Thursday, November 08, 2007

Good news!

MRI results were clear which is a big relief. The Marsden are also checking me out for a couple of non cancer related issues (possibly a legacy from treatment). Nothing serious but it's good that they took them seriously - stiffness in my hand joints which is uncomfortable at best and painful at worst and some tummy issues which are probably caused by the radiotherapy.

Z x

Wednesday, November 07, 2007

Spring forward, fall back

As Autumn shines golden the clocks have gone back and the days are shorter. After the summer of lost hope, there is a sense of relief as the nights draw in. At least we know what we are getting and we can prepare accordingly.

The last few months have been challenging in many ways. My Pilates instructors course has been hard physically and mentally but I'm now ready to start teaching and getting my hours up. I'm hoping to start working and to then take my exam in March. I'm now a business - called Live & Breathe Pilates and will have a web address of www.breathepilates.co.uk but that will take time to come into fruition. The name comes from the fact that the breath is an important principle of pilates, and also that throughout my life people have been telling me to breathe. It reminds me of who I am and how far I've come.

The most challenging thing has been the loss of a couple of dear friends who I met through Jo's Trust and some other inspirational women. It's been incredibly hard to deal with and has resulted in some duvet days and an increase in drug taking (legal ones!!). One was Kayla, who I've mentioned on this blog before. She had had a terribly hard fight and in many ways it was a relief to see her suffering end. But we went to her funeral and it was the hardest thing to do - to see a family left distraught and empty. Another was Marion who had the biggest heart. We had all met up for dinner just after Kayla (and others) died and we celebrated her life and shared tears and laughter. We didn't know then that she had another tumor herself.

At the same time as all of that (and just as my second pilates course finished) we discovered that the CC vaccine has been approved by the government, which means that from next year girls aged 12-18 will get it through the NHS. This is cause for huge celebration and is a wonderful legacy for all to leave behind. The media circus started again and I, and others, were called on to talk to TV, radio and so on. Last week a few of us represented the women from Jo's at a gala dinner to Celebrate Life. It was a wonderful night - highlighted by me getting a kiss from Kenny Logan (Gabby was hosting and Matt and I had a lovely chat with her).

At home we've started to decorate the study. The first real DIY since we moved in and it feels great to be making our home ours. I've been making lots of chutneys and pickles and jam to give as Christmas pressies which has been relaxing and rewarding. The pre-Christmas social whirl has already started which puts the pressure on to get lots of jobs done before december. And of course I'm trying to find PAID work at the moment, though I do have opportunities coming up in the New Year. Fingers crossed.

This afternoon I'm off the Marsden to get the results of my MRI which is just a checkup but still makes me feel nervous and skittish - it's two years since the cancer wagon started moving.

I'll finish with some pictures from our ballooning trip - my birthday present. We were lucky to be able to do it as the weather was so bad, and had one of the most beautiful evenings of the summer.



Thursday, August 23, 2007

Overdue

I've realised that an update here is well over due and I have no excuse apart from excessive busyness.

Our trip to the US was fantastic and I will post some pictures soon. It was lovely to travel to DC to see Ann and Jon and family and to catch up on news and compare notes on treatment etc. It was great fun and truly family time and much needed.

We then headed to Utah which in all honestly we were a little apprehensive about - let's face it it's not a typical tourist destination. I knew that we would be welcomed with open arms and we were. Seeing Jen and Bob so radiantly happy was a wonderful thing - and to catch up with my wise woman Sissy was incredibly special - made better only by the addition of the gorgeous Annabella who at 2 was using her feminine wiles to steal my husband. Believe me, I could have taken her plump cuteness home with us. And then there was Susan who we spent a lot of time with and forged a new friendship with.

Utah in itself was really terrific - beautiful mountains and hot dry heat - we'd definately go back in a heartbeat. Enjoyed lots of fabulous food and good beer and wine (yes you CAN drink there!!). Didn't see the lake or much of SLC which was probably a good thing and were not converted to being mormons. Just met a lot of friendly, kind and very hard working people and explored and went white water rafting (SO MUCH FUN).

To New York which after the peace of Utah was a bit of a culture shock, but still it was NYC and felt like being on a movie set. I proved to Matt that after a diet of old movies and Sex in the City epsisodes that I could catch a yellow cab prettydamnwellthankyouverymuch. It just took patience, observation and a little bit of assertiveness - coupled with the female advantage. Again some AMAZING food, an incredible storm, shopping, walks through central park, exploring different districts, shopping, the Empire State Building, a boat trip around the island and catching up with Alan and visiting New England (and seeing Johnny Depp's house) made for a good rounded visit.

Our feet had hardly touched English soil when my course started - and the first weekend was made interesting by most of Central England being under water - including Oxfordshire. It added to the adventure I guess!

Having just finished the second weekend I can safely say I LOVE doing this. Pilates is helping my body, but I can also see where I can use it to help others like me. It really is something I feel passionate about. The course is physically demanding, but I'm coping better than I expected. I just need to get over my nerves of actually teaching!! Am really really enjoying it though! Can't you tell?

Just after the first weekend, Col arrived for about 10 days - it was great to see him and we had a few adventures - with me driving our new car. His book is out now which is very exciting - especially as it's now available on Amazon. It's called Understanding Genes and GMOs - and is written in layman's terms for the non sciency person to understand!

The garden is doing pretty well - though everything is well watered it could do with more sun to ripen the tomatoes. The other downside to the rain is the plague of the most enormous slugs. Urgh.

Despite the horrible weather we were blessed with a wonderful weekend and I was able to take my balloon trip to celebrate my 40th. I can't say much more than it was one of the loveliest things I've ever done. I felt safe and secure and was never once nervous of being up high. It's like a form of meditation - just drifting along watching clouds and seeing the land across Oxfordshire from a new perspective. I'd definately do it again!

This weekend we're off to Yorkshire to see the out-laws and swing in trees should be great fun! This year really is the year for trying new things and adventures.

And then it's our second wedding anniversary - this year has whizzed by after the stress of the first year. Lots has changed and lots hasn't. They say that what doesn't kill you makes you stronger and I guess that's true - our relationship grows and grows and we're having fun again and you can't get better than that.

Z xxx

Monday, June 25, 2007

Literary Lunch

We had a lovely birthday lunch at the Beetle and Wedge at Moulsford, which is a gorgeous restaurant on the Thames. Wind in the Willows which is based on that part of the river - and apparently Jerome K Jerome wrote his book at the Beetle and Wedge. The sun shone enough for us to have champagne and canapes outside watching the ducks and swans drift by. And then fabulous food inside by a window that looked over the river and we watched the clouds roll in and the thunder come.

Eleanor's birthday present to me was to have the table decorated in HUGE helium balloons which was fab. Will upload some pictures at some point soon.

In the meantime, this is a poem from Wind in the Willows:

`DUCKS' DITTY.'
All along the backwater,
Through the rushes tall,
Ducks are a-dabbling,
Up tails all!

Ducks' tails, drakes' tails,
Yellow feet a-quiver,
Yellow bills all out of sight
Busy in the river!

Slushy green undergrowth
Where the roach swim--
Here we keep our larder,
Cool and full and dim.

Everyone for what he likes!
WE like to be
Heads down, tails up,
Dabbling free!

High in the blue above
Swifts whirl and call--
WE are down a-dabbling
Up tails all!

Thursday, June 21, 2007

Fantastic news!

As most of you know I'm involved with Jo's Trust which is active in campaigning for the cervical cancer vaccine. Yesterday we heard that the JCVI has made a recommendation on the HPV vaccination! We still have a way to go, but this is a huge step, espeically with some of the nasty stuff that has been published about cervical cancer and HPV. Yesterday was a strangely emotional day. Democracy wins the day. My faith in the political process is a little restored, especially as I also got a supportive letter from our local MP, Edward Davey!

On a personal level other news is that I've lost 7 lbs so am really happy about that too! That's even with birthday celebrations :)

Z x

Monday, June 18, 2007

Fabulousness

I've taken a break from tackling the world's largest pile of ironing to write this.

I'm now 40!!!!!!!!!!!!!!!!!!! So far so good apart from the sore foot I got when I feel over in the wee small hours of the morning after getting home from the mass family birthday dinner. It was a good night and I spent the rest of my birthday recovering. I've been really psoilt - lots of lovely pressies and the celebrations are continuing with the birthday lunch on saturday. I'm going to milk this landmark and enjoy it as much as I can. What I will say is that when I first was diagnosed I wondered if I'd make it to 40 and now I'm here, everything is so precious.

The other excitement is that I was filmed last week for another news item which will come up in the future and that was a lot of fun. They filmed here and interviewed me. Jayne came along too and they filmed us handing tomato plants to each other for about an hour. It was hilarious. The builders next door (who had asked to be quiet) were most intrigued. I think they think I'm Kingston's answer to Charlie Dimmock (except I wear a bra).

The last couple of days have been spent studying anatomy which has been exhausting but actually really interesting. I just hope I can remember it all. It's going to really help the pilates.

Z x

Tuesday, June 05, 2007

Worm watch and other tails

It's been a weird couple of weeks. I went to see the wonderful Nichola (my nurse specialist) to go through my notes. There were a few things I wanted clarified and I wanted o speak to her about the endometriosis, which kind of got glossed over during the cancer treatment and fertility questions and stuff. And then after that it was irrelevant.

It was so worth seeing her and I'd recommend it for other cancer patients down the line - it's easy to not take everything in. And although most of it doesn't matter it does help to know these things. However I found the bit about the endo very upsetting and have been feeling very sensitive about it since. I know that NOW it doesn't matter, but to find out that after over 20 years of complaining about periods that not only did I have endo, but it was stage IV (the worst stage) is a little hard. Apparently the surgeons were relieved because I was a candiate for the trachelectomy because I would have had a "higher risk of morbidity" had they done the hyst, as well as bowel damage and so on.

I suppose the irony of everything is that it's likely that I already would have been infertile. I know it's easy to say after the fact, but it would have been nice to know. I know I shouldn't dwell on the past but...

The other thing that happened is that one of the girls from Jo's Trust died last week. She was about 27/28 and it was a shock to us all. And Louise's mother died on Sunday - very sad that she didn't make it to see the baby, but I know she just couldn't fight any more. It all puts my pity party into perspective a bit.

A very very sad week for all.

On a cheerier note I recieved my first birthday present today - it's one I'm allowed to open as it's a wormery for composting scraps and contains live worms that need looking after, so I've been having fun putting it together. I've been so excited about it - thanks Lyn and Derek - as it's really the only thing I wanted (sad aren't I!)

Z xx

Friday, May 25, 2007

Wish List

Deborah asked me what I want for my birthday and in truth I'm not sure, but I have got a wishlist so if anyone's interested... it's now in the links bit

Z x

Tuesday, May 22, 2007

ARRRRRRRRRRRGGGGGGGGGGGHHHHHHHHH

Sometimes I feel like I'm banging my head against a brick wall. I wonder why I bother trying to explain something to people and providing good solid information to them when they can't even be bothered to click a link, instead preferring to run around like headless chooks.

Why let common sense get in the way of a good panic?

Grrrr.

I feel better now.

Sunday, May 20, 2007

8 things about me

This has been going around blogs for a while but Rosamundi tagged the readers of hers so I thought I'd give it a try. There are some things that people might know, but other things, maybe not. I've tried to avoid stuff I witter on about here.

1. I hate DIY stores. They do my head in. I'm ok for the 15 minutes it takes to look at the homeware stuff, the paint charts and the kitchens and then I lose my will to live.

2. I have had a crush on David Essex for as long as I can remember. This drives Matt nuts, but given his age I'm not going to run off with him anytime soon. Plus I have a bigger crush on my husband (ahhhh).

3. When at dance school I nearly got arrested for dancing in the streets a la fame. We were protesting about the freezing of student grants. We protested a lot in those days. I also know more people than I'd like to admit who have been arrested (and aquitted) for some quite serious things.

4. I am a life long Labour supporter (blame my liberal, reactionary, middle-class leftie parents for taking me canvassing as a child) and have strayed since Tony Blair got in. I think I'd be stuck by lightening if I voted Tory though. I certainly couldn't live with the guilt.

5. I hate John Howard (Australia's PM) more than I hate Blair and Bush. He'd have to be out of power before I consider going back for anything more than a holiday.

6. I can bite my toenails (but I don't)

7. I have a weakness for musicals and any saturday night show that incorporates sequins, dancing or show tunes.

8. I love books. That can be blamed on my parents (see above) giving me a book allowance as well as pocket money.

Tuesday, May 15, 2007

A busy bee

This week I have almost a whole week at home which I think is pretty the first time since I stopped work. So much for being a lazy housewife.

I've been doing more campaigning stuff which has been fun and took me to a breakfast meeting at the House of Commons which was great and unexpectedly put my faith back in the Labour Party (further assisted by Tony resigning, Hurrah!). I do wish we could vote by person and not locally sometimes. Especially as our local branch of the Labour party is split over a new development (which we are opposing) and it's handbags at dawn.

My course started on Sunday - an intro to anatomy which was 9-5 and very well presented (not too medical and boring) but it made my brain hurt. I was bearly able to function afterwards. I think it's the first full day of anything I've done for ages! Now I have revision to do for the next installment! Oh joy.

I've also bitten the bullet and gone on a diet - not a faddy one, but a sensible one that monitors your food intake and exercise and stuff. HRT may be good but it really piles on the pounds and I want to hit 40 on the way to being fabulous again.

Monday, April 30, 2007

Tarot

I was reading a friend's blog and discovered this tarot card test. It's a nice distraction from other stuff:

What Tarot Card are You?
You are The Empress

Beauty, happiness, pleasure, success, luxury, dissipation.

The Empress is associated with Venus, the feminine planet, so it represents, beauty, charm, pleasure, luxury, and delight. You may be good at home decorating, art or anything to do with making things beautiful.

The Empress is a creator, be it creation of life, of romance, of art or business. While the Magician is the primal spark, the idea made real, and the High Priestess is the one who gives the idea a form, the Empress is the womb where it gestates and grows till it is ready to be born. This is why her symbol is Venus, goddess of beautiful things as well as love. Even so, the Empress is more Demeter, goddess of abundance, then sensual Venus. She is the giver of Earthly gifts, yet at the same time, she can, in anger withhold, as Demeter did when her daughter, Persephone, was kidnapped. In fury and grief, she kept the Earth barren till her child was returned to her.

Saturday, April 28, 2007

I want to scream

Recently I asked people to pray for my friend Kayla who is very sick and has been in and out of hospital since I met her when my treatment was starting. I'd met her through Hystersisters and we bumped into each other at the Marsden - I was recognised by the handbag I was carrying. And she's the one who introduced me to Jo's.

Throughout this time it's her strength that has been an inspiration to me. Sadly, her husband recently posted on Jo's and they have been told that there is no more they can do for Kayla. She's been moved in to a hospice ward. She has a lovely husband, three children and is around the same age as me.

Z x

Friday, April 27, 2007

Calm

All the excitement of last week has died down and things are a lot calmer which in some ways is good, because I can get on with other things, like pottering in the garden (not overdoing it) and pottering at home, and phoning my contact at the local paper about the council's dodgy dealings with the development they want to build locally and stuff.

My hard work in the garden has paid off because it's looking lovely - my sweetpeas are growing and the peonies have buds and I still have more flowers to plant. I love spring!

Our tiny little greenhouse is a flurry of activity with seeds propogating all over the place - and of course I over planted so we're going to have more veggies than space. Although I have managed to negotiate a small veggie patch near the shed. So far I have cucumbers, onions, two varieties of tomatoes and pumpkins on the way and I'm waiting for aubergines, sweet peppers and chilies. We experienmented last year with a lot of these in pots and had amazing results - one of the good things to come out of global warming.

I've also planted some herb seeds in the window boxes in the front garden, which gets lots of sun, so hopefully we'll have a little herb garden.

The other thing is....

HAPPY BIRTHDAY PIP!!!!!
Love you lots and lots xxxx

Z x

Monday, April 23, 2007

Panic over...

Just to let you know that my check went fine, despite being very very nervous. Anyway - the appointment went really well, so much so that the doc got a bit over excited and said that I should start coming every 6 months instead of 3. He then back tracked so I DO have to go back in 3 months but then it will probably move to 6. Am very pleased - apparently I'm exceeding all expectation!

Also last Thursday there was a flurry of activity due to the new study that says there's a risk of ovarian cancer when women take HRT.

Firstly I was driven to the News 24 studios in Westminster (the ones where they say "and now live from Westminster, Tony Blair" and you see a head and a shot of parliment). Was a very surreal experience as was in a box like a photo booth talking to a camera and a disembodied voice in another part of London! I'd got home, got changed and was eating lunch, when I then got a call that ANOTHER news programme wanted to speak to me so I was just on the early evening ITN news bulletin!! It's been fun and tiring. There's a lot in the press about it but more info is here http://news.bbc.co.uk/1/hi/health/6567847.stm

For the record, I was talking in favour of HRT, and for me the benefits outweighing the risks right now. If you want a laugh, here's one of the reports I was in! http://itn.co.uk/tags/hrt.html

The weather here has been amazing and we had our first bbq of the year on the weekend which was lovely. Deborah came over and sat in the garden with her knitting and I planted the window boxes (or rather put seeds in) and played with my food processor and made lovely salmon burgers.

On not so good news, I have a friend from Jo's Trust and Hystersisters who I met when was having treatment at the Marsden. She was having treatment for a recocurrence and it was very radical surgery - anyway she's been really fighting for the last year, but has had many problems. She's very very sick right now and I find it really hard - it reminds me how awful this disease is and how is can come back. Please send prayers and thoughts across to the Marsden for her and her family - she's a fighter but it's a very hard fight. It's especially hard as while she's not the first person I've come across that has had issues she's my first friend from the forums that became a real life friend. She's a very special woman.

Thanks

Z x

Wednesday, April 18, 2007

Overdrive

I have my checkup today - it's a year since my first post treatment checkup and it's very nervewracking. I'm sure I'll be ok, but that doesn't stop the nerves and the over thinking. My brain is on over drive. This has meant I'm on over drive too - have been manically gardening over the last couple of days. It's been nice as the weather has been good and it's lovely to see the results but of course I end up collapsing in a heap because I overdo it and then get really fatigued.

An Amazon order arrived yesterday. In it was a book called Cancer Vixen. One of my lovely godmothers saw an excerpt in the Melbourne Age and sent it to me. I laughed and cried and bought the book. It's a true story about a 43 year old New Yorker who is about to get married for the first time and is dignosed with breast cancer. It's all written in cartoon format (she's a cartoonist of course) and is hilarious, sad and everything else. It's exactly right. Well worth the read.

Ok, I have to stop procrastinating and get organised to go to Pilates and the hospital.

Z x

Wednesday, April 11, 2007

A right? Or a privilege?

So Natallie Evans has lost her appeal to use the embryos that she and her ex partner created when she was going through cancer treatment. This story has been one that triggers mixed emotions for me, not least because it was making headlines last year just after we'd made the decision not to try freezing embryos.

It's not that I didn't want to become a mother, because it's what I've wanted for most of my life, but it was because the odds were so against us and the mental and physical toll on us was going to be too much, especially just before treatment. I still find it very hard to deal with - most days I'm fine, but I still have times where it's a hard thing to realise that you'll never have children that look like you.

But parenthood is more than just genetics and I think that should never be forgotten. It's a commitment. I feel for the ex partner who did not want to be forced to be a parent - and most particularly it was evident to me that he did not want to have children with her. It's a very harsh decision, but at the same time, he SHOULD have a say. Natallie said it's her right to have children - but it's not. Having children is a privilege and one that we take for granted to much I think. It's hardest for me when I see women who use their fertility as a statement - that don't think of the child and their life. Or those who take things for granted. I wish more women would see how lucky they are to have that chance, that they are blessed and have been granted a huge responsibility.

We may still adopt when we can. It's a scary prospect because of the responsibility that comes with it - but I think it would be a wonderful thing to give love and hope and opportunity to someone who needs it so much.

On the one hand, I understand that feeling of utter despair and grief that Natallie feels, but you can't be selfish about parenthood. To do that you're missing the point - in the end it's not about YOU, it's about creating a person and all that comes with it. I hope that Natallie can see that if she wants to be a parent she still has time. I suspect though that her need to have her own child has blinded her to other options.

Tuesday, April 10, 2007

I hope everyone had a good Easter/Passover/Spring celebration. We had Matt's parents and sister here and had a lovely weekend - lots of eating, and more eating and chocolate and fun activities like the London Eye, and boat trips on the river and seeing Spamalot. And friendly competition over various sporting events.

It's been interesting over the last few weeks - I sent a campaigning letter for Jo's Trust off to some of our local press and MP's (both British and European reps) and it's been interesting to see the response I got. There's not been ANY response from Edward Davey, our local MP which I think is really poor. I know the guy is busy, but surely he has help in handling mail? It would be nice to get some acknowledgement. Most of our MEPs have been pretty useless too - I'd like to name and shame Robert Evans in particular.

BUT - a couple have been great. I quote:
Thank you very much for writing to me about the need for the Government to tackle the causes and incidence of cervical cancer. I have written to the Department of Health about this issue and will let you know when I hear from them. I hope, in the meantime, that you have also written to your Westminster Member of Parliament.

Best wishes John Bowis MEP

And

Thank you for your email addressed to Mary Honeyball on the subject of cervical screening and the new HPV vaccine. As a member of the European Parliament's Cervical Cancer Intergroup, Mary takes a keen interest in this issue and notes your concerns. She too has been very worried about reports that the number of women attending for screening is falling and she would like me to reassure you that she continues support efforts to increase this and is pushing for the early introduction of the vaccine.
Kind regards
Helen Hegarty
Assistant to
Mary Honeyball MEP


Plus our local freebie newspaper, The Kingston Informer, has been very supportive. :)

This time last year I'd just finished treatment and Col was here. This time I'm starting afresh. I still get very tired - just about everyone I know who has had the same treatment says the same - but at least this time the chemicals are not in my body and I'm able to exercise.

This month I start my Pilates instructors course - I have a few weekends of Anatomy for the next months and then in July I start my training proper. I'm so enjoying my sessions with Lisa, as well as my home workouts and am very excited to be embarking on this. It's scary to think that I'll be running my own business and seeking clients soon, but I'm sure it will work out. Lisa says that she thinks I'll be good at it - the dance training from years ago helps, but also my experiences of surgery and so on help me understand what other people go through from a rehab point of view, which puts me into a different category to the gym bunnies. I've not lost any weight, but can feel myself toning up and getting much stronger. I always feel so confident and good about myself after working out.

Hope the sun's shining wherever you are.

Z x

Sunday, March 18, 2007

Image change


I'm starting to get used to having my picture taken now, though I hate it. I had some shots taken for the Jo's Trust PR people and I actually quite like them and thought it was about time that I changed my profile picture!
Yes, I now have brown hair for the first time ever. I'd been my natural colour for a while so thought it was about time I had a change!
Z xx

Wednesday, February 07, 2007

Highs and lows

Where has the time gone? It's february already and we've had a warm January, with snow for the first time in years (go figure) and more snow forecast for tomorrow. The last few weeks have been on a bit of a roller coaster - trying to leave work, which has happened though the apron strings are not quite cut and finding that I'm busier than ever.

Funnily enough I'm enjoying being at home. Someone asked me what I do. I don't know exactly but it seems that I'm running around - spring cleaning, and doing jobs that have been put to one side for ages. I'm seeing the house afresh and wanting to change things. And panning our trip to the US and just stuff really.

I've been to the House of Commons to lobby for the Cervical Cancer vaccine and am getting more involved with Jo's Trust and other charities - and in fact appeared on TV last week, being interviewed about my experiences with cervical cancer and the importance of smears. I really really enjoyed the experience and from the feedback I got, was quite good at it, so I may be doing more media work.

I've also started doing pilates sessions with Lisa and am investigating courses to train as an instructor - it's all very exciting and daunting and scary and very expensive so am formulating a plan.

And in the middle of all this excitement, Gaffa died - he's Joss's father so technically not a relation, but as close to a grandfather as I've had for many years and just an amazing man. He'll be much missed as he was such an integral part of the extended family and dealt with everything with such humour and dignity. He was 94 years young.

I am going to write more about India but in the meantime here's a picture of me that Jayne took in Mumbai - I don't like pictures of me at the moment, but this one is one that I like.