This is my first attempt at a blog so please be patient, I'm taking baby steps as they say into the virtual diary world. Been keeping a diary since I read Adrian Mole when I was younger and still go back and read the good days when I'm having bad ones, and they always makes me smile, hope that it will make someone else smile too. However they have always been private ramblings so this is altogether something new. The Ice Queen could be exposed as having feelings!
A little background as my about me states, I'm a 39 (nearly 40 ouch!) year old mother of 3 darling children, Jessica 22 (congratulations to all you maths whizzes out there, yes I was young)Benjamin 11, nearly 12 as he keeps telling me & Cordelia 10 who if I'm honest if she had come first I would have only 1 child. Don't get me wrong I love being a mum but I'm not exactly the most maternal of women and she tests me every day! My husband David is a saint (a grumpy one) and if I didn't have his support I dread to think where I would be right now! I say saint sometimes he plays the martyr card very well too, being married to me for the last 19 years has to be worth a sainthood in anybody that knows Me's eyes!! I'm not the easiest of people to live with and this disease isn't making life any easier for any of us.
I was diagnosed with Bowel Cancer on the 4th of July 2011 and they operated on the 5th of July, yep that's the day after, also my hubbies birthday. Don't think I can ever forget that date! This comes a whole year after being diagnosed with Cervical Cancer in June 2010 and was given a full hysterectomy and sent on my way! Things kinda went downhill from there. Doctors said that my constant tiredness, stomach bloating, cramps was just my body recovering! November 2010 I was hospitalised for 2 weeks with chest pains, still nobody could explain all of the above. Back & forth to my doctor as I was falling asleep at the wheel of my car on the way to work, being sick etc the symptoms read like a medical dictionary but still nobody took me seriously. March 2011 and id had enough, my friends thought I was avoiding them as I never wanted to go out, me the party animal! I sat down in front of my doctor and told her there is something wrong with me, help me! I went through my symptoms again, the list as long as my arm! Finally she listened put two & two together and got four! Hallelujah! She sent me for a colonoscopy which i had in June, they told me that I had a tumour the size of an apple in there and had taken a biopsy and given me a new tattoo! said that I would need surgery and not to hope for good news as it looked a nasty customer! Told me a week later Cancer & operated the next day! Not much time to get used to it which I suppose helped it its own twisted way. All I could think about was my daughter's Jessica's wedding in August and would I be there?! The what happens after bit id not had chance to think about. My CNS Kate was amazing and was there for me to answer any questions worries I had, but all I wanted to know was will I be well enough for my daughter's wedding. I remember my surgeon saying before my surgery oh, we looked at your scan and it looks like its not breached the bowel wall so it looks good. Then a week later he couldn't look me in the eye when he told me it had breached the bowel wall and was in my lymph nodes and id need chemo! I can remember going numb for a while nothing registered, nothing! I have stage 3 with it in more the 5 lymph nodes, no mets.
My recovery from surgery was painful, ended up with a vac dressing as I had an abscess on my wound and they had to open me back up! This was due to being ignored for 3 days in agony by the nursing staff!! I wouldn't want to describe it as it still makes me feel sick now! 5 weeks I had that on having the dressing changed twice a week. It was only the day before Jessica's wedding they took it off and packed it so I didn't have to carry it around. For those who are wondering what I'm on about, its basically a vacuum pump dressing that sucks all the horrid stuff out so you heal inside out! The contraption was like an old camcorder case and weighed and absolute ton, I was given what can only be described as a old lady hostess trolley to push it about on, will never be seen on the cover of vogue. Just what every fashion conscious woman needs in her wardrobe...not!
Jessica my eldest got married in August 6 weeks after my surgery both myself and her new mother in law were both diagnosed with Bowel Cancer within a week of each other and had our surgeries a week apart. Not something a new couple should have to face 6 weeks before their wedding but we were determined that nothing was going to stop us having the best day ever and we did. Having two mothers going through the same treatment at the same time must be hard on them but they are great and supportive and I am so proud of how they have handled it, I doubt I could. We are both currently on Chemo.
Currently I'm due to have my 4th round of chemo on Friday, this time in the day unit as nothing seems to have run smoothly so far.. Can you see a current theme emerging here?! Nothing ever runs smooth for me.
Chemo 1... My Infusor bottle which is supposed to run over 48hrs went through in 24. Ended up with chest pains in hospital!
Chemo 2.. As a precaution in hospital for treatment, night one spikes temp of 39 take down chemo. No infection found start chemo back up, then due to tingly hands drops the IV stand and the chemo ends up on the floor. Only half chemo given!
Chemo 3.. Due to previous non infection, that was infection in my picc it was removed. Had to have chemo as inpatient again. No complications..Yhey! Well apart from the hair loss, sickness sore mouth & lost my front tooth. Nothing major!
Chemo 4 due Friday having new picc inserted on Thursday in my right arm, not amused but they said I have scaring on my vein in my left arm so a no go! But hey I go back to having it as a day patient and take home chemo again, and I'm not couped up in the hospital with the poorly people.
So far the worst side effect wise is Ive lost my hair, did get told it would thin but seriously I resembled the mad woman from Shutter Island! It was coming out in clumps and every morning my pillow looked like a shaggy rug. Owned up to it and had it shaved last week and the hospital have booked me in with the wig place on Thursday. So at the moment I'm experimenting with hats and scarves. No idea if I will like a wig but I'm willing to give it a try. Maybe something platinum blonde as I won't have to worry about the roots! My hubbie & kids think my new hairstyle suits me but they have to say that! I went out to see my friend with my scarf on and I was embarrassed, yes that's right embarrassed, why? No idea!! Believe me she's seen me in some states, I guess it stamps the I'm not well look firmly on your face. But I guess I'm not well and pretending I am by hiding away within my four walls not facing anyone not making life easier either. Ive come to the conclusion that this is a lonely disease, we don't want to burden our friends & family with our stories of throwing up, mouth sores and hair loss as at the end of day they don't know what its like being faced with these horrible side effects of trying to make our lives last a little longer. They can empathise but it's not the same. I wonder sometimes if I'm making the right decision about carrying on with the chemo but then I think of the devastation I would leave behind and that pushes me through. I have found some great solice online with other sufferers and survivors and it makes me proud to know them and their story. Beating Bowel Cancer.org have been brilliant and have been the light at the end of my dark tunnel on many occasion and to them I am truly thankful.
So I guess my first baby step has been taken, I promise not to ramble so much whilst taking you on my journey into the unknown. Dodgy territory for a control freak like me...
