Better Days

A really long sleep on Sunday night when I got back from hospital - in bed by 8.30 pm and not really surfacing until 12 hours later - apart from the bag trips of course...

And yesterday a very lazy slow day - but almost completely painfree and with a behaving bag as well! Oh - and my first go at Tesco Online Shopping - we'll find out tomorrow if I've accidentally ordered 3 onions and a scouring pad instead of a balanced week's groceries...



Today has been much the same - I woke fairly early and had a bath and wrote a few emails and stuff but but about 11am I needed a lie down which basically turned into a nap till 1! I can't say I've done much more this afternoon either. Part of me feels a bit guilty about all this lying around ( feeling I should be pushing myself a bit more ) but it's funny, this time it feels more like I really need the rest in itself - not just to recharge my tank from what little exercise I do. I wonder if it's related to my painfree state - in some way my body is able to focus more on the rest that it needs, rather than the pain.

I don't think I've mentioned my night sweats before have I? ( Just checked back and can't find anything) They started when I was in hospital the first time but I just put it down to the horrible rubber-covered matresses and pillows you have to sleep on. But it's still happened since I got home. I'll wake up completely drenched two or three times in the night and have to change my T shirt and pillow case. ( I can't change my sheet myself so I just alternate sides and air the bed during the day.)

I tried looking it up on some of the sites yesterday and although there are lots of references to them in relation to cancer, I can't find anything that makes sense in terms of my particular cancer, or my medication ( not really on any at the moment ). I'm wondering if there's a link to the radiotherapy I had but I can't see anything - I'll have to ask the nurse on Thursday. More an inconvenience than anything else but it'd be nice to know.

Oh - I 've abandoned all pretence at post-cancer chic. I 've found an old pair of huge shorts and a big baggy sweatshirt. SO comfy!

Home Tonight

I had a CT scan on Friday and they found another small abscess so I went back to theatre on Saturday to have it drained. The operation seemed very straightforward and it was a relief to wake up with just a pad rather than the drainage tube last time.

That's probably why when Mr Bain showed up this morning (does the man have a home life?) he said I could go home today.(J's going to collect me this evening.) He said they'd found a small abscess but nothing major - and I must say (with huge touching of wood) that I don't seem to have any pain at the moment. I'm on a course of antibiotics and have to come back for a check up next week.

My own bed tonight!

Spoke too soon! (II)

Well - after my optimistic posting yesterday lunchtime, I'm afraid things went in to a decline as the day went on. The pain stayed at bay but the the stoma contents got more and more liquid and over the course of the evening I had to replace the bag 3 times. And I mean "replace" not " empty " - it just kept leaking and coming off.

It was so depressing - I just didn't feel I could trust it all. J was over and she was great - really supportive - but it worried both of us. As I was pretty sure that it was the Diclofenac that was causing it, I came off that and went back on codeine overnight. The last bag of the night held OK and although I had a somewhat nervous night, it was still fine in the morning and things had become less fluid.

Of course, my bottom was hurting again...

J had to go off to a meeting in London this morning and left at about 7.00am so I just waited for Sue the Stoma Nurse to show up - at about 11.30 am. I told her the full story and she said she was in a way less concerned about the pain, than what was causing it after all this time. So she pulled a few strings and within about 10 minutes I was talking to Mr Bain my consultant who said it sounded like he should have a look at it in the hospital tomorrow.

So - it looks like I'm going back in for a day or two for them to check things out - he said to pack an overnight bag. I can't say I'm looking forward to it - but this has been going on for a while and I need to sort things out - and that really does mean going in.

I've also felt very tired today - and of course a bit low, but I'm beginning to pack myself a bag for tomorrow and have arranged a taxi for the morning.

Off we go again then - I'll be in touch when I can.

Touch Wood...

...I may be getting on top of that pain problem.

I had a really uncomfortable evening last night and just couldn't get settled. At one point I was almost tempted to call the doctor. In a way it was self-imposed because I've been cutting down on the codeine - but I really don't think that codeine helps much really anyway - it's such a blunt painkiller. Everything is fine for about 40 mins after I take it and then the pain comes back again and I have to wait at least 4 hours before I take another one. I know I need something more specific for this particular pain.

Anyway, early evening I suddenly rembered that I had some Diclofenac in the house which I use for occasional relief of gout when I get it. I knew it was OK to use because it had been given to me when I'd been in hospital - I just hadn't used it much. ( They have this funny system in hospital that with some of the optional medications that you're prescribed, you actually have to remember to ask for them - and if you don't, they put it down as a Refusal - and then when your medication is reviewed, it's taken off the list.)


So I took a tablet at about 6.30, and, as I say, still had a very uncomfortable evening on the sofa. ( Even Real Madrid V Arsenal didn't really console me...) At about 11.30 I decided to go to bed but took another tablet anyway thinking to give it a chance to work through.

And sure enough, I had a really good night's sleep ( just one trip to the toilet) and woke this morning with no pain! I mean it - none.

So I've had a good morning doing ( but trying not to overdo) stuff - including another walk to the Co-op. (It's bloody cold out there I tell you!) It's a little bit sore now - but by no means as bad as it has been.

I'm not going to push things too much - so I'm going to have a quiet afternoon and rest. But well, hopefully...

Slow

I've been home for more than a week now and am definitely on the mend. The thing is it's not quite as simple as that. I've still got quite a lot of pain in my bottom which is beginning to concern me - not that it's getting any worse, I think - just that it's still there and the codeine has a limited effect. I tried unsuccessfully to talk to the Beating Bowel Cancer Helpline and my own Bowel Care Nurse at the hospital today ( neither available till Friday) and the nurse on the BACUP line was helpful but could only really recommend that if I was concerned I should speak to my GP or consultant. I'll do that if I need to - but I do know that there's a residual fear that it might mean going back in to hospital - and although I wouldn't be silly about that, I'd be lying if I didn't admit that that's not at the back of my mind. I'd much rather sort this out with a bit of advice or some different medication. But for now, I'll leave it ( unless it gets worse ) and talk to Sue the Stoma Nurse about it on Thursday when she visits.

Also still getting very tired from the slightest thing - even writing a letter! That's particularly noticeable over the last two days since I've been looking after myself - everything just takes so much effort. But I'm feeding myself OK and sleeping well ( apart from when the bag calls...) and not getting low in myself.

My friend S came over last night after work - nice to see her for a chat - and also to have saved a couple of jobs to ask her to do - like putting my dustbins out! Although I don't have any pain in the operation scar on my stomach at all, apparently I have to be really careful with lifting things because there's a real risk of hernia.

J is over tomorrow - and then I've got other visitors on Friday.

Oh - and good news in the post today. After about 8 attempts, the well-respected poetry magazine Other Poetry has agreed to publish a ( much edited ) version of one of my poems!

Here it is:

October

and first frost expected

thought lost

etched in laced dreams of glass

edges iced

and a letter to a lover

penned from the front line

ripped open eagerly

as snow falls smiling

I wrote loads of other half poems and notes and ideas while I was in hospital - I'm going to try to make some sense of some of those this week.

Birthday Boy!

IMG_1502
Originally uploaded by Menage a Moi.

Well - we made it to Warkworth! This is me perched on my little blue stool ( as in seat...)taking a rest on the way back to the car. We had a lovely walk on the dunes ( rather I sat and watched J on the beach!)and a quiet meal in the pub in the evening. ( The first birthday meal I can remember in a very long time that didn't involve alcohol!)

Then a long night's sleep at the hotel and a wander into Warkworth on Saturday morning.

But it was a lovely birthday - quiet and happy.

This morning J and I walked down to my local Co-op store which is maybe 1/4 mile away but it felt like I'd really achieved something getting there and back. Of course it was followed by the obligatory nap.

Still in some pain from my bottom - am going to ask others about it on one of the discussion groups tonight - see if anyone else has had the same.

Apart from that I plan a quiet evening and probably an(other) early night.

Going to try to settle to a routine next week of getting stuff done in the mornings, napping in the afternoons and having visitors over in the evening.

Home Alone

Thanks for all your good wishes - sorry I don't get to reply to all of them always but I do read them all.

Mum and G went home this morning - bless em, they've been up for nearly a fortnight and, in spite of my earlier misgivings, it's been nice to have them here for my first few days at home. As well as getting my meals cooked and generally having some company, it's meant that I can ask them to move any heavy things around for me - and G has been brilliant with sorting little DIY jobs about the place. The man is a genius - as well as sorting my hot water problem (which had defeated two sets of plumbers), I now have a new stair banister ( indispensable) - and new wall lights, and doors that shut and a back gate that doesn't stick. Oh - and some plastered holes that I'd not even noticed needed doing!

Healthwise I think I'm getting slowly stronger - certainly eating OK ( still don't feel like drinking alcohol at all though..) - and the stoma is fine. Having a few problems with er...leakage from my bottom ( fellow ostomy people will understand..) but I'm finding ways to manage that.

Sleeping OK but need to be up at least twice a night to sort the bag which can be annoying when I've got myself comfy and am in a deep sleep. Stoma Nurse Sue did a home visit this morning and seemed pleased.

J over tonight - it'll be great to see her. It's my birthday tomorrow ( 47!) and hopefully we're going to go up to Warkworth overnight on Friday to stay at The Sun Hotel and have a low key birthday stroll on the dunes and a nice dinner. Maybe a chance to get some photos taken too - get some more interesting stuff up on flickr again.

This is still living after all...

Home at last!

Finally got home at about 2.30 this afternoon. Blogging this from my WONDERFUL Own Bed!

Now for another nap - more later.

I feel better already.

Spoke too soon!

Sunday morning - Still in hospital. No-one seems to be able to make the final decision about when I can have this damn drain tube removed so in it stays - and so do I..

Feeling OK in myself and more upbeat - just don't feel like I'm beginning proper recovery until I'm home. There's also a kind of clock ticking over the chemotherapy - it has to be begun between 4 and 12 weeks after the operation (it's nearly 3 now ) but they also have to deem me "recovered" from this operation - and I know in myself that that's going to take a few weeks yet.

Fingers Crossed...

...but not legs. Well - not until they've removed the drain tube, which should be this afternoon. Then, if all is well, they say they'll let me go home tomorrow.

Here's hoping.

Day 17 in hospital

After my trip to theatre yesterday I now have a drain tube ...er where the sun don't shine. Not at all pleasant.

They think they've solved it now - although my temperature is still up a bit. We'll know in a few days.

Feeling a bit low today - I suppose it's because I never expected to be in hospital this long.

Ah well - just have to keep on keeping on eh?

Still in hospital...

and doing OK. l have to go back to theatre today for them to drain an abscess. They think that that's the cause of my continuing high temperature.

But apart from a level of discomfort I'm feeling alright in myself. Very keen to get out of here now but it looks like I'm going to be here till at least the end of the week.

Feeling Stronger

Still not sure when I'm going to be out. I'm beginning to feel a bit stronger - but the simplest thing like going for a shower still wipes me out for half the morning!

Stoma working fine and I'm getting more accustomed to it now.

I think that the main reason delaying my escape is that my temperature keeps "spiking" unexpectedly and they'd like to get to the er...bottom of that.

Blogging is also technically quite difficult here - apart from the fact that my concentration keeps drifting!

Thanks for your individual and collective good wishes.