Sunday, April 29, 2007

Wow

Cheers!
(scroll down for recently added pics!)


The hotel we booked near Conwy was brilliant.

We had stunning views from a huge private lounge with balcony in addition to a comfy bedroom and swish bathroom. The weather made it all the better and this was a lovely break. We celebrated B's birthday in top-style, and wonder where we can go next that can match it for peace and beauty ...




We went to Bodnant Gardens twice (marvellous, but new batteries in camera went FLAT so no pics .. )
We met up with Mr K and his beau for drinks on Saturday .... and saw Aunty Barb and Cliff at their caravan on our way home ...



Modelling one of the tops I bought for her birthday



She doesn't look a day over 40 does she?

hehe

More Pics of the room and the views:




You can see the scale of the lounge from these two pics



Mr K in pensive mood



Close up of B's birthday bouquet


Interior courtyard of hotel

Thursday, April 26, 2007

Biddulph

Sam whisked me out for the day in her lovely little silver Alpha Spider yesterday .. what a treat! First off we went to the Country Park near Knypersly, which was full of bluebells ... I walked all round one of the lakes, which felt pretty much of an achievement!

Then we had a pub lunch (including the new fave-health food du jour: CHIPS!) before pottering over to Biddulph Grange.. which was lovely as ever .. and then you just cant go to these National Trust places without having a drink and a piece of homemade-style cake, can you?
.. I'll be the size of the back of a bus again in due course ..










Wednesday, April 25, 2007

indomitable

/indommitb’l/

• adjective, impossible to subdue or defeat.

ORIGIN Latin indomitabilis, from in- ‘not’ + domitare ‘to tame’

HAHAHA -- or should I say "neigh" ....
_________________________________________________________

I am definitley feeling bit brighter today. Getting a good hair-do is one of my top-tips for getting through this, that and having a lovely bunch of indomitable mates, obviously ...

I bumped into Trish yesterday (she used to work on reception at college and has left now, after recovering from breast cancer). No prizes to those who know her for guessing where we met? (M&S of course .. where I've ever bumped into Trish!). We've been trying to fix a meeting for a few weeks now.

We had a great chat and are going to meet up again in a couple of weeks. Goodness knows what gory details and medical jargon the idle shoppers in Per Una got subjected to, as we stood there for an hour trading tales!

Today there are two treats in store, one slightly more appealing than the other ... in the red corner we have Sam arriving to whisk me off for a country walk ~ perhaps to Biddulph Grange .. and in the blue corner we have the prospect of moderating the A2 language coursework. Hmm ...

p.s.
~ if any of you need a reminder, it's the lovely B's birthday on Tuesday (May 1st) which is a bit yuck cos I'll be in hospital ... except it's not really yuck, cos we'll start celebrating it on Friday and she can make a week of it!

Monday, April 23, 2007

tired

tired tired tired
I'm just so tired

I've got no energy at all today .......... good job I never fixed for any visitors
x

Sunday, April 22, 2007

Weekend

We went over to Derby yesterday to see the Kedleston Hall, which is very lovely. One thing those rich imperialists could do was commission a good architect (Robert Adams) and spot a fine bit of land for their "garden". The grounds in front of the hall are beautiful and I'd say the building looks a lot better in real life than it does in its photos.

Today we went out to buy a few plants for bedding and B potted them all out. I was asleep all afternoon, so not even able to supervise, but I'm sure she's done a good job.... hehe.. she's out running now and has got a chicken roasting in the oven for tea ... she looks after us very well.

Oh one thing I did mange to do for myself today was make a bit of lunch. We had locally grown asparagus .. admitedly from Sainsburys, but still, it was lovely. Our own favourite asparagus farm near here hasn't got any crop ready yet, but it wont be long I'm sure.

There's a tree on the land opposite my window here that has just sprung its leaves... they are so pale and upright that they look like magnolia flowers, in a huge tree. It's stunning. (re Magnolia --- how sad to think that such a lovely flower has been so disparaged as a paint colour.)

Time to go xxxxx

Friday, April 20, 2007

home 4

wayhay
another one done!
Bleugh .. I've felt really sick this time, but not BEEN sick, unlike the woman I befriended in there last time who is on the same timetable as me .. she has been proper poorly .. where as I am OK and sleeping better than ever when I'm in the hospital. I guess I'm gettting used to falling asleep in that strange environment ..

I had a good clutch of visitors this week. It was lovely to see Freda again after so many years though I admit it made me a bit emotional, somehow, maybe for times past, and especially thinking of Elaine and the others from those Congleton days ... I don't really know WHY it made me weepy, but it did!

The weather is so great .. I hope it keeps up over the weekend.

Monday, April 16, 2007

Holiday Snaps


The mother and father of it all with the new van
and golden wedding flowers


The mother and father with their three kids
Tracy, Mark, Mum, Dad, me, John, Julie


The grandparents and three grandsons
Joe, Mum, Dad, Luke, Toby


They call this sunbathing in Tenerife!


It was windy that day...


Father and son time



Cool Dudes aren't they!


Left the best laugh till last ...
I know ppl won't believe that John did sport without photographic evidence!

Radio prog

Radio two has a prog about chemo on today.

The woman from Cnacer Bacup just said, yes it's true that 1 in 3 of us will get cancer now, but 80% of these will be "cured" or have the disease as a chronic condition which gets treatment, settles down, flares up and gets treated again. She compared that to living with asthma ..

That's interesting.

They aren't saying much that I dont already know but they are emphasising the progress that has been made in treating cancer and especially the nausea control with chemo now being so much better.

There was a lovely young girl on who has written a book for children called "Chemotherapy, cakes and cancer" and mention of site just for young ppl with cancer .. sounds like time to update my links list .. though I may have forgotten how to .. !

Phone is Back

So that's the good news .. we cxan use the phone again .. though waiting for nearly a week obviously is dreadful service from Virgin ..

B has carted off back to work and I am a bit lonesome after all the bustle of the holiday time, which has been brilliant. Thanks to everyone who we saw over the past two weeks .. YAY!

I'm going to work on some photos today and should have a few jolly images to post up here soon..

Thursday, April 12, 2007

NTL

Sorry to anyone who has left phone messages on our land-line over the past few days .. but it is buggered at the moment

yes, it SOUNDS like the phone is working .. BUT NO it isn't really .. and although you can apparently leave messages we cannot access them,
or recieve calls
or dial out

And NTL are SUCH a great (sic) company (or VIRGIN blah as we have to call them now) that they cannot send an engineer out b4 next MONDAY!! And even to complain about this rather rubbish service means joining a 48 hour waiting list for someone to call me back on the mobile!

So in additition to losing the only Sky channel we really like on the whole panoplyof channels they offer (Sky sports news) and appearing to double my call costs on the phone I'm now phone-free for at least a week ..

I'm really starting to regret the switch to NTL (tho I'm still happy with the bit I've always liked, the broadband has been good for ages) I cant see that the "new" deal has really been much of a bargain ... :(

Monday, April 09, 2007

Joe's question

What’s the worst thing about having cancer?
This was the question Joe struggled to frame for me as we sat in his caravan this Easter. I wonder if this is a fresh thought for him or whether he has been pondering it for a while. Joe’s sense of empathy is amazingly well developed for a little lad, indeed it always has been, so this question is by no means unusual. These things interest him.

It’s a bit of a flanker as questions go. He made me think and I had to think quickly. In the first instance I’m thinking of an answer that will work for a nine year old and what I come up with is plausible. I tell him that the worst thing was having the operation, having a big hole cut in me that was sore for a long time. This answer works well; it’s concrete, physical and easy for them to relate to. We can quickly move onto other topics.

But it’s not that easily answered a question and it has hovered in my head since. This writing has emerged from Joe’s question and I am reflecting now on the “worst things” about cancer.

I guess everyone has their own idea of what the worst thing is about having cancer, what it would be for THEM if they were faced with it. What are your ideas on this?

I think your answer must depend on the type of cancer you get and the circumstances of your life. Most of the people with bowel cancer whom I’ve met on the IA forum are a lot younger than me, which seems harder immediately. One is a single parent with toddlers, and to my mind, nothing I’ve gone through, or will have to face, can compare to that reality. She has had to continue working through her chemotherapy treatment and keep going with her daily routine with her kids against that inescapable background that her children might be left motherless soon. I doubt that there could be much “worse” than that.

But enough about other people! What about ME? What are the worst things about having cancer from my point of view? I’ve been thinking.

The first revision that I did was one I shared with Joe later the same day. I changed my answer from the operation to “Not being able to play properly with you”. I’ve always played with them in a roughty-toughty way. I have rolled around on the floor with them, chased them about the house and thrown them in the air. In particular we’ve invented our own game called “Swing Café” whereby I role-play a temperamental maitre de and they are clients in my “Café”. We have different types of “push” on the menu which they can choose when they are sitting on their swing.

OK!
It doesn’t sound much, but it is to us; we play it for ages whenever we get together. They might have even out-grown it this year anyway, but Joe knew what I meant by playing properly, “Yeah,” he agrees, “Like Swing Café.”
“Yeah, that’s right Joe, like that.”
And the way that even a simple, sedentary game like guessing which hand I’ve got a coin in has been booby-trapped by chemo-sore veins and their having to treat me like a glass figurine instead of bashing me about the way they usually do. I’m not a natural for the glass figurine job.

Later that day Julie and I were mulling over Joe’s question together. Julie put forward the idea that having your future snatched away from you might be the worst thing. I’m strangely casual about this. I just don’t engage with that idea. Maybe things have got to get much worse before that strikes me as a real thing. I also mostly manage not to be afraid of my own death. I dunno if I can keep this up if things get worse, but NOW I’m cool with it, and only very occasionally get a wave of fear about that (and about things getting worse, pain-wise.)

What CAN upset me on this theme is the thought of other people who really love me being without me…if this cancer carts me off, there will be such gaps for my friends and family. Brigid will be bereft, as I would be if she left me. This thought has the power to chill. Right from the start I’ve been most likely to weep at this, for both Brigid and my nephews. These are the people whom I would most like to protect from “missing me”. It’s a hidden “worst thing” - that realisation that we cannot do everything for the ones we love and some things are far outside of our control.

Losing their aunty is something I don’t want my nephews to experience. Toby and Joe are very good at treating me like a glass figurine; they control their natural bounce very well around me so I feel I’m already watching them from another place. I have sat on the promenade watching them on the beach, play trust games with their dad, wishing that I could stand behind them too and let them drop back into my arms, safe in the knowledge that I’ll always be there.

Ack – you see, none of us know that, do we?

So what’s the point of dwelling on it, any of us?

Rather prefer to think that I’ve seen more of Luke, Toby and Joe in the past eight months than I’d usually see them in two years. Seeing more of EVERYONE has been one of the best things about cancer. Taking time to really enjoy simple pleasures and to do that “living in the now” thing has been an unexpected benefit of being ill.

I’m extremely lucky enough to have the money and the support to be really quite comfortable in my “illness”.

I’m living at a slower speed these days, shrugging off the madness of the pace of modern life. I’ve long thought that the race we usually live in is so far from “civilised” as it is possible to be. How can it be the height of modern progress that people are at work for longer and longer hours and more and more stressed and even unhappy if current news stories are to be believed? Is this all our 21st Century progress has brought us to?

I’m enjoying the opportunity to duck out of all that. To be slow and relaxed and spend time with people who love me.

Here’s a tip:
Don’t wait till you have cancer to review how you spend your time and consider your priorities!

Sunday, April 08, 2007

Easter

Happy Easter everyone!
The sun is shining and we are back home.
We had a glorious time with the family down in Lyme, too many things to go into detail in here.
I am a bit tired as well, to be honest. Have had to get antibiotics for an infection and generally feel a bit whacked, but happy.

It's a year today since our Civil Partnership .. what a year at that! I love my wife so much, and she says she still loves me, more than ever, so that's got to be good! She certainly looks after me very well.

We are now all interested in looking for caravans! The camper-van thing has waned after we looked at a few and considered it in detail, we think towing will be better !

Friday, March 30, 2007

home 3

Yay - another lot of chemo completed.

Rather bad news is that my white blood count has finally tipped very low, and it was touch and go whether I could have the cycle this time. I've got to have some injections next week which are supposed to build up my bone marrow and thus my white blood cells and thus my immunity ...

I'm a bit nervy about catching anything now but going to skip off to Lyme anyway .. TOMORROW!

My mouth and hands are very sore - but I look very cute with little silk gloves on to protect my hands .. I bought these gloves as thermal layering for on the bike, and they are doing a good job now allowing me to continue typing!

I'm TIRED ...

Tuesday, March 27, 2007

walking

hi - I did a lot of walking yesterday, which was very groovy. This included a visit to the GP then a good stretch around Trentham with Kate and then a walk down to Finney Gardens pub in the afternoon with B (this is why I missed you Po - I tried to call you in the morning, but you were out - and I've got visitors mapped in while I'm in The Nuffied this week).

B and I are thinking of buying a Motor Home .. so traipsing around the UK can be made easier and spontaneous while I am doing this chemo ... to maximise the days off ... Good Idea, eh!

This sunshine inspires that sort of idea, of course, but I've been a happy camper for well over 20 years and only recently got totally fed up of camping in a tent, so the Motor Home thing seems the obvious next step .. hmm!

Saturday, March 24, 2007

Golden Anniversary

24th March 1957






Ahh, don't they look lovely?



Legal Bit!





Aunty Barbara features here at a bridesmaid - 2nd from left.





(left to right) Grandad Toft, Nana Toft, Dad, Mum, Nana Astbury, Grandad Astbury and I think that's Granny Bloor on the end -- but mum can tell us later!

Mum, Dad and my mum's brother, Kingsley


Rather fabby cake - made and decorated by Grandad Toft.

Thursday, March 22, 2007

Thursdays

I love Thursdays .. when I am at home the worst of the chemo yuck has worn off and I feel quite chipper .. (ie like today)
and when I am in hospital they soon start putting "clear liquids" into me, rather than the cytotoxic stuff, which hurts less .. and then it's only one more sleep till HOME TIME .. which is always good ...

Tuesday, March 20, 2007

Blue sky

It's so bright and blue here today .. really lovely (thos still icey cold).
I had a decent day yesterday .. mooched about on tinternet for a bit... dozed a bit and then went out to town for an hour with Kate ..

B even got home form work at a decent time, which was good, and we watched Jean on telly in the Dispatches programme about domestic violence ... grim. 9the topic, not my very own lovely Jean!)

I've got visitors planned for today, and will doze in between, though I really need to get out and stretch a bit .. which is very important too ..

Monday, March 19, 2007

bleuurgh

bleeuurgh

That pretty much defines the day I had yesterday .. couldn't seem to shake off the bad-belly (nauseaus and diah... however you spell it - you'd think I'd learn, really ...)

I felt so tired all day - no energy for even a short burst of something ...

I was certainly not good company, poor B!

This is how chemo can get to you ..

bleeuurgh....

On the other hand
Keeping going the retro photos theme (which has proved a winner with some readers) dad has been scanning and emailing old photos ... if you've got some at home you think I should use, please do the same! These put a smile on my face ..

Julie, how old were you here in this glorious mini-skirt and sensible shoes combo?



1974
Dad says it was 1974 ... Julie's first day at High School in her new uniform
That means I was nearly 15 in this shot - that's Year 10 in new money. Note the platform shoes.
Mark would be Year 9 .. he looks it, doesn't he!

Sunday, March 18, 2007

Herons

Forgot to say earlier, but when Liz picked me up from the hospital on Friday we went to Trentham and walked by the lake .. we saw LOADS of herons. They are amazing .. so BIG and still able to get into the trees to perch/nest.


We counted as many as eight at one time. On the info. board it says there are 42 pairs nesting there!


These aren't my images - but they give a good idea of what it was like.. (except the trees are still bare up here, obviously) Hence you can see the birds in their nests and watch how they manage to land, folding in their huge wingspans in some feat of engineering

Friday, March 16, 2007

Home 2

Another one down!

Gosh it's nice to be home, and good to catch up on my email and posts in here. It's great to be hearing from my old school pals --- I'm going to root out a photo or two .. hahaha .. that's worried them all!

This time I've not been so nauseous, but my fingers are hyper-sensitive, not only to cold (which I've had before) but touch generally - so this typing is a bit of trial, but it wont stop me .. this side effect is called peripheral neuropathy.

Here's a scanned snap from 30-odd years ago --

we were on holiday in my Grandparents' caravan ..

I feel I should make an effort to get in touch with Glenda Gayday, does anyone know how to?

In this one you can just see my nana in the window, and alongside us is the famous Grandad Toft, who is oft cited in this blog as an inspiration to me in dealing with cancer.


I can't find a picture of Mandy S at this time ... apart from her wedding one!

Oh well, in for a penny ...





Monday, March 12, 2007

Anniversaries

Hey ho - we had a decent weekend, nothing dramatic (of course) but peaceful and cheerful. Rini came round last night for an hour or two which was fun.

I've slept a lot during the day today - if I exert myself there has to be a pay-back, it seems.

Other than snooze I have started to sort out what we can do at Easter to get a little holiday down South .. looks like we can get a van in Lyme Regis.
We really fancy the idea of being by the sea at Easter...
April 8th is our first wedding anniversary -- I think it's safe to assume that we're never going to match mum and dad, who clock up 50 years together at the end of the month!

and thinking of weddings leads into ....

"Small World"
funny thing - Ian called us last night to say he'd just been in Brum and met a couple of guys whom WE had met on our honeymoon in San Fran! Maybe they'll pop in here when Ian tells them the address

hi there Donald *wave*

There is also something a bit sad about thinking about San Fran, cos we had the most fantastic time, and met some lively ppl but it was also when I first noticed the symptoms which eventually got this diagnosis..

a quite other sort of annniversary ..

Saturday, March 10, 2007

race for life

A couple of friends I've made on t'internt, who are also dealing with cancer, are asking for sponsors in this year's Race For Life. If you would like to sponsor them, then this is their link:
http://www.raceforlifesponsorme.org/spottydog

If you want to know more generally I've also put a permenant link to the Race For Life site in my links alongside here -------------->

I know a gang of women from work ususally involve themselves in this massive fundraiser for Cancer Reserach, so when I find out their space I'll post a link to them too.

Friday, March 09, 2007

nice at the back

@ Julie - re mum's coiffure -- I know - I did raise "NVGBC" with her on the phone, but she insisted it is nice at the back ..

And, on the topic of celebrity coiffure ... the woman in Estee Lauder complimented me on my hair colour today
hmm, at this point you might wonder why I'm in Estee Lauder territory at all, but you know, sometimes you just NEED another lipstick, and I specially like their everlasting ones -- cos they do everlast, or at least more than 1/2 a day --- and they did have one of their free gift deals on again ..
so
*shrugs in a powerless fashion*

And while I was feeling quite chipper for an hour or two today I thought I may as well do MORE shopping and I have invested (great word that) in a classic Spring Coat from M&S..
(more @ Julie, dja remember when you were trying on a very silly, very short, bold check skirt in Hanley, many moons ago, and the sales-lass said it was an investment piece and you said "What I'll leave it to my kids in my will?" )

Which was almost as daft a bit of sales-pitch at the woman who told me I could wear my totally sequin covered toreodor jacket "anywhere" ... tho I obviously fell for it, while you spurned the lovely little skirt...



Just to prove it, here is a pic of me "anywhere" in said sequin number .. this must be Christmas about 14 years ago -- see mum equally dolled up in her best beads and dad setting a sartorial standard all of his own!


Indeed you might appreciate two shots of this investment piece -- which of the boys would most appreciate it as an heirloom?

Thursday, March 08, 2007

bu$$eration

I have spent all day in hospital for a ten minute procedure! Left home at 9.30 and got back at 6.00pm

cos the list was running late ~ I didn't go down until 90 minutes after my scheduled time, and then I couldn't come home when I came round, cos the surgeon had left the building and I had to wait for him I to come back to talk to me ....

and the news was BAD .. cos he hadn't been able to do the job due to (surprise really) that bit of me is TOO SMALL even for his expert techniques to deal with ... so that solution is OFF and he's gone away to think of something else ...

hey ho - the only bright thing about this is that cos we decided to pay for this ourselves to make sure we had an expert (well my folks are paying actually cos BUPA don't cover it) --- that plan could be said to have paid off, cos there could have been serious complications if a less expert doctor had forced the issue and maybe damaged my innards ...

superhuman!

following on from Mark's comment on the previous thread - oh I dont mind you portraying me as super-human, and generally all this stuff doesn't get me down, but I'm not going to pretend it's all hunkydory all the time ... sometimes I feel a bit sad and certainly the chemo makes me feel battered and, well lets face it, poisoned!

Part of the "sadness" is an effect of losing my ovaries and hormones to the cancer .. so hopefully the progress made on getting my HRT will help me there anyway. I've got to go back into the hospital today to deal with part of that as a minor surgical procedure.

Yesterday was lovely .. I was a lot less poisoned feeling for a start! I went to my GP again .. tralalala we're all on first name terms up there ... and then I had a couple of hours at Woolfie's house. He is such a good listener ... or at any rate let me talk almost non-stop for the whole time!

Sam them came to whisk me off for lunch. The Lounge was MASSED out so we had to revert to plan B - Fat Cats,which I still like - haven't been in there for months. Since I'm supposed to be avoiding food poisoning (and not really eating out!!) I decided that CHIPS would be the best thing to have to eat .. potatoes aren't a know carrier of nasty bugs and they are cooked at very high tempertature, and probably just scooped from wire basket to plate without human contact. This is a great excuse for eating chips, eh!

Me and Sam had a great talk about all sorts including religious ideas and I took her round to Anadi's to get a book about Yogananda. I hope she likes it!

Sam has also bought me and B a lovely present -- a "pamper day" at a Marriot spa which is valid for over a year so we can go and have a luxury day when the medical treatments are all over .. how cool is that??!!

Monday, March 05, 2007

too much detail

hi - it is hard to know what to post without going into too much detail for the general readership! I am very much "the patient" at the moment, rather sickly, decidedly tired, easily overwhelmed and with another new procedure in the pipeline I seem totally taken over by a medical model.

However, in addition to the new stuff I've been sorting out today (HRT related)I've been able to rest quite well and have got plans to see ppl this week, in addition to the medical stuff.

I do believe America's Next Top Model will be on soon, too .. so I'll toddle off and see!

Saturday, March 03, 2007

Home 1

So, the first lot of post-op chemo has been imbibed ...I feel not too bad.

Celia D gets special mention for the flowers she sent in: pinky white tulips and purple anenomes in a beautiful presentation box, which just encapsulated the spirit of Spring. Everyone who came into the room commented on how lovely they were, thanks very much Celia!

Had lots of visits from Brigid, Little Mummy and Big Dad, as well as Liz, Kate, Aunty B and Cliff - I didn't even have time to write any cards which I had thought I would do. I guess I was tired too, seemed to doze quite a lot when I was alone.

It's good to be home . and the sun is shining.

The images don't really do justice to the real thing - but these are the flowers that Celia sent!

Tuesday, February 27, 2007

Going In

I might be a bit incommunicado for the next few days -- I'm not on-line in the Hospital (Nuffield charges are crayzee!) tho you can phone me there easily enough, if you want to ..
I dunno if B will up-date .. there might not be much to say .. S had a drip, still has a drip, S is doing more dripping ...
and hopefully no allergic reaction to the Avastin - which is why the doctor has to be on hand the first time you have it .. and why they changed my admission day to gather his "needy" patients at the same point ..

I just realised I never told you about a couple of nice things that happened this week:
Marakesh
Matt and Kasia came to supper on Friday and they bought round the most lovely present, from their holiday in Marakesh. It is a huge cotton (silk?) throw in heart-warming sunny colours that is guaranteed to put a smile on your face. We love it .. many thanks...

We also saw their photos via the laptop - which is a good way to get vicarious pleasure ... I'm not that keen on long-distance travel for myself and think photos are a good way to do it!

Woolfie and Rahim
On Sunday we went out for dinner with Woolfie, to the Turkish restaurant, which I think is the first time I've been "out" in the evening for month and months! I love that place, and Woolfie is such a gent (with us, at any rate! hehe)
He had a companion with him who is raising money for medical relief in Kashmir in the aftermath of the earthquake. Rahim. He is a lovely young man, full of energy and total commitment (and success) in raising huge sums to establish a decent hospital and an skills exchange system. When I locate the website I'll post a link.

It was funny cos we actually already knew each other: Rahim being one of those rogue boys who probably doesn't think he was my favourite/best student, cos he used to skip my lessons regularly ... Despite only patchy commitment to English studies he still got into uni with his sciences, and is now working as a radiographer .. hats off to him, he is doing really well and he was a great entertainment over dinner.

edit:
this is the charity Rahim is helping:
http://www.mdauk.co.uk/index.htm

Monday, February 26, 2007

Drugs

From what I can glean from t'internet the drug Avastin that Dr Adab is putting into my mix was not accepted NICE in Aug 2006 so is not available to NHS patients .. depending on your Primary Care Trust, I guess, as some PCTs do allow use of drugs not agreed by NICE ...

It says on the Cancer Backup site that these treatments are "widely available in the private health sector" so it seems that BUPA pays for licensed drugs that aren't agreed by NICE .. which is cool for me ...

not so cool for other people ..

Saturday, February 24, 2007

4-0

funny how just a slight push can tilt your axis back into a better orbit ...
a
c
t
u
a
l
l
y
there were a few pushes today .. good phone calls with dad and then with mand helped
and then deciding to go out to buy a nice present for someone all helped me to feel more motivated..
and we had a nice lunch in town,
and browsed around town a bit together, which was so ORDINARY and therefore GOOD.

While we were out B's dad kept texting us news from The Valley and it turns our there HAS been football today, and maybe Charlton have turned the corner and can escape relegation,

so we are all smiles here and we have watched MotD with great enthusiasm tonight.

http://news.bbc.co.uk/sport1/hi/football/eng_prem/6371331.stm

Friday, February 23, 2007

Friday

hi folks

Today we have been up to the hospital for blood tests in readiness for chemo next week.

I've had quite a busy week, what with several visitors, keeping up with daily doses of America's Next Top Model (series 2) and the new one .. plus collecting wee for 24 hours - which adds a certain "je ne sais quoi" to a lady's day ...

In point of fact - I have been a bit "blue" today .. no actual "thoughts" just ...... it has felt like there is a bubble of tears not very far from the surface all the time ... tho I keep them at bay with judicious application of mascara .. don't want a streaky face!

I think this (the moodiness, not the mascara) is making me a hard person to be with today -- I think I am being a bit snappy and hyper-sensitive - that would pretty much sum it up, really ...

I'm going to go and look after a little job Auty B set me and see if that takes my mind off feeling sorry for myself
xx

Tuesday, February 20, 2007

photo gallery

Today's jaunt to Trentham to rendezvous with the MISTRY clan was enhanced by Aunty Barbara's joining us... and she got a couple of (rare) snaps of me and B side by side, which is a treat .

.





Brigid played with the boys on the zip-wire thing and all the shots I took of that were RUBBISH..
The boys both had a little cry when they were leaving .. and the aunties had a big cry as well, so that was a hard ..

we love each other so much, these nephews and these aunties ...

xxx

Monday, February 19, 2007

busy busy

Phew - been a busy day today.

Started off with one of our GPs - getting my "sick-note" .. she was pleased with my scar! (what is it with these ppl?) B and I feel we've been very well cared for by our GP surgery sicne the start of all this, and today was no exception.

Then I "braved it" to go into college and take the note in, in person. It was hard, and I only bobbed into personell (?? how do you spell that!) and out again, tho I had a brief chat with Sukhraj on the way out .. and Ann H on her way back from New York - tales of which I can't wait to hear more of.

I then went to get my hair tidied up again, so it is ready for the hospital stays. While I was just getting that finished the Mistry Brothers arrived .. WOW .. it gives me such a lift to see the boys.

It was funny cos they were there as the bill was paid, and Toby kept repeating the (shock) amount in disbelief and then he pointed at my hair " ... for that?"
haha - some revision of the charm school lessons obviously called for there, then.

Guess where we had lunch?
The boys followed in my footsteps and ordered smoked salmon paninis for lunch, ate their own portions and then demolished 1/2 of mine too ...

John and I then took the boys around town for a bit - mainly just to get the car, via Anadi. She was there, back from India, and delighted to see us. She gave the boys a little crystal each, and one for Luke too, so I was really pleased about that.

When we got home the family didn't stay too long, as I am still very weak, but I will see them again tomorrow, meeting at Trentham, if the weather is anything like.

Oh dear, I'm so predictable.
xx

Sunday, February 18, 2007

Take heart

Hi
Today's blog is written on the other one .. so you need to bob over there to see today's ramblings .. which are just a bit more profound and more worthy of being preserved than the usual stream of whatever it is in here!

I realised that I hadn't done any up-dates on that blog since before Christmas .. but there are two there today .. so off you skip ..

http://takeheart-suze.blogspot.com/

and don't be shy to comment !

P.S and no, of course I didn't forget it was my lovely sister's birthday yesterday .. tsk!
Happy Birthday Julie

Friday, February 16, 2007

Shopping


Me and B had a "date" today, she took me out for lunch (Bella Napoli, since you ask) and then whisked me off to the jewellers for some shopping that was as far from boring as shopping can be..

For the past 14 years B has wanted to buy me a diamond ring, and I've always nay-sayed it
(It's a genetic thing, blame my mother)
But this time she decided not to ask my opinion and just to do what she wanted to do.

She has bought me a "forever" diamond ring with ~FIVE ~ beautiful, brilliant cut gems
(five is her lucky number).

It is an antique piece that has been restored by "our" jeweller, Skelhornes in Hanley, and I am absolutely delighted with it ...


It is surprisingly hard to take a decent photo of this ring -- but here's my best shots:


Wednesday, February 14, 2007

Dr Adab's plan

Chemo Plans
We saw Dr Adab last night to find out what he is planning for me in the way of chemo now.

Obviously it is BAD NEWS that I have loose cancer cells swimming around in my abdomen and he is going to give them a major blast for SIX MONTHS!

The routine will be like before, three nights as an inpatient, every other week, starting at the end of this month. (Tuesday 27th Feb). He is going to give me the same as before, plus one called Alvastin, which works on my blood vessels .. cos tumours like to make fresh blood supplies for themselves, this drug works to deny them the blood vessels ... which you can imagine gives rise to a fresh lot of possible side effects, like high blood pressure, clotting, bruising, bleeding and kidney problems! Brigid says.....But we have every confidence in his magical drugs and could not wish for a more wonderful Dr to make Suzi all better.

Hey ho - if it all gets too much I can have a week or two off, but at the very least I am going to be having this treatment until the end of August.

Plenty of visiting opportunities there then!

Valentine's Day

We bought each other cards and these china mugs each with loveheart messages on them. (how cute are they?) They are made in England by Juicy Lucy and very girly...

Brigid also bought me an individually crafted glass coaster with a heart motif, which is just gorgeous. We had chocolate and red fruit for breakfast and we are going out for lunch later....

Celia's Visit
Yesterday was brightened by a visit from Celia F. She came bearing rainbow (multi-veg) soup for lunch, Welsh cakes AND a massive chocolate and orange sponge cake, all stuff that she made herself. If you are round here in the next few days make sure to ask for a slice of the cake, but you'll have to move sharpish ...!

Tuesday, February 13, 2007

Photos from Monkey World

Strange but true, Mark actually sent the snaps over --- wahay!
They speak for themselves, you can see it was sunny cos the group photo has us a bit bleached out.






This is me with the monkey that Luke bought for me... it realy looks a lot like the monkeys at the Forset
and we both have one so it is a sweet link between us:

Monday, February 12, 2007

monkey fun

Ooops - a bit late with today's update .. I've been busy on the laptop today, compiling a CD of uplifting tunes for a pal of mine. I couldn't access the editorial side of the blog until I came up here to use the p.c. and now look at the time!

Yesterday was great - Mark (my brother) got in touch and then drove up for the afternoon. Since it was a lovely sunny period we spent it at Monkey Forest. As usual the animals put a smile on my face and it was sweet to be with the family. They bought me a fluffy monkey-toy to bring home, which is sitting on the desk even now ... still making me smile. Maybe (haha) Mark will email me a couple of photos so I can add them here .............

It was a good day and I walked more than had before .. I was fair tired after that and felt pretty tired this morning too, but it's good to move about.

Azrini came round for a meal in the evening, which was a treat, cos she's been very busy of late and we've not seen each other much since my op. B made her "signature dish" a lovely rich risotto with chicken and saffron .. yummy ...

B and I went to Hanley this afternoon but it is really too dull to report on the shopping we did! The Chocolate Shortbread in the Lounge provided the highlight to the whole adventure.

Saturday, February 10, 2007

grey weather

grey grey grey
that's my combined weather report and forecast .. dreary innit!

Apart from the weather, I did have a day yesterday where I thought "I feel quite a lot better" .. I am moving well and slightly less sore in general.

I didn't dare go walking yesterday with so much slush and snow around, though we made it to the stoma clinic and had a chat with the nurse. We only had to wait an hour and a half for that, so do we consider ourselves lucky?

There was a Really Unpleasant Other Patient (RUOP) there ... who was terribly rude to a poor old dear who was telling us the various nasty troubles she was having with her bags, and the RUOP told her she hadn't got any sympathy .. jeez! It's too long winded to go into the whole conversation but it certainly didn't enhance the wait to be forced into RUOP's company.

One thing this experience showed me was how much better off you are if you are able to look things up on the internet and get other opinions on what is being done for /to you ... The old dear was not being given the best service, which I could tell from what she said and what I've found out myself in only four weeks of looking into these things. She was three months down the road from her surgery and totally unaware that their might be different options to what she was being given.

My internet pals have been such a great help to me and things are getting better now as a result of their suggestions for alternative approaches to stoma care. I know a little information can be a dangerous thing, but some different points of view to consider are always worth a look in this sort of situation.

Today we are hoping to see James and go for lunch at the Swan at Woore ... mainly cos they do great chips there! Sadly they dont seem to have a web-site, so I can't share it with you ...

Thursday, February 08, 2007

more snow

Spent a good day with Kate yesterday ... we worked on details for a couple of her job applications for a while and then switched to our favourite gossip topics after lunch... she was less than impressed with the vegetarian dahl we had to eat!

I really hope she gets one of these posts, but I will miss her, as we've got so used to spending time together a couple of times a week ..

Celia F is not coming to see me this morning, on account of the snow, which has settled deeply in the lanes by her house ... but we have fixed a date for next week and I am getting on with my stitching and await Mr K's arrival later this afternoon.

The snow isn't that deep here, in fact, and as I write it has actually stopped.

I'm scratching around for things to report on, erm .... I spent my first night back in my own bed last night? sorry, that's the best I can come up with!
Better go back to the needlepoint
xx

P.S. @ jean .. I forgot to say in the email ... you DO know Mr Andy K - he was at our wedding - I think you sat opposite him during the dinner ... here he is being amazed by our Estee Lauder collection:

Wednesday, February 07, 2007

The Surgeon Speaks Again

Phew -- it was a bit tense yesterday, waiting to see Mrs Hall again .. as ususal I've not really entertained any ideas of outcomes in this situation, I find it so much easier to BLOCK these really big things from my mind (and put all my anxiety into worrying about sore skin around my stoma!) but still, at some level I knew this was big meeting ....

Mrs Hall was lovely, as ever, and basically said that there was good news and bad news.

The bad news
is that the cancer is quite aggressive and HAD breached my bowel into the ovary that she removed. It had also dropped itself into some fluid in my abdomen, and for these two reasons I will need further chemo to kill off random other cancerous cells that might be lurking around elsewhere in my body. This is what I'd expected anyway, so it didn't shock me.

The good news
is that because the radiation and chemo I've already had were so successful they think it is a cancer that responds well to treatment. She also has reports that the bits of bowel she joined up are totally cancer-free and there were no cancer cells in my lymph nodes on the bowel section that she removed.

The cancer on my ovary is not "ovarian cancer" it was definitely an extension of the original bowel-beastie, and she is pleased that she took both ovaries out because now I cannot get a particular sort of ovarian cancer that can follow on from bowel cancer ...

Treatment plan
We wont know exactly what chemo Dr Adab proposes for me next until I see him nest Tuesday night, so watch this space for further details!

Tuesday, February 06, 2007

snow!

Yes, SNOW!!!!
we have had some - but it didn't last long and it is very bright and blue again now.

We went for a little trip out to TG yesterday, and bought some lovely big primroses in a pot which were surprisingly cheap. Luckily B put them in the shed rather than straight out to get snow on them, so they will be nice to look at when the snow has passed.

I've had a visit today from Pam who works in the PE dept at college, she bought me some alternative T bags, a jar of free trade honey and a pile of books, so she's got her eye in on a convalescent's needs!

It was good to mull over a few things; Pam and I started at college together (along with Andy K and Cathy to name two other famous recruits of that year!) 16 years to reflect on! haha ...


Now they are nine.
Here is a picture of my lovely nephews tucking into their birthday Chinese Takeaway (yesterday)...









It is wierd cos when they were born I hadn't planned to zip down there to see them, but then I just HAD to go and here is a pic of them within hours of their arrival to this world:


look - how tiny they were back then
(Joe on the left, Toby on the right)




.. now the boot is on the other foot, and Julie is wondering whether I will need her here when we go back to the surgeon tonight. I'm hoping not, cos I'm hoping there will be no "shock" news ..

but it is a comfort to know that if we need her Julie would be on the train and with us in a blink
xxx

Monday, February 05, 2007

Three weeks

ago I was in the hospital for my operation.

I am trying to focus on what a good thing that is for me! I have had a few miserable moments dealing with the new body-image and stoma side of things, but otherwise I'm doing OK and my mates are doing their level best to distract me.

Mand took me out to Trentham on Saturday and I walked a bit further into the Italian Gardens, this weather is such a bonus and we had a good time together (B was at the Stoke match!!!!)

On Sunday Kate came down and forced us to learn about Rugby! Mainly I did my tapestry while that was on. I might need at least a year more sewing to get that finished - it is a slow hobby ...

We had a "new" recipe for tea .. inspired by Kasia's idea that Polish convalescents are nursed with broth made of veal bones B tried to get some from the local abbatoir. He didn't have any just bones, but he sold her some slices of bone with meat on, and we made osso bucco with it... (i.e. I did a bit to assist in the kitchen for the first time in 3 weeks)
Osso bucco is a great recipe and I'm sure the nutrients in it are rebuilding my cells even as I type .. it was really tasty and something we'll have again...

Saturday, February 03, 2007

Saturday

Yesterday continued to be a lovely day, capped off with a visit from Matt and Kasia, which was really lovely. B surprised herself by doing the catering (usually MY job) and Matt was on top-comedy form, so we were all well entertained.

Today B is going up to see Stoke with Matt, and Mand is coming to see me for a couple of hours this afternoon. With the sky/sun like this I feel like I would benefit from another jaunt out .. I always feel a bit tired the day after a hectic day, and yesterday WAS hectic, so I'll have to judge my energy levels!

Friday, February 02, 2007

Lovely day

Wooo - it is SUNNY today! Me 'n' B have had a good day: we had planned "a date" earlier in the week that we would actually go out together today, and we have done. No prizes for guessing where we went! The coffee in Cafe Davide is worth going out for and I managed a few steps into the Italian gardens as well.

Trentham a great place to go - there are lots of benches so I can perch for a few minutes and as I get stronger I will be able to see myself walking further and further into the Gardens and eventually round the whole lake again. Monkey World opens at 1/2 term too, so that is another treat for as I get stronger.

We also went to see my GP today. He is such a a star, we were in there for nearly 1/2 an hour, so the ppl behind me were probably quite exasperated, but I was really happy and appreciated his care and attention.

Thursday, February 01, 2007

aesthetically pleasing



OK - there's absolutley NO reason for this pic except that she's just lovely and makes a nice change from my current usual list of topics!