About Me

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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..

Friday, 28 May 2010

Struggling a bit now.......


Since my appointment on Tuesday I seem to have gone 'downhill' somewhat. Not mentally really more physically really.

Tuesday evening I developed a pain in my left buttock muscle that travelled all down my leg to behind my knee, best way to describe it would be a nagging neuralgia type of ache and my bum was seriously sore - as usual...

Wednesday muddled through by taking painkillers then developed severe thrush, splitting headache, pain at the base of my spine that is just so uncomfortable it hurts to even move, upset stomach, still got symptoms of the sinus infection as well despite taking the antibiotics (which were responsible for the thrush outbreak), slight urine infection and damn fed up.....

Thursday am felt slightly better in general - most things back under control with painkillers, canisten cream and pro-biotica tablets. Rab took Dj to school so I just relaxed at home and did the minimum all day.
During the late evening I felt like I had trapped wind in my stomach - which is quite painful at the best of times and even worse when you know you really want to 'fart' but at the same time don't want to because it makes your bum feel more sore....mind you, I should probably make the most of 'farting' right now being as how I soon won't be able to once my bums gone :-))
....... No Dj, the bag probably WON'T explode, I've checked - but it will sound like an Icelandic hot steam gezer apparently...! :-)

Then late last night I finally did manage a really good expulsion of 'wind' in the loo, only to find I'm now farting out clumps of blood.

Now that's a real pain because since the biopsy I've noticed that there was hardly any bleeding - so am thinking that is what was causing the extra pain at the site of the tumour which is just below the base of the spine.
Anyway, rang one of the Colorectal nurses today just for advice really and she said it IS normal for a build up of blood to suddenly expel itself like that but if I have severe heavy bleeding I have to contact them straight away.
I reassured her that today it is minimal again - but I will keep an eye on it over the next few days.

So today I feel tired, grumpy, uncomfortable and I'm going to sleep whilst Dj's at school.

On a lighter note I did manage to make a brilliant dessert on Wednesday which proved popular with everyone. I've named it 'Greek Lemon Crunch' - there's nothing particularly Greek about it except I made it with the lemons from Manolis' lemon tree in Rodos.
Dad brought them back with him after visiting Sarah and Manolis ealier this month. I'm sure it was the Greek lemons that made this soooo nice.
Here, have a piece.....I saved you one slice (sorry, the rest is history now) :-)

Wednesday, 26 May 2010

Chemo/Radio planned now

Yesterday I went off and had my appointments at St Thomas'.
Went pretty much as expected, blood tests for Chemo department and then a chat with a nice nurse in the Radiotherapy department then after that I was scanned and pricked with three little dots (permanent ink tatoo's) one on each side of my hip and one at the base of my spine.
Risks associated with Radiotherapy were discussed and I brought home a booklet which covers mostly all side effects of Radiotherapy.

Because I'm having Chemotherapy and Radiotherapy at the same time, my treatment is called 'Chemoradiation'.

They have warned me that the Radiotherapy will probably cause early menopause, infertility (definitely not bothered about that bit), tiredness as the treatment progresses and other bits - but as everyone reacts differently it's impossible to say exactly how I'll react until the treatment is under way.

Felt quite tearful last night - not really sure why but I think it's just because every time I have an appointment it's all getting a bit closer and more 'real'. Whilst there are no appointments I can just take my painkillers and get on with not thinking about it all too much but when an appointment comes around it seems to bring things back to the forefront again.
Anyway, I'll dust myself off and get on with it all simply because I have to - certainly not because I want to!

My first dose of Radiotherapy is on Monday 7th June and will continue Monday to Fridays until 9th July. I also pick up my Chemo tablets on the 7th June after the first Radiotherapy session.

Soooo, I shall be spending my 50th birthday - on the 10th June - having treatment for Cancer, certainly not something I'd planned whenever anyone asked me 'What do you fancy doing for your 50th this year?'.......:-(

Tuesday, 25 May 2010

Weekend 22nd/23rd May

It was a lovely weekend weather wise. The sun is out and for a change London is a lovely place to be :-)

If I had a nicer garden I'd spend more time out there - but as it's not that great I've spent my time indoors with the windows wide open, popping outside occasionally to see what the cat's up to (which involves all sorts of mischief, including now climbing the biggest tree outside then sitting as still as a statue waiting for a naive bird to appear!)...

On Saturday Rab, Dj and I went for lunch at Nando's - I actually managed to eat quite a bit for a change then had a sleep during the afternoon. Sunday Rab took the boys swimming (Dj and his best friend Aidan) so I stayed in bed until about 11am then just really did some bits and pieces at home, prepared a light meal for later in the day, sorted out work shirts for Rab and uniform for Dj and enjoyed the sunshine pouring through the windows.

The pain has been manageable for the last few days - maybe the sunshine helped :-)but the sleeping is still a problem for me.
Even when I go to bed at a decent time of night and manage to initially get to sleep it doesn't last for long. I find myself getting up numerous times during the night, either to go to the loo, get a drink, or just wander round for a bit.

I've worked out that around 4am is the time of my darkest thoughts for some strange reason....last night I found myself recalling an article I'd read about the fact that 5% of people die within 30 days of having bowel surgery - then I think 'that's not many so I'll be ok'
then I remember that the 5 year + survival rate for bowel cancer is 55% after surgery and being told we've got it....
then I think that 'at least it's more than half the odds in my favour'...
then I think 'I'm not going to die anyway' but then think 'but what if I do'?....
then I'm thinking about the dreaded bag.......then I sleep again.

Mad confused thoughts that only seem to surface during the night - sometimes it feels like you're losing the plot but then I get up in the morning and it's another day and I feel ok again and the 'darkness' goes away until the night time.
I don't feel worried about those things during the daytime hours, I'm managing to remain in a normal frame of mind...night time is definitely the weirdest time. :-)

Anyway, now it's daytime (therefore am 'normal' - whatever that is these days) and I'm getting ready for my latest hospital appointment so will report back later with (hopefully) confirmed dates for Radio/Chemo treatment plan.

Pre-Assessment day

This afternoon is my appointment at St Thomas' for pre-assessment of both Chemotherapy and Radiotherapy.

First is the Chemo appointment which I think is just blood tests and a chat about the Chemo treatment plan, possible side effects etc.

Then onto the Radiotherapy department for my pre-assessment appointment. I think this is where they re-scan me and then tatoo me so that they can line up the Radiotherapy machine in exactly the same place each time.
I'm not looking forward to yet more people examining my bum, poking me around or the actual tatooing procedure (Yes, I KNOW it's only 'pin pricks' but the whole area is so uncomfortable I just want to be left alone)....

Still, get today out of the way and then it's just a case of waiting until the actual treatment starts dates that I'll confirm later, but I'm expecting it to be around the 7th June.

Wednesday, 19 May 2010

Lovely Flowers :-)

Today I received the most beautiful flowers from Louise and her mum Brenda. They arrived about half an hour after I'd returned from the GP and was still feeling a little down in the dumps - they are so lovely that I couldn't help smiling afterwards.
Thank you Brenda and Louise - so appreciated.

Here's a picture of them (because the problem with sending flowers via interflora is you never get to actually see them yourself)......

Went to the GP ........

Today I went off to the GP to update my certificate for work - and to get something for the damn sinus infection that has now appeared.

I saw a GP that I'd not seen before and she was really lovely. Said she'd read up on my notes and wondered how I was now feeling about the colostomy situation - burst into tears and told her I'm still struggling with the idea but I KNOW it's not avoidable and I KNOW I have to go ahead with the op but it doesn't make me like the idea any more'...
She was brilliant, we talked for about half an hour (despite the appointments being '10 minutes only') and she assured me that the Charity I've contacted will be useful to me once they put me in touch with someone around my age who has a permanent colostomy bag. She also said I need to try to deal with ONLY the Chemo/Radio right now, then tackle the surgery and Colostomy issue, so in other words one step at a time.
She also reminded me that the Queen Mother had one - I laughed at this and said 'that's exactly what my mum said actually'.....

GP also said that if I continue to have difficulties with this, they can help me via anti-depressants. I agreed if I really can't find a way to get my head round it all properly then I'd consider it - but not right now because that can be a last resort not a first one. She thought that I was on the right track.

So, left the GP with a prescription for antibiotics for the sinus infection, renewal of prescription of different antibiotics for the urine infection (they want me to stay on them for at least 6 months and although the symptoms seem to have finally completely disappeared (YAY!) the Radiotherapy may well give me a urine infection towards the end of treatment - so makes sense to persist with them right now), an 'unfit for work' certificate and a further certificate that I have to send off to Dept of Health for exemption from prescription charges due to the Cancer diagnosis.

Am always OK after crying for a while and it's obviously what I need to do sometimes, so felt much better during the afternoon - just a bit tired because still not sleeping very well at night....unlike Dizzie who seems to have no problem sleeping at all :-)))

James and Leanne came round last night and we had dinner. I threw together some salad, burgers, kebab things, coleslaw that sort of thing and did a 'mushroom' dish for James to try (because he loves mushrooms and Leanne detests them so he hardly ever cooks them at home)..they actually turned out really well and I'd do them again - sometimes my experiments work quite well (unlike the blasted cookie disaster) :-)

Monday, 17 May 2010

So many people.........

I was thinking today about the people that have tried in some way to make this easier for me. Whether small ways or big ways, everything has been appreciated....It's difficult because I know people want to do things to help me out, but right now it's hard for me to think of much to delegate.

But I just want people to know that everything helps, whether it's just an email, a joke, a text or something more hands-on and/or practical.

I shall now do my 'Oscar Acceptance' speech.........:-)

James & Leanne - thanks for the continual support, texts, phone calls, attending the meeting for me, taking me to lunch, listening to my worries and offering sensible advice, offering to decorate Dj's room, pack his suitcase, and yet still manage to have normal conversations with me where we put the world to rights! :-)

Rab - for being practical and not falling to pieces, making me look at things in the cold light of day and reach sensible conclusions, for the quiet hug that you sneak up behind me for, for not minding that I'm totally pre-occupied with myself these days, for asking how to operate the washing machine, washing the floors and helping out more at home, and for telling me that the bag 'doesn't matter because you'll be alive' :-)

Djamel - for asking sensible questions and making me laugh about the horrible bag (will it explode when you fart mummy?....can you drink Coke or will the bag expand?....don't come to my school if you're bald please....and numerous other amusing things he's thought of since), for not being afraid to say 'Cancer' when we talk, for believing me when I tell you if things change I WILL tell you, for deciding that Tunisia would be a good 'last' holiday if necessary, for trying to do a bit more for yourself...and for carrying on as normally as possible - it helps a lot :-)

Mum and Dad - for your unending support and love, offering to do ANYTHING I need, making Dj his favourite meat pies, offering to help out with uniform costs (we won't be taking you up on that, but the offer is greatly appreciated), for having normal conversations with me that don't involve Cancer in every sentence, coming over to help out with Dj & letting me sleep, making plans to help Rab when I'm having the treatment and Op - it all makes a difference :-)

Eddie - for being there for me, for checking up on me with numerous phone calls & texts messages, offering me financial help if we need it, offering to have Dj at weekends to give me a break, offering to talk to Rab if he feels under pressure and especially for making me laugh and treating me normally :-)

Sarah - for all the love you've always shown me, numerous text messages that literally make me LOL, refusing to let me be 'down' for longer than a text takes to arrive, saying you're coming on this journey with me, keeping my room nice for when I get to Rodos, making plans for the future that don't involve me being ill anymore, and just for being there all the time no matter what time of day or night :-)

Jacqui - for the hours and hours you've wasted with me in various hospital departments lately, for letting me cry and crying with me, for making me laugh and laughing with me, for the many text messages and the email jokes, for baking me cakes, force feeding me crisps and chocolate fingers, for acting normally and not always talking about me being ill, for offering to help out with Dj in any way you can, offering to take washing and dry it once I've had my op done, for telling me that you will be there no matter what I need and for being my friend :-)

Pat - for being my personal taxi service and making me laugh with your little one-liners

Louise - for all the sensible advice and love you've always shown to me, for thinking of practical ways to make myself healthier and manage food, for trying to think of something lovely for my birthday (sorry, I'm a party no-hoper this year!), for telling me that it WILL be ok and I WILL cope with this thing because 'you're strong and you're feisty and it can't beat you', and for being you :-)

Hazel - for the numerous text messages, cards you've organised, flowers from work, talking to Linda for me when I didn't feel able to, filling in people who've asked where I am, for the enormous support and sensible advice you gave me when I was in pieces over my news, for reminding me that I have so many people who care and just want to help me through this, for offering to come to appointments with me, inviting me out for lunch and telling me whatever I need you'll be there :-)

And all the other people below who have sent me cards/emails/text messages/phone calls or offered practical support:
The Office Crew (am running out of space to put the amount of cards you've now sent me - LOL), Christine & Karen from work, Joan, Veronica, Rita, Marvella, Julie, Linda D, Fabian, Lamia my lovely niece, Riad, Nayla, Carrie, Wole my little mate who really has experienced Cancer first hand, Sharon, Betty and if there's anyone else that I've forgotten it's because I'm doing this quickly and it doesn't mean it wasn't appreciated.

Also, all the people in Cyber life who have been supportive despite their own ongoing battles and day to day problems, especially my special cyber friend Alan and his lovely wife Christine. Alan has been good friend to me over the past couple of years and is one of those people in life that you just enjoy hearing from. He's sincere and caring and yet still manages to be funny and uplifting. Just what I've needed, especially recently.
I joined a Cancer forum to get some help while I was waiting for the results and it's been very helpful to me.
I started this blog because a poster on there (thank you Tony) suggested it would be a good way of keeping family informed especially during those times when you just don't feel like talking about things constantly. Sometimes I just say 'I'm fine' and don't want to talk about the fact that I've been in tears again - it's a lot easier to just put it on here and then I AM fine again :-)

I'll also thank my GP's, Surgeon, Nurses (both Colorectal and Stoma), Radiotherapy & Chemotherapy people and Gordon Brown for passing the law that said Cancer patients don't have to pay for prescriptions :-)
Good night :-)

Less pain, more achieved today :-)

Today is Monday.....beginning of new week and so far a better start :-)

The pain wasn't too bad today and although I felt tired, I wasn't as exhausted as I'd been for a few days last week. Took Nurofen first thing in the morning then didn't need to take more until 10pm so that's a definite improvement.

Mum and Dad came over this afternoon to look after Dj when he finished school so that I could lie down and rest for a while. That helped alot and although I always feel 'fuzzy headed' after sleeping during the day, I think I felt better afterwards.
Mum made Dj his favourite 'meat pie' for his dinner so he's a happy bunny tonight - and best of all, there's still some left for tomorrow.

I sorted out some bits and pieces in the bedroom this morning - stuff I've been meaning to take over to the charity shop for some time now. I'm attempting to create some order so that when the boys decorate Dj's room for him (whilst he's away on his school trip) some stuff can be moved out of his small space and into our room.

I also want to sort out our room so that when I come out of hospital, I'll have somewhere to relax and recover in that isn't full of junk !

Was reading my booklet tonight 'Colostomy and recovering from the Op' and it tells me that after the operation I will not be able to do even simple things at first....such as 'NOT to lift a kettle'....'NOT to do ironing'....'NOT to attempt to hoover'.... It seems that all I'm supposed to do is rest and get up every couple of hours to move around, try to eat small meals then go back to rest again.
I'll feel a bit useless I suppose - but the good point of all that is, if I follow their rules then the recovery period should be faster than if I attempt to 'do' stuff.

Whenever I get a good day now I shall try to get as much organised as possible before the Radio/Chemo treatment (in-case that wipes me out - although it may not because not everyone reacts the same way apparently) and then catch up with what I can before the actual op...if I organise things then I'll feel I'm coping.
BUT if I'm tired I'll do what I've been doing recently - go to bed and sleep for a few hours.

Happy Birthday James :-)

Saturday, 15th May was James' 30th Birthday :-)))

I know Leanne was planning something and I hope it went well and he managed to get out with his (numerous) mates and have a good time.
Actually I hope he got hanging drunk and managed to completely forget about me for the evening - because I know he's been worried about me all the time and I really didn't want this to screw up his birthday...

Leanne did ask me if we (me and Rab) would go along but said I wasn't up to it. Two reasons, because I wasn't up to it and also because people who would be there know about what's going on and there was no way I wanted this b***ard illness to dominate yet another day of his life.

So James, hope you did have a lovely day and even better evening.
Love you always, Mum and Rab xxxxx

The pic below is 'Happy Birthday Bangkok Stylee'.......LOL

Sunday, 16 May 2010

Last few days......

Thursday I woke up in lots of pain and felt quite down really. I know I'm going to have bad days as well as more positive ones but I almost feel cross with myself for allowing it to 'get to me' again. Decided to make cookies, mainly because Jacqui asked me for the recipe of the previous ones and I couldn't actually remember which recipe I'd used, so set about baking - and also decided it would take my mind off the pain.
Halfway through mixing up the cookie dough the postman arrived and I stopped to see what was there.
The letter about the meeting I had with the Surgeon on the 28th April was there (sent to the GP and copied to me) and there in black and white was the mention of the dreaded 'colostomy' again - and despite my promises not to cry about it anymore found myself in tears attempting to make cookies (which, by the way turned out totally crap) and then got angry with myself for getting upset all over again.
The point of this information is simple..... despite what people say about cooking being 'good therapy', it's total rubbish!!
All that happens is, you end up with a batch of inedible biscuits that are fit for the bin and you still have the pain and you still want to cry - so all in all, a waste of time.
Far better to wait until you feel well and buy the damn things from Sainsburys in the meantime.

Went to back to bed about 2pm and slept for an hour. The meeting at Dj's school about his school journey week was tonight at 5pm, but James had already offered to go for me - felt really glad that I didn't have to face it to be honest. Decided to have a better day tomorrow.....

Friday - Still uncomfortable and still not sleeping well. Lots of really weird dreams which leave me feeling upset even once I wake up.
After taking Dj to school decided to go to do a bit of shopping and try to find something for James' birthday. I'm totally disorganised this year and although he'd said he didn't really have anything in mind, I wanted to get him something to open.
So went to Colliers Wood with Jacqui and spent a couple of hours there. Good place to shop because you don't have to tolerate the crowds that other places generate and it's an easy journey home afterwards.
Slept again during the afternoon as feeling quite tired and still bit tearful really.

More letters arrived today from the various hospital departments that suddenly seem to have become a permanent part of my life now.
One confirming the Pre-Assessment for the Radiology department on the 25th May, another asking me to go to the Chemo department on the same day (half an hour before the Radio appointment) for blood tests.
Then about 4pm a phone call confirming the Chemo appointment and letting me know verbally that they expect the 5 week treatment plan to start on Monday, 7th June. I shall be asking for an afternoon appointment for that as that is the day that Dj goes off on his school journey for the week.

After looking at all those dates, I think the surgery will be sometime around early September - which is when Dj starts secondary school, so not exactly the best timing but Rab will take time off to settle him into the new routine and I have plenty of volunteers who will make sure he's sorted and ready to start on time.

So, not a great couple of days but I'm aware that I'm not going to be 'coping' and in the 'best of moods' all the time.
To be honest, just felt like feeling sorry for myself for the last few days - I'm sure it's not really too helpful but it's probably better than smashing something up :-)

Wednesday, 12 May 2010

Next Appointment

I have now been told that my next appointment at St. Thomas' is Tuesday, 25th May @ 2pm for the 'Pre-Radiotherapy Assessment'....This is when they will give me my tatoo! take blood tests, re-scan me and prepare for the start of the Chemo/Radio combination.

So, nothing much to do now in the meantime, except wait for the ball to start rolling and keep taking the painkillers (which are giving me the weirdest dreams now, so may go to the GP and see if there's an alternative which may suit me better).

I'm thinking that the actual treatment will probably begin first week of June for 5 weeks - so by mid July I just have to let all the poisons out of my system and get over any unpleasant symptoms that may or may not occur during the 5 week treatment. Then tackle the surgery after that.

Tuesday, 11 May 2010

Oncology Team @ St T'

Went off to bed last night about 1am and felt quite 'normal' - then woke at 4.15am in tons of pain so had to get up and take painkillers. Think I'd had a fairly disturbed night before I finally woke up properly as I'd been having this weird dream about this mad looking bloke stabbing me in the back repeatedly!! (obviously, the pain was there whilst I was asleep and I'd then incorporated it into my dream)....

Had a rushing around morning today....firstly had to take Dj to school then get to the Secondary school by 9.30am to (finally) meet with the SENCO. Went fine and now waiting on her getting back to me with a few suggestions for when Dj can visit and spend a morning with them to help settle him.
He will also have an official induction day sometime in July but SENCO felt an additional session would be useful to put his mind at rest about the changes ahead.

After that had to dash off to get to St T Oncology department for 11.00am. Met Jacqui at Clapham Common station as she'd finally decided it would be good to get her foot x-rayed (At LAST eh Jac :-))...)
I'm suspicious that really she only got it done today so that, once again, she could waste another few hours of her life sitting with me in all these endless appointments. She also force-fed me M&S crisps and chocolate biscuits whilst we waited (and waited and waited, as the appointment over-ran by almost 2 hours) - thanks Jac, you can come again next time :-)

Finally got called, had weight and height done (8.2lbs now so have put on 2lbs this week - and I'm still 5'3, so not shrunk or grown) then met the Oncology team, very nice man and a young student (who looked about 13 yrs old - which obviously means I really AM getting old), who talked through the treatment plan with me and really just confirmed what Lynne had told me yesterday.
5 weeks of Radiotherapy/Chemotherapy combined followed by 6 weeks when they will finally leave me completely alone, then surgery after that.
He confirmed that it is OK for me to have the Chemo treatment via tablet form, probably two tablets twice a day - so am happy about that
He also confirmed that the last few weeks of the Radiotherapy will probably be the worst; tiredness, soreness, sickness, upset stomach, maybe some bleeding, nausea, appetite loss/weight loss, plus soreness (possibly peeling) in the mouth/feet/hands - sounds just delightful eh :-)

He also thinks that I should NOT lose my hair with this particular Chemotherapy BUT everyone's different so although reasonably sure, he can't absolutely guarantee it - still it's far better than 'Yep, definitely you'll be bald by the end of this'

Rang Dad and said don't come over as I'm now on my way home just after 1pm (he'd planned to come over in case I was delayed so that Dj had someone here with him after school).
Mum went to see Betty today so I'll find out later how she's doing. Hopefully she's starting to feel a little better now - am sure Mum will cheer her up anyway.

Now waiting for St T to send me an appointment during which I will be re-scanned, get tatooed (so they can line up the Radiotherapy machine in the right place each time) and prepared to start the 5 week course of treatment. Doctor says this will all now be 'very soon'.

Now after updating this, I shall go off and decide what to cook for dinner tonight. As I've managed to put on a whole 2lbs (!!) I need to keep it (for now) and that means eating even if I really don't want to. Plus the painkillers work far better when I've managed to eat first.

Am bored with the whole cooking/eating/deciding thing really - I want to live in a 5* hotel with room service and my own personal Chef who just cooks up nice, appetising, fattening things every day - with no effort on my part at all...
Mental note; Must remember to do the lottery tomorrow - just in case :-)

Monday, 10 May 2010

Mum, Dad & Sister

Today, as planned, I got together with Mum and Dad and broke the news to them that I have Cancer and will need treatment as discussed in previous posts.

Both were great and listened to what I had to say and took it pretty much in their stride. Mum had an idea of what I was going to tell them anyway but it doesn't make it any easier to actually hear one of your children say 'I have Cancer'.
They've both said no matter what needs doing, they'll be there for us and together we'll all get through this. Thanks Mum & Dad - love you both lots - stay strong, stay cheerful and just reassure me that I don't have to worry about Dj after school etc. That makes a big difference.

I think it helped that I've had time to get my head around things before talking to them - if I'd tackled this on the 28th April I wouldn't have been calm and that would definitely have made it harder on them.
I explained why I'd waited til after the holiday and stressed that I felt then - and still do now - that it was the right decision.

I was then going to ring Sarah during the evening but because she's telepathic (LOL) she called me during the afternoon.
Had a chat with her, filled her in as much as you can on the phone, reassured her that I'm coping with all this and said I'd send her the blog address later so that she can read it at her leisure and find out all the details in her own time.

She said exactly what I thought she'd say 'I'll come now if you need me' ...bless...love you loads Sis but think I'll need you more afterwards when I'm totally stressed out about my 'bag', my missing body parts and learning to live a new way :-)

M, look after my little Sis (I know you will anyway, but I HAVE to say it...) Because she's so far away she's bound to worry more but I've promised I'll update this blog regularly so that she feels she's completely in touch with what's happening and sees that we're not keeping things from her just to stop her worrying.

Seriously Sis, I'm coping now - I'm finding stuff to laugh about even and I intend to stick around....... So do what I did, cry and then move on by remembering it could have been so much worse had they not found it now.

Treatment plan

Today as promised, Lynne rang me with the full MRI results and the treatment plan that they've discussed and now starting putting into action.

The tumour is Stage 3T - which although bad isn't as bad as Stage 4 (which is advanced bowel cancer and can be fairly untreatable by that stage generally).

So they've decided, to give me the best chance of getting shot of it, to go for a combination of Radiotherapy and Chemotherapy at the same time for a period of 5 and a half weeks (much longer than I'd anticipated as I was expecting 5 days of combined Radio/Chemo but in my case longer is necessary). Lynne tells me this is the 'Gold Star Treatment' :-))

Then there will be a six week break where nothing much happens - this is apparently to get the loose Radio/Chemo out of my system before they re-scan me.

Then it's surgery, removal of rectum/anus and permanent colostomy bag :-( and then possibly, and solely dependent on what the actual tumour shows them once removed, an intensive course of IV Chemotherapy.

Once all that's done, I should be given the 'we've got it all' news - and will then be checked every 6 months or so for any sign of it showing it's ugly face again!

So now I know my treatment plan.

Tomorrow I have an appointment at St. Thomas' Oncology department to discuss the Radiotherapy/Chemotherapy plan and organise my 'pre-assessment day' during which I will be tatooed (so they can line up the Radio in the correct place each time) and get all the info I need about possible side effects to the treatment.

Lynne told me today that the Chemo may well result in complete loss of appetite (like I'm not struggling with that enough already !!...) and suggested that because I've already lost weight that I will need to eat very high calorie foods such as cream cakes, HagenDaaz ice-cream and all sorts of stuff that Doctors normally tell you is very very bad for you - so I guess there's some advantages to all this eh :-) She said 'leave the healthy stuff alone and concentrate on high cals/high fat foods and we can sort out your diet getting back to normal once Chemo is over'...Sounding OK so far then, LOL!

Report back more tomorrow once I've met the Oncology team at St Thomas'.....

Saturday, 8 May 2010

Weekend :-)

Well, it's been a funny fews days really. Friday I was exhausted and had lots of discomfort, so after taking Dj to school, made a few phone calls and managed to sort out a meeting at the secondary school (at last!) so that's one really important thing off my 'list of things to do before my Op'.
After that I decided to take some decent painkillers and go back to bed, stayed there most of the day in the end. Rab cooked dinner (after he came home from work) - which was really lovely and I managed to eat quite a bit for a change.
Makes mental note: must get him to cook more often, as he's actually quite good at it :-))

Had a relaxing bath in the evening, soaked away some of the pain and then went back to bed - so Friday was a 'bed day' really.

Saturday James took Dj out for lunch and I went off to have lunch with Leanne - nice to spend some time with her although the whole afternoon seemed to be dominated by me and my damn illness.
I'm so glad she's my daughter in law, I couldn't love her more if I tried. From the first time I met Leanne I liked her immediately, she's one of those people in life that are just special.
No matter what the future throws at me, I'm happy knowing she's there for James and that in itself takes a load off my mind. Just got to hang around long enough to meet Dj's future wife now :-)))

Text Sarah late this evening to find out what time mum and dad arrive back. She then text me back and said '11.25pm your time, we had a lovely relaxed week, so glad to see mum and dad and my new apartment is lovely, I'm so happy now'........
Despite my promise not to cry anymore, I did when I received that message. Cried not for me this time but knowing that sometime over the next day or so I have to ruin her happy feelings and throw her into this mess. I'm almost tempted to say nothing and just let her carry on feeling happy - but know in my heart I can't do that.

What I do want to let her know when I talk to her is:
I'm ok, don't want her to jump onto a plane, don't want her to panic and we'll keep her in touch with what's happening all along the way.
I just can't see any point in her coming over when I'm due in hospital at any point now - I'd love to see her afterwards though because really think that'll be my lowest point.

So Sis, if you're reading this - it makes sense to bide your time and come when I need you most (and then only if you can - my blog will keep you in touch with everything in the meantime).

Tomorrow or Monday (haven't decided which day yet) I have to talk to mum and dad. I'm not looking forward to that one bit - simply because I don't want them to be worried about me.
I'm glad I've had this extra time to get my head around things because at least I'm not in such a mess now and hopefully when they see I'm quite together and accepting of what's happening, that'll help them to feel optimistic too.
Mum's best friend Betty has just had a big Cancer op a few weeks ago - I know she's been really worried about her and now she's got to go through all the same worries again....sigh......

Monday the nurse will be ringing me to discuss the MRI results and give me an appointment time for Wednesday to get together again with the Surgeon. She's also going to arrange the pre-op assessment for the same day, if possible (IF I'm having surgery first, rather than after Chemo/Radio) but Monday I should know exactly what the plan is.

Received a lovely card from work on Friday, then on Saturday received another card that had been forwarded to me by Hazel from one of our suppliers at work. Really touched by that - she's such a lovely lady (Joan) and felt quite emotional opening that. Everyone has been so kind.
I've also received two telephone calls this week, wishing me better as soon as possible, one from someone at work and the other from someone who used to work there but recently retired.

Tomorrow is Sunday and Rab is taking Dj and his best friend swimming (usual Sunday morning activity). I'm trying to keep the normal things going for as long as possible so that Dj feels everything is alright. He's not good with changes at the best of times so the longer everything stays 'normal' the better for him.
I shall stay in bed until at least 11am then just do a few bits before they come back.
At some point tomorrow, I'll speak to mum and dad and then decide whether to tell them tomorrow or maybe ask them to come over on Monday whilst Dj's at school...(can you tell I'm trying to put this off for as long as possible?)

Off to soak in the bath now, take some more painkillers and try to get some sleep.

Thursday, 6 May 2010

Nearly the end of another week

Just re-read the list of things I wanted to do this week and realised I didn't actually get to do many of them.

I didn't get my hair cut on Tuesday, or go for lunch, or go shopping....I did vote today though and as much as I'd like to have that glass of wine I promised myself, I shall be giving it a miss.
Only because today the pain has really really been a pain in the bum (!!) and I've had no option other than to take the stronger painkillers - not really sure that mixing them with any type of alcohol would do me too much good. I'll have a nice cup of coffee instead then :-)

Mum and Dad are still away on their holiday at the moment - due back late Saturday, early hours of Sunday morning. I really hope they've had a great time and Mum enjoyed her birthday yesterday. Pleased she got to do something special for her birthday because had she been here I don't think I'd have managed to get out with them for a meal - sitting in one position for too long is damn uncomfortable at the moment.

I know that Sarah and M will have made sure she enjoyed her day anyway - and I'm sure they've all had a lovely week.....I only wish I DIDN'T have to tell them about my rotten news when they come back - and even more worried about my lovely sister as she is so far away. I know her instincts will be to try and fly over to me immediately BUT right now, there's not much point.
Soon I shall have my surgery and whilst that is going on I'll be 'out of it' for a while. If she wants to come over I shall suggest she leaves it til after the Op because then I think I'll need her more.

This blog, I hope, will help her to feel she's in touch with everything that's happening and make sure she isn't worrying unnecessarily.

Today, Lynne, one of my colorectal nurses emailed me and asked if I'd like to know the results of their MDT meeting on Monday by phone or would I rather wait til Wednesday?
I replied 'Monday PLEASE' - she then arranged to phone me with the details and get me in on Wednesday as previously planned to confirm everything with my lovely Surgeon (Savvy) and also try to arrange the pre-op assessment for the same day (if they've decided to go straight for surgery instead of Radio/Chemo first). Soooo, Monday, 10th May is the day I find out more now. Scary but I do need to know.

James came over after work tonight and we had a chat. I know he's really worried about me and hope he'll feel lots better after the surgery takes place.
It's his 30th Birthday on 15th and tonight he told me he's planned nothing yet :-( Have a feeling it's because his mind is on me - and I WANT to tell him to go out, get drunk with your mates, have loads of fun and forget about me for the night - but then think if he was in my position right now then I also wouldn't feel like celebrating anything.

Then I get bloody angry and think this B*%$ard Cancer is just getting in the way of everything and screwing things up bit by bit. EVERYTHING now seems to revolve around it, and me - not only does it eat its way through your body but then it eats away at your life and those around you.
Because I'm in pain tonight I feel angrier than usual. Tomorrow will be a better day.

Meeting MORE New People :-)

Today I met the nurses from the 'Stoma Care' team. My nurse, Anna, was simply lovely and so friendly that it would be impossible NOT to warm to her immediately.
I did start by saying 'It's nice to meet you but I'd really rather not be here'..:-)

We chatted for about an hour during which she showed me various different styles of Colostomy bags, large(ish) one for immediately after the op because my bowel will take time to settle and will apparently be erratic and windy (soooo much to look forward to, eh)
Then a much smaller bag - clear so you can check contents (yuk!) until you feel confident with what you're doing and then another small one that was sort of flesh coloured and NOT see through for when I'm managing things OK and feeling confident.

She also showed me a small circular bag that I could describe as a large 'patch'. This can be used once you're confident about bowel habits during the night and maybe fancy a night of passion!
Told her that right now, that's probably one of the very last things on my mind - however she assures me at some point I shall be thinking along those lines (hope so, for Rab's sake anyway) LOL.

OK, so truthfully it wasn't as traumatic as I'd imagined it to be. The equipment isn't as awful as I'd expected and facing facts, this stuff will help to save my life so I guess it's a small price to pay.

We had a laugh along the way today as well, she also shares my type of 'dry' humour and I know that they'll take good care of me once my Op takes place.
I'm confident with both the Stoma team and also with the Colorectal nurses and Surgeon's team.
Just got to find a way to stay confident in myself to deal with this head-on and not think about how my life will now be 'different'. At least I'll be giving myself a chance at having a life this way.

I also found out that because it's a permanent colostomy due to Cancer I won't have to pay for supplies - Thank you Gordon Brown, that's one less thing to worry about at least :-) and, as an added bonus, I will not have to get supplies from the local chemist they will be delivered directly from the hospital as and when I need them.

Had an email from the Colorectal nurses tonight to confirm that the Oncology team are having their department meeting on Monday, 10th May and will get me back in on Wednesday, 12th May to discuss:

the full MRI results,
the actual stage of Cancer (very important as I still don't know that yet and so much sort of depends on this result)
and full treatment plan.

At least I'll know what's happening next then.

Tuesday, 4 May 2010

Things to look forward to this week :-)

I'm going to get my hair cut on Tuesday - get used to a new shorter style before I have to get used to no hair at all - if I have the Chemo

After that, I think I shall go shopping and get some bits and pieces for Dj's school trip - I might even treat myself to something I don't even need :-)
I'm going to see if Jacqui's up for coming with me and maybe we'll get some lunch while we're out.

James and Leanne are going to come over one evening this week, it's always nice to see them. James wants to talk to Dj and make sure he's coping ok and reassure him if he's got any worries that he's not discussed with me. I'm so glad they are so close, despite the age gap, and I know that Dj will be happy to share his concerns with his big reliable brother.

I should have a clearer picture of exactly what I'm dealing with this week and I'm definitely looking forward to knowing more (as mad as that may sound!). To be back in control I need to know.

I'm going to have a glass of wine one evening this week as well...I don't really drink anymore but after my op I may not be able to tolerate it, so I'm going to do it while I can :-)

I shall vote on Thursday - I'm glad I won't be in hospital already and miss my chance to cast my vote - then I shall sit up all night and watch the results as they come in...hmmm, maybe that's when I'll have my glass of wine :-)

I'm sure I'll think of other things I'm looking forward to this week, but for now, that's my list.

I want to feel as relaxed as THIS .........:-))

Monday, 3 May 2010

Night time is the worst time

It's a mystery to me why pain always feels worse at night, maybe it's because I don't have to pretend and keep a brave face on when everyone else is sleeping or maybe pain really IS worse at night?
Even a simple cold or headache feels harder to deal with during the dark hours so maybe it is really worse once it's dark and everyone else is asleep....Just pondering that thought really whilst popping a few more of the stronger painkillers.
I've tried not to take too many of them because they can make you constipated! That would just be an additional pain in the arse :-) so I've limited them and relied on normal over the counter paracetamol and Ibuprofen.

Have lots going through my mind tonight, must contact the bank and sort out the standing order for mortgage, ring the secondary school again if they don't contact me tomorrow so I can get the ball rolling for the September intake. Catch up with Carrie and get the School Journey packing list in advance so I can prepare Dj's suitcase for his school trip early June, look at the website for uniform for September and write a will.....No, I am NOT being morbid just trying to be practical.

I haven't cried at all today (YAY!) so must be coming to terms with things now I guess. In fact I didn't cry yesterday either come to think of it....

Tomorrow I shall contact the Cancer nurses and ask to meet with them again as I've now got lots of additional questions. I needed time to think first because Wednesday wasn't the right time - first I needed to cry and feel a bit sorry for myself, then I needed to get my head into gear and think 'What else do I need to know?'.

I've been reading lots of info online, all useful for making me think about what else I have to discuss with them. Step one is now finding out the actual 'Stage' of the tumour, after that I have other questions.
My Cancer nurse also offered to put me in touch with the Stoma nurses so that I can hopefully meet up with someone, prior to my op, who has already been through this procedure. I'm sure I will find that really helpful.

The hospital team (MDT) are meeting tomorrow, Tuesday 4th May to discuss my treatment plan so I expect I'll hear from one of the nurses later in the day....almost feel a bit in limbo now until I get the results on the actual 'stage' sorted out and find out exactly how far this damn thing has travelled.

One thing I'm pretty unsure about is the Chemo treatment - firstly I'm unsure how my body will handle this aggressive treatment (due to the previous Lupus illness and my already reduced immune system) Secondly I need to know whether it increases the chance of the cancer not returning by enough...one report I was reading online suggested that Chemo only increases the chances of staying in remission by about 4% - if that's the case, I have to really think about whether it's worth doing now or is it something I can try later IF it does return?

I almost want to say 'Just do what you think is necessary' but then I find myself thinking 'No,I want a proper say in where all this goes next'....I think it's normal to feel this confused?

This has really made me think about how I want to vote on Thursday (General Election) this week.
I was definitely an undecided voter but now am sure I will vote Labour after all. They introduced this system where if you are suspected of having Cancer you will be seen within two weeks - that is certainly what has happened to me.
I'm old enough to remember the people laying on trolleys for days on end in corridors under the last Conservative Government and despite their promises I'm not sure I'd trust them enough to give them my vote. Labour have got a lot of things wrong over the past 13 years, but they've also got a lot of things right.
I shall vote Labour for selfish reasons and for future Cancer patients. Waiting two weeks is difficult enough, waiting any longer would be pure torture.

Choosing the moment

This post is about choosing the right time to tell people about what is happening to me.

I discussed the results with my husband, Rab, once I'd got my youngest son settled into bed on the evening of the 28th. He was very calm, quiet and practical. I explained about the diagnosis, surgery, follow- up treatment and how I felt about the colostomy bag, wondering how it would affect our relationship, and then cried some more.
He said "it won't change anything, I'm not going anywhere and I know two people who have these bags -they're not huge, no-one will know unless you decide you want them to know and your option is to have the bag or just give up and die"...

When you look at it like that it makes you realise you really don't have a choice - well actually you do - either get your head round having a colostomy bag and give yourself a good chance of recovering from this OR just give up and wait to die !!!

As stated in the previous post I have not yet told my mum and dad or my sister - although I've wanted to. My reasons for this are right in my mind and I don't regret the decision to wait and nothing they say once they find out will make me think I was wrong (I've always been stubborn, as I'm sure my mum would confirm :-)...)

In October 2009 my lovely sister, Sarah, moved to Greece to start a new life over there. She came home to the UK for a two week visit in February and I already knew I was unwell by then, but didn't know it was Cancer, I still thought it was the beginning of a Lupus flare at this point.
My mum and dad had a holiday planned for Sunday, 2nd May to go and stay with Sarah for a week - my decision not to tell them what was happening was based on this.
I figure that this is going to cause enough worry and upset once everyone knows, so there's no harm in them getting to enjoy their week in Greece with my sister first. It was important to me that they get this time with her, and also important to me that Sarah was the priority for this week.

Also, knowing my sister the way I do, had I told her in advance what was happening she would have booked a flight and came straight over therefore the holiday with my mum and dad would have literally been ruined and I just didn't want that to happen.

I will fill them in when they come back, hopefully having had a lovely relaxed, stress free time. At least I know they'll be refreshed for what is ahead :-)

Spoke to my friend Louise after the initial appointment with the Surgeon on the 14th. As always she was supportive and made me think only of positive things. I've not filled her in on the full picture as yet because she was going off on holiday to Cornwall with her mum on Friday 30th April and it can wait til she gets back.
Nothing much will change in the next week and at least she can enjoy her break first that way. Have no doubt we'll shed some tears next week and also share some laughs about it along the way as we always do.

Filled in my work mates on 29th when I dropped my certificates off. Got outside and didn't feel I could go in, so text Hazel and she came out to me.
Gave me a huge hug and said we'd go in the back way, said she'd make sure no-one stopped me and we'd hide away in a back room to talk. Christine made us a lovely coffee (after she'd finished knocking over the first one - made me laugh and feel that at least something was normal for a while) and I talked to Hazel about everything that was happening to me.
She was extremely supportive and talked alot of sense in a calm and controlled way - it was exactly what I needed to hear as well.
She's right, I will get through this, I will fight and I have so many people around me that will help. I can't imagine going through this without support, it's hard enough WITH it. Hazel has alot of problems of her own to deal with and I felt guilty putting even more onto her but she assured me that she would have been hurt if I hadn't told her the full story and would do anything she could to help me, all I have to do is say the word.
I'm so lucky that so many people have said 'Let me help, what can I do, what would make things easier'....

I first spoke with my eldest son, James, after the initial meeting with the Surgeon on the 15th April. I then met up with him on the 29th and gave him the full story as we know it so far.
Obviously he was upset but he's tough like me on the outside and simply wanted to know exactly what he can do to help me through this.
I know that when he went home he may well have had a long cry (can relate to that, I've done plenty of crying lately) but like me, he'll get past that and start to think practically.
The support from him and from his gorgeous wife, Leanne, will help me through this. They are both fantastic people and if I get myself in a mess they'll drag me back up again to face the next day.

I've also filled in two of my youngest sons best-friends parents (Carrie and Nayla) as they will be supportive in helping out with his care after school if necessary.

My youngest son, Djamel, is only 10 years old so I needed to get my head round things properly before I spoke to him. I finally tackled this on Saturday, 1st May.
As I expected he cried - but not in a hysterical way, more silent tears streaming down his face.
Then we discussed how he felt about it all. He said he didn't know how he was supposed to feel but said " I feel sad, confused, angry, happy, worried and I HATE Cancer". I assured him that everything he was feeling was completely normal and he should just tackle each one as they appear and discuss with me anything he wanted to and ask as many or as few questions as he felt he needed to.

He said he was worried that if things changed and I WAS going to die that I would lie to him and say "it's going to be alright".
I promised him that if my diagnosis changed at any time in the future I would be honest and inform him so we could plan a brilliant holiday as a family and do stuff while I had time and energy. He seemed happier after this, but I expect him to really go through the mill over the next few months.

Got together with my brother, Eddie, on Saturday evening (1st May). He was shocked but supportive and we had a little cry together (I shall have no liquid left in my body at this rate) but then moved onto what he could do that would help in anyway - whether taking Djamel at weekends or simply talking to Rab whilst I was in hospital and making sure he was coping ok - or whatever I needed him to do.

Finally, Jacqui.......I want everyone who cares about me to know exactly what Jacqui has done for me these last few weeks. She's been a close friend for years now but when I say I couldn't have got through this last few weeks without her help, I mean that 100% sincerely.
From my first conversation with her some months back (my bum's sore, maybe I've got piles - and her telling me YOU need to go to the GP and then reminding me again and again until I finally did) right through to my meeting with the surgeon on the 28th, she has been a complete rock. Attending appointments sometimes sitting there for hours on end with me, running me backwards and forwards with her lovely husband, Pat, to hospital appointments, offering continual support, letting me cry, crying with me, finding things to laugh about, buying me two lovely bunches of spring tulips, texting me every day and also offering practical support with shopping, washing, looking after Djamel or just being there for for him if he starts to feel swamped by it all.

She understood completely my reasons for not wanting to let my mum, dad and Sarah know until I had full results and stepped in to support me in exactly the same way that they would have done. Thank you Jac x

Tests so far

So following on from the previous post, my initial consultation with the Surgeon on the 14th during which a biopsy was taken.
The next tests were then as follows:

14th Biopsy and blood tests

19th April - CT Scan & 'sample'

21st April - Colonoscopy

22nd April - US Endoanal Scan

28th April - MRI first followed by 2nd appointment with Surgeon.

Been a busy two weeks really which seemed to be dominated by one test or another. Also emotions all over the place, once minute feeling quite down in the dumps then the next reminding myself that they didn't even know for sure if it WAS cancer or not. It really is a roller-coaster of emotions.

In between tests I was attempting to carry on as normally as possible - y'know usual stuff, shopping, cooking, sorting things out etc.
Went for a lovely lunch with my friend Jacqui on Friday, 23rd April and actually said to her 'I feel so well today that I actually think they may be wrong - maybe it's just a painful lump'....She didn't really look convinced but went along with my chain of thought anyway. And then Saturday and Sunday I was in agony and it was certainly pay back time for my positive thoughts the day before :-)

Anyway, back to Wednesday, 28th April, (D.Day, as we named it).......
MRI went fine but the full results will not be available until at least the beginning of the next week (w/beginning 3rd May).
Met with the Surgeon later in the afternoon and I was strangely calm and in total control. I discussed with Jacqui earlier that I was expecting a positive result on the biopsy and fully expect them to be talking about chemo/radiotherapy and all I now needed to know was that it was NOT Stage 4 and in what order things would now be happening.

Surgeon was lovely, very kind and gentle in his approach and mannerisms and I found that extremely calming & reassuring. The nurse also sat in with me for this meeting, hence I knew I was on the right track of expecting a positive result.

As fully expected the biopsy was a positive result for cancer and as I expected this will involve surgery, chemo and radio treatments...so far all going according to my expectations and I WAS still calm and in control.
THEN he explained exactly what the surgery would involve and at that point I was no longer in control !!!

Due to the location of the tumour the surgery will involve total removal of the whole rectum and anus and I will have a permanent colostomy bag. I fell apart and my promise to remain calm went out of the window. I still don't know what Stage the cancer is until they have the full MRI results but he asked me to take away with me his belief that we can stop this, and he feels it will not kill me once I've had the surgery, chemo/radiotherapy.

He then asked me if I wanted to be booked in for surgery on 6th May - I refused outright and said I need time to think and absorb all the information. I also want the full results from the MRI because until we know the Stage and what exactly is happening with lymph nodes etc, I don't want to commit to surgery yet.

Went outside with the lovely nurse, sat in the room with her and simply cried. She assured me that she felt I was right to refuse surgery for the following week as I need time to come to terms with this. She also asked if meeting someone who has had the procedure carried out would be helpful - I agreed that it would.

She reminded me (whilst I was saying 'I'm NOT doing this, it's NOT what I expected and it's NOT what I want) that no-one can force me to have the surgery, it has to be my decision and mine alone.
I asked what would happen if I refused and she assured me that they would still provide the best possible care to me but they wouldn't be able to stop the cancer spreading throughout my body without the surgery. She also said that if I did refuse they would still ensure I had the best possible palliative care available. Sobering thought!

What a day! Tons more tears then pulled myself together and went back to Jacqui's for a much needed coffee. Came home about 8.15pm, just as Mum and Dad were leaving and put on my brave face (although not feeling too brave right now) and said I'd been delayed because after my MRI I'd gone to a different hospital with Jac to have her foot x-rayed.
Feel really bad about not filling them in just yet, but I'll explain why in next post.