Where shall I start?
After France, the day after I got home I had what I can only describe as a light period (sorry chaps, fact of life and all that). Having gone through an instant radiation induced menopause in early 2007 I was a) annoyed and later b) a bit scared. I've been on HRT now for six months and I'm supposed to have a withdrawal bleed in the first few months according to the notes but I never did so for it to start out of the blue made me panic a teeny bit. I had an oncology appointment so figured I could mention it there first.
The Lone Ranger said I should get it all checked out (meaning a smear I assume) and referred if necessary. He also said I should look into getting massage/physiotherapy for my feet since they're just getting worse. That aside, apparently I was looking really well and shouldn't consider going to work full time for some time and to take it easy. He said if it was up to him I'd have another three months off to enjoy the summer before having to work. Guess what? It's NOT up to him.
I eventually got a GP appointment for the following week, discussed it with him and he persuaded me it had taken my womb all this time to rebuild a lining to shed and it was just a "normal" withdrawl bleed - a fake period, to be expected on this sort of HRT. I mentioned that I'd also bled on the two occasions I'd had *cough* physical relations but we also talked about my painful feet, which seems to be achilles tendonitis. Google research tells me that amongst other causes, platinum based chemo is to blame in my case. I can self refer (done that) for physio but he said I should try stretching it in the meantime.
I returned to work on Wed 23rd April and have now done three days for three weeks......except this week. I had some coffee late Thursday night which probably wasn't a good idea and lay awake with stuff buzzing round my head on a caffeine high until gone 4am. NOT a good idea on a school night, I wouldn't mind if I'd been drunk but although I'd been to the pub (with a very nice man) I was driving.
Just to throw a spanner in the works, as if it's not a minor stress enough that I've still not officially had a clear scan, I've been bleeding again this week, it started as spotting and I wasn't sure of the origin (this is me we're talking about I bleed at the drop of a hat lately) but is definitely becoming more noticable but this time it started in the middle of my tablets, not after the full monthly pack.
Having booked a smear since it was due soon which GP said should reassure me on the initial bleeding, I discovered that until you get your invitation letter you can't have a smear!
Does every other woman know this? Apparently if your surgery sends a smear slide off to the lab one DAY before your letter, they send it back untested!!! I sort of lost the plot a bit and felt all the same panic and lack of control, the fear, the terrible powerless feeling that I had back in October 2006 when I was pushing for tests for bowel cancer. Government guidelines and rules and regulations coming between me and my peace of mind when I most need it. To top it off, as I sought refuge in a car park near my surgery after leaving quickly before I cried in front of everyone, some idiot sped round a roundabout and tried to push in front of me, followed me into the carpark and had a go at me for "nearly taking his front end off". It's bollocks. He was in the lane nearest the roundabout when I was already taking the exit he decided he wanted to take. He got some choice French words thrown at him and after accusing me of being aggressive I asked him how many times he'd had cancer and to go and multiply.........It's not often I let all this crap get to me but sometimes I am ashamed to say it does and I react in a way I'm not really proud of but I'm only human and it's hard. Perfect is boring anyway.
So, my GP rang me at home to "chat" about things and I told him about the new bleeding and as he's away most of next week has squeezed me in on Monday morning. I think it's 4-6 weeks for results on a smear. He said there are other HRT causes of bleeding but at least now I have my letter I can have the smear quickly.
Here's one up for discussion:
At what point in my post diagnosis life do I risk another relationship? I was hoping that returning to work I'd have some sort of NED clean sheet. (No Evidence of Disease). In it's absence I don't think it's fair to inflict my possible future upon any unsuspecting (or knowledgeable) male. Always waiting.........waiting for appointments, waiting for tests to be booked, waiting for results, waiting for treatment, waiting for reassessment...........and round and round and round again. Stop the world, I wanna get off. Just for a little while.
Sunday, 27 April 2008
Wednesday, 16 April 2008
2008 Apr 16th - Au Revoir Biz et Mimi :o(
After three years of only providing my passport as proof of citizenship and identity when registering with work agencies (which proved pointless because then I found out cancer was eating me from the inside out) I used it for it's intended purpose last week!
I booked a ticket just before midnight on Monday and at 8am Wednesday was on the way to the train station. By the afternoon I was inhaling 3 month old baby smell and sitting on a navy version of my own sofa!
On Thursday I went with my oldest friend (of 26 years) to collect her eldest daughter from l'ecole. There was much kissing and chat (not from me) and I got a good look at the infamous Frederic, Elizabeth's beloved teacher (you wouldn't say no girls). We'd spent the day doing pretty much what you do when you've known someone that long and just hanging out - I even managed to take over ironing the 100% cotton bed linen for the gite when one Hayley's French friends came round. It's weird how you just fall into things so quickly, like they happen every day. Even though they moved out there three years ago and it was my first visit (oops) we've been in touch at least weekly, often daily through msn - free chat, you can't knock it, but it's not quite the same as arriving at the airport where there's a huge long hug awaiting you and making your luggage feel weightless all of a sudden.
On Friday it was lunch out to be ogled by hoards of French workmen at Le Lion D'Or with Christianne (and baby Mimi of course) and obviously I had to help drink the bottle of red wine that was present on every table but did resist knocking back the cider, wow self control, is that a side effect of cancer treatment? I had thankfully packed a pair of 3 in heel boots so I was the tallest person in the entire restaurant - yes they were probably only staring at my height but I don't care, there were real MEN looking at me when I went to get my buffet starters!
We had raclette in the evening - yummy! Google it, I'm not your French dictionary! OK, OK, it's a large griddle where you heat salted meats and little mini pans take slices of cheese which melts underneath and can then be scraped off onto the rest of the food waiting patiently on your plate, we had potatoes and salad with it and it was rather yummy, though after pigging out at lunch I was worrying about my lack of gym visits AND the good food.
Us four girlies drove into Fougeres to the market and I tried some clothes on in a boutique but wasn't quite feeling it - everything seemed to cut across the widest part of my thighs so I restrained myself from buying "just because I like it". Elizabeth had been promised MacDonalds as a treat so I had Le Menu and even managed to go back and tell the young (not spotty) lad he'd forgotten my coffee (after a reminder from Hayley, my O level French is still buried very deep back in the 1980s).
The husband of the French visitor earlier in the week came by (Hayley is doing some invitations for them on the computer) and after mentioning who I was, then discussing the health of one of the fish in the tank, Laurent enquired if "she is single", don't ask me WHY Hayley assumed this was about the fish, but she did - much to Laurent's amusement. Apparently they always ask, but I'm pretending it's because his single brother is incredibly hot and rich.........yeah dream on.
All too soon it was time to come home, after croissants and scrambled eggs we set off for Pleurtuit and accidentally ended up in a crepery for galette complete and a cup of cider (when in France! ). More coffee in the airport bar (slightly different setting to those lazy Saturday mornings when we were kids drinking black coffee in Hayley's mum's kitchen. My flight was almost delayed by 70 minutes which we didn't get told until we were seated and belted but fortunately it turned out to be 10 minutes. The house was very cold and empty when I got home, although Karys had arrived a few minutes before me and was tapping away at the computer as usual, I missed the family environment when the children are still small enough to just love you because you are their mum. That's not enough when they're teenagers.
I really should get a move on and get to the hospital because I have an oncology appointment tomorrow and I should have had a blood test by now.....oops. Too busy getting my hair done and going out on dates with men!
I booked a ticket just before midnight on Monday and at 8am Wednesday was on the way to the train station. By the afternoon I was inhaling 3 month old baby smell and sitting on a navy version of my own sofa!
On Thursday I went with my oldest friend (of 26 years) to collect her eldest daughter from l'ecole. There was much kissing and chat (not from me) and I got a good look at the infamous Frederic, Elizabeth's beloved teacher (you wouldn't say no girls). We'd spent the day doing pretty much what you do when you've known someone that long and just hanging out - I even managed to take over ironing the 100% cotton bed linen for the gite when one Hayley's French friends came round. It's weird how you just fall into things so quickly, like they happen every day. Even though they moved out there three years ago and it was my first visit (oops) we've been in touch at least weekly, often daily through msn - free chat, you can't knock it, but it's not quite the same as arriving at the airport where there's a huge long hug awaiting you and making your luggage feel weightless all of a sudden.
On Friday it was lunch out to be ogled by hoards of French workmen at Le Lion D'Or with Christianne (and baby Mimi of course) and obviously I had to help drink the bottle of red wine that was present on every table but did resist knocking back the cider, wow self control, is that a side effect of cancer treatment? I had thankfully packed a pair of 3 in heel boots so I was the tallest person in the entire restaurant - yes they were probably only staring at my height but I don't care, there were real MEN looking at me when I went to get my buffet starters!
We had raclette in the evening - yummy! Google it, I'm not your French dictionary! OK, OK, it's a large griddle where you heat salted meats and little mini pans take slices of cheese which melts underneath and can then be scraped off onto the rest of the food waiting patiently on your plate, we had potatoes and salad with it and it was rather yummy, though after pigging out at lunch I was worrying about my lack of gym visits AND the good food.
Us four girlies drove into Fougeres to the market and I tried some clothes on in a boutique but wasn't quite feeling it - everything seemed to cut across the widest part of my thighs so I restrained myself from buying "just because I like it". Elizabeth had been promised MacDonalds as a treat so I had Le Menu and even managed to go back and tell the young (not spotty) lad he'd forgotten my coffee (after a reminder from Hayley, my O level French is still buried very deep back in the 1980s).
The husband of the French visitor earlier in the week came by (Hayley is doing some invitations for them on the computer) and after mentioning who I was, then discussing the health of one of the fish in the tank, Laurent enquired if "she is single", don't ask me WHY Hayley assumed this was about the fish, but she did - much to Laurent's amusement. Apparently they always ask, but I'm pretending it's because his single brother is incredibly hot and rich.........yeah dream on.
All too soon it was time to come home, after croissants and scrambled eggs we set off for Pleurtuit and accidentally ended up in a crepery for galette complete and a cup of cider (when in France! ). More coffee in the airport bar (slightly different setting to those lazy Saturday mornings when we were kids drinking black coffee in Hayley's mum's kitchen. My flight was almost delayed by 70 minutes which we didn't get told until we were seated and belted but fortunately it turned out to be 10 minutes. The house was very cold and empty when I got home, although Karys had arrived a few minutes before me and was tapping away at the computer as usual, I missed the family environment when the children are still small enough to just love you because you are their mum. That's not enough when they're teenagers.
I really should get a move on and get to the hospital because I have an oncology appointment tomorrow and I should have had a blood test by now.....oops. Too busy getting my hair done and going out on dates with men!
Friday, 4 April 2008
2008 Apr 4th - Insurance.........or lack of!
I'm pleased to say I've started going back to the gym again. I went nearly two weeks ago on Tuesday 25th March, just a month after my operation, just to do some cardio and a couple of resistance exercises on equipment not to mention a few squats. I went again on the Saturday and then this week on Wednesday when I pulled out all the stops and did quite a few more exercises, especially on my blancmange thighs. I didn't walk well before, but my legs have definitely been protesting the last two days! Still I might drag myself back there tonight because I had a month off and I am on a mission to speed up my general recovery.
My feet are much, much worse and I really do think I might have permanent damage now. The areas of pain are increasing and I can't even stretch my legs without feeling like something is tearing or burning inside my heels and the sides of my feet or my right big toe! That's just not right is it? Thinking about it, things took a turn for the worse when I saw Dr Tom the oncologist just before surgery and he said not to bother with the Pyridoxine (B6) any more as it was only useful whilst ON chemotherapy. So was it just coincidence that when I stopped taking it things went downhill? Hmm. Poking about reading experiences from other sufferers I'm not sure so I've started taking them again, having just got a prescription filled when I stopped. I'll give it a couple of weeks and then I'm seeing Tom again so hopefully I'll have more news.
I can't remember if I mentioned in my last post that I'll be having my "1 year post op" scan at the beginning of June (ish) at which point I might finally be able to get the champagne out and celebrate being in remission or NED (no evidence of disease). Those damn spots on my liver are still a cloud hanging over me dangling the threat of Stage 4 (no stage 5 remember). At what point can I actually start getting on with my life? If the scan shows no more spots it means they were chemo damage and my liver has healed itself, if not, well I can't really be bothered to contemplate the options too much, more surgery, more chemo, radio frequency ablation?
Don't get me wrong, it's not really worrying me. There's no point worrying, it won't change anything and if all is well I'll have stressed my mind and body out for another few months for no reason at all! That's just silly! So as Angela once said: "I refuse to get excited until I know there is actually a problem". Good advice there.
Speaking of Angela, we braved the bright lights of Boston town on Saturday after I had been to the gym, dismantled a high sleeper bed and constructed a single bed to replace it...........(yeah wonder woman, that's me). Three glasses of wine, chips and mayo, a cab ride home and a chocolate eclair (bought from the kebab shop no less!) later.................I discovered red wine and my new internal system do not agree. I was up with diarrhoea a couple of hours after going to bed, the likes of which I hadn't really experienced since Tyson was still in residence.
Just in case it wasn't the wine, I had two glasses last night. It was the wine.
Onto the title of this post......insurance.
I got a letter in the post today with a copy of my anaesthetist's bill for £165 as a private patient telling me that my private health insurance cover (provided by my employer) expired on 31st January 2008. Remember the advice on not getting excited until you know there is a problem? I'm pleased to say I sat down and thought about it calmly before ringing work's HR department who rang our benefits department immediately. I wasn't in a panic because I rang the helpline in February to check I was covered for my ileostomy reversal and they said yes! After they refused to pay for the creation of my J-pouch I wasn't risking anything. Luckily it turns out our policies were transferred to BUPA so I am in fact still covered. I guess it's all part of the buy out of the company and major shareholder that took place around the same time.
Oh and more news - I'm going back to work on 23rd April. EEK!
I'm going to try three days that week and then do a couple of days a week after that to start with and see how I go from there. I am questioning the sense behind an early return, not because of my energy levels, but because the weather is improving and I could actually spend some time in the garden this year without being in pain or attached to chemicals or just feeling too damn ill. I need to get amongst people though. I have been holed up in this house for 13 months now and I'm going a bit stir crazy. Getting out to the gym is good, there are at least real people there even if I only know two or three to talk to, it makes me feel a little more like I'm part of society and not some imperfect outcast.
I'm going to treat myself now and watch Loose Women with a mug of something hot before I go and do some shopping (nice shopping, not groceries). I want some pretty things for my bedroom now it's decorated (just one wall of skirting and a small hole to fill and I'm done. I want a new pole, curtains and mirror and maybe something decorative on the walls. I might even post some before and after photos at some point...........oh god the before picture is horrid, it's going to make anything I've done look marvelous, sorry anything MIKE did.
My feet are much, much worse and I really do think I might have permanent damage now. The areas of pain are increasing and I can't even stretch my legs without feeling like something is tearing or burning inside my heels and the sides of my feet or my right big toe! That's just not right is it? Thinking about it, things took a turn for the worse when I saw Dr Tom the oncologist just before surgery and he said not to bother with the Pyridoxine (B6) any more as it was only useful whilst ON chemotherapy. So was it just coincidence that when I stopped taking it things went downhill? Hmm. Poking about reading experiences from other sufferers I'm not sure so I've started taking them again, having just got a prescription filled when I stopped. I'll give it a couple of weeks and then I'm seeing Tom again so hopefully I'll have more news.
I can't remember if I mentioned in my last post that I'll be having my "1 year post op" scan at the beginning of June (ish) at which point I might finally be able to get the champagne out and celebrate being in remission or NED (no evidence of disease). Those damn spots on my liver are still a cloud hanging over me dangling the threat of Stage 4 (no stage 5 remember). At what point can I actually start getting on with my life? If the scan shows no more spots it means they were chemo damage and my liver has healed itself, if not, well I can't really be bothered to contemplate the options too much, more surgery, more chemo, radio frequency ablation?
Don't get me wrong, it's not really worrying me. There's no point worrying, it won't change anything and if all is well I'll have stressed my mind and body out for another few months for no reason at all! That's just silly! So as Angela once said: "I refuse to get excited until I know there is actually a problem". Good advice there.
Speaking of Angela, we braved the bright lights of Boston town on Saturday after I had been to the gym, dismantled a high sleeper bed and constructed a single bed to replace it...........(yeah wonder woman, that's me). Three glasses of wine, chips and mayo, a cab ride home and a chocolate eclair (bought from the kebab shop no less!) later.................I discovered red wine and my new internal system do not agree. I was up with diarrhoea a couple of hours after going to bed, the likes of which I hadn't really experienced since Tyson was still in residence.
Just in case it wasn't the wine, I had two glasses last night. It was the wine.
Onto the title of this post......insurance.
I got a letter in the post today with a copy of my anaesthetist's bill for £165 as a private patient telling me that my private health insurance cover (provided by my employer) expired on 31st January 2008. Remember the advice on not getting excited until you know there is a problem? I'm pleased to say I sat down and thought about it calmly before ringing work's HR department who rang our benefits department immediately. I wasn't in a panic because I rang the helpline in February to check I was covered for my ileostomy reversal and they said yes! After they refused to pay for the creation of my J-pouch I wasn't risking anything. Luckily it turns out our policies were transferred to BUPA so I am in fact still covered. I guess it's all part of the buy out of the company and major shareholder that took place around the same time.
Oh and more news - I'm going back to work on 23rd April. EEK!
I'm going to try three days that week and then do a couple of days a week after that to start with and see how I go from there. I am questioning the sense behind an early return, not because of my energy levels, but because the weather is improving and I could actually spend some time in the garden this year without being in pain or attached to chemicals or just feeling too damn ill. I need to get amongst people though. I have been holed up in this house for 13 months now and I'm going a bit stir crazy. Getting out to the gym is good, there are at least real people there even if I only know two or three to talk to, it makes me feel a little more like I'm part of society and not some imperfect outcast.
I'm going to treat myself now and watch Loose Women with a mug of something hot before I go and do some shopping (nice shopping, not groceries). I want some pretty things for my bedroom now it's decorated (just one wall of skirting and a small hole to fill and I'm done. I want a new pole, curtains and mirror and maybe something decorative on the walls. I might even post some before and after photos at some point...........oh god the before picture is horrid, it's going to make anything I've done look marvelous, sorry anything MIKE did.
Subscribe to:
Posts (Atom)
Posts
