Friday, December 29, 2006
Back to the retreat where was a pretty set programme - you are examined by the ayurvedic doctor who looks at your tongue and asks about your symptoms and assesses your body type. Ayurveda is based on three body types - kapha, pitta, and vata.
I'm Kapha Vata - this is worked out by your physical make up, but also personality takes a big part of it. I have a kapha inbalance which meant that I'd put on weight and was lethergic and also had mucus overproduction - this was all spot on in terms of symptoms I was having and how I was feeling. Because of my cancer treatment I was not treated in the way they would normally treat this - instead I was under orders of no weight loss, gentle yoga and lots of relaxing treatments.
It is a very complex philosophy ayurvedic doctors train as long as western doctors and often in India combine the training - they are also not dismissive of western medicine, so they don't treat cancer for example but instead try and prevent it or rebalance the body after conventional treatment. We were never told what was in the medicines exactly - just that they were a mixture of herbs specifically formulated for each person. They all had varying degrees of yukkiness, from ick, to omigodthatwasdisgusting!
The yoga was wonderful - mainly astanga, but different to what you get here - much more spiritual (hindu) with lots of prayers in sanskrit. (Left, our wonderful yoga teacher Ganesh with Jayne).
After that we had monkey feeding (see below right!) and breakfast and then the day proper started - we had our treatments. The first couple of days were massage which is done with lots of oil and two therapists (all of the treatments are). Then for
After treatment we rested and then had lunch. The afternoon was more resting (some of the treatments were quite exhasting in a way and after dhara you're not supposed to be stimualted), or yoga or trips to town etc. At 5.30 we had an hour of mediation.
We found that there was a lot of time for thought and reflection and in fact this was very useful to me - meeting so many wonderful people (more of them later!) in such an intense environment (intense in a good way) meant that we could share stories. In that time I realised that I am not coping with work and the negatitivity from some aspects of it. I love the company but not the job and it's not what I want to do. It's a bit of cliche, having a moment of clarity in India, but I think that it's a place that makes you realise what choices we have. And that karma does exist and it does happen. This out of focus dahlia is what I was looking at when I had my moment!
Wishing everyone a very happy and healthy New Year.
Saturday, December 02, 2006
The retreat is around 2000m in the Nilgris (Blue Mountains). Small round cottages are tucked into the side of the hill surrounded by tea plants.
The weather constantly changes - clouts roll past, either engulfing us in damp air or rain or revealing blue skies and hot strong sunshine. It was hard to know what to wear - you were either too hot or too cold!
Our room (the bottom left in the picture) had a view across to the south east and over the valley - as well as to the yoga hall. This was useful as we could see when people were walking up and so we could make a dash and get a good spot before class.
Picture 2. Our cottage
In the mornings we welcomed the day at 6.30 with yoga. This was preceeded by the medicine man who delivered foul tasting potions with a winning smile. Yoga was a magincal experience - doing sun salutations and then sitting palms up as the sun floods into the room and into your hands. Even the torturous poses that we did did not seem that bad and we took it all with good humour and the occasional giggle as we were told to "inhayeeee" and "exhayeee" or to do the "gangeroo pose" and to "feel the benefit".
Picture 3. Medicine Man
Sunday, November 26, 2006
So I'll write bits and pieces when I can about my experiences. There's much to say so bear with me. Now, are you sitting comfortably? Then I'll begin.
Our journey was eventful to say the least. From the stresses of getting to Heathrow in rush hour on a Friday night to a check-in with a broken luggage belt, to security checks, to getting lost in Terminal 3 (don't ask) and having to go through security again to only just making the plane, whish was delayed any way... then being late to land in Mumbai and missing our connecting flight!! A very quick lesson in learning to go with the flow - essential practice in India!!!
Eventually a new flight booked and a madcap taxi ride through Mumbai to a part of town called Colaba, where we went to a hotel that J&J had sated in before - clean, basic and cool. And very very welcome.
Mumbai is a fear of sound and colour, almost too much to focus on. The traffic is fast and furious, there seem to be few rules excpet to stick to the left. Otherwise it's point and go. And hoot. A lot.
Every surface is covered with posters and flowers. Buildings crumble behind. There are people everywhere - drinking tea, selling fruit or shirts, or souvenirs, or tailoring on the street with old sewing machines, and of course begging.
"Please mama, bebe, mumma, eat mumma" It's relentless. There is evidence of ppverty everywhere. There's no disabled rights or benefits or care for the elderly on the streets. As the middle classes grow more powerful so does the divide between them and the poor. This is not a shock to me, as I have similar images imprinted on my brain from our time in Brazil, but nevertheless it's a reminder of how much we have in the west.
We ventured out, seeing the Taj at dusk and even more people gathering around it - peple selling balloons. kulfi, anything and everything.
Walking past shops is a bit like being in Brick Lane - every trader wants you to come and look - it's easier to say "later" than no, upon which you're handed a business card.
That evening we went to Indigo which is a popular and trendy Bombay restaurant - not traditional Indian but western (French/Italian) dishes with Indian spice. A risotto to die for.
The next day our travels resumed and this time our flight was undramatic. We arrived in Combiatore where we were met by Krishna the driver and fellow guest Anisa. It was a two hour journey where we saw another side of India - lush green plantations interspersed with colourful villages, which unlike here are not sleepy hideyholes but vibrant busy places.
More Indian driving - lots of honking and overtaking and weaving around people. goats, donkeys, chickens, dogs and the ubiquitous sacred cow.
We stopped for coconut water drunk from the shell and then this was broken and the tender flesh eaten. As we drove we shared stories of family and looked at pictures. As it grew darker we climbed higher into the mountains and the road became more and more bumpy.
More dodging of people and animals and other vehicles, waterfalls cascading down the side of the hills. Eventually it was dark and you could hear the water and soon we had arrived at the retreat.
Wednesday, October 25, 2006
Emma followed five minutes later and they both did so well given the weather was so awful. It was a torrential downpour for the entire duration of the race. Despite that the support team kept it's spirits up, assisted by the obligitary bacon sandwich.
Thanks for all the sponsorship - it means a lot!
Tuesday, October 03, 2006
I also had my 6 month check up which was good - again no sign of a recurrance. It's funny though because those checkups sort of remind me that there COULD be a recurrance so it's a bitter sweet time. Oh for the day that I'm told I'm in remission!
I have also changed my HRT. Menopause is not easy for me - actually I'm having a rubbish time. My HRT caused massive weight gain and also problems with my joints - so I'm a bit like a little old lady with a type of arthritis in my hands and feet. Not to mention the mood swings. Have been on this new HRT for a few weeks now so hopefully it will kick in.
In November Jayne and I are going to India to a retreat (aka yoga boot camp) which looks wonderful but hard work! I am very excited as it's my first trip to India and well be at the retreat for 2 weeks and then a couple of days in Bombay. It will be good to spend time with Jayne and see India with her, although I think we both will welcome the meditation at times!! ;o)
My lovely husband made the mistake of mentioning how he was inspired by Natalia's marathon and so was challenged to do the Great South Run. He's doing 10 miles raising money for the Royal Marsden. His sister Emma is also running, as are Chris and HIS sister Vicky, so there's quite a bit of competitive spirit! So please sponsor him as we're both so grateful for the wonderful treatment that the Marsden has given me. It will help him see that all the hard work and early mornings were worth it!!
Friday, August 18, 2006
NO EVIDENCE OF DISEASE
PS have made an appointment to see nice gynae consultant about my HRT at the end of the month. Mood is also helped by therapist. Shrinkage is good
Thursday, August 03, 2006
We've been dealing with being back at work and unusually hot weather for the UK in July. Now I know it's not hot in Aussie terms, but London is horrid when the temperatures reach over 30 degrees - no air con and high humidity and everything gets stinky. No one can sleep and everyone is grumpy.
Now add the the mix that I work for one of the world's top sandal manufacturers and you can get a picture of my world right now. It's very hard not to want to tell some of our customers to get a grip, that the world is not going to cave in because we don't have the shoes they want in stock and YES our delivery is one to two weeks because that's as fast as we can go right now. And actually I don't care that much, because really if that's their only issue in life, then life's not too bad. But of course I don't say anything. But just for the record, if you demand compensation because your sandals don't arrive in time for your holiday, you won't get any.
Despite various medications including HRT, menopause is hitting me like a train. Girls, it's like PMT but worse. Don't even think about not having drugs! I can cope with home and stuff but other things not so much. I'm not convinced that the HRT I'm dealing with is working for me so I've arranged to see the gynae that we saw about the fertility things as she offered to help. That's not until the end of the month so in the meantime I'm deep breathing and trying not to kill anyone.
Talking of which, it's been hard to keep things together as everytime we're out at any kind of function we get asked if we're planning a family. A note to people; DO NOT ask this of anyone, especially ones that you've only just met. Because it's a) rude b) people's own business and c) you might not get the answer you want. It bothered me when I was fertile and it sure as hell bothers me now. I can just about cope with my friends having babies and stuff (I'm a bit sensitive but can deal with it and am happy for them), but I will answer that no, we can't have children, and I will say why. If people are embarassed, well tough. Telling someone that you have just had cervical cancer may not be deemed proper in polite society, but nor is asking intrusive questions about one's sex life and other personal issues.
Anyway, I'm plowing through books about coping strategies and diet and stuff and I'm sure slowly I'll feel human again. I still have tummy issues so I can't eat some of the things they suggest which is slightly irritating.
On a positive note, I've had some cycling lessons - I think before that I only rode a bike once when I was about 15, but we didn't have a park that would allow bikes when I was growing up. Any way, I can now ride a bike, not on the roads yet, but still. I was very proud that I fell off and got back on again, Even if Matt did say that my leg looked like a piece of stilton due to the bruising. And am having more lessons which is good and we bought me a nice silver bike with a proper wicker basket on. So hopefully soon I'll be riding properly around Kingston! My aim is to do the London to Brighton next year, which will coincide with my, erhem, 40th birthday.
I finished my course with flying colours which has been great and I really enjoyed it. Not entirely sure where it will lead me, but its been great for my confidence.
So I do wonder sometimes when I'll start to feel vaguely human again. It's been a very wobbly time what with one thing or another, but I somehow manage to pick myself up and keep going. And sorry it this post sounds like a bit of a rant. I blame some of it on hormones, but a lot on the fact that some people are just a bit rude and insensitive at times, even if they don't mean it.
Saturday, July 01, 2006
We had a tiny man made private beach that we had to walk down about 5 flights of very steep stairs to get to, and we had to walk up the same to get the the main road, which is the only road that takes you along the Amlfi coast so it's madness - scooters, buses, cars, pedestrians are all using the road, all apart from the pedestrians are at break neck speed around many hair pin bends. There was a lot of bus action and a lot of bus on bus action which always involved lots of horns and backing up and so on.
The nearest town was Minori - one of the least touristy towns on the coast and gorgeous. It still had holiday makers, but it's full of local charm and was relatively inexpensive. We spent a lot of time there and became tempoary locals, hanging out at the bars in the square, or eating gelati, or at a couple of great restuarants. The first week, for the most part Matt and I relaxed and slept and ate and walked and sunbathed.
One day we decided to walk to Ravello which is a steep up hill stair climb (about 1 mile) it was a beautiful walk past terraced fams of peaches and lemons. We saw mules bringing the lemons down and picked up ones that had been dropped. By the time we got to Ravello the weather had changed and there was a torrential downpour and we had to shelter in a shop. We did get back there another time and it really is a pretty town - amazing views. After the walk up there we had sore legs for days!
Matt's parents arrived on the Friday in time for the World Cup to start so there was more hanging out watching the footie. but as they brought a car we were able to travel around a bit more. My birthday was spent in Pompeii. Most of the artifacts are in museums but it's still worth a visit - we enjoyed it very much - it's big though and there's still a lot to see. We avoided Naples and the museums this trip.
We also visited Capri, and took a ferry there and back- very beautiful with some stunning walks. Also incredibly expensive. Mind shatteringly so. I bought a pretty handbag which wasn't too extortionate, but some of the designer stuff was ridiculous.Amalfi is also a pretty town but packed with tourists and not as friendly as some of the other places we visited. Found a wonderful handbag shop and another leather shop so it was worth visiting for those reasons!All in all we loved the area, and will probably go back.
Because we were staying in a villa we had the freedom to eat out or in - when we ate in we bought wonderful fruit (peaches etc) and tomatoes (the best I've eaten) and proscuitto and bread or made very simple pasta. For breakfast we had cereal (the locals thought we were made because italians don't really eat cereal for breakfast much) or went into town and had cornettos (croissants) that had surprise fillings, such as chocolate, marmalade or apricot jam. And we ate many multi course meals - lots of seafood - for much much less than you'd pay in London.
Being in Italy for the world cup was great fun - the local bars moved the TVs outside so we could watch the various games and there was a party atmosphere when Italy played. On our last night it was the Italy - US game and we were in the back with the locals - there was an audible sigh of relief when we cheered for Italy - they'd been giving us funny looks because they assumed we were supporting the US! And as our friendly waiter said "Theese country ees crazy".
I loved the Italians and the sense of community and the food was fantastic.
When I got back I had my first 3 month check up. So far so good. Next one is in September. Now we can enjoy the summer!
Saturday, June 03, 2006
Friday, June 02, 2006
If you are interested there is more information on the Women's Hour webpage and they will also podcast it later today.
Friday, May 26, 2006
I'm feeling grumpy at the moment - work has been very stressful and while my team is doing well and I'm being productive, there are issues that I have no control over and it's causing ructions. And shouting. I've never been a fan of shouting at work, although have had several jobs where it was quite normal, but these days I can't cope with it. As a result it's been playing on my mind when I should be resting. Matt is on the verge of banning me from going in.
On top of that I'm frustrated with my lack of fitness. I "persuaded" Matt to do the Great South Run in October and although I'm not going to do it, I thought I could start training with him as I feel fat and lumpy at the moment. It's not going well - apart from the constant pains I get (symptoms post radiotherapy and/or menopause) I also get random bouts of diarrhea, which is a little limiting. I'm going to keep trying though, as well as doing pilates at home (Darcy Bussell has a really good DVD out which included lovely stretches).
Part of the problem is that I feel that some people at work (not my bosses thankfully) seem to think that I should be better now that my treatment is over. And it's not as easy as that. It's very depressing.
On a more positive note I'm doing this Women in Governance course (WinG) which I do on my day off on Thursdays. It's not too tiring and actually good because I get to use my brain and exercise the neurons. I'm also meeting some lovely women from Kingston and Richmond with diverse backgrounds and experiences. And the assignments are interesting too. My tutor has told me that Primary Health Care Trusts are keen to get women with my work and health experiences onto boards so it might lead to something interesting and worthwhile.
But it's a type of therapy, in that it's helping me feel better about myself. And I'll take any help I can get at the moment. I see my therapist this afternoon and am looking forward to a long weekend with Matt, and of course the holiday. And I'm enjoying the bits of sun in between the torrential rain that allow me to potter in the garden. It's looking lovely - there are little baby apples on the crab apple tree, and roses blooming, and strawberries and blueberries starting. And Matt's tomato plants are being kept company by aubergine, pepper and chili plants, and I planted beans yesterday. Let's hope the presence of the ginger Kray cats keeps the birds off. Next year I'm going to try potatoes in bags!
And if you think that I've turned into a mad hippy (or more of one than before), I'm feeling inadquate after dinner with Fran and other old friends and discovering that we were the only couple that DIDN'T have an allotment. We're all turning into Tom and Barbara's! We've even ordered a water butt. I'll be voting Green next. ;o)
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!
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!).
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.
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.
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!!
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.
* 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.
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.
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.