Today we launch our support section on the blog with a guest post from a lovely lady called Carole who was diagnosed with Rectal Cancer in her 40’s. Carole’s blog can be found at http://caroleandcancer.blogspot.com
I remember clearly the first time I mentioned cancer. It was back in January 2010 when I was sitting chatting with my friend Jacqui, moaning about feeling under the weather for months now, always tired, headaches and just generally lacking energy. I then told her I also had developed ‘piles’ (hemorrhoids) now, then joking said ‘Don’t worry, I’ve convinced myself I have bowel cancer now’.
We both laughed at my latest dramatic theory and moved on with the conversation.
Deep down though I had been concerned about the slight blood loss I’d recently noticed on tissue after a bowel movement. Concerned enough that I’d googled the symptoms of both hemorrhoids AND bowel cancer – but after reading up I DEFINITELY had the symptoms for hemorrhoids not cancer. So, I put it to the back of my mind and got on with life – working, shopping, cooking, cleaning, washing, ironing, bringing up our son, organising my husband and all the normal day-to-day stuff that takes up 99.9% of our time.
By mid March I felt even more tired and drained than I had back in January and decided to take a week off work to rest and recover completely. It made no difference and after spending my week off sleeping constantly I felt even worse. I then took myself off to the GP with my vague symptoms of extreme tiredness, constant headaches, achy joints, dull pain in my back and slight blood loss. The GP felt I was probably depressed! I did ask if the blood loss could be anything to worry about and was told ‘No, you are the wrong age, wrong weight, wrong diet and wrong symptoms for anything too serious’. She prescribed some suppositories and cream and a certificate to take a further two weeks off work to recover.
Fast forward two weeks and I’m back in the surgery asking again for help to sort myself out. Once again the initial suggestion is that I’m depressed (I think it’s worth me mentioning that I’ve never suffered with depression in the past). This time though I insist that the GP – a locum this time – go through each of my symptoms with me and try to find an answer.
Luckily for me she agreed to do this. When we got to the blood issue she asked if I’d been examined previously and when she heard I hadn’t she then asked me the dreaded question
‘Do you mind if I have a look?’…
Truthfully I did mind but I needed to know now that it really WAS piles and nothing more sinister.
So examination takes place, she’s chatty initially and putting me at ease then suddenly goes completely silent…it’s that sort of silence where you just ‘know’ something is not right. She asked me to get dressed and said we’d have a little chat.
Anyway the little chat turns out to be her telling me that she is emailing the hospital right now and asking for me to be seen urgently as there is a lump in the rectum that she is not happy with – she stresses that it’s probably nothing to worry about, it is rarely serious but just to be on the safe side…….
Just a week later I’m seen by a surgeon at my local hospital, a biopsy is taken and the words ‘probably a malignant tumour’ are mentioned for the first time. OMG! I’m the wrong age, wrong weight, wrong diet, wrong symptoms and I have ‘probably’ a malignant tumour….. in my bum! OMG!
Two weeks later I return for the biopsy report to be told I definitely have malignant Rectal cancer, Stage 3, a tumour the size of a walnut has made it’s home in my bum! I’m totally calm as he tells me all this – only because I’ve prepared myself over the past two weeks to hear the words ‘You have cancer’
Now all I really want to know is: has it spread anywhere else and how painful will it be when you cut it out? Yes, I really was that uninformed!
My surgeon looks very uncomfortable at this point and I know there is something to come that I’m not going to like….but have no idea of what it is. He takes my hand, looks into my eyes and says ‘The good news is that as far as we can tell there is no spread to other organs but….(long pause)…. unfortunately Carole, because of the location of the tumour I have no choice other than to remove the whole rectal area, including the anus, rectum and approximately 15 inches of colon and this will result in a permanent colostomy. At this point I fall apart. This simply CANNOT be happening to me….but of course, it is. I didn’t even know it was possible to remove all of this and leave a person alive!
The hardest part was finding the right way to tell my youngest son. He’s 11 yrs old and has Aspergers therefore I knew I had to be careful with my choice of words (and my emotional state) when talking to him for the first time.
He sat there with quiet tears rolling down his face and said
“Just promise me mummy that you won’t die”
Damn! Not something I could do….I explained that I couldn’t make him that promise BUT assured him that I had a good medical team fighting for me and I would do my best not to die, however I couldn’t promise. He replied “Good! Because if you’d said ‘yes’ I would have known you were lying. No-one can make that promise with cancer, no-one can know for sure and if you’d said I promise then I would have known that you were lying and I wouldn’t have been able to trust you ever again”
I go through a massive range of emotions over the next few months whilst having Chemoradiation in order to try to shrink the tumour before surgery. At this point I’m still considering not having the surgery, I can’t find a way forward to seeing how I can live with a permanent colostomy…oddly enough, I’m not scared of the cancer, I’m scared of the bag! They tell me that if I refuse the surgery they will still provide me with excellent palliative care. That’s a shock – yet I still consider not having the surgery. I ask how long will I live without the surgery, they tell me between 12 and 18 months!
Damn! That’s not enough time – I need to get my youngest through Secondary School first….
My emotions are all over the place, I now cry at the slightest thing, it’s not the idea of dying that is making me emotional just the thought of my life with a ‘bag’…. ‘Bags’ are for old ladies not me, I was 49 yrs old with an 11 yr old son there was no way I could do this.
My son put things into perspective for me when he climbed into bed with me a few weeks before the (dreaded) surgery and said
‘Mummy, are you still upset about the bag now?’…
I lied and told him no, I’d sort of got my head around it all now.
He replied ‘Good, because no-one cares about the stupid bag – we just need you to be alive.’
At this point I realised that I would do the surgery, I would live with the bag and I would stop being selfish and thinking about only myself. He needed me to be here for as long as I can be. A decision was made based on that remark simply because it put things into perspective.
I finally had my surgery in November 2010, 7 months after diagnosis. For the first month I cried every day about the whole situation I now found myself in…I hated the stoma, hated the bag system, hated how I looked, cried every time I had to change the bag. Then a month later I moved forward, I made a decision to accept it. It wasn’t going anywhere, it was permanent and I had a choice to either continue to cry over it or just get on with it. Now, 4 months post surgery I can honestly say that the bag is no longer an issue.
The outcome of my surgery was that ‘we think we got it all but it’s impossible to know for sure’…which kind of leaves you in limbo land. I refused post operative Chemotherapy as the statistics showed only a minimal percentage improvement in recurrence odds (3-5%). Now I’m playing a waiting game, my first post operative check up is in June this year and I can only say I hope they got it all – but what will be, will be.
I wanted to tell my story because I want to raise awareness of Rectal cancer in the UNDER 60’s. Currently they screen the 60+ age group, frequently people under this age are told ‘nothing to worry about, you’re too young’ but the truth can be very different. Since my diagnosis I’ve come across other people in their 40’s and even some in their 30’s who have been diagnosed. I was told that my tumour had been growing for at least 8 years before it was discovered. That means I was probably around 40 yrs old when it first started – screening me at 60 would simply have been way too late as I wouldn’t have made it to that age.
So my message is if you have ANY symptoms that are not right such as unexplained weight loss, extreme tiredness, ongoing loss of appetite, joint pain, constant headaches, temperature fluctuations & blood loss then you must INSIST on being checked. Chances are it will be ‘piles’ but once in a while it’s just not that simple. Don’t leave it to chance, don’t self diagnose via google, don’t wait until you’ve got ALL the symptoms, don’t die of embarrassment – if you see any blood after a bowel movement GO TO THE GP AND INSIST YOU ARE CHECKED OVER.
For Carole’s full story please visit her blog http://caroleandcancer.blogspot.com