs a walk from me every day.

    Rwth

  • FormerMember
    FormerMember

    Briefly as I don't want to bang on about it too long- I had a very bad experience when I was 3 and it was compounded every time I went to the doc or dentist.I didn't know I was phobic until I was pregnant and had to have ante natal care and the baby at home. I had treatment but it didn't work except strangely enough it helped me to do blood tests which I can still do albeit with a great deal of preparation but that was after 4 months treatment at a psychiatric hospital. After that I stayed healthy until I needed a hysterectomy. This time I did have hypnosis, a surgeon who was a friend and lots of arrangements to make it easy- my husband stayed all the time and I was allowed home after 2 days.16 years passed without the need for hospital and then I got bitten by a mosquito, got cerebral malaria and ended up in hos for 6 weeks with multi organ failure. I know I am lucky to have survived but the hos was dreadful and the nursing "care" appalling. So I am almost back to square one, I am having cognitive hypnotherapy at the moment  but I've only had 2 sessions.Maybe that will make it easier. Compared tothe Bulgarian experience it sounds simple.

    Ruth, you were lucky that the cancer didn't spread. I had no symptoms until mid October, was trying to lose weight and couldn't , even by going to the gym 3x a week, I still go but only twice now as I don't have the time. I had a quick diagnosis, about 7 weeks from first going to the docs and I went to Africa in the middle to do a bit of teaching for a charity I support but my cancer had spread to liver and lung. My friends still find it difficult to believe as I had hardly any symptoms and even the chemo has little effect on me and I still work. We are all different I suppose.

    Thanks for the suggestion anyway, you are kind to think of me.

    Love Jen XX

  • FormerMember
    FormerMember

    More good news - MRI and CT scan results show that the tumour on my lung has shrunk, tumour on liver has remained the same but not worried by this as last PET scan showed no active cancer cells there, and para aortic gland did not show on either but this only showed up on PET scan last time, so am to have another PET scan in the middle of May and will get the results in June when I come back from holiday. My CA count is still within the normal range so it's all good. I'm having no more chemo for now and must say I'm really looking forward to having no hospital appointments for a couple of months YIPPEE!

    I'm in a much better frame of mind now than I was when I posted the original blog. I think I had a bit of the January blues which I let get out of hand for a while. Anyway, I chucked the anti depressants and started counting my blessings instead. I've booked a 3 week holiday in Spain (may not have been a great idea as chemo has made me sun sensitive) with my youngest daughter and my 2 grandchildren. We are all really looking forward to it.

    In answer to Ruth's comments I can honestly say I did not have any symptoms prior to the constipation in Bulgaria. I'm sure I had cancer before going to Bulgaria, but my gripe with them is that they said I did not have cancer knowing full well I did. Had I not followed this up myself when I got back to the UK I certainly would not have been here now to tell the tale. But that's all in the past and is best left there.  My dog 'Bobby' is a Lhasa Apso. I put a photo of him on here when they were doing the dog pet week. He's a real sweetie.

    I hope everyone continues to feel well and thanks to all of you for your comments......Heather x

  • FormerMember
    FormerMember

    That's great Heather, you have been so brave. I am really pleased for you to have such good results. I was offered anti depressants but decided to count my blessings too. I've spent time in countries where there is no medical treatment so I am privileged to be here where I get good treatment - I hope.

    have a lovely time in Spain and tellus about it when you get back.

    Lovve Jen XX