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!

Tuesday, November 22, 2005

“Could you pick me up a ‘Marie Claire’ on your way?” was the last thing Zoë said to me when I telephoned her from work this afternoon.

I was back in the office today, or as I prefer to see it; making an extended visit on my way in to see Zoë (in order that we can pay the bills).

I’ve seen enough copies of Marie Claire scattered around the house to know pretty well what they look like; however, I couldn’t see a copy anywhere in the newsagents along with the usual women’s magazines. No problem though - I spotted a copy a little further to the right and purchased it.

Once again Zoë looked much better than yesterday, indeed the number of tubes, machines and attached devices are now at an absolute minimum... Believe me, when I first saw her come out of surgery she had just about everything going - but I spared you the details, as I didn’t want to worry anyone unnecessarily.

Shortly after passing the Marie Claire to her, Zoë had a quick thumb through it then started to laugh. I wasn’t too sure what was so funny, but it amused her immensely... Then it dawned on me - I’d purchased the French edition!

It was great to see her laughing though - perhaps I’ll pick up an English-French dictionary on my way in tomorrow.

Sunday, November 20, 2005

Just a quick post to let you all know that the Zoë we saw at the hospital today was looking a whole lot better the one we saw yesterday.

There’s certainly a marked improvement in the 24 hours or so since surgery, and by all accounts the doctors are very pleased with her progress.

More good news then - here’s hoping that trend continues.


Goodnight all!

Saturday, November 19, 2005

Talk about a long day! I thought it would never end...

I was in the Marsden shortly after 7am this morning, to be sure I got there in time to meet with the surgeon, and more importantly see Zoë before the surgery.

I’ll spare you the details, because I know you’ll only really interested in one thing, and the good news is that Zoë’s doing fine.

She went down to surgery around 8:45am and came back around 3:45pm (yes, that’s 7 hours pacing - although I freely admit I sat for most of it), and thankfully everything went relatively to plan. ‘Plan A’ that is.

Even better news was that the lymph nodes were clear (actually they had to be for them to go ahead with ‘Plan A’), but that in itself was a great relief - especially as there was one very suspicious looking node showing up on the scans.

When I left tonight Zoë could probably best be described as ‘groggy’ and not especially comfortable, but even in the few hours I spent with her post-op, she was improving noticeably.

All in all then, it’s very good news, but there’s now a bit of a wait for the biopsy results that follow the surgery, and Zoë’s an awful long way from being up and about.


There's a long way to go then, but the news so far is good!

As I said, it was a long day, so excuse the brevity of my post - but I’m shattered.

Thursday, November 17, 2005

Another weird week, which included me being accused of being attention seeking. For the record there are other ways of getting attention and I would not wish this on anyone. And certainly could do without the attention. I could also do without toxic people but I guess that it's hard to avoid in life.

Yesterday had the trial MRI - involved a probe in my unspeakables (sorry as open as I am I can't bring myself to be that open on the internet!) which took close up pictures of the tumour which means they can properly get the size. Yhe trial bit was a measurement of the chemical make up - they get a line reading through the scanner apparently. Somehow managed to fall asleep - partly because I've been so exhausted and stressed. They were lovely people and so I did feel at ease although it wasn't the most comfortable thing I've had.

Anyway. I'm off to the hospital today and op tommorrow. Matt will post here when he can. Am feeling rather wobbly about it all - partly because of the surgery and partly because I'm not sure what will happen. It's very hard to prepare for an outcome when you don't know what it will be.

Thanks again for all the lovely comments - they really do help. It's nice to feel so loved.

Hugs

Z xxx

Tuesday, November 15, 2005

Not much to add because we're back waiting again - the clock's ticking until my op.

But I wanted to thank some wonderful women for their support - from books and dvds to afternoon tea amd MORE chocolate. I also want to thank Sarah and the Hens for such a fab night on saturday night and making me feel so welcome. It was such a good feeling to let my hair down and get dressed up and have a laugh. And laugh we did.

I've included a couple of pictures from that night, including a great one that Sarah took of me with short(er) hair. And yes I am wearing a paper hat from a cracker - Christmas is coming!+

Monday, November 14, 2005


Me with short hair!

The Bride

The Hens

Thursday, November 10, 2005

This entry was written before I realized Zoë had already posted today, so there’s quite a lot of repetition in here. Funny though how she can sum it all up in a few short paragraphs, when I seem to go on... And I’m supposed to be the quiet one!

As ardent followers of the blog will know, yesterday we were back in hospital for more tests, and a meeting with the surgeon himself - Mr Ind. (Yes that should be ‘Mister’ and not ‘Doctor’ apparently it distinguishes the surgeons from the doctors.)

We began with an early morning trip to the Royal Brompton hospital where Zoë had to visit the Nuclear Medicine department for an injection of a ‘glow-in-the-dark’ substance that would be used for her bone scan later that day.

Despite this appearing to be a relatively busy department, we were in and out of there in a relatively short space of time, and then off to the Royal Marsden.

Thankfully the Royals (i.e. Brompton and Marsden) are just around the corner from each other, so it was no more than a 10 minute walk between the two. Good news when you consider the relatively tight schedule we were on!

Back in outpatients at the Marsden, after a few minutes waiting, we were ushered into a small room and told Mr Ind would be along to see us shortly. This, now familiar routine (waiting to see someone), is always a little unnerving as you sit there in the clinical surroundings.


Each time it seems to take a little longer for me to come up with some humorous comment about either some strange looking apparatus; the nurse (who yesterday was determined to dissuade us from having a flu-jab, on the basis it all but gave her flu last year); or anything else that springs to mind.

Personally I think I may have peaked when on the last occasion I suggested the device mounted in the room was in fact a periscope used to seek out and destroy Traffic Wardens in the area - but however stupid the suggestion, it matters not what is said if it raises a smile on Zoë’s face.

Mr Ind came in and told us again about the plans for next week's surgery. This was basically a recap of the news we’d been told last week by other members of his team, but this time from the man himself. Despite the repetition, it was good to hear again, as we’re bombarded by so much information every time we visit that it sometimes takes a while to sink in.

The only downside to us seemed that he was a little more sceptical about the likely success of the particular surgery - but in a strange way it’s actually reassuring that he’s open about all possibilities rather than raising expectations too high. At least we’re aware that there’s always a chance ‘Plan B’ will come into play.

After this it was down to the basement to Day Surgery where Zoë had her pre-op examinations. All fairly standard stuff really - height, weight, pulse and blood pressure and then a chat with another doctor.

Next we were off for another x-ray and then there was just enough time for a quick bite to eat in the canteen before heading back to the Brompton where the David Bailey of the Nuclear Medicine team was awaiting Zoë for her close-up.

A busy day then, but we got a lot done in a relatively short space of time. Mr Ind has requested one final test before the surgery; some sort of new MRI scan which she’ll be undertaking as part of a clinical trial. We’ve no problem with that though - the more information the surgeon has the better, it can only be a good thing!
I forgot to mention that in a rather random moment last week I saw the queen. Was just wondering into Kingston minding my own business when I was diverted by police to the other side of the road and suddenly there she was looking like a rather elegant Ribena berry.

Matt and I are still suffering from this cold and so it was rather miserable to have to head up to the hospital for MORE tests. We had to go to the Brompton for my injection and then to the Marsden and then back to the Brompton for my scan.

Saw my surgeon - he's more pessimistic than the other doctor last week as my tumour is quite big but he's keeping an open mind, just preparing us for the worst I think. Have to have ANOTHER scan next week in Sutton - it's part of a trial so not only will it help me, but also hopefully help other people - animal testing, but I'm the animal!

Then I had to be checked over in readiness for my op - not easy with this stinking cold and other things, which made my blood pressure drop to something so low that the nurse commented on it (90 something over 80 something I think).

So we got home absolutely shattered. But something that we have both commented on is how nice it is to have these outings. I have decided that all my singleton friends should consider their future partners with the hospital test. If you know that he/she will come with you and sit quietly and hold your hand and not worry if you don't want to talk for hours on end, or will make you laugh when you need it then they are the one. If you can't see that happening. Forget it. Harsh but fair.

You probably don't know this, but when I'm writing these posts I generally have at least one cat in the room. Either just being a cat somewhere, or on my lap, or standing on the desk, or on the keyboard. They are being very cute and protective of me at the moment.

So I've added some random cuteness because everyone needs to look at kittens once in a while (except Col, who can keep his thoughts to himself!!). These are Blue and Berry before we adopted them. I'll post some current ones at another time!

Wednesday, November 09, 2005


Berry posing as ever