Sunday, May 07, 2006
So please Tell Someone. We need to be educated more about the point of pap smears to protect other women from the experience that I'm dealing with. The irritating thing is that men carry HPV but they can't be tested for it!
Wednesday, May 03, 2006
I had a check up and so far so good which is a postive thing. I have to go back in June. Of course, because it was my margins that were not clear enough it's hard for them to measure, but they seemed pleased with me and I came out armed with HRT and instructions on how to deal with things post radiotherapy (bleurgh).
I'm very tired today - a bit of sunshine and people start buying sandals so it was a very full on at work this morning. But I'm also slowly trying to exercise as am feeling blobbish and have not been able to do much do to treatment (one forgets how much the pelvic area is used and effected by things). So am doing short bursts on the water rower in an attempt to do get fitter again.
We're both looking forward to our holiday in Italy, even though it's going to cost a LOT in insurance (yes, even Europe) and forget North America, it's almost impossible to get insurance for there if you have or have had cancer, which is depressing. As I'm hoping to do a trek to raise money for the Marsden next year, I hope that it is not too prohibitive - the one I'm keen on doing is to China!
Wil post again sooner next time!
Z xxx
Saturday, April 08, 2006
We went to Kew with Col on Thursday - a beautiful sunny day - and we walked a lot, more than I have in a long time, and looked at the plants. The magnolias were out, looking resplendent and rather symbolic.
I'm still having up and downs. I find myself getting tired a lot still and have at least one day a week when something triggers a dodgy tummy and vomiting, oh joy. I need to learn not to try and run before I can walk.
Looking forward to Easter and the cast of thousands as we head to Oxfordshire and a family get together. I hear that an easter egg hunt is planned for the "children" (the youngest being Tam and 20!).
Z x
Wednesday, March 29, 2006
At the Marsden you come across so many people that are sick and the irony is that for the most part everyone felt fine before they were diagnosed - there are not many other diseases that the treatment makes you feel WORSE than you did when you started! But it's good to be coming through it now. In a month I have a check up.
Some nice things happened this week too. Col is here, which is great. We've booked a holiday. And I went to a thing called Look Good Feel Good, which is for cancer patients and is basically a girlie afternoon playing with makeup. It was lots of fun and it was nice to meet other women with other cancers who are all battling this disease with, for the most part, great attitude and grace. I saw my treatment as a job (admittedly a not very nice one!) that had to be done as did many of the ladies I spoke to yesterday and I really think that helped me get through it. And those Aussie battler genes!
The other thing that happened was that I got a message from one of the forums I post on from a girl who has just been diagnosed with cervical cancer. I won't say any more to protect her privacy, except that she had read this blog from start to finish and had found it very helpful. That completely validated my reasons for writing here. Apart from keeping in touch with my friends and family, I hoped it would help someone. And it has, and that is something that I can take from all of this. It was upsetting when I was accused of being attention seeking when I decided to be up front with it all. That was never my intention (believe me, this is attention that I'd never normally choose to have!), and to have someone say that I've helped them made my day!
I'm also reading Pollyanna again, it makes me smile. For those of you who have never read it. it's about a little girl and a game that her father teaches her which is the "glad game". It's about finding something to be glad about whatever the situation.
I'm not so good at the glad game I'll admit, but I do find that being positive helps. Of the people I've met at the Marsden, those that get on with it and battle through the bad times with humour and grace seem to do better than those who are angry and bitter and complain. That's not to say that there aren't bad days or days that you want to whinge a bit, or days that it's hard to get out of bed, or are in pain, or generally a little pissed off; but life's too short to be angry or rude or nasty all the time. And I certainly believe that "you reap what you sow" to quote Lou Reed (and our wedding dance!).
I feel sorry for those people that can't see that the reason people at the hospital know me by name is that I make an effort to smile and say hello and have a chat with people. Last week I met a woman who said that breast cancer has ruined her life. That was so sad to me, as cancer has changed things in many ways, but I'm still me and it certainly hasn't ruined my life. I'm not glad that I have cancer, but it really has made me appreciate what I have, especially in terms of love and friendship.
Wednesday, March 22, 2006
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
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
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
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

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
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
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
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
Wednesday, January 18, 2006
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
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 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
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