Struggling a bit now.......

DO NOT READ THIS POST IF YOU DON'T WANT TO HEAR GRAPHIC DETAILS OF MY SYMPTOMS ....

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) :-)

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?'.......:-(

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.

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) :-)

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 :-)