Wednesday, March 22, 2006

That's my final radiation DONE DONE DONE!

Tummy's a bit sore, but I celebrated today with a good old british bacon buttie (have been on a low fat diet during all of this). Am so happy, though a little tired and battered.

Appointment with the consultant in 4 weeks. But saw the nurse today and apparently my bloods look really good and my haemoglobin levels are better than they expected at this stage (whatever that means)!

Oh, and the nasty nurse actually apologised to me! :)

Sunday, March 19, 2006

Well, Chemo has finished and I only have three radiation zaps to go - I feel like I can see the finish line now. Last week's chemo was the worst, it was quite painful as the fluid went in and I'd get a shot of pain whenever it was restarted. And soon I'll be on less drugs and my sense will slowly return. I've been listening a lot to Johnny Cash and one of his songs, Hurt, has a resonance to me - it's about addiction, but it has parallels with the feeling that all the chemicals in my blood make me feel. It's a strange place to be in, when feeling pain makes you feel alive.

But it's going to be up from here on in and that's a good thing. I can start planning for our future and have some projects to look forward to at work and home and a holiday to organise. I'm taking things easy though - everything in baby steps and my priority now is to get strong physically and give my mind a rest or a different challenge. It's not over by anymeans - it's going to be a slow journey, but slow's not a bad thing sometimes, as it lets you take notice of the things around you.

Again, thank you all for your support and love over the last few months. It's helped me stay strong.

Z xxx

Friday, March 10, 2006

Yesterday, on the whole was a crap day. Imagine one of those days after a busy week at work where you just can't seem to do anything right and add on the fact that you are being drip fed poison and have a drip machine that keep having a tantrum because the battery flattens and you're half way there.

It was made so much better by having Deborah there - we hadn't seen each other for ages so it was a great opportunity to catch up on gossip and put the world to rights and to just have her there when it all got too much.

So what happened? I'm over half way through so keeping up the skiing analogy I had a wobble on the down hill piste. Deborah made a good substitute for ski patrol in terms of rescue (as did wonderful nurses Steph and Nichola), although I will state that none of them look like the 6 foot, tanned clones that sledged me down in Vail.

It was one of those days where you just can't seem to get things right - lost too much weight too quickly, not been taking enough fluid, had bloods too early, blah blah) and then a beeeeach of a radiotherapy nurse told me off in front of the entire waiting room and staff for missing an appointment yesterday (even though she was in a meeting and I was told I'd have to wait over an hour) and my drip feed was throwing some sort of tantrum and bleeping and no one could stop it.

And she said she couldn't see me and somehow it was all my fault. And I got back to the chemo unit and cried. Nichola came and saw me and was lovely and is going to come with me today.I've had a big week at work (interviewing and meetings) and am tired and run down (though my iron is ok) and I feel fried inside and it all was just too much.

BUT the great news is that I was speaking to Nichola about the pamphlets that they give out for chemo and radio and how they could be more helpful and I said how I'm a writer by trade (though it's not what I do now) and would love to re write them and she said, well actually we're redoing the radiotherapy one and I'll get you involved. I'm really excited that I'll get a chance to give something back and help other people.

It was also sad yesterday as one of my Hystersisters passed away - she had ovarian cancer and was the same age as me. I knew that in this journey I'd come across people that might no make it and it makes it more shocking and sad in a way because I know we are all fighting so hard. It's a very personal battle, yet we are together in this.

I feel sometime that gynae cancers are not taken as seriously as other cancers as they are embarrassing and also because when they are caught in time there are high success rates. It's one of the reasons I write this blog to try and educate women that there is nothing to be a shamed about by talking about these things. I hear stories of women who have nasty comments about cervical cancer because it's caused by an STD. Well something like 80% of the sexually active population carry the virus And the HPV virus that causes cervical cancer is a DIFFERENT strain to genital warts. And the jury is still out on whether it is caught just by sexual transmission. We are the unlucky ones who for some unknown reason contracted cancer.

Aolpogies to the Hystersisters who have already read some of this - I'm too tired to write other stuff! There is a lot more I want to say, so might try and do another update on the weekend.

Friday, March 03, 2006

Wow, I'm half way through the chemo which is rather uplifting. Nearly half way through the radiation too. Can see a glimmer of light through the tunnel. Yesterday was fun, cos Trace came on Chemo duty so it was good to gabber all day and take my mind off things!

I laughed at Pip's comments about wearing nice undies - they are mainly girls who treatment and very efficient. I don't think they have time to notice the undies so at the moment it's still Bridget Jones ones as I still can't fit into anything else and also I get pen marks on me so wouldn't want to ruin anything nice. Oh for the return of days of little wispy things!!

Anyway things I've learned over the last week:

1. I don't feel bad on the actual chemo day. It's after that I feel crumby - buy the weekend I'm tired.
2. What they say about the metallic taste of chemo is true. It's constant. Highly flavoured sweets/lollies/candies are my friend. I first noticed it when I couldn't stomach a good old British cuppa.
3. I feel like a drug cocktail, which I guess I am. Was quite scared on Monday as I could'nt remember ANYTHING with out writing it down, was jityery and I couldn't focus. I still don't know how I held it together at work as it must have been v noticable - my boss did comment and said that I'd done a good job. mmmmm. The easiest way of describing it is if everything in my vision had moved slightly to the left and would keep shifting. They think it might be the steriods they have given me for anti nausea so they are adjusting my meds. Urgh.
4. There is no consistency to what I feel like eating on any given day. And what I feel like eating has no correlation on how I'll feel AFTER eating it.
5. Bananas and immodium are my friend thanks to the radiation.
6. Eating little and often helps. Miso soup is another life saver.
7. The jury is out on the low fat thing - it's supposed to help the diahrroea, but certainly's not stopped. It's hard to get enough protein and high fibre is hard to eat too. And veggies (unless in soup) turn my stomach which goes against all my normal eating. Fruit is great, partly because it combats the taste in my mouth.
8. While I'm being careful, chemo days are days when I am less strict. It helps to have the occasional treat.
9. Berry is now obessed with the water fountain - he gets stroppy it's turned off. H's new favourite seat is under the kitchen table listening to it flow!
10. Blue was a doctor or healer in a former life - he's being very attentive of me.

Thank you also for the other comments - I'm very appreciative of the support. Being at the Marsden I'm surrounded by amazing people. The staff are so great, but I'm also interested in observing others around me. I notice how some deal with things with grace - WHATEVER they go through and others just complain and are rude. I know it's hard to deal with all this but to me negativity is so toxic. It's not to say that we don't have bad days or arguments or tears, but why take it out on someone else who's trying to help. That said I'm sometimes ready to punch the metaphorical fat bloke on the tube who refuses to offer his seat after I've had a dose of radiation. But how is he to know? I still have my hair, no excessive weight loss. Should I wear a badge or stick a cushion up my jumper? Are manners too much to ask?

But people's attitudes make me laugh in the end - I was in the lunch room at work and the girls asked me how I was feeling (it was monday so bad) and I was describing it and one of them said "Oh I feel like that everyday!" It was not just me who gave a withering look. But this is the woman who complains when the lights are on in the office because they are too bright. I suppose she has her own problems but that's the scope of her experience, I just wish she could see how lucky she is.

Z xxx

Friday, February 24, 2006

Of course that picture of me looking as glamorous as I could when dressed as a ribena berry on the ski slopes was taken just before I sat down on the mountain having a panic attack and had to be rescued by ski patrol. A whole other story and adventure but I think in future I'll ski the Victoria Beckham way - glam up for the photoshoots and then take a nice sleigh ride.

So I've had a week of radiotherapy and my first chemo session and I keep telling myself "at least you're not throwing yourself down a mountain on narrow planks of plastic" (ok not plastic but you get my drift). I think it's working. But the drugs could be helping too. Given the choice beween skiing and chemo, it's a tough call but the idea of sitting in the sun watching the snow glinting and other people throwing themsleves off mountains is an attractive prospect.

I'm now on sleeping tablets. They have made the biggest difference to my well being - before I was feeling like an over tired 5 year old who had been eating too many e numbers. On edge didn't describe it. And I didn't feel rested even if I did sleep. Now I feel much more relaxed. I'm also on a VERY VERY low dose of anti depressant - that hasn't really kicked in, but it's more of a preventative measure - my therapist wants to keep me feeling as have been off late, which is handling things.

So what's the treatment like?

Radiotherapy is all about a constant schlepp to hospital - except weekends - and I always think well it will only be a few minutes, which it is but then there seems to be other stuff like bloods to do or people I need to see so I don't get out as quickly as I like. But in a nutshell, you have to lie on this metal slab/bed (no mattress) and in my case with my pants down to my thights with a small piece of paper covering my modesty. Then they manipulate you around so that your little tattooed dots line up with the lights and mark things in pen, then you lie there while they leave the room and you're left staring at a white ceiling with bright lights like a space ship and this thing circles you and targets your dots. Sound effects are mmmmmmmmmmmmmmmmmm beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep. I am convinced that it's a form of dalek and it will start saying "exterminate, exterminate"!

Chemo is a long long day - lots of waiting around and bloods being taken and then more waiting. Then a canular put in, then a hour or two of fluid to get my kidneys going, then half an hour of something to make me pee, then two lots of anti sickness, then an hour of the actual chemo (cisplatin), then another two hours of fluid. Luckily I wasn't sick so they allowed me home after that and I could have the remaining 500mls of fluid at home, which includes soup etc. I felt a bit itchy and lightheaded almost but on the whole it wasn't too bad. It's a cummulative thing, so we'll see how I progress.

Roll on the end of March!!

Z xx

Wednesday, February 22, 2006

Just a quick message to all in the Serre Chevalier 2006 Ski-Party to wish you all happy holidays next week!!!

As you may already be aware, this will be the first year since my debut that I’ve not made it along, but I very much hope to be back on board in 2007.

Fear not though, I’ve found myself a “stunt-double” (although he himself said “treble”), as Chris will be filling my ski-boots. So bring on the Bandit Hat (I want to see photos)!


And don’t forget to pack those all important Tin Pants! As modeled by Zoë in the picture from Vail.

Saturday, February 11, 2006

This week went incredibly quickly. It was busy, almost too busy and I seemed to be running from one place to another. And that's with only one hospital visits. It's not boding well for when I have to go in everyday! You'll notice that this blog has a new look - its because the template I was using went funny and we spent an unsuccessful few hours of geekily trying to adjust the code.

I've survived 12 hours (divided into 3 x 4 hour blocks) of work. Mostly it was reading CVs and interviewing so exhausting, but also amusing. Someone listed his personal interests as including "cocking" and another said she had been working as a "porn broker", but what astonished me more than anything is that people think it's ok to have a rude or novelty email address. It might be amusing to call yourself Handsome1 or nickerless but I can guarantee it won't get you a job.

I also went to see a therapist yesterday - I think he thinks that I'm fine. Actually I think he's rather amazed at my slightly zen like attitude to everything, but as I said, what's the point in being angry? Being negative or nasty or angry at the cancer or other people is not going to help me get well. That's not to say that I'm not sad, or blue or grumpy at times but I can't blame anyone or anything. I'll admit I don't have much patience for fuckwittage though! But ultimately there's a much bigger picture out there and everyone has their crosses to bear*. Anyway he was a nice man and it was good to talk to someone that has no emotional attachment. I felt I could cry freely without anyone getting upset. He's recommended me some books - not so much self help but more that he thinks I'd be interested in. He says my attitude is courageous - I don't think it is, I think you just have to battle on to survive in this world. You just do the best you can.

We're going away for an early Valentine's treat tonight to
the Petersham which is where we had our first married night. It's going to be a lovely little bit of luxury before all the crap - the restaurant is great so we're really looking forward to some "us" time, with the added benefit of not having a cat jumping on the bed at the wrong time!

On Monday I have to go to have a simulated scan and then on Thursday it's The Real Thing. Nervous is not the word. Given most of the women I know who have had this type of radiotherapy have had a bad time of it, I'm not looking forward to this month at all.

Z xxx

* Always reminds me of Gladly the Cross eyed Bear!

Saturday, February 04, 2006

This week has probably been the worst for a while, in some ways and in others the best. It started with a call to the hospital to tell them that I'm going ahead with the treatment and then a call back asking me to come in on Tuesday. It’s all happening so quickly after nothing really happening at all. A lot of tears have been shed and we’ve both been feeling drained and tired and nervous and stressed.

The meeting on Tuesday went over what I had to expect and planned my appointments - the radiation will be everyday (except weekends) from 16 February (Matt's birthday!) for 5 weeks, and the chemo will be a whole day for 4 weeks starting on 23 February.

Meeting with the Deborahs (on different days) certainly made life seem better, even though trying to find somewhere that served Elevenses, or indeed knew what it was, was almost impossible. Most disappointed by the Ritz who let us down terribly - anywhere that serves afternoon tea at 11 am and charges £38 for the privilege is taking the proverbial. What happened to crumpets? Any way we were saved by the Wolseley (again).

That place is very good - great service and food and not as expensive as one would think. Deborah T treated me to a threading experience, which is an Indian way of shaping eyebrows and in fact definitely worth a return visit. I didn’t sneeze once and have a much better shape than waxing gives! Meeting a tweeded acquaintance of hers (our man in somewhere exotic) in the lingerie shop Myla was slightly surreal - as was us giving one of the members of staff legal and financial advice! No one can accuse my friends of being boring!

I spent all day Thursday at the Marsden having various tests. It was a long and tedious day, highlighted by meeting my husband for lunch and bumping into one of the women from the Hystersisters board (who recognised me from the blog and my handbag!). Kayla is an amazingly brave woman and inspirational - she’s joined my group of “battlers”!

I woke up yesterday with a squiffy tummy and decided to have a day off. I couldn’t get warm and was happily blaming it on the central heating until I took my temperature and it was over 100°! I slept most of the day and night, so caught up on the sleepless nights that have been the norm of late. I’m not quite ready to eat normal food, but my temperature is back to normal and I’m slowly rehydrating. At least this is practice for the radiation.

I’ve changed some of the links on the side. This is because my friend Natalia is running the marathon in April so I wanted to include a link to her page.

I’m back to work (part time) next week. I’m looking forward to it mainly though there are one or two stresses that I’m NOT relishing.

Z xx

Tuesday, January 31, 2006

There comes a point in time when you have to stop chasing rainbows.

To look at Zoë now you’d never know there was anything wrong with her. In fact, there may not be anything wrong with her - at least in terms of the cancer - but how can we be sure?

Surgery has successfully removed the tumour, but at this point in time they can’t be sure they’ve eliminated all the cancer cells that may lie in the surrounding tissue. As such, in order to be as positive as we can be that the cancer won’t come back, a course of radiotherapy and chemo has been recommended - but there will be side-affects.

Of course, she doesn’t have to have the treatment… She may be OK. But the doctor’s might just as well quote Dirty Harry: “You've got to ask yourself a question: Do I feel lucky?...... Well, do ya punk?”

(And incidentally, it’s not just a case of “let’s see how we go, we can always try the radiotherapy if it does come back”. Oh no, it’s not that simple - chances are, if it does, it will be worse.)

It doesn’t really leave us with a lot of choice. Our number one priority has been - and always will be - that Zoë gets better, and neither of us is prepared to gamble on that.

So we’re both agreed that the radiotherapy option is the safest way to go, but as you may know, the hope that we might still have our own children is something we’ve been holding out for. We realised early on that this was, at best, unlikely, but I think we both thought - hoped even - that we’d still got a chance.

There were a couple possibilities that might give us a chance in the future, but the fact that they would involve further surgery - possibly extensive - meant they were not really practical. Zoë’s only just recovered from her last operation, and more surgery is the last thing she needs before embarking on the radiotherapy - and besides neither of these options were in any way guaranteed.

Realistically then the only practical option we were look at was the prospect of surrogacy - an emotionally difficult concept to accept - never mind the logistics of actually finding a suitable surrogate and achieving a successful pregnancy.

I think before we went to the hospital last Thursday we both believed that the 'egg harvesting' required to keep this hope alive was a mere formality. Regrettably however, it is not.

In short, we’d basically be looking at only one shot at an IVF cycle (a cycle many couples will have to go through several times to achieve a pregnancy - because the success rate is so low – even without complications such as Zoë’s) so the odds are stacked against us.

Every step of the way we’ve been given hope that we might yet still have our own children. The odds have never been good, and now they’re verging on astronomical. Furthermore, we can’t afford to keep waiting - if the radiotherapy and chemo are to be effective, then we need to act soon.

It’s a tough decision, but we’re both agreed on one thing: It’s time to move on and remember our number one priority... So we’re off to the hospital tomorrow to get the radiotherapy ball rolling.

Thursday, January 26, 2006


Well, happy Australia Day (and Happy Birthday, Caroline!). Not much to report, but we're off to the fertility people this afternoon and an appointment with a naturopath tomorrow. In the meantime, here's a picture of Blue and Berry all grown up!

Wednesday, January 18, 2006

The last week or so has been very up and down. It's been hard to be at home with everyone else at work after the sociality of Christmas. And of course I'm now feeling better after the surgery but with the next lot of treatments looming ahead. It's hard to stay postitive in all honesty. I've been feeling isolated and somewhat depressed, a little forgotten about as everyone gets back into the New Year.

But there seems to have been a bit of confusiuon about my treatments. I WILL have to have radiation and Chemo. These will probably be in March. We have an appointment with the fertility people, but this is not about us having our own baby but the possibility of preserving my eggs or embryos so that we can look for a surrogate in the future. Sorry to be blunt but right now I'm feeling that there's no end to all of this.

I am however looking at going back to work part-time. I don't want to commit to full-time (if I ever do) until I feel fitter and my treatments are over, especially as Chemo taks up a whole day. If I have to go into town everyday for radiation, I may as well use that trip for other means.

Anyway to keep me focussed I'm working on a scrapbook of the wedding which I'm enjoying a lot.

Love

Z xx

Tuesday, January 10, 2006

Happy New Year. Let's hope it's a good one as Lennon said.

We had a lovely break - was nice to be away from hospitals and have "us" time and talk, and take walks and have naps, and breathe fresh air. Coming back was hard though and it hit me like a ton of bricks.

We went to the hospital today and saw the radiotherapy consultant. Another nice man. He talked through things with us again and in all honesty it looks more and more like I'll need radiation. We still have to see the fertility doc and find out our options there (including egg harvesting etc). And now we have a better idea about what to expect in terms of what will happen to my body during the treatment.

Until we've seen the fertility person it's hard to put a time frame on things but it looks like I'll be having my treatment in March - that will be 5 weeks external radiation, some internal and chemo. It's pretty hard emotionally to deal with everything so I've asked to be referred to a counsellor so I can talk to someone impartial about things in general.

On a positive note it looks like Col will be in the country at the end of March, so something to look forward to, and I'm starting some light exercise (walking and pilates).

Thanks to Ness for sending me a wonderful book - thank you - I really enjoyed it and am very proud of you (Ness has set up a small publishing company to reprint rare children's books). Anne, I hear that you are going to be marking Cancer Day partly in my honour, thank you too, it means a lot. To the other person who sent me the Bugsy Malone DVD, thank you too, you know who you are and it's much appreciated! And everyone else who have sent me things and love and good wishes, thanks again. I miss the Fools so much, but I can't go back at the moment which is frustrating and upsetting, espeically as I could use the entertainment right now!

Our outreach nurse was saying today that undernormal circumstances I'd have the all clear by now, and so it's no wonder we feel like this is going on and on. It is very frustrating.

Z xx

Thursday, December 29, 2005

I hope everyone had as nice a Christmas as we did - we were at Matt's parents and ate constantly. I didn't drink that much booze as kept falling asleep any way! My contribution was making the Christmas cake and pudding before my op. I'm not quite Nigella but both were well received. We also got some wonderful gifts and felt very spoilt. We'll spend NY with Jayne and Joss and the Graham clan in the country which will be nice.

I have had so much time to reflect over the last few weeks/months. This year has been an extraordinary one for so many people - there has been so much illness and disaster. Yet at the same time there's been immense joy at times.

In their Christmas letter Ann and Jon used the quote from the Tale of Two Cities about the best of times and the worst of times and it's so appropriate. Ann has had pretty evil treatment (I think I've got off lightly in some ways) but like me has seen how much love and kindness there is in this world. Cancer is a strange blessing - it opens more doors than it closes I think. For me, I know that things will never be the same. Many things will be better although some feel quite final. But it has certainly strengthened many old friendships and created new ones. I think it's also created a much stronger bond in my "patchwork" family - the wedding brought people closer together in both mine and Matt's families, but this experience has cemented it.

A word that plays in my mid a lot is faith. Not religous Faith necessarily, but I've had to put a lot of faith and trust into other people which is not something that has ever been easy to me. With cancer, you need more than hope, hope is the desire and expecation of getting well. Faith is the complete trust that you WILL get well, that your mind and body will cope, that the doctors will do their job and that your friends and family will support you - plus there is the faith that there is something out there that guides you. I understand religous faith now, more than ever although for me it's not about Gods or Angels but about the spirit inside.

That's all got quite heavy, and please excuse my whitterings on, but I guess I'm spending too much time alone! However, I found some quotes that touched me a little and have made me think and I'd like to share them:

We have not lost faith, but we have transferred it from God to the medical profession.
GEORGE BERNARD SHAW

I feel no need for any other faith than my faith in the kindness of human beings. I am so absorbed in the wonder of earth and the life upon it that I cannot think of heaven and angels.
PEARL S. BUCK

Nothing worth doing is completed in our lifetime,
Therefore, we are saved by hope.
Nothing true or beautiful or good makes complete sense in any immediate context of history;
Therefore, we are saved by faith.
Nothing we do, however virtuous, can be accomplished alone.
Therefore, we are saved by love.
No virtuous act is quite a virtuous from the standpoint of our friend or foe as from our own;
Therefore, we are saved by the final form of love which is forgiveness.
REINHOLD NIEBUHR

The only resolution I have this new year is to get better - I can't think further than that at the moment. I really hope that this year is a better one for all.

Happy New Year everyone.

Z xxx

Wednesday, December 21, 2005

We had a great time at Paul and Sarah's wedding - it felt great to be wearing a pretty dress and heels and make up - I even danced! It was good therapy. I was very tired and sore afterwards but it was worth it, just to feel human again.

I've added a feature for the comments on this blog which means I or Matt sees them before they are published. Just as well because today I got another nasty one - apparently me not having children is a reason to celebrate because I'm ugly and would spread the cancer. Merry Christmas to you too. It amazes me just how poisonous people can be.

Pip asked what GolightlyCat means - well it's a screen name I adopted ages ago using Breakfast at Tiffany as inspiration. The main character is Holly Golightly and she had a ginger cat called Cat. Thanks for all your comments Pip - they are appreciated. I'll be in touch after Christmas. Am jealous of the hot weather, but also love cold wintery Christmas with the lights and holly and fir trees and fires. We're spending it in Yorkshire, then back to London then Oxfordshire for New Year and then a couple of days at the Lakes in Cumbria. It will be cold and wild, but I like a bit of weather and all the better for snuggling! :o)

We went back to the hospital yesterday. It's all very complicated but they are recommending that I have radiation. Apparently my margins are 3.5 mm and they usually prefer 1 cm to feel confident that the cancer won't return. So we have some decisions to make. BUT we've been given sometime to think and talk and also see a fertility expert which will help us get some more information together.

If I have radiation the standard treatment (for all cancers I think) is about 28 days of short zaps of external radiation and then a day or so of internal radiation, coupled with low dose chemo. It doesn't hurt but there are both long and short term side effects (which can be worse after surgery) so we have to weigh up that and the risk of the cancer coming back.

Hmmmm.

Anyway have a wonderful, peaceful and happy Christmas everybody.

Z xxx

Thursday, December 15, 2005

Well, after the drama of last week I've turned a corner recovery wise - am feeling much much better and even managed a shopping trip to buy an outfit for Sarah's wedding (I really reccommend John Lewis's personal shopping service, it's free and stress free and anything that does not involve me turning into a tearful wreck at not finding anything to fit has to be a good thing). Am so looking forward to dressing up up and feeling feminine and pretty - as much as I love my Primark PJ bottoms, they are not exactly glamorous!

The pathology results however are not looking good. They only arrived today so Mr Ind had not had a chance to look at them properly but basically they have confirmed what he feared -not that I have a problem with cancer but that there is another issue that needs addressing. Apparently when I was in surgery they found that I had extensive endometriosis. They tried to remove as much of the cancer and the endo as they could but the pathology results look like the margins for the cancer are too close to call (because of the endo), so I'm not out of the woods. This means that it's highly likely that I'm going to have to have more treatment - and that is going to be radical.

I'll be honest - this is devastating. To have a small chance and to grab it only for it to slip out of reach is really frustrating. What is more, is that for most of my adult life I've had "women's problems" and have generally been told that my painful periods were normal and that I should take the pill and painkillers etc. I'll also add that most of the time this has been with women doctors who have had the attitude "we all have period pain". It has also had a huge impact on my career path and how people viewed me when I was in so much pain that I couldn't dance. I look back and think about how I was treated at dance school and while I know that was in the past it's incredibly painful to know that I wasn't making it up.

By the same token I don't have regrets about the path my life has taken - after all I've met Matt and I'm very happy. I just feel incredibly let down by the health system (and not just the NHS but Aussie docs too).

Again I'm exhausted. The idea of more treatment scares me, especially as it might involve more surgery. We go back to clinic on Tuesday and have to have more talks about treatment and also some serious decsions to make. As Ronan Keating sang "Life is a roller coaster baby, you just gotta ride it". I think that's our theme song right now.

I wanted to extend more thanks to everyone for their comments here, and emails and books (thanks Ness and Deborah and Kate etc etc), for the Christmas cards and texts and general friendship and laughter. I have managed to send some Christmas cards out, but I apologise if I've forgotten anyone - our thoughts are with you all.

Finally don't forget it's the Strictly Come Dancing final on Saturday - the remaining three are all fabulous in their own ways so I'm not too bothered about who wins but it's good old fashioned escapism and that's good medicine!

Z xx

Friday, December 09, 2005

Before I start, I’d just like to thank everyone who’s been asking after us, it’s been a while since we posted anything here - so apologies for keeping you hanging on, but here’s a brief update.

OK, so no beating around the bush, December’s not been a good month so far, and we’re both hoping it’s going to get a lot better in the run up to the Christmas holidays.

As you know, Zoë was doing fantastically well post-op, and making a good recovery here at home - slowly but surely getting her strength and mobility back. This past week however, she’s been really quite poorly, and we’ve been back and forth to the doctors and in touch with the hospital on several occasions.

Yesterday was probably the worst day. Earlier this week Zoë had been prescribed antibiotics as it was feared an infection was the reason for her downturn; but the nausea they induced reached a new high, and you can probably guess what happened.

Anyway, I don’t want to worry you all unnecessarily, and I’d like to reassure you that although she’s some way from perfect health, Zoë's looking much much brighter this evening than she has all week. (Thankfully the antibiotics proved unnecessary, so she's off those too.)

It’s been very tough though, and our attempts to return to anything like normality have been somewhat thwarted. We’re shattered, as it’s both physically and emotionally draining, so some things - like posting updates to the blog - have had to take a back seat.

Still, I think things are on the up again now, so let’s hope the trend continues, and that our visit to the clinic next week brings more good news.

Matt

Tuesday, November 29, 2005

I'm realising quickly that I mustn't push myself as much as I have been - yesterday I took less pain killers and took a walk. The walk was good but without the pain killers I ended up tired and cranky and feeling horrible.

But the good news is BLUE IS BACK!!! I went downstairs on Monday morning and there he was - 10 days later. Little shit. Of course Berry's nose is totally out of joint having taken on the role of top cat. He'd been a bit lonely but was coping admirably ;o) so now he's hissing and refusing to be in the same room as Blue. He'll get over it. If only they could talk!

Now a certain friend of mine (you know who you are) has her first ever smear test yesterday and complained about how awful it was. Well, yes they ARE awful but it's better to suffer a tiny amount of indignity than lots (combined with pain etc). So girlies MAKE SURE YOU GO. And while I'm in lecture mode, check your boobs as well. And boys your check your bits. It's better to check and not find anything or to find something and get it sorted than stick heads in sand. I was pretty good about getting checked and still ended up like this, but thank God they found it in time.

Ok, time's up. It's rest time now.

Z xxx

Saturday, November 26, 2005

I'm loving being at home. It's peaceful here and Matt's mum, Lyn has been keeping me company. She and Derek have gone to Pompey this weekend to help Em and Steve move (they've had a stressful time of it too). We've had a lovely quiet few days - I've caught up on Strictly Come Dancing (sequins! yay!) and we've put the world to rights. I'm so lucky with such supportive parents and in-laws!

As far as my brain being fried with daytime TV - it is already fried with the amount of drugs I'm taking. I need them for the pain but they make me feel weird and floaty and I can't think straight. In a way it's probably just as well as one of our cats, Blue is still missing and without the sedation I'd be distraught. As it is I find it hard to do anything other than sit and dribble at the moment!

Hospital was weird - I find it hard to deal with the lack of privacy. I know it's odd given I'm quite open about things but when you're dealing with other people's sounds and smells so openly (like commodes by beds) it's deeply unpleasant. Not their fault by any means just strange.

I really kept to my own ward but I did meet some amazing women. One girl had an ovarian cyst - and had been palmed off by the doctors who said that she was just gaining weight and stuff. Eventually she had a scan and it was diagnosed. There was so much fluid in there that you could hear it slosh. It was removed on Monday and weighed 17 pounds.

What was good about hospital was that we were all in there for the same reason - to try and get well. It didn't matter what stage the cancer was at or what the treatment was, we all had the same goal, and some hope. We all suffered pain and embarrassment and indignity. On Tuesday I cried all day - everything had hit me. It was the first time I'd done that and I needed it. No one said anything like "keep your chin up" or anything - they just understood that it was part of the process. We also found things to laugh about - like when I was so delighted at having my bladder catheter out that the whole ward (if not floor) heard me yell "Thank you!". Or when I had my other catheter removed and there was still a stitch left inside me and the doctors turned up with a huge torch to stry and locate it. You have to see the funny side when you have your legs splayed and a torch shining at you.

I know that recovery will take a while but am rather proud with my progress so far - apparently I have a high pain threshold because everyone was astounded at how little morphine I self administered. I think years of dancing and putting myself throught that sort of pain paid off in the most unexpected way!

Thank you to those of you that have sent cards/emails/blog comments flowers/magazines/books/visited. It really has been appreciated. Matt's printed out things and showed them to me when I was in hospital.

Finally a message for Fools (stop reading if you are not a member of TMF). I think many of you have realised that I'm not posting there any more, and neither is Matt. The events before my operation were extremely hurtful especially as we felt unable to express our side of the story due to pulled posts etc. I don't want to be be exposed to the toxins there right now. Many many of you have been wonderful and supportive and I thank you, but I was shocked at being accused of being attention seeeking and everything else that I had dished out at me. I was also shocked at the rather obvious lack of support from some in the community. I know that things like that are trivial in the bigger picture but for me the Fool has been a big part of my life (after all I wouldn't have met Matt or made some fantastic friends otherwise) and I felt very let down. It's time for me to focus on the people that genuinely care about me and I'll keep in touch with y'all off board. Hugs Z xxxx

Thursday, November 24, 2005

So I'm home and shouldn't really be posting, but thought I'd say thanks for all your messages and love and good vibes. I feel like a portion of cod - battered. But on the whole I'm pretty good. Being in hospital reminded me that however bad it is there's always someone worse off than you - I'll tell some stories when more up to it.

But I have to say, being at home is wonderful - my own bed and smells and the right amount of quiet. Am going to end up being one of those old ladies (all being well) that refuses to go to hospital.

And I really do have wonderful friends. And I really really did marry a wonderful man. I knew I had good taste, but who was to know just how much I'd need him so soon?

Lots of love

Z xxx
In case you’re wondering how she’s doing, you might like to know she’s home tonight. The doctors are amazed at her rapid recovery, so much so that they’ve let her out sooner than anyone thought possible.

Yesterday was not such a great day - I think the events of the past few days finally caught up - but as I write, she’s tucked up in bed and very glad to be home.

I’m afraid that’s just about all I can manage to post, as I’m shattered (again)... Just one final comment - you might like to know that I did find the English ‘Marie Claire’ and took it in to her yesterday!