Friday, 27 November 2009

2009 Nov 27th - Bored of, really!

So, I've been a bit rubbish about blogging since I returned to the workplace in April 2008, sorry about that, though I'm sure you are pleased I'm "being normal"?

A lot has happened since my last post.

Against my better judgement (the judgemental part of me that says "Lisa, really what's the point, lets look at your track record") I agreed to meet a man. Yeah, I know I've met a few and I went with a resigned attitude. I even refused to mention his name to a work colleague because I really didn't expect to be seeing him again. I am pleased to tell you I was wrong! That was about two months ago and things couldn't be better.....well, they could of course, but our relationship couldn't be better. So there was a single, kind, caring, intelligent, good man out there after all - and one I'm attracted to. Gadzooks!

I spent a week with my oldest, bestest friend in France helping to look after her three kids, dog and puppy whilst she worked on turning a barn into a den (complete with Wii, TV, English TV, fridge full of beer, sofa, chairs, table for cards, chessboard, projector and screen) and workshop for her husband. Said husband had been shipped to UK for a hospital checkup and a week's holiday to celebrate his 40th birthday with his friends and family. I was utterly exhausted by the time I got home - picked up at the airport by new man (told you he was good). I also managed to catch some dodgy French germs from the little girl staying in their gite meaning I was basically passing water out of every orifice below the waste. That's not something you need to experience with weak pelvic floor muscles, no rectum and stairgates top and bottom when you're looking after a 9 month, 18 month, 7 year old, a daft boxer and border collie pup. I wouldn't have missed it though. I got to have girly chats with someone who knows me, my history, all of it, and whose opinion I respect over wine, drambui, cider and coffee every day.

Ryan air flights £20, hire car £200, ability to spill your innermost thoughts without fear of repercussions - priceless!

I started a new job a month after meeting him, all in the pipeline for a very long time, before I returned to my old job in fact. I now commute 20 minutes a day instead of 140 minutes. I'm only ever going to be working 4 days a week, not 5. The days go by so fast now I'm not exhausted at the end of each day. Weekends I actually have some energy to do things, or nothing as I choose.

Of course all this good this really Lisa's life? I had you going there didn't I?

Remember, remember 5th November. The first anniversary this year of another family member causing untold hurt - and I also had a row with my daughter during which she told me to F**K off and I suggested she ask her father if he would like to put up with her disgusting attitude, since I don't want to have that kind of atmosphere in my home.

A week later, Remembrance day, the 11th November, I came home at lunchtime to find my daughter's boyfriend, her and her father in MY HOUSE removing all her stuff. She said she was going to leave me a note. How thoughtful. So now I have no children living at home and not even the cat to keep me company, just Alfie rabbit. Not only that, but given I was surviving on Tax and Child Tax credits and Child Benefit for food and fuel - that's all gone. Assuming I have to start paying CSA again I'll be £107 per week worse off, leaving me £30 a week to buy fuel, food, clothes, hairdye (no hairdressers now), presents, entertainment, house repairs etc. I did explain this to her, but she doesn't care. She wants an easier life where she is not expected to empty the kitchen bin or put her dirty plates in the dishwasher. Where she isn't chauffered at 7am every college day to the bus stop 13 miles away (1 hour round trip for ME) but has a 30 minute walk instead.

All this time I've been finding it harder and harder to empty my bladder. It's been harder than usual since radiation to shrink the tumours but this last few months it's really grinding to a halt. My "flow" has been reduced to little more than a dribble - I've seen faster dripping taps. My new GP (I finally left the surgery where they seemed to think I was imagining all my symptoms of advanced rectal cancer) agrees that it is most likely radiation damage resulting in a urethral stricture. I have all the glamourous health issues don't I? I couldn't have breast cancer like Kylie could I? Where everyone would feel sympathy at me for losing some of my feminity, no I got cancer in an organ that actually bloody did something useful, necessary to the functional part of my day to day living. And now it seems it's claiming other necessary functional organs. The scar tissue causing the stricture, if stretched and relieved is pretty much guaranteed to return, repeatedly. He thinks they'll stretch it then I'll have to self catheterise myself (that's a tube up my weehole to you) once a week to make sure it stays open.




So, I researched all this, and am half expecting I'll end up with a bloody permanent stoma using part of my small intestine (essentially the same as the ileostomy I had for 9 months) but to wee out of into a bag permanaently strapped to my leg (sex yeah I can forget that then?). How unfair would that be? Or, there are supra pubic versions where you have a sort of tap above the pubic bone that you shove a tube in - but those are last resorts apparently. Not that I am a pessimist or anything......... I have an appointment in January to see a Urologist. That's more than 10 specialist areas I'll have been seen by now. My current fear is that my urethra will close up in that time and I'll end up in hospital unable to pass water with a kidney infection - I already have scarred kidneys from decades of UTIs. In fact I often wondered if the repeated X-rays with contrast (I had two sessions of 1 x-ray every 5 mins for 1hr as a child) to investigate these didn't help with my cancer in the first place?

I am only putting these details in for those who are affected in a similar way so apologies to those of you who are squeamish, but tough luck. I also haven't been eating properly for the last few weeks due to the dramas with daughter and possibly this hasn't helped my insides because for the first time in YEARS I was, what I can only assume, constipated. Me. She of the loose movement forever and ever. Two days. It's unheard of unless I've had Picolax and nil by mouth for over 24 hours! I actually dug out some Senokot and necked a couple yesterday lunchtime. I was in so much discomfort and later actual pain I was almost convinced I had another bloody tumour. I didn't get off the toilet for a couple of hours (laptop and wifi my best friends) literally. I did however have the best nights sleep afterwards.

So that's an update with what's been happening to me pretty much.

Despite everything I don't think I've been as happy in myself for many, many years. I have someone in my life who causes me no pain, only happiness even if we only see each other once a week - he's always there. He's not judgmental or critical, but neither is his life simple and straightforward which only adds to the understanding. I still feel like I might be improving his life, as much as he is improving my life, so there is an equality. I am trying very hard to view my daughter moving out as her moving away for education and not take it personally. I manage it about 10% of the time. I miss my kids.

Monday, 21 September 2009

2009 Sep 21st - Goodbye Skittles

I've been gradually increasing my work hours up towards full time again - I have to be doing a 37.5 hour week by the end of October. I'll have been back to work for 18 months by then. I don't want to, I really really don't want to EVER work full time again. I did not go through all that shite for over two years just to sit in my car for over two hours a day. As soon as I can I'm leaving. There is no option for me to have permanently reduced hours apparently. According to HR I have a full time position, there are no other positions available that are part time. In any case, for the third year running we're just waiting now for the latest "company restructure" to be announced and see whose jobs are for the chop. I hope mine is.

Today I did a full 7.5 hour day plus a half hour lunch. I had to wait ten minutes for my daughter to meet me from college and it took nearly two whole bloody hours to get home. I was tired when I got up, I was very tired by 4pm and by 6pm still sitting in Peterborough rush hour I just wanted to cry with tiredness. We got home and there on the drive was our cat, Skittles. Our neighbour had laid him on a plastic box lid away from further harm. It looked like he'd had a head on battle with a car. I haven't stopped crying for long since we found him. Karys helped me dig his grave in the corner of the garden where noone walks but near some flower beds under a tree where I think he'd be happy. After everything I can't believe how such a little fluffy thing could mean so much to me, but he did. I only had his company for two years, since he was a little mischievous kitten. I got him when I started my second lot of chemo and he was my sleeping partner. He slept curled up on me when I slept. He sat on my knee and kept me company, he made me laugh when he chased flies and spiders and Alfie rabbit. He made me cross (but in a fun way) when he climbed up the Christmas tree, knocked it over and played with the baubles till they fell off then chased them round the room until they were "lost" under the sofa.

Right now I don't want another cat, it was a special window in my life when I had months to give to a tiny kitten to make sure he got used to our house without being lonely. I don't think I could leave another cat on his own while I'm out all day (for 12 hours) and I certainly know he was a very special cat, we had a special bond because of the days we spent together which few people can do.

I hope you didn't hurt much or for more than a moment Skittles x

Tuesday, 12 May 2009

2009 May 10th - AFF Skydive

Whoop whoop!

Too late to post now, but here is a link to the video of my dive/jump. Enjoy!

Tuesday, 17 March 2009

2009 March 17th - Jumping For Joy

YAY! It's official - I'm barking.

Checkout my little widget gadget wotsit top right hand corner! I've signed up to do a parachute jump in May in aid of Beating Bowel Cancer. If you've got any spare cash after Comic Relief then I'll happily relieve you of it.

Things are definitely improving due to a combination of things. Partly it's the weather, the lighter evenings and SAD affecting me less, mostly it's anniversaries and festivities out of the way which, I'm sorry, just do NOTHING for my seratonin levels. I also had to have "a few stern words" with myself on more than one occasion and finally I think I listened. So did friends, luckily and even better I've been out and about partaking of the odd medicinal bottle, I mean glass of wine.

There's a very very nice man about at the moment who I'm hoping will stay around because he's also making me rather happy at the moment (keep your fingers crossed for me please).

I'm making more effort at the gym again after the rib incident and although I still get odd twinges I'm determined to get stronger and fitter (and hotter :o))

Work is getting even busier and I'm involved in a lot more projects just like before I was off sick but now wondering how I'm supposed to fit it all in, in 25 hours a week.

I hope everyone is making the most of the sunny days we've had lately


Thursday, 26 February 2009

2009 February 26th - Tum te Tum

Well, it's been fairly quiet this year so far, I had a week of ibuprofen and eventually my ribs aren't really causing me any bother. I actually still have differences on my left side but have decided not to worry about it.

It's just about a year now since I was in hospital wondering if I was going to die! Weird. I saw my surgeon a couple of weeks ago again and we had quite a good chat. We went over what's been happening over the last 2 1/2 years including me being "very frightened and worried" after the reversal surgery didn't go to plan. "So was I, so was I" he reminded me. He was in every day to see me - including Saturdays (twice) and Sundays, trying to find out what was going on and why I was so ill. It was a grim 10 days. It was made so much worse by withdrawl from my drugs and losing my son - it's nearly a year since I last saw him and spoke to him.

I've done a fair bit decorating the front room now - waiting for Paul to put up new coving so I can replace the curtain rail (need to see where coving comes to before changing) and finish painting and there's the floor to fit (have another male friend who has kindly been bribed into helping with that - it's all bought and delivered) and then paper the ceiling and change the light fittings (also already bought).

It's looking a BIT more like MY home and not just a house I live in while I'm waiting to move somewhere else.

Taking pride of place is the secondhand cross trainer I bought off ebay for £25 because I am soooo fed up with this extra stone + I'm carrying around (and the lumpy belly thanks to weird scarring which is just odd). If I'd not had a few weeks off the gym because of the stupid rib pain it might have helped, but no point dwelling on "what ifs" - I've been rationing my calorie intake to between 1260 and 1500 calories a day plus exercise as much as my tiredness and work allows (and after Ben's LBT class on Tuesday pain levels). I've managed to lose 4 lbs in nearly two months which is actually not that bad I suppose.........but I've not lost any more in three weeks and it's really getting on my nerves! I just did another 20 mins on the cross trainer for the end of the Master Chef final - I find exercising stops me wanting to gorge myself stupid watching all that scrummy food on the TV!

I've been generally pretty down this last three months having lost ANOTHER friend (I have had three friends just drift away because I had cancer which just proves how much they really cared in the first place) and now my "best friend" who to be honest I'm not that upset about any more because she had spent the last year or two moaning at me about her troubles and then refusing to speak to me any time it looked like I'd met a bloke (and emailing me from the same office to tell me how jealous she was that I went on two dates with someone who I never even saw again anyway). I know I probably wasn't as supportive as she needed me to be - but I had the rib thing going on and she neither noticed nor gave me the opportunity to mention it - we just weren't there for each other any more. Bit like getting divorced really :o(

Still, I'm not going to allow myself to use being tired as an excuse for not seeing people this year - I'm going out tomorrow night and I've got a friend staying next weekend, then two weeks after that a 40th party weekend. I need to start putting friends names in my diary so I can make sure I see them - it's really easy to get out of the habit when you spend your life in and out of hospital (physio took up a fair bit of time last year too).

Also I should mention Karys did exceptionally well in her mock exams (exceptional because of me being ill for a huge chunk of her exam coursework years) and is set to get As and Bs and Cs and generally has done really well. I'm very proud of her.

Maybe I can actually turn things around this year?

Monday, 2 February 2009

2009 February 2nd - Bone Scan Results - Clear!

Well, to cut a long story short, the bone scan was clear.

Funny, how three whole months of pain, worry and hiding my true fears and feelings from pretty much THE WORLD can be erased with the simple words "the bone scan was clear".

Over Christmas I came to terms with the fact that I've been married, had and lost children, got divorced. I've travelled, I've dabbled in things I shouldn't. I thought, yeah, I'm ready for it I don't think there's that much to look forward to any more, all the attempts at dragging myself out of clinical depression without drugs - I won't have to bother any more. If it's cancer in my bones I'll have that to take my mind off everything.

My son still refuses to have anything to do with me after almost a year and I can't help thinking my daughter won't really miss me either. It would be a right royal pain since she's nowhere else to live and I didn't really want to mess up her last year of school with a Stage 4 diagnosis.

Happy days.

New Year I was planning how I could get the whole house decorated before I was incapacitated again, so that I could get a decent price when I had to sell it.

I'd rewritten my will in my head.

Of course that's all academic now, because - the scan was clear.

The swelling is still there. What is it? The oncologist thinks I injured myself somehow and the cartilage at the end of the rib is inflamed. I'm taking ibuprofen for a week now to see if that makes it go away, or I can go back to see onco and they'll ask radiology about doing bigger x-rays or different scans.

I'm taking the NSAIDs - but I don't think I'll go back. If it was anything nasty I reckon it would have shown up on the chest x-ray, even if it's not in any bone.

So now I have to get on with life again, but it's a bit chuffing difficult when I don't know where to start? Every time I start again I get some kind of cancer scare, or some other crisis that knocks me off track and rekindles old traumas.

I just feel like there are so many others who deserve what I appear to have (remission for 19 months and counting) and I don't know what to do with it now I have it. I've spent over two years living and breathing cancer and now it's gone I don't know what to do, I don't feel like I have a purpose. I'm not really much of a mother any more, I enjoy being at work much more than I enjoy being at home. I'm hoping the inspiration for a "rest of my life plan" will arrive at some point very soon.

Wednesday, 21 January 2009

2009 January 21st - Going Nuclear

I've been thinking about getting back to this blog for a while now, but deep down I think I associate it with being ill. Sitting on the sofa with a blanket, laptop on my knee with just the cat for company.

Back in November 2008 I started to get a sore pain around one of my left ribs, which wasn't helped by it being under my bra underwiring. It was annoying and there all the time and got worse after being away from the gym for four weeks (due to tummy bug and two other viruses) when I had 10 minutes on the cross trainer. By the time it got to 6 weeks, which is the time it should take for any muscular damage to heal, though I have no recollection of anything that could have caused injury and it started weeks before I got to sneezing with colds and flu, I made an appointment at the surgery. By this time I was in sharp pain every time I inhaled and deep breaths made my eyes water. Unfortunately the only option was to see the first GP who I saw about my illness which turned out to be stage 3 rectal cancer, it wasn't my first option, but she had at least requested some tests, though recorded my blood loss as spotting - it wasn't spotting!

As seems to be typical for me I had to wait over Christmas for the results to come back for any confirmation of a broken rib and leaking calcium in my blood (x-ray and blood tests). They came back normal.

The pain was getting better by this time, possibly aided by my expanding my rib cage a lot while I finished stripping paint and paper off the ceiling and walls and eventually got to painting. What hadn't improved was the growth around the rib - it's like the rib has doubled in thickness and is now more prominent than any others. I made an appointment at the oncology clinic, having tried in vain to make an appointment at the surgery - usual story, nothing to pre-book so you have to ring up at 8.30 every morning and try and snaffle an emergency appointment.

The Lone Ranger (my onco) was on holiday for the first week of January so I saw him on the 15th. He'd been storming his way through the clinic and I barely sat down when I was called through EARLY! The nurse on that day was the same nurse who used to work in endoscopy and was the first person to comfort me on finding out I had cancer in December 2006. I can still bring to mind a mental picture after the surgeon left us, in a darkened, otherwise abandoned ward - it being after 5.30. That's the moment my life changed and she was there so I feel a special bond.

I was in pretty good spirits considering, I'd managed to wait 6 weeks before checking it out, knowing that's what I'd have to do if I sought medical advice any earlier. I wasn't convinced it was cancer and knew how rare spread straight to the bones is. I just couldn't find any other explanation for a growing rib at my age with or without cancer history. I fully expected him to ask me some questions and then say there is really no chance of it being a tumour with my symptoms. Until the day before I thought about cancelling the appointmen, not wanting to be a time waster! That is until I was drying my hair after 20 minutes on the cross trainer when I got a really breathtaking sharp pain in exactly the same place. It didn't last too long but was a bit sore afterwards. He felt the rib and it is a bit tender still when pressed and I can still feel something, thought not really pain on certain movements. He checked that the pain was always in the same place - yes. Then he said we'll check it out with a bone scan. GULP.

Over Christmas while I was waiting for the test results to come back I spoke online with a breast cancer patient with multiple metastases in her bones, including her left rib in a similar spot to mine. She said that her tumours were not picked up on blood tests or x-rays - only on a bone scan. Even after they had been identified and she is having treatment for them they still don't show up on x-ray. At this point I was thinking I might have to demand a bone scan as the pain was still quite bad. As it wore off, I decided it must have been muscular but just taken longer to heal.......onco said there's no reason for me to take longer to recover now, this far out of surgery and chemo. Oh. OK. I'm not sleeping marvellously, unsurprisingly and I have been very tired for the last three months, which I told him I think must be down to viruses and just the fact that it's winter.

So I'll be back to Pilgrim on Friday at 11.30 for my nuclear injection and then a three hour wait (and hopefully something good from the hospital canteen for lunch) before my scan at 14.30. I'll see the Lone Ranger again the following Thursday at clinic.

Since then I've been researching spread to bones from colorectal cancers and have come up with the following from research papers:

Bone metastases are more common than previously thought.
The average age of patients with bone mets is lower than that in patients without.
Cancers of rectum and cecum are more often accompanied by bone mets than other parts of the colon.
Bone mets alone with colorectal cancers are very rare.

So that's not terribly helpful - it means it's bloody hard to find anyone to talk to who might be in the same position.

More frustrating is that I can find nothing about having an enlarged rib, where it's actually the bone that gets bigger that is not some sort of tumour malignant OR benign. If it was a soft tissue growth then I can find allsorts of stuff, like cysts or infections. The skin isn't red or inflamed.

I just don't FEEL like it's cancer, which I was sure I would if it showed up again. But then I think back over all the months of various aches and pains which I resolutely ignored and excused as recovery from chemotherapy and remaining side effects of radiation. I've had a lower back pain again over recent months which was where it all started, I put it down to the car crash back in 1992 but it turned out Tyson was just causing pressure, the pain went with radiation. It's not as bad now by any means, but is it an old injury exascerbated by radiation and chemo and age or more tumours? The aching and sharp pains in my hips, knees, ankles, elbows and wrists - are they down to the chemo still, the radiation, tennis elbow from painting? Ankle and wrist from the fall I had back in August? They should have healed by now but I don't want to spend my time at the GPs checking out the multitude of niggling things I have - I'd never be at work or at home or getting on with my new life.

The bone scan, which I assume will be a full body one will at least answer all of those questions for me. Then hopefully, I can get back on with things! Or start an entirely new chapter of my life. I keep pushing those thoughts away because there's just no point trying to plan around a recurrence until you have the facts. I've done a pretty good job of keeping hysteria away from my mind and I'm not about to let it take over now. Well, I do a little bit in bed, in the dark, alone. Who wouldn't?