- I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
Thursday, 30 September 2010
Wednesday, 29 September 2010
I thought I'd finished with him until the surgery, but they contacted me and asked me to see him again today - wasn't really sure why although I suspected it was maybe because he's still wondering am I actually going to go ahead with this op or not....
So firstly to the Stoma team. This was only going to be a quick measure up ready for next week.
The idea is that you get to have some say in where they place the Stoma, working out where it will be most comfortable, interfere least with your clothing and fit into your lifestyle...
Anyway, the 'quick' meeting turned into a 1.5 hour chat with Anna, one of the really lovely Stoma nurses. I met with her before and she's great - very dry sense of humour, doesn't tell you it's going to be 'okay' and all fine....What she said was:
'It really doesn't matter what I tell you because until it's done you can't possibly get to grips with it, after that it's a choice of who controls who - you either choose to control your Stoma or you let it take over your life and control you'...
She then went on to say that I'll probably not even want to look at it for the first few days - and that would be fine. They will deal with it until I'm ready but she's confident that once I do decide to get on with it, I'll be fine.
We talked about irrigation in the future - at least 4 months after surgery once everything has settled. What that means is that you can irrigate the bowel daily *flush it out* and then you get no waste for approximately 24 hours - depending on each individual persons routine. I like the idea of that but we'll see how I get on.
I also told her I was worried about changing Stoma teams after my discharge from hospital.
Officially I should come under another hospital after discharge due to my home address - but she said she's going to sort it out so that I can stay with them instead.
I said I didn't want to have to go through the whole building a new relationship, going over everything again, with a new team - she agreed that it's all been stressful enough. I feel better about that already.
Lastly we discussed where the Stoma needs to go on me....I'm now marked up and covered in shiny tape ready for Monday...wanna see?
Our last part of the chat was about diet - she told me to ignore the diet sheets and eat whatever I wanted to.
Finally our last bit of chatting was about hernias - Anna tells me that 50% (YES! FIFTY percent) of patients end up with a hernia after Stoma surgery.
I have plenty of volunteers ready to help out so I'll behave myself and do virtually nothing for 6 weeks - I seriously do NOT want a hernia and the prospects of a further op or dodgy Stoma.
If I've got to have one, it needs to look GOOD! :-))
Then I went upstairs and had my appointment with the surgeon....He's actually a nice man, he's kind and I know he does actually care about his patients.
He said that he was confident that by taking the antivirals the Shingles virus should be kept under control and therefore shouldn't be a problem with interfering with the healing of the wound - so that's good news.
We then discussed the PET scan again - he said he'd looked at it again in more detail and double checked all results and was happy to say that there appears to be no lymph node involvement (the MRI had showed that there possibly was a few that were affected) - so again that was good news.
Lastly he said he'd double checked the lungs/liver area and other tissues and could see no signs of any spread whatsoever - his words were 'seems to be nicely contained with no, or at least limited, spread'...Again, good news.
Then we talked briefly about Chemo after surgery. I've made it clear that I'm not happy about having further Chemo unless it's deemed absolutely essential.
We left it that we will decide when we get together again approximately two weeks after discharge when I go back for my post op checks - depending on pathology reports, margins and whether the lymph nodes ARE actually in the clear.
He also reminded me that I will be monitored for 5 years (blood tests, scans and 6 monthly checks initially - moving to annual checks if the first two checks go well) but will not be classed as being in remission or free from cancer until we get to that magic 5 year marker.
So, that ended our meeting with him assuring me that he's going to do his best possible job on me and all will be well.
Told him it best be all well, and that I'm only trusting him with my life because he's a Greek man and my sister lives in Greece - He laughed alot at this and said 'Then I definitely have to do my best for you Carole'....
And I know he meant it :-)
Oh and just for the record, that was Arsenal's first Champions League win away from home in a year. Decent enough result for me :-)
Tuesday, 28 September 2010
Monday, 27 September 2010
Cancer Greetings Cards
Cancer Coffee Mugs
Cancer Fridge Magnets....
On his website, you'll also find other goodies like Sweatshirts, T Shirts, bags AND there's money saving special offers there at the moment.
Sunday, 26 September 2010
- blood pressure;
- pulse and heart rate checked;
- lungs listened to;
- height (still not shrunk yet - lol)
- weight (still putting on the odd pound or two - am now about 8st 2lb);
- blood tests;
- urine tests;
- got measured for the awful looking stockings that I have to wear for a month after surgery to avoid developing thrombosis;
- days worth of drinks to build you up before surgery,
- then other pre-op drinks to have the day before surgery,
- plus bowel prep stuff,
- special scrub stuff that you have to shower with the day of your surgery
- Sexual Dysfunction
- Bladder Dysfunction
- Phantom Pain
- Pelvic Discomfort
- Perineal Numbness/Tingling
- Perineal Wound Breakdown
- chest infection
- urinary infection
- excessive bleeding leading to a blood transfusion being required **(see below for more details on this)
- blood clot in your leg (DVT)
- heart attack
- blood clot in your chest
- leakage from your internal bowel join
- wound dehiscence
- damage to or bruising of the nerves which control your bladder and sexual funtion
- internal scarring that may require further surgical treatment
- damage to your spleen which may have to be removed if it cannot be repaired
- accidental damage to the tubes which drain from your kidneys
- accidental damage to the bowel, bile duct and other organ.
Saturday, 25 September 2010
Relevant parts from email below:
I thought you might be interested in hearing about the campaign that Sutter Home is currently working on to help raise money for breast cancer awareness, treatment, and education.
Right now, if you “like” the Sutter Home Facebook page, you can access an application which allows you to add the Sutter Home capsule overlay below to your Facebook profile picture. You can also add the overlay to your avatar on Twitter.
For every Facebook fan or Twitter-er that adds this overlay to their avatar, Sutter Home will donate $1 to Breast Cancer awareness.
I was hoping that you might be interested in sharing this great opportunity with your readership
So, there you go - if you are interested in supporting this cause check out the website and it'll guide you through the process.
Secondly - I'm asking for help for a friend....
If you know of or can find ANY research papers available on MUCINOUS OR COLLOID CARCINOMA please send to me via the email link on my profile page....
This is a rare Breast Cancer that affects just 2% of people - it is proving to be very very difficult to find out any helpful information on the best treatment plans and my friend is receiving conflicting information from her team making it virtually impossible for her to proceed to treatment.
So, if you are currently still seeing your Breast Care team and can ask if they are aware of any papers or research programmes into this type of Breast Cancer, I'd be very grateful.
This information is required by yesterday..but today, tomorrow or as soon as you can will still be good. Anything you can turn up please forward to me.
Many thanks xxx
Wednesday, 22 September 2010
Sunday, 19 September 2010
When my cancer was confirmed the surgeon said to me that it was extremely unfair as I didn't fit the bill at all for this particular type of cancer.
Afterwards the Colorectal nurse discussed this in more detail with me.
Markers for Colon Cancer (or Bowel Cancer if you prefer) :-)
- Eating an excessive amount of red meat - Nope, I was always a light meat eater and would choose veggie where possible.
- Being overweight - Nope, been 8st. for years now - UK size 8 and always stayed steady weight.
- Lazy lifestyle - Nope, always on the go - walk to/from work/school/shops. Out and about at weekends on the common exploring woodlands etc.
- Heavy on the junk food - Nope, have always eaten healthy food - lots of salad, vegetables, fruits have always been included in every meal.
- Being between 60 and 70 yrs of age - Nope, 49 at diagnosis and they suspect it's been there for a couple of years at least.
- IBS/Chronic bowel problems - Nope, never.
- Family history of Colon Cancer/Genetics - Nope, no-one...I'm the first
- Heavy smoking and excessive alcohol consumption - Nope - although I did used to be a smoker but was never a heavy smoker. Have only been an occasional drinker (odd glass of wine) for many years.
So....that left me saying 'Why?...Why did I get this cancer?'...and it seems that no-one can answer that for me.
That brings me back to the article in the Express last week.
So you may say, what's the point of this post then?
Well simple, it's because I've been taking a daily dose of Aspirin since 2004 when they diagnosed me with Lupus and 'sticky blood' (Hughes Syndrome) ..........so not only did I have 'no real markers; but I was also doing the medical stuff that they say "can reduce your risk by a large amount" - just all seems a bit ironic really :-(
Friday, 17 September 2010
Tuesday, 21st Pre-Op Assessment at hospital - "expect to be here for a half day"
Wednesday, 29th - Surgeon wants to meet with me again (just to check I'm still in the country I suspect)
Monday, 4th October - Admission to hospital (if I'm still in the country :-)...)
Tuesday, 5th October - Horrible Op (if I've not worked out how to escape undetected from the ward the previous night)
Wednesday, 6th October onwards until further notice - in hospital.
Updates will be provided by James as and when he has relevant information.
Thursday, 16 September 2010
We can talk until the cows come home about how it might have been...
But then some days a picture says more than a thousand words......
Enjoy - I did.... :-)
Tuesday, 14 September 2010
Friday, 10 September 2010
Today is Eid-ul-Fitr.....this marks the end of Ramadan.
Wednesday, 8 September 2010
Tuesday, 7 September 2010
Saturday, 4 September 2010
- He made a couple of new friends (Owen and Daniel);
- enjoyed lunch (egg sandwich, a flapjack and a drink - such a creature of habit) ....he's eaten hundreds of egg sandwiches in his life - never at home, always at school;
- he took part in a team game and his team did well - apparently they didn't win but had a lot of fun
- found out he has something in common with a girl in his class, they both detest tomatoes
- learned how to operate the biometric system they have for school lunches, library books and registration (everything is done via fingerprints)
- managed to put his lunch money onto his account and more importantly managed to ask for help when it didn't work at first
- found people to sit with and have a chat to at lunchtime - this is something he would have really struggled with even just a year ago
- was awarded a merit certificate for finding out essential information that everyone else forgot to ask about (his obsessional need to know things comes in handy sometimes....lol)
- and is fine about going back on Monday :-)
D = Decision making, this can take me some time. I like time to think..
J = Jumping, I like to jump sometimes, I find it relaxes me and gets rid of stress
A = Art is something I find relaxing. I like to be able to spend time getting things just right
M = Military machines, weapons and wars is a subject that really interests me. I have WWII items that I collect
E = Energetic – sometimes I find I have more energy than I know what to do with! Using the trampoline here will be good J
L = Listening, I like to listen and think – it is something we should we should all do more often, listen to each other and think about what we say.
So the things above tell you a little about me. I’m not so good at talking about myself, in fact at Primary school I wouldn’t have been able to stand up here and do this.
I used to think that no-one was very interested in me but since I’ve grown up I’ve realised that I am a good friend, a great listener, a good advisor and I’m fun to be around.I’m looking forward to doing really well here at this
Wednesday, 1 September 2010
I think he had a lovely day, presents, pizza and chocolate cake (favourites) and his friend round to play from 2pm to 8pm - we did ask him if he wanted a birthday party but he said he didn't... (he's not really a party kid, seems to prefer just hanging with his best mate Aidan)...
Nan and Grandad came over and then James and Leanne arrived after work in the evening.
The two boys had 'party food' (junk) and I cooked a Malaysian Beef curry for us adults, with curried lentils as a side dish, mixed salad and nan bread....everyone seemed to enjoy it, so that was good.
Djamel got some lovely presents - thank you to everyone, much appreciated....
Great (huge) selection of spy books and cash from Nan and Grandad
Paintball guns and a new gaming mouse from Auntie Sarah and Manolis
Book voucher from Lou, Cash from Hazel, Cash from Riad, Cash from Jacqui,
Lots of books, PC/X box games, Nerf Dart-Guns from Mum and Dad
Nintendo DS game from Aidan
Hoodie top and a WWII Gas mask from James and Leanne....Yes! Really...:-)
Djamel collects WWII stuff. He already had a helmet and some ammunition cases and he'd asked for a WWII gas mask for ages (he saw one in Gloucestershire when we stayed with Lou last August)...
I asked him if he'd had a nice birthday and he replied 'Actually it was a REALLY nice birthday' ...so, like I said - it's all good :-)
Grandad reliving his childhood - again :-))
My PET scan is taking place at 2pm tomorrow (1st September)..the hospital contacted me today and asked if I could do this despite the very short notice - I agreed because it suits me just fine, sooner the better.
I have to fast from 8am - only water after that - then get to the hospital for 2pm. The lady I spoke to said to expect to be there 2-3 hours as this scan takes time - YAY! Exactly what I want, a thorough, precise and LONG scan - perfect.
Fill you all in after the scan tomorrow.
Positive thoughts please between 2pm and 5pm...If this result isn't what I want it to be the next step is surgery as this really is the last thing I can try....