Wednesday, January 31, 2007
Those of you who read the comments closely will have noticed an advisor who turns out to be called Jan. We have been in touch by email now and it it great for me to "talk" to ppl who have been in this boat.
What is really amazing is that another woman called Jan has also made email contact with me (via the IA-forum.) At first I assumed that these were one and the same Jan, but it turns out they are different women.... Jan from the IA forum lives very near to me, and has had almost the same cycle of treatment for cancer, whereas the Jan who came in here first has had a longer history of living with a stoma and a different set of health issues. Tinternet, dontcha just love it!
Since my last post I've had a steady stream of visitors. Kate came down on Monday and today. Celia D came by yesterday. Last night into today B's sister has been here.
Last night was a real treat cos Graham bought Alice over and we had a Chinese meal (my first since September) and it just felt really ordinary and "normal" (sorry, there's that wretched word again!) Graham was working in Coventry, so he didn't stay; B and Alice went out together for a few hours today, which is a really good break for Brigid. Meanwhile me 'n' Kate put the world to rights!
Toby and Joe
Apparently they regularly ask about my well being, and Toby has said that I need to up-date the blog -- so here you are boys:
Thanks for asking and I am doing OK, my tummy is still pretty sore sometimes, but I can walk about quite well now and am getting enough sleep to help me get better. I am also eating plenty of nice fruit and vegetables and a bit of meat too, to build me up.
I hope you have a nice party for your birthday this weekend and Aunty B has bought your cards so they will be in the post soon.
Then not long after that it will be 1/2 term and we will have a chance to see each other when you come up to Warwick.
lots of love from me, the celebrity patient
Sunday, January 28, 2007
It's hard to believe I've been home for a week ... !
Mand came round for a couple of hours Friday, after work and then James and Kris called in yesterday afternoon so I've had some quality visitors -- and lovely new flowers!
James is SO exhausted from bobbing about and working between London, Manchester and Geneva that his "man-flu" obviously rendered him more ill than mere words can possibly express (well he expressed it but I am sensitive to my readers' needs!)
sleep and food
I managed a full five hour un-interrupted sleep the last two night, which was groovy and have eaten well again .. we've been poring over our nutrient books and seeing what is good for tissue repair, etc. In fact I was fascinated to notice that I kept asking for dishes with onion and leeks and it turns out they are good at blood thinning (anti-thrombosis) which is a very-good-thing, post-op.
I am keeping up the doses of pain killers, but I think my muscles are easing and it is not so hard to breath now. My scar looks very good, mending well, but my skin around the stoma is very sore. I sometimes find the whole stoma-thing quite hard to deal with, really, but otherwise I am obviously on the mend.
lovely card from Toby today - it was presented as another home-made get-well card, but I can't help wondering if the primary purpose was contained in his ps: "only 10 days to Feb 5th"
.. ie their birthday! LOL
Friday, January 26, 2007
Andy came in the afternoon while B was out with Mike, then Kate came down as well. They are easy company and kept me cheerful for a few hours. Kate also bought some DVDs to lend us. B and I tried to watch Groundhog Day in the evening, but our DVD player is going tempermental and keep sticking ..... dunno if we will splash out on new one ... (talking of splashing out .. my car service, MOT etc bill yesterday was over 500 quid! gasp
Had an unexpected card from Joan and Reg, which was very sweet, and apparenly they read the blog too *waves to Joan and Reg* hi!!
oh yum -- B boiled up the bones of the roast chicken to make a very good stock to use in a risotto which was really excellent ... she is now vying for celebrity chef status ... I'm still not eating MUCH but I do feel like my interest in good food is still here!
hmm - perhaps it is too big .. anyrate, in the interests of not sitting up too much, I didn't do any yesterday. What I did do was a bit of sewing, which made me think that a bit of needlpoint would be a good way to spend time in the recliner chair, so I've sent for a good design off tinernet ...
Thursday, January 25, 2007
We didn't have any visitors yesterday, but Andy will be round later and B is going out this afternoon for a coffee with Mike, so she can get a bit of "me-time" which I think is really important for her ...
I had a funny card from my mate Ann in Bristol, which says "You can't have too many flowers" which she sent in response to my earlier post that we've got "enough" flowers at the moment. Of course she is right ....... but you CAN have too few vases!
I've had loads of email to home and work addresses, and will just have to say a generic "thanks" via here, cos by and large I cant sit up long enough to type individually to everyone! I do continue to enjoy and appreciate the contact and news snippets, of course!
B roasted a chicken today and made a glorious leek-filled gravy and mash - which was LUVVERLY. I also ate some raspeberry with my weetabix and some pomegrante juice during the day, so the rainbow is growing again, and fuelling my healing, I'm sure.
it's not easy to sit up to do it, but I do enjoy a few minutes here and there. So far, after three days' effort, the outer edge is still not quite finished! LOL.... Good job we bought one of those things you can fold a puzzle up into.
Tuesday, January 23, 2007
hi folks - well I'm not sure how entertaining this blog can be in the next few weeks as I am pretty well consigned to the four walls. I feel as though there are a few heading cards I can shuffle and lay out in any order that will pretty much "write the essay"
- number and type of visitors?
- cards and gifts?
- bland food?
- moans about day-time TV
- slow progress with jigsaw puzzle ( and yes mum, taking care to not squash my scar together!)
- pain control?
- B as absolute saint
- random things (you see these are probably the best bits but cant be guaranteed each day!)
so .. here's the report on yesterday:
visitors: district nurse came to coo over the "lovely" scar; Aunty B came to coo over me; next door neighbour came to call;
cards and gifts - yesterday's best cards were hand made gems from Joe and Toby (as their mum had written on the back From the "No Prizes For Guessing What We Got For Christmas" JOTO Productions Co.
food - quite good, ate a bit of banana with a warm weetabix for brekkie, sipped some freshly squeezed pomegranate and grape juice with no ill-effect and had lentils and rice for tea. B is sprinkling everything with parsley for Vit C !!
TV - didn't really turn it on yesterday!!!! Watched a bit of Shrek 2 in the evening - luvverly stuff!
pain - well it's not agony, but then, I'm taking pain relief every three hours, so that obviously helps!
sleep - yay - this sleeping in the reclining chair business is really working well and I only wake up three or four times a night now, with the rest mostly properly asleep
saint B - what can I say?? ... she is the most loving and assiduous "nurse" and I am, really, lost for words at how brilliant she is being. She's totally emotionally exhausted herself, really, but she keeps going with caring for me
random things .. .. I got my first lot of stoma supplies from a "mobile chemist" called Trent Supplies that my nurse had liaised with for me .. the stuff is got by prescription. So the stuff arrived at the door by post, and I started to wonder how I'd pay the prescription charge ... phoned them up to ask (she was surprised cos most stoma patients don't pay cos you're exempt if it is permenant, but since mine is designated temporary I DO have to pay .. ) anyrate we discussed this and I said I might be getting one of those pre-pay certificates and she just goes, don't worry we'll stand the cost of your first prescription anyway! random acts of kindness in the business world ....
Sunday, January 21, 2007
Sleep was achieved in the Stressless chair cos it holds me in a fixed position at the right level of reclining (which you can't achieve in a bed with pillows) .... I cant recommend these chairs enough --they are so easy to move to different angles and so comfy to lie in ... and to sleep in -- magic!
we also got a new relaxation tape cos I am very suggestible to being TOLD to relax with words and hippy-trippy music - so that did the trick. At first I managed 1 1/2 hours, and then had two three hours stretches which feels amazing compared to the past three nights of cat-napping and wakefulness.
Saturday, January 20, 2007
yes it is good to be back -- I didn't need anything from the hospital that I cant get better at home --Brigid is the best nurse and such a trooper
I think a lot of the thanks for my speedy mobilisation goes to Erin's idea of making a pre-op tape which we used over and over to power my recovery .. I lost hardly any blood and kept up my deep breathing even tho it hurts a lot cos my abdominla muscles have had a right old push and shove on the operating table
I can't pretend to feel good - in fact I feel pretty grim .. I'm stuggling to sleep, can't lie down at all, have to try and sleep upright and get the most ghastly wind all the time which is so sore and intractable,
anyone know anything that will help? in addition to what I am doing:
trying to keep moving as much as I can
sucking on strong mints ...
We've had Mark here overnight which was good - gave us a sense of security, butI'm not anxious about my revovery ..
love to you all and thanks for cards, flowers, etc .. (we really don't need any more flowers atm!)
Sunday, January 14, 2007
Brigid will be telling my mum and dad how things are going while I'm in hospital and they will add the news on the comments in here.
It is unlikely that she'll be doing many other calls at first, so this will be the main source of messages.
You could call the hospital directly, of course:
and when I am feeling better I can take incoming calls to my room!!!
You won't need to know my room number, cos the place is so small the staff will easily be able to put the call through from just my name.
Should you fancy a more old-fashioned method of communications you could write to me:
The North Staffordshire Nuffield Hospital
Of course I'll be back on-line as soon as I can.
Thanks to you all for you all your kindness, support, messages, cards, prayers etc. I go into this with every confidence and lots of love and good cheer to boost me through it.
In pursuit of ideas on how to make this tape I've found a great site to help:
but I'm sure it's more than a bit ironic when a site like this is supposed to be encouraging positive thoughts starts its "pre-op" section with a detailed list of the things you might be worried about, which actually gives me ideas of things to worry about that I'd not thought of before! e.g.
- Having surgery is one of life’s most difficult experiences. It is a time of ultimate vulnerability and loss of control, and it brings us face to face with our mortality. In addition, there is fear of pain, the unknown, disability, disfigurement, loss, and embarrassment, all the while in the context of separation from family. This is a huge psychological burden that patients must face, in addition to the difficulties of the medical problem they’re having.
and so on ... hmmm .. I've done some of the facing our own mortality stuff earlier today .. and now I'm onto doing the positive thinking tape -- which has got to be healthier ..
I'm also sitting here feeling very sick, sipping peppermint tea :) pole-axed by Picolax
Saturday, January 13, 2007
Obsessed with food?
I ask you - is this a "fair" cancer for someone who loves food as much as I do? *tsk*
Tomorrow is "fast and purge" day in advance of the operation, and then after the op they let me have a few mls of water each hour until they are think the bit of bowel I've got left is funtioning back to working OK ... and then it will be trial and error to see how I cope with different foods .. there is a strong opinion that I should eventually be able to eat pretty much as before so long as I don't eat too much fibre, like fruit skins. Stoma-patients' fave seems to be MASH! yippee!
We have to be at the hospital for 7.30 a.m. on Monday and I'll be going to theatre at about 9.30.
B's mum coming up to be here with her for a few days, she should get here during the morning on Monday.
B has started to pencil in a few visitors, James on Monday, Andy on Tuesday, Mand on Wednesday, Mark on Friday. If you want to see me please check with B first - ideally by text to her mobile -- let us know if you need her mobile number.
My brother, Mark, sent me a lovely email today and this bit in it really made me smile:
- On the bright side, at least you will not be losing anything you want to keep, except a section of bowel. You will still be able to sing along to your fave Nina Simone track without having to skip a line.
Friday, January 12, 2007
I've also seen my stoma nurse, which was interesting and re-assuring. She's put an X on my belly where Mrs Hall is to cut the hole! Her name is Julie!
We are off to Alderley Edge for cocktails and pizza. Just waiting for the wonderful Matt to pick us up, as he has so kindly offfered to drive. We have used the waiting time well - lemon drops and Nina!
Love to you all xxxxxxxxxxxxxxxxxxxxxxx
Thursday, January 11, 2007
I had a great day yesterday -- got myself up and out to get to an early class at the gym, then went to lunch with Kay and Kate... which was lovely...no prizes for guessing where we went! Later on Mandy came round and we had a splendid evening on our own (B stayed with a pal from work).
I've been for physio again today and I really think it has made a big difference, (@ LM - yes I have got heat pads, I just forget to use them!) I also went for blood tests - but sadly she only took two vials of it, when she should have taken three and I've got to go backnow ... hey ho!
Good news, the stoma nurse has been in touch .. she left a message describing herself as the "specialist nurse" and told me that in general they don't leave messages in case you've not told ppl you're having that treatment .. hmm... I didn't tell her I publish all my medical history on tinternet, she might have found that hard to believe as it seems most of her customers are a little bit more reserved than me ... any rate she is coming to see me tomorrow morning -- hurrah.
Tuesday, January 09, 2007
On the brighter side I had a good day yesterday.. a happy hour with my physio has made a huge difference to my stiff neck and shoulder .. it is like magic!
Then I went food shopping, determined to make some food myself this week. I cooked up a few rainbow foods, including red cabbage for later in the week and a big stew we ate last night. I invited Kate down to watch me in the kitchen .. no doubt she was amazed! hahaha .. she wasn't too put off to eat some of it, anyrate!
We just had raspberries for breakfast ... yum .. I know it's not a great carbon foot-print eating soft fruits from MEXICO (bejayzus!) but I do love them and it's a groovy way of getting vit C and the colour of anti-oxidents into my body...
I've still not had any contact from the stoma nurse so getting onto them is a priority today .. and in the meanwhile I've found a stoma-users message board which looks fabby with lots of tips and experiences to share on there .. I'll spare you the link cos it is certainly a case of "too much information" in some of the threads but I think it will prove a real life-line for me....
Sunday, January 07, 2007
Both of us were impressed by beauty of the Lakes, which neither of us have visited for years and years ... so it all seemed new and wonderful, despite the rain .. which, in any case, we're used to, being such fans of Scotland ...
I'm a bordering on the sad and maudlin now, with one week to go till the operation and being a bit (no, actually --- quite a lot) scared of all that stuff ..... hey ho .... it's been brought up-close and personal cos I went for my pre-op meeting at the hospital on Friday. This makes it all too real .....
The nurse says to tell you that if you visit
(liaise with B first cos I will need to be left alone for some of the time )
but if you DO visit while I'm in the Nuffield she says be prepared for a quite scarey scene .. lots of pipes, drains and drips and various machines burring away ... the best of which being the vibrating pads on my legs to stop me getting DVT! She says: "It looks scarey but it is normal and routine" .. OK!
It's worth remembering that the surgeon said I'll be pretty immobilised and weedy for about six weeks, so there will be plenty of visiting opportunites when I am back at home ... esp if B has gone back to work .. she is going to be with me at first ...
Thursday, January 04, 2007
I went to the gym yesterday for aerobics and did the cycle-fit class the day before, when B had a day membership... it was good to go together for the first time in 12 months!
Yesterday I also saw my doctor and my dentist then met up with two mates for lunch at Trentham.
Today I've seen my physio to try and release the painful muscles in my neck and shoulder -- so I'm just going to swim later .. Hopefully I'll get the pain sorted next week, before my op so I can lie peacefully in my bed.
I've also spoken to James and found out where we are spending the weekend (TOMORROW!)
It looks delightful, J has been there many times, and if the weather is too wet to take in the glorious lake district scenery it looks like a good place to lounge around in.
Monday, January 01, 2007
we had a great night last night, with Andy and Azrini .. a really relaxing evening with loads of good food and wine. It was a good way to bring in the New Year. It's the first time I've troubled myself to do a bit of serious catering for a few months so I enjoyed myself putting the pinny back on --- getting it ready all day and then sharing it all night. (recipe tips on application!)
I followed my doc's tip and had (lots of ) champagne although I've paid for it all day today .. I was really zapped and am back on the wagon again now!
It is a strange New Year - knowing that the next "big thing" on my horizon is the surgery and then the convalesence, and maybe more chemo stuff --- I can't say it's not daunting .. IT IS daunting ... but "getting better" has got to be better than getting worse, so it will be happy in the long run!
I hope your own New Year brings you everything you hope for ... and you can keep your resolutions ... I'd quite like to know what your resolutions are, so (if they're printable) you are invited to add them in the comments! My only resolution is to try and not be a grumpy patient ... hehe!