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

    Hi everyone, this has nothing to do with cancer, but is so fantastic I had to share it with you all. My eldest daughter, who thought she and her husband could not have children, has just found out she is pregnant. How absolutely wonderful is this? I know it's really early days, but if all goes well I'll have a new grand child in December. I could just burst with happiness. xxx

  • FormerMember
    FormerMember

    I am so pleased for you. It's lovely that something so wonderful can come along and change your life for the better after you have had such a lot of horrible things happening.

    My own good news is that they removed 2 tumours from my liver and one from my bowel 2 weeks ago today. There were clear margins in both cases. Just the one in my lung to go.

    Stay happy. XXX

    Jen

  • FormerMember
    FormerMember

    That's great news Jen, I'm so happy for you and wish you a speedy recovery. Keep in touch and let me know how you are getting on..............Heather x

  • FormerMember
    FormerMember

    Jen and Heather,

    Just wanted to say it's great to hear such good news from both of you.

    Take care

    Jo x

  • FormerMember
    FormerMember

    Sorry, I've not posted on here for ages, but wanted to update you all. But here's my update. I had a great holiday with my youngest daughter and the grandchildren. I came back to the teh scan results showing mets on liver, left lung and para aortic glands. no one wanted to operate on the para aortics and so pallative chemo was the next course of action. I had 6 cycles of Irinotecan, then came the news that my oncologist (the best) had found a consultant who who operate on the liver and remove the para aortics at teh same time. If that op was successful, then I would have the upper lobe of my left lung removed a few weeks later. The ops were successful and I had been in remission for almost a year, then last month brought the shocking news that the cancer had returned. This time in my liver and in both lungs. Whilst the tumours are operable it would not be the best course of action for me. I entirely agreed it would not be the best  course of action as I am still in pain from surgery last year. Further chemo was discussed, and I asked about Avastin and the drugs fund. Although the medics new about the drugs fund, they'd not had the go ahead to start applying. I dicided to hold off on chemo. My prognosis was not good. Then came the news that an Interim Drugs Fund was to be made available as of 1st October.

    My oncologist applied to the fund last Friday, and yesterday I was given the fantastic news that the application was successful and I can have Avastin which I believe will extend my life expectancy. I'm adding this to the forum to let you know that if your oncologist believes there is drug out there which has not been authorised by NICE, there is still a chance you can have it.

    I don't do politics, but feel I should say that in his election manifesto, David Cameron promised £200 million for this fund and has made an interim amount of £50million available as of 1st October 2010. Whilst this is a start, and without it I would have had little or no hope, it will not last long when divided up amongst all of the different regions. So let's hope that the rest of the fund is made available in April 2011 as promised, and if any of you think this drug can help you then 'SPEAK TO YOUR ONCOLOGIST'.

    I did an interview on the One Show yesterday which will be screened on 26th October to hopefully further raise awareness of the 'fund' and of Bowel Cancer, which is seldom seen or heard on national TV. I hope that lot's more people will be applying to this Fund and will be given hope like I have. I start treatment next month and will let you all know how it goes. Again no hair for Christmas, but at least my friends know I'll appreciate a wooly hat........................Heather x