Wednesday, April 30, 2008

Ian Gawler

Anna Donald reminded me of Ian Gawler, who is an Australian guy who lost a leg to a sarcoma and got into meditation and had a miraculous cure. I don't think I'm quite in the realm of needing miracles yet (don't get too cocky there), but it's nice to know they do happen.

My Birthday!

My birthday. Kids squabbled over breakfast, most of my cards brought tears to my eyes - such kind thoughts - and I'm a year older.

Just reading a BMA blog by Anna Donald, who had breast cancer 5 years ago and whose CT scan "lit up like a Christmas tree" in February. So she's having desperate treatment and expecting to die. Which is awful, and obviously is my fear, but what's interesting is that even with that, you still function, you still get on with things. Or she does. And what else can you do? You have to keep going, someone has to buy the toothpaste, do the washing up, get the kids to school on time (late this morning, actually).

I still have this cold. I'm a bit worried I won't shake it off before next week and they won't do me. I need a surgery date, I need to get myself organised. Aussie says it's just logistics, and we will sort it out.

It's raining and I want to be planting. My chillis are coming through.

Tuesday, April 29, 2008

My taste in books.

Interesting to see it down as a list. What does it say about me? There's a big heap of fantasy there, not much crime or horror.

Back at work

It does seem to be taking longer to bounce back each time. Still - hopefully only 2 more to go! I have had a really unpleasant cold this weekend, and am still croaky. Almost lost my voice completely on Sunday.

David rotavated the veg patch on Saturday, and I managed to rake over about 1/5 on sunday. It is exciting to see all that bare soil and I am itching to plant. Bought pumpkin seeds and sweetcorn yesterday with F. We will have lots of peas. We have been eating our own winter salad and my mixed salad leaves in pots are coming through. I would be so bereft if we had to give up the veg patch! I get much more excited about vegetables than flowers. We need to sort out the strawberry patch too. I put in 2 gooseberry bushes and some rhubarb, and the raspberry canes are looking good.

Aus took the kids swimming on Saturday so I could rest. Poor me with my sore throat and snotty nose. He ended up with S, F and Joanna and stayed there for ages - they were in the water about 1 1/2 hours - came back knackered. F had his swimming lesson yesterday and he's getting really good, though he does like to stay under. If he came up and breathed a bit more regularly he'd be swimming across the pool.

Mum and Dad took him last Monday, so I didn't get to see him. I slept. (So tired - I could sleep anywhere, anytime, anyhow). Mum came back and saw me without my hat. I knew it would upset her. Said she cried afterwards - "What have they done to my little girl?". I suppose I am her little girl.

Tuesday, April 22, 2008


Well, the consultant was very pleased with progress (though probably not as pleased as I was to hear him say that). Steve kindly drove me home, Julie brought F home (with daffodils and a beautiful card that he drew himself, and he is a genius), so it was OK as chemo days go. S went to Joanna's and had a great time.

Mum and Dad took the kids down to Rodger and Sue's for the weekend and I think they all had a good time. Took the dogs to the beach, went to the zoo, children behaved well, came back brimming with news and excitement. I lolled for a lot of the weekend, and have to say I am feeling tireder this time, and also have really unpleasant muscle ache. Am taking paracetamol and feeling lucky because some people have unbearable muscle ache. The paracetamol takes the edge off, but I'm not sleeping well.

S sleepwalked into our bed last night, curled up on top of the covers, had to be dragged in and covered over. I ended up in the spare bed because I needed to squirm, because I just couldn't get comfortable.

The weather at least was sunny today and I planted the gooseberry bushes (2) and then had to rest. It is so frustrating to have time off and not be able to do anything with it. It is so frustrating not to fell well. Not that I feel ill exactly, but I have no oomph. Missed an exciting meeting at work. So frustrating.

I suppose at least now I realise how much I enjoy doing stuff and how much I enjoy work. I do like getting things sorted out.

The veg patch is still unattacked. Don't see how we're going to grow anything this year. I suppose it is only April, but the year seems to be going...

Aus attacked the big thing. Stone feature. Don't know what it is, but it takes up loads of space on the patio and is not at all attractive. Doesn't seem to serve any sort of purpose except to look generally rustic. Wants to extend the patio, maybe this weekend. I feel like he is surging on and I am just a big saggy bag of bleurgghhh.

Cathy rang today to see how my aches were. Told me that after her first chemo a colleague had asked how she was and she said "Truthfully? All those people who've come in here year after year and said 'I'm fine!' - they were all lying". Made me laugh and feel OK about feeling rubbish.

Wednesday, April 16, 2008

why do they want him to disappear?

Just been idly browsing the shops in my lunch hour wondering about buying a top for F. Could someone please explain to me why shops think small boys should be camouflaged? I don't want him in camouflage gear - I want to be able to see him from the maximum distance possible. There must be cool clothes in bright colours for boys out there somewhere (and not football shirts).


Went to have bloods done this morning - fantastic - in and out so fast I didn't have to pay for parking. Fab! Sadly one of my veins is looking a bit tired, so maybe next time I will go and get it done through the line. Don't want to lose me veins, do I?

F gone swimming with nursery today and S at Nell's. Nell had her new glasses on. Not sure why I am working today, but F is delighted to be going swimming - and to be taking a packed lunch! He chose a marmite sandwich and lots of fruit - very healthy. I have to go and get him some school trousers today because it's only a couple of weeks now. My baby!

A and S had a great day yesterday - went down to Bude, went to the pool with a wave machine - S very excited about that - and swam in the sea. Came back tired but happy...

Once I get this damn line out I will swim and swim. How long will it be before I get irritated by the never quite getting dry afterwards and the chlorine smell? Maybe I will never be irritated by it again, maybe I will always count it as a blessing! We'll see.

We are excited about expanding the orchard. I bought a couple of gooseberry bushes on Monday - additions for the fruit garden. The rhubarb seems to have died. Might see if my Dad can divide some off for us.

Read a really nice article about Jenni Murray in the Guardian on Monday. I've stolen it for here, because I found it so refreshing and so helpful after my stressy time of feeling maybe I wasn't taking it seriously enough. So this is a direct quote: "I suppose after I'd done it [told the audience], I thought I had to be careful that I don't just get drawn into being seen just as somebody who has cancer. And so I was very careful about what I wrote and who I wrote it for, because there are so many nonsenses written about it."
When people talk about women "battling" breast cancer, she gets angry, she says. Some people have cancer that will kill them, some people do not. "It's absolutely the luck of the draw which kind of cancer you get. And I thought, if I can communicate that kind of idea then I'm doing a reasonable job. And what it's like to lose your hair, how shocking it is, how you can help yourself deal with it. Then that's useful stuff and I was prepared to do that - and now I prefer to forget about it really."

So I'm just getting on with it as well as I can.

Tuesday, April 15, 2008

Feeling a bit wobbly

Rang Jen on Sunday night. Jen is a friend of Tess, just diagnosed with breast cancer, same age as it was a slightly odd phone call, and I came off it feeling really inadequate, or maybe not inadequate, but worried that I've got it wrong.

You see, she is changing her diet, going completely organic, cutting out red meat, cutting down on dairy, avoiding soya. (She's been to the Bristol Cancer Centre). And she's not working. I came off the phone feeling like she is taking it really seriously and I have been trying to see it as a minor inconvenience that I can get through.

I guess it is all about feeling in control. I have faith in the statistics, I need to keep the rest of my life going as normally as possible - maybe it's having kids as well, I need to keep things normal for them, minimise the impact - damn it, I love cheese.

But there is a little bit of me thinking "Have i got it wrong? Am I going to die because I love Brie?"

But before this I used to feel really angry with places like the BCC that made people feel responsible for their illness in ways that there is little evidence for. (Soya, there is evidence for soya - but I've never indulged in soya - partly for that reason - partly cussedness - how has it got away with being a health food?). And I don't think my diet is too bad. A bit too much sweet stuff the last few weeks, but I'm getting back to normal now. Plenty of fruit and vegetables.

It is all about control. I guess everybody does it differently.

Thursday, April 10, 2008

Lovely day at the beach

F was ill at nursery on Tuesday, and still complaining yesterday morning, so I gave him the benefit of the doubt (sucker!) and let him stay off. I also thought "Sod it, they aren't having a great time at the moment, what with one thing and another, let's seize the day" so we went down to Sandymouth. It only took us about 35 minutes to get there and it was lovely. Shingle and rocks until the tide was out, then lots of sand. Lots of rockpools - and I bought them fishing nets to poke about with, though they didn't catch anything (surprise) - lots of places to scramble, big tidal pools to paddle in (cold), waterfalls coming down onto the beach and a really nice cafe, not a rip off at all. Free to park for NT members (middle class smugness). The sun came out and went in and came out and went in and the sea faded from blue blue blue to dull grey and then back to sparkly blue again. All very pleasant, and the kids were lovely.

Back to nursery and work today - S at Granny and Grandad's - Dad picked her up from the health centre this morning and F came in to see the nurse with me. I am sure my line has moved out of my arm a little bit, which is a bit of a worry.

Woke in the night last night worrying about pension, stuff at work, lift home from chemo next week...none of it major, but I think I'm just stressed and stuff pops up that I can hook my anxiety onto.

We all got into our bed for stories last night. Big cosy time. A really lovely day.

Monday, April 7, 2008

sunny monday

It snowed yesterday! Beautiful feathery flakes that stuck around for about 3 hours - long enough for a snowball fight - and then all disappeared. Went for a little bike ride in the afternoon along the tarka trail - lots of primroses, wild garlic leaves with buds starting to show and fresh new leaves on the trees appearing. There were patches of wood anenome and soon there will be bluebells. It was quite warm down there, because you're out of the wind.

S is going great guns on her bike, but whinged a bit on the return leg. F was on the tagger bike - standing up on the pedals, pedalling backwards, keeping up a running commentary on the whole proceedings, lots of criticisms of Dad's speed (lack of) and wobbling (excess of).

To the park today with Brooke. Warm until the sun went in. Bought ice creams from Mr Hocking - S and B managed to trap S's between the car door and the next car along so I had to buy another. Total despair from S. Nell came over in the afternoon. Wouldn't go up to the tree house, but they boinged on the trampoline and then watched Hoodwinked...

Work tomorrow.

Friday, April 4, 2008

a brief word about time...

Just realised that all the times on this obviously relate to some other part of the world. I'm not actually up at 4 in the morning pouring my soul out into the computer. It is now 16.38, so you'll have to work it out for yourself.


Very fuzzy headed. Mix up yesterday about picking up S - apparantly told her I would be picking her up, though she usually goes to Brooke's. I assumed she would be going to Brooke's as usual, but we hadn't discussed it, so I said to Jess "If you see S looking abandoned pick her up and take her home". Sure enough, I'm on the way to pick up F and the phone goes and it's Jess...

Still, all's well that ends well and she had a nice time with Nell, better than trailing through to Barnstaple to pick up F. And today I got up to the hospital and discovered that the appointment I thought was for today was cancelled until May. So stupid!

A looking really fit at the moment, and I feel like a big saggy blob.

Apparantly it's going to get really cold this weekend, so no point doing any planting until after that. We just got a tree catalogue, so we can expand the "orchard". All these local varieties of apple and cherry. Lots of Landkey based ones - must have been a big orchard area at one point. There is a cherry tree road on the new estate just before nursery, but not much other evidence.

A working an extra day today. I pottered around, had lunch with Anne Tat (accidentally), then came home and had a nap. Mike just turned up to do the field so S is up the tree house with his boy Kieran. Nice email from the Duffys - lovely hippy Jane. Must email her back.

Still tired this time. Is it a cumulative thing or just the new meds? Was having a prod last night and I do think it's smaller, but am worried about getting obsessed.

Spoke to Tess and Jen has just been diagnosed with breast cancer. Just had her first chemo. She is 42 too. What is going on?

Wednesday, April 2, 2008

Up the tree

Do you like my hat?

New treatment

Well, went along last Thursday and it's shrunk a bit but not as much as they'd hoped, so they changed my chemo to taxotere ( I think. You would think I would know, wouldn't you?). I had to be predosed with steroids because it can cause reactions ("What sort of reaction?" "Well, like an anaphylactic reaction, really") so it all took quite a long time. Didn't feel so sick but am sooooooo tired. It's Wednesday now and I still feel knocked out and everything still tastes horrible. I bought some lemonade today, which is actually drinkable, and some ginger tea, which is just about drinkable. Wanted some Yogi Tea really, but Sainsbury's only had the liquorice and that sounded a bit scary.

A is going great guns with the tree house and has dug out a couple of beds and I just loll around like something out of a Victorian novel and could quite happily spend the day in bed, except that when I'm there I don't really fell comfortable. Whinge whinge whinge.

Poor little S has a sore neck. She's really having a bad time at the moment. Stressed. F made me a card at nursery yesterday "to make you feel better."

S did a scrap book page for Great Granny. "She was kind and helped me and I loved her". If she gets a cat she says she's going to call it Phyllis May Rawlinson. I suspect by the time she does get a cat she will have reverted to Princess Snow Crystal or Sugar Sweet Pearl....

So I'm just struggling on. I keep telling myself it will be worth it in the end. My finger tips feel a bit numb, which I think is a side effect and my skin is so dry. Never used so much handcream.

This is just a big grumble, isn't it? I'm sorry. I don't feel very upbeat. The sun is shining and i should be out there revelling in it, but I just want to flop. It did start out misty, so I should be very grateful.