Thursday, 7 January 2010
2010 Jan 7th - PS
I forgot to mention, the relationship thing - didn't work out. No surprise there really, I'm rubbish at relationships. Maybe I'm being hard on myself - he just wasn't "the one" for me. I gave it three months but my feelings waned and it was clear we both felt differently. It's unusual for me to the be one ending things, but the recent death of a friend's father (terminally ill with prostate cancer spread to his bones) made me have a rethink. I can't spend my time with someone I don't really care about that much - however "nice" he is. I certainly won't be with someone just for the sake of it or to ease the loneliness. I'm happy just appreciating what I have which is a very simple, uneventful but reasonable existance in what is essentially good health.
2010 Jan 7th - Seeing the plumber
So today, after only a couple of months waiting I had to brave the road to Lincoln (about 35 miles - single carriageway and unlit for the most part. The journey there wasn't bad at all, and I arrived early enough to buy a £5 body warmer with fur trimmed hood from "thatstorethatknocksoutcheapclothescosthey'remadeinsweatshopsandergopoliticallyincorrect". Figured it was essential.
It was my first return visit in nearly 3 years to Lincoln - where I had five weeks of daily radiation concurrent with 7 weeks of 24/7 chemo. This is particularly relevant since general consensus is that radiation is the main contributing factor to my current waterworks problem (i.e. flow should be 15-18ml/second but is a maximum of 2ml second now and decreasing).
I was the only patient in clinic 4 and pretty much went straight through to the consulting room to wait to meet the plumber.
Mr Urologist (I'm going to call him Uri because I think he could have been Russian) was reading my referral letter (with case history) out loud to a student in the adjoining office as is usual - and at the end he added "this is a disaster, she is very young (not as young as me *chuckle* I'm just a baby but 1970).....she is still only in her thirties". Nice to get some recognition instead of being told how "lucky" I am even if he didn't realise I could hear.
They came through and introduced themselves (don't ask me their actual names - in one ear and then lost forever). Once I told him I'd gone through an instant menopause at 36 when I had the radiation and was therefore now on HRT until I'm about 50, he raised his eyebrows. He seems to think that the radiation combined with the change in oestrogen levels has caused the stricture. He is worried about the effects on my kidneys (with existing scarring from years of repeated UTIs so am I) so was going to order a scan. How fortuitous then, that I am having my 3 year post surgery scan 6 months early on Saturday. My kidneys will be covered on that.
Firstly I have a prescription for "local" oestrogens for 3 months. In the meantime I'll be on the waiting list for surgery, well a surgical procedure. He said I can have a general or a local anaesthetic but with a local - more pain. I told them that after having a 10 inch scar and four hours in surgery for a TME I reckon I can handle the pain if only it means I get this sorted quicker. He hopes it will only be 2 to 3 weeks waiting. The procedure is expected to last for up to 2 years and then will likely recurr. A urology nurse will show me how to self catheterise (basically putting a tube in my wee hole *cringe* weekly) to try and prevent this.
Of course this all depends on the results of my scan but all things point to the initial diagnosis being correct so still no fear that there's anything else malignant causing a blockage.
I met up with the lovely Susie and her eldest Becky for a pub dinner (steak and chips for a fiver ta very much) afterwards but my Beechams at lunch was wearing off so instead of having a cheeky half pint of beer when Susie ordered a bottle of wine - I had a hot water with a spoon for my next dose :( .
The drive home was a bit hairy - it was OK but the traffic was driving at a sensible 40mph since the roads were all white and the verges were all white and the fields...........well you can guess. It was very fine and compacted fresh snow. We slowed to a modest 20mph for a few miles but I got home in one piece with the compulsory slide into my road - with only one set of tyre marks on it already.
I shall keep you informed!
It was my first return visit in nearly 3 years to Lincoln - where I had five weeks of daily radiation concurrent with 7 weeks of 24/7 chemo. This is particularly relevant since general consensus is that radiation is the main contributing factor to my current waterworks problem (i.e. flow should be 15-18ml/second but is a maximum of 2ml second now and decreasing).
I was the only patient in clinic 4 and pretty much went straight through to the consulting room to wait to meet the plumber.
Mr Urologist (I'm going to call him Uri because I think he could have been Russian) was reading my referral letter (with case history) out loud to a student in the adjoining office as is usual - and at the end he added "this is a disaster, she is very young (not as young as me *chuckle* I'm just a baby but 1970).....she is still only in her thirties". Nice to get some recognition instead of being told how "lucky" I am even if he didn't realise I could hear.
They came through and introduced themselves (don't ask me their actual names - in one ear and then lost forever). Once I told him I'd gone through an instant menopause at 36 when I had the radiation and was therefore now on HRT until I'm about 50, he raised his eyebrows. He seems to think that the radiation combined with the change in oestrogen levels has caused the stricture. He is worried about the effects on my kidneys (with existing scarring from years of repeated UTIs so am I) so was going to order a scan. How fortuitous then, that I am having my 3 year post surgery scan 6 months early on Saturday. My kidneys will be covered on that.
Firstly I have a prescription for "local" oestrogens for 3 months. In the meantime I'll be on the waiting list for surgery, well a surgical procedure. He said I can have a general or a local anaesthetic but with a local - more pain. I told them that after having a 10 inch scar and four hours in surgery for a TME I reckon I can handle the pain if only it means I get this sorted quicker. He hopes it will only be 2 to 3 weeks waiting. The procedure is expected to last for up to 2 years and then will likely recurr. A urology nurse will show me how to self catheterise (basically putting a tube in my wee hole *cringe* weekly) to try and prevent this.
Of course this all depends on the results of my scan but all things point to the initial diagnosis being correct so still no fear that there's anything else malignant causing a blockage.
I met up with the lovely Susie and her eldest Becky for a pub dinner (steak and chips for a fiver ta very much) afterwards but my Beechams at lunch was wearing off so instead of having a cheeky half pint of beer when Susie ordered a bottle of wine - I had a hot water with a spoon for my next dose :( .
The drive home was a bit hairy - it was OK but the traffic was driving at a sensible 40mph since the roads were all white and the verges were all white and the fields...........well you can guess. It was very fine and compacted fresh snow. We slowed to a modest 20mph for a few miles but I got home in one piece with the compulsory slide into my road - with only one set of tyre marks on it already.
I shall keep you informed!
Friday, 27 November 2009
2009 Nov 27th - Bored of toilets...no, 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 news...is 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.
Deep.
Joy.
Really.
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 life.....um 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.
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 news...is 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.
Deep.
Joy.
Really.
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 life.....um 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
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
Wednesday, 13 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!
http://www.youtube.com/watch?v=vGurOKs3CWQ
Too late to post now, but here is a link to the video of my dive/jump. Enjoy!
http://www.youtube.com/watch?v=vGurOKs3CWQ
Subscribe to:
Posts (Atom)
