Monday, June 07, 2010
there are other reasons for the new thing as well .. mainly cos I have been reading all about anti-cancer and I wanted to record notes from that, and a forum is a better tool for that cos it's easier to group stuff in threads and go back to stuff .. and it can be in a section which ppl who are interested can read, and ppl who are not can ignore it!
ALSO this blog has been tricksy about photos from the start, and the layout is always weird when I put photos in .. where as in the forum I can manage that much more easily.
SO, I started it a couple of weeks ago and got some mates of mine who are used to forums to do it with me to show you how it works ... now you can come over and join in too:
it is open to anyone who reads my blog, and I hope it will prove more diverse than being just about me!
You need to REGISTER to comment, but you can read with out registering .. it is easy to register and I will build up a FAQs so you can learn other techniques of using a forum if you want to! I have made the photo section for registered members only, but the rest is as public as this thing is!
Friday, May 28, 2010
Wednesday, May 26, 2010
Barb stayed and did great service her keeping me company for a few hours, while the chemo was slowly go tgoing (staff shorages) but a lovely docotor who got good canula on inside of my arm, above wrist..
Mandy Jane came down about 4
then Mr K.
then Dr A.
then the lovely and gorgeous Mrs Wife ... last but not least .. she had governors' meeting tonight ..
So I've had plenty of company and texts and emails too from other family and friends ..
Feel ok -tired but not ready to sleep yet ... it's not easy.
Friday, May 21, 2010
I've eaten out on the terrace of the Trentham Italian restaurant (Terrazzo del Giardino) three times in a week! B and I went at the weekend, then I went with Celia F for lunch on Tuesday and we took Andy there last night. It is such a treat to sit out and eat there. Very quiet, calm, warm and surrounded by old trees, birds, the heady scents of gernaiums in warmed terracttoa pots, and garlic mingling on the air. It really feels like being on holiday, but only 15 minutes from home!
I had a lovely day in Cannon Hill Park with Jan yesterday too. Birmingham offers a range of treats. In deference to my tired condition we settled for coffee, cookies and ice-cream partaken between slow ambles around the lakes and gardens here, rather than our usual tussle with the City Centre.
Sunday, May 16, 2010
Friday, May 14, 2010
Saturday, May 08, 2010
This gives a good idea of how nice the new door looks inside, and the sense of bringing the outside. This bit will be the dining area.
B loves this - it shows how our new windows, not frosted or netted, will always allow us a great view of the trees behind.
She looks so cute on her new deck.
Friday, May 07, 2010
Amazing news about some ppl being turned away at 10pm tonight .. so the talk of voter apathy seems also slightly askew to the reality in these wards.
I do, really, love the way the pundits try to build a story on the emerging news, instead of just waiting till the results are in ...
Gordon Brown's count just came in, and he is increased his own majority!
6.9% = swing the Tories need ... so far they're getting 3.9% overall. (1.52 am)
Guilford, "No 1 Top Target" for Libs against Tories ... stayed Tory with bigger majority .. so yet again the Lib-Dem surge is already looking like the myth it usually is!
Tooting, held by Labour, this seat is on the edge of what Tories need to get a majority, so good news they didn't get it! Gedling (sp?) also held by Labour, ditto. Ben Bradshaw kept Exeter .. and Bolton NE saved
1.54 am In Scotland and Wales the Labour vote is up, but it's down in England.
1.57 am pundits are busy talking about Brown making a co-alition with Lib-Dems (if enough of THEM get elected of course!) 60 seats declared so far, so less than 10% in.
2.09 am "If there's one certainty it's that Brown cannot carry on as PM" (in a co-alition context) I think this is Tory pundit talking, wish they'd remind us of who they have in the studio! Was it Ken Clarke?
2.18 Where Tories are trying to win seat from Libs they are failing, so far.
Will the Greens get Brighton?
2.22 am Signs of Tory wins from Labour, but ones quite high on their target list, not evidence of enough to govern.
Ohh I really should try to sleep -- I am suffering with tiredness in general, but not nec. sleepy, if you know the subtle difference!
Thursday, May 06, 2010
We had hoped to go over and see them all in Ireland this coming 1/2 term break, but it isn't even certain that my treatment will be finished by then, so we had to back off that idea. A great shame cos we'd love to be cycling around the beautiful places where they live with Aaron and the rest of the family there. :-(
On the other hand we might be able to go to the shed. After a slow start Chris (the joiner) seems to be getting stuck into our work, and the windows arrived on site yesterday.
Monday, May 03, 2010
I am struggling with tiredness, still .. but otherwise not too bad.
On Saturday we had enough sun to eat breakfast outside, which was lovely and B had lots of post to open for her birthday. We went to the Hollybush at Stockton Brook for lunch, which is rapidly becoming our fave place to go out ... the food is really good. Totally on the spur of the moment we popped down to Ann's Antiques and I saw a lovely diamond ring which I just HAD to buy for my wife, so she got double presents! It is lovely, and the price was "right".
Yesterday we went out with Kasia and Gary for lunch in Manchester, at a place called Albert's Shed. Seem to be on a shed theme these days! It doesn't seem like the obvious thing, but duck pizza is a very nice thing to eat! B ordered a rabbit dish and there was NO rabbit in it .. just piles of mushroom, so she had to have something else .. but we had a good time there and will go back.
We then bobbed around to see other mates who live in the Chorlton area in the afternnon.
Today, B's already been out on her bike, and I have done nowt .. the tiredness .. sorry, repeating myself, but it is just ever-present and getting on my nerves ... hey ho, hopefully only two more chemos to do ...
Tuesday, April 27, 2010
and then if you just happen to be in the Co-Op when they have a basket of reduced-to-clear-crumpets by the till, so you can't miss seeing them .. well then you have breakfast made in heaven .. don't you?
** Nigel Slater's Recipe for garlic butter with steak:
two large tablespoons chopped parsley (that's a lot)
1 tsp Dijon mustard
juice of 1/2 lemon
large garlic clove, crushed with the salt
soften the butter and blend the other stuff into it .. amazing how the parsley goes in .. this is just scrummy on a steak and jacket spud ... (ask Mr K!)
Today is a back to hospital day. I'm really starting to feel the cumulative effect of the chemo now, and am generally quite tired and low energy pretty much all of the time ...
I am enjoying thinking about the shed, and we spent a happy weekend pottering around gardens (Biddulph Grange) and garden centres (too numerous to mention) in search of a water feature and new pots for the deck. We bought a lot of new pots, and as soon as the shed and deck are painted we can pot them out .. we're going very simple with geraniums and lavander, for their drought resistance. We might just re-cycle the water feature we used to have here, b4 we got the giant marble one we invested in a couple of years ago.
Wandering around and gasping at the prices of things B and I conclude we've turned into the older generation, as we are endlessly amazed at how dear things seem!
Thursday, April 15, 2010
I also missed Mr K this week, swanning around in the sun in Scotland. This time last year we were up there together and B and I are jealous of the lovely rides he is doing.
I am pursuing early retirement for ill-health now, a very tough decision but I think the right one. It feels like arguing against myself ... you know what I mean?
I went back to college when I was in remission, and really enjoyed it, but things are different now, and I can't see me pushing myself to it again ... my new bowel configuration is the tin-lid on it, really, cos you can't teach from the loo ... to say nothing of the repeated chemo and its side-effects, of course.
My occupational (teacher's) pension (TPA) will pay out on ill-health grounds if they accept that I am:
a) unable to work
b) this condition is permenant ...
The paperwork depends very heavily on what my oncologist says ... I think he needs to know more about my erratic bowel action before he fills in the form, cos we never talk about it (what's the point!) except now there IS a point, he needs to know so that he can fill in these forms ..
I've already done some of what the TPA like you to do first, i.e. step down to an easier job (used to be head of a large dept) and also gone very part-time (currently only earn a 1/3 of what I was on 4 years ago!) so I've shown willingness to continue while it looked like I could staying remission .. so that should help my case.
I saw the occupational health doctor on Tuesday, and he agreed that I am unfit for work. I cried a fair bit, I must admit.
Monday, April 12, 2010
We had a great time in Lyme Regis, and enjoyed seeing everyone. Crazy Golf was the hightlight of the week for me. Kid sister Julie can still weild a winning club, after all these years!
- some lovely fish-meals out with family
- the screen dad made for my elephant tapestry (it looks great in front of the fire place, dad!)
- getting our credit card queried as Street cos I was using it so fast and furiously!
- the fossil-walk-talk thing on Charmouth beach
- B drinking 4 pints on Sat watching Chelsea v Man U ... she hardly drinks any more, so she was more than a little :: cough :: tipsy!
It is true that chocolate is addictive .. I keep craving it now.
We've also been making progress with the Shed since we got back .. I was working on firming up the kitchen plans today. It looks very lovely. Assuming that Chris (our workman) hasn't won the lottery then things should get moving more over the next week or two!
Thursday, April 01, 2010
Sunday, March 28, 2010
Bet mum and dad think it's funny getting furniture like they had when I was a kid, though I couldn't see any chairs as nice as the perpex ones they used to have, at least these ones are swivelly!
Monday, March 22, 2010
Sunday, March 21, 2010
First pic is how it looked yesterday
DAD - see this!
Tuesday, March 16, 2010
Dr Adab will not admit me with these symptoms, so my chemo is delayed .. which is really annoying cos my school-pals were due to come up and see me next week, and we've booked a week in Lyme for Easter, both of which will now clash with chemo dates ... ARGH!
Sunday, March 14, 2010
Sunday, March 07, 2010
I've been busy today, doing a bit of cleaning up in the garden and then roasting a beef joint for some sandwiches tonight. It was meant to be a good omen cos our friend made us beef sandwiches when we went to her house to watch an earlier round of the FA cup ... when Stoke did really well .. hey ho, the omen didn't work, and Stoke were beaten at Chelsea, but the sandwiches were amazing anyway!
Healthwise, the chemo was a bit tough again; sick almost as soon as the iriniticin started on Tuesday, quicker than ever before. The medics quickly stuck another syringe driver on me to deliver anti-emetic, and it helped ... in as much as I was able to drink and eat a bit of banana and toast so I avoided dehydration this time, but it didn't totally stop the vomiting .. bleugh ... and I felt a bit rough. But still!! It was a lot better than the last time.
Came home with the driver on; it makes me really really tired. The drug is a sort of anti-histimine (cyclizine) they're not really sure how it even works to stop the sickness. It really zonks me out ... so even though I still feel quite queasy I asked the District Nurse to take it out this morning. I have had a lot more energy today, so I think that was the right decision.
You might wonder how queasiness reconciles with piling into the beef sandwiches! One sad, but true, thing about nausea is that eating makes it better .. calories a-go-go ! Hey ho again!
I hope the sun shines again as the week goes on, it makes being active a lot more attractive prospect.
Sunday, February 28, 2010
Our shopping trip to Manchester today has been declared a great success ...
B got this Ted Baker jacket, tho it looks a bit better on her than on this model!
she also got a bargain mac in TKMaxx and I got a bucketload of Bobbi Brown makeup to try and add a bit of radiance to my weary old face ...
We were proper label-tarts today, we even had our lunch in Harvey Nicks! hehe
Friday, February 26, 2010
Despite the tiredness I had a good time with B's mum, esp on Tues and Weds when we did some touristy stuff, including a walk around Trentham lake on Tues and a look out at the Westport lake from their new visitors' centre.
I got my hair cut on Thursday, after Jan had set off home and got some grocery shopping today, but didn't do a great lot else the last two days .. too tired and too put off by the sleety rain to get on my bike.
Saturday, February 20, 2010
Obviously, not eating or drinkng leads to dehydration, so the doc prescribed extra fluids and thus I had to stay in an extra night as well .
I DO feel better now. They gave me a pump to infuse anti-nausea drugs into my belly (subcut) on a regular basis, and this seems to have done the trick. Will be going home with that still attached in a fetching bum bag arrangement, harldy Louis Vuitton, but hey ho.
Anyrate, that's been the experience, but the good news is my scan shows the tumours on my lung are shrinking .. so the chemo is doing its job ... good news!
Saturday, February 13, 2010
I've been good about going to my gym since my last stay in hospital - I even went spinning the day after I got out, that's keen, innit? In fact I DIDN'T go this Friday Yesterday) too tired after another one of those loo-bound nights ... but we made up for it with nearly 30 miles of real canal and roads today, we went over to Rode Hall to see the snowdrop Gardens.
This wasn't our first snowdrop garden, we went over to Upton Hall last Sunday, and also walked around Carsington Water, which was lovely too ... This involved another pub lunch, hot on the heels of the day before when we'd done 14 miles around the Tissington Trail .. rounded it off with sandwich and chips ... no wonder I don't lose any weight with all these pub meals ...
I saw Mr Woolf this week, we went round the lake together and had lunch in the caff there ... so even more calories.
And what hope for this weekend / 1/2 term break? ... since we'll be out for three nights with a la carte dining in Llandudno. Good job we are taking the bikes to keep moving or those stones would be piling back on!
I am coming back from Llandudno and straight into hospital, without even coming home .. which will be a bit weird. The day's been changed to Weds this time, so I can have a scan on Thursday and results while I'm still there on Friday. I have taken on board Mandy's comment that "this scan is to see what PROGRESS we are making".
I will update you on that next Saturday, I guess.
Hope those of you that are in education have a good 1/2 term, we are excited about having a little break and I've got B a lot of little Valentines gifts to add to the excitement.
** º ♥`•.¸.•´ ♥ º *
Valentines Kisses to y'all
Friday, February 05, 2010
Sunday, January 31, 2010
I've seen a few other mates this week, including Woolfy, Mr K, Anne and Anna.
I also saw Kelvin and Mario at Sandra's funeral, which was hard. I am still reeling from the shock of Sandra's death, and then heard from another pal on line that his daughter's condition had deteriorated rapidly and she's died before Christmas, and another internet pal with advanced bowel cancer has had mets discovered in his brain. These are harsh realities of life with cancer and it is hard to absorb all of this and still keep my head in the sand about my own outlook .. really, not easy!
On a more mundane note, B has been proper poorly with a nasty virus this week. She took to her bed for hours on end every day. I hope she hasn't passed it on to me, as I feel a bit weedy now, but it is hard to say to what extent that is just how the chemo makes me feel anyway ? My mouth, nose and throat is generally a bit of a war zone, with raw skin and blood dripping every day, so it's possibly just that. And the low blood counts make me feel tired about now, too, I think.
I'm back inside on Tuesday, but there are visitors to look forward to, not least, B's brother will be here tomorrow and for a couple of nights. I've also got some pals from college coming in to see me, so I will be kept occupied, it seems.
We're also making progress with our holiday plans for the Summer. Dr Adab told me to go ahead and plan, so we are doing! Bad news and scarey prognosis pushed out of my mind and reliving the sun and cheery memories of Provence is pulled firmly forward.
Friday, January 22, 2010
Out of hospital and the ghastly medical smells all washed off. Replaced with the fragrance of lovely Molton Brown bath products (thanks to B's christmas gift from Huw and James !).
B collected me and we got out at about 7.45pm. last night. I'd hardly eaten anything cos I feel so sick and uninterested in food when I'm in there, but I was hungry, so we went to Frankie and Benny's. This was a good plan and it felt very normal and "nearly the weekend."
This morning I woke up very bright and breezey. I think last time I came out I felt quite rough, perhaps I was still a bit down with the impact of my chest infection and the anti-biotics, but today I feel OK. A bit sick, obviously, and probably not got much energy really, but we got up and did stretches together and I made us a nice breakfast.
I'm going to get some shopping soon, and hope the rain stops this afternoon so I can get out for a bit more fresh air, perhaps round the lake.
Monday, January 18, 2010
I think Sandra's death also filtered into this reflective process, as well. In addition I had a letter I got from a mate saying " Do you plan on working for as long as you can then? I could see me cashing in my critical illness cover and travelling off round the world for a year. "
Well, what do I want to do?
I've generally taken my lead from Dr Adab (live your life) and my own philosphy that happiness is garnered from living a normal life, but I start to wonder now if that made more sense when I could think that I was going to get better and could think of a relatively normal life-span and now we know the bugger is back and in general ppl do not "get better" from this, it is a matter of a shorter life span and a lot of treatment to secure even that.
One of my internet pals has started to plan his treatment more on the basis of what he wants in terms of quality of life, in discussion with the palliative care staff at his hospice. I don't think I'm at that stage yet, my two secondaries are only small and there is the hope that this chemo can blast them and then I can have some time with nothing, again ..
No-one can tell me how much, that's not what I'm reflecting on .. but how to use my time now, just carry on the same/ think of going back to work? keep a normal routine going .. or think of branching out in different ways while I still have capacity to choose and undertake different options ....
What do you think?
btw I updated my Take Heart Blog today .. more reflections on mortality if you're minded to take a look.
Wednesday, January 13, 2010
Sandra was a mentor for me in my early 20s when I was learning the ropes in my first jobs in community work and with the Workers' Education Association in Hanley. She was a few years older than me, and I really looked up to her as an inspiration in terms of her political awareness, feminism, local activism and also her sense of fun and ability to enjoy a night in the pub!
We used to see each other very often in our campaigning and trade-union activities and I learnt a great deal from her. We even spent a weekend in a hotel room together at a Trade Union conference in Blackpool in the early 80s. She really kept me under her wing and tried to save me from my own naivety at times like this, mixing as we were with older and probably predatory chaps!!
Time went by and we lost touch, only recently getting back in contact last year.
When we met up again, or talked on the phone, it was as though those years melted away and we got on as easily as we ever had. In the late spring of 2009 we arranged to meet for the first time and she was telling me about her various symptoms even then. For some reasons, lost in the mists of NHS mistakes, a proper diagnosis of advanced cancer wasn't made until around Christmas. It's hard to believe that we've had this same diagnosis and the same surgeon in common now.
Sadly Sandra only surfaced from her operation for a brief few days, before complications set in and she was taken into HDU. I understand that she never regained consciousness.
I am sorry that our re-aquaintance was only short, we had planned little trips together since she was already retired from work and I have time to occupy now that I work part-time. Unfortunately my own cancer came back to stop one of our planned lunches in October and we had anotehr one pencilled in for this week which will never happen now.
I am sad that we will not be able to rekindle more of our closeness, but I am really glad that Kelvin fixed it for us to meet up again after all those years. I am glad that I was able to tell her how important she seemed to me as a young woman, and how much of a pedestal I had her on. She was still great company and could laugh and entertain with yarns as well as she ever did and I would say she really hadn't changed much in 30 years. Even her trademark eye-liner was in place.
When her husband joined us it was also immediately obvious that their relationship was still vibrant and close. They've been together for 30 years. Sandra was a warm and energetic woman, and he will miss her dreadfully. If there is one thing worse than dying, in my opinion, it is being the one left behind from a close and loving partnership. Everything around him will resonate with loss and absence.
My heart goes out to him and her son today and in the future.
Saturday, January 09, 2010
I was really grumpy this time, but it makes the coming home nicer! There has been a bit of snow here this morning but it is now super sunny bright, and I think we should pop over to Trentham and get some fresh air.
Tuesday, January 05, 2010
bet you think that's cos of the snow?
it's cos the chemo drugs are LOST, obviously the druggies in Stoke have got their wire crossed and stolen the wrong stuff ... OR the poison with my name on is sitting on the wrong shelf or truck due to an error in some scanner or something ... hey ho!
Monday, January 04, 2010
Anyway, leaving aside my reservations about the rigmarole attached to New Year conventions, I have adapted these thoughts from something one of my friends sent to me ..
I hope that in 2010 each and every one of you has:
- Better health than you have had this year.
- Better times than you have ever had.
- More joys than sadnesses.
- Regular satisfaction and pleasures from your daily routines.
- The ability to be amazed by beauty and art.
- A sense of appreciation for the good things in your life.
- Ways to help, and to be helped by, your family and friends.
- The privilege of being truly loved.
And I also hope that you'll all keep bobbing back in here to see me, and leave your comments, cos I like it!