Had a long and stressful day at the chemo unit yesterday. It was just one of those days that I sem to be excelling at - I really don't make this up - I have witnesses!!
I did as I was told and put my name down for the chief oncologist - his secretary scared me so thought I'd better do as she said as I need her on my side to do the referral!!!
I had a 1030am appointment - never a good slot anyway. I waited over 3 hours only to find the oncologist had gone off to the next clinic and I was next to be seen. I was so upset and the poor research nurse who had put my name down felt awful too as she hadn't realised he would be leaving clinic early. Anyway, I went to see the other oncologist - I like them all so I don't mind who I see - it seesm it's the secretary that does!!! He told me my CT scans were really good as my liver lumo had gone down from 3.3cm to 1.8 cm which is brilliant and the lymph nodes under my right arm were now normal size. The Ct didn't see any changes in my chest so i don't understand why I'm so wheeezy. The ventolin does help and the becotide so he suggested having some antihistamine as well. My bone scan was difficult for them to read as most of the radioactivity was still in my lump in my arm where the nurse had injected it instead of my blood stream!!! It looked as if the areas in my hip and spine are about the same but it talked about the one in my rib had got bigger. Excuse me but I didn't even know there was one there - it doesn't hurt me. I said I wanted them to be honest with me but keep feeling they are hiding things. He thought it was because some people get so upset if they get told something which in the grand scheme of things isn't as important as other bits, that they may not tell you some things. I said I wasn't happy with that so he printed off my bone and CT scan so now can read it but of course don't understand some of the medical terms - mainly physiological bits. I will have to ask someone to explain some of the terminology to me. From what I understand there is another area in my sternum - chest bone which is suspicious so presumably that's why i had that chest pain a few weeks ago and I have some radiotherapy damage as well.
Next step is to send my reports on a CD Rom to the marsden to get their opinion about starting tykerb as I have 'failed' on the bone strengthener as the rib one has grown so need to come out of that trial anyway. For some reason, the letter from the marsden was not in my notes so it was a good job I had a copy of that letter with me!! Apparently, my hospital don't like to send patients letters as it frightens them. For me, it is the unknowns which scare me more than the knowns - feel I should post a link to Donald Rumsfield classic speech about the knowns and unknowns when he was talking about terrorism!!!!
In the middle of my consultation, the fire alarm went off and it was continuous so it mean we all had to evacuate from the waiting room and the treatment room. The consultant was determined to carry on with his work with me as we couldn't smell anything and as I had had such a long wait!! That was good of him and he was anxiously ordering my IV infusions as we were being told to leave!!!
It was total chaos as nobody seemed to know where the fire exits were - they were signed but apparently we weren't supposed to go out that way as it meant going through casualty so everybody was herded off to the central corridor where all the lifts were. It was awful especially for the poor women who had the cold cap as we were all standing in the way of the lifts and these poor women were so upset as it meant the cold unit had been unplugged and so there was a risk that it wouldn't work properly and they may lose their hair. Apparently, they will 're-evaluate their fire procedures' - I can feel a letter coming on!!!!
When it was all clear and we could go back in, the onc told me the secretary was all set to send everything off, and he would dictate the letter yesterday afternoon. Let's see what happens shall we!!!
It was a long and frustrating day - made worse in the evening by poor Laura being unable to sleep and getting upset that I will die soon. I told her what she already knew ie that my cancer has spread and that's why I'm having chemo. She seems to be losing a lot of hair as well at the moment so she's upset about that.
Off to the doctor about my wheeze which of course is nowhere as bad now I'm home and sitting still and collect Laura to take her to the doctor as well.

In case anybody reading this knows of someone who wants tykerb now or thinks they might in the future or who has already had it, the documentary maker man (Adam Wishart) would like to hear from you.
This is part of his email to me with his email address so please don't be afraid and contact him if you can help in this valuable documentary. You don't need to be filmed!!! Thanks. Kate

adam@liketv.com


tx1.jpg (0.05 MB), tx1.jpg (0.06 MB), pastedGraphic.tiff (0.11 MB)
You mentioned that you had met, either in real life or online, a number of other patients who had metastatic breast cancer, and would want Tycerb - were their disease to be progressing. I'd be really interested to meet them. To reiterate, I'm making a documentary about Tycerb and the process by which is comes onto the market, and its regulatory progress at NICE. I hope to tell the inside story about the decision making process in the NHS, about who gets the drugs and why. As a major part of that I want to tell the stories of those people that are affected by these processes. So I'm interested in talking to anyone who has the drug on their radar, and might want it on the future. In case you are just going to forward this email, I'll also repeat my background, which is an award-winning documentary maker and author. As you know, I wrote a book called ONE IN THREE: a son's journey into the history and science of cancer which was shortlisted for the Royal Society Book Award for General Science book. And last year I made a documentary about animal rights and experimentation in Oxford for the BBC. The Observer described it as 'outstanding'. There are reviews of both below. Thanks so much in advance with putting me in touch with these women. Best wishes Adam Wishart 07968 837 955 Monkeys, Rats and Me: animal testing BBC2, 9pm, Monday, 27th November. Feature length documentary about the battle for the Oxford Animal Lab. Previews: "[an] outstanding documentary... a fine piece of TV." The Observer. "Riveting and revealing" The Sunday Times. "Excellent documentary... Thoughtful television." The Guardian "An intelligent and thought-provoking film." The Daily Telegraph And in the News: What Felix the Monkey Taught Me About Animal Research, Mail on Sunday Review http://www.mailonsunday.co.uk/pages/live/articles/news/news.html? in_article_id=418619&in_page_id=1770 Father of Animal Activism Backs Monkey Testing, Sunday Times http://www.timesonline.co.uk/article/0,,2087-2471990.html Animal Guru Gives Tests His Blessing, The Observer http://observer.guardian.co.uk/uk_news/story/0,,1957373,00.html Peter Singer: Monkey Business, The Independent http://news.independent.co.uk/people/profiles/article2035119.ece Reviews: "An outstanding documentary... the many triumphs of Adam Wishart's film" Lucy Mangan, in The Guardian. http://www.guardian.co.uk/tv_and_radio/story/0,,1958573,00.html "Wishart brilliantly caught the essence of his “characters" Tim Teeman, The Times. http://entertainment.timesonline.co.uk/article/0,,14934-2474324,00.html Monkeys, Rats and Me was a neat piece of work, The Telegraph 'This was a fine and sensitive look at some unpleasant and sad people.' AA Gill, The Sunday Times

I was very surprised and very touched that someone that I don't even know is happy to do something like 'The Race for Life' in my name. I am really grateful and glad that you read my blog. Thank you HH

After all my tears of frustration the previous night, I went into work and one of my friends spent ages phoning around to see how quick a private CT scan would be and how much it would cost. I also made an appointment to see the GP for later that morning so was going to leave work early. I was looking at my emails when I came across one from the occupational health nurse manage who said if she could help in any way then she was happy to do it. I emialed her and she phoned me back to get all the rest of the details and I set off to the GPs. I was sitting there having a sympathetic but not quite helpful discussion about the lack of urgency in scanning me when my phone kept ringing. I turned it off and as I was in pharmacy I listened to the message and found out that the nurse manager had managed to get me a bone scan the next day and a Ct scan on friday. I was so relieved!!
I went out again wednesday evening with another young woman who had breat cancer about 5 months after I was diagnosed. We set up the after school club together. We had a lovely time but I will be so relieved when smoking is banned in pubs!!! So yet another late night!!!
The bone scan appointment was at 11am. The nurse saw me early and put a butterfly cannula into my arm as she was flushing it I said it hurt and as she put in the radioactive stuff it really hurt and I told her this very strongly but she wouldn't listen. When she tried to flush it, no joy apart from more pain for me. She then sytarted to rub my vein vigorously to get the radioactive stuff into my blood stream and of course that hurt even more. I was very upset but went down to the tursday clininc and met one of my ex-workmates and we sat in the sunshine having our lunch. I went back after 2 hours as is the usual procedure and waited and waited. Eventually I was told that the delay was due to the cock up when the radioactive dye went in. Would have liked someone to have told me that at the time. I then had the most bizarre bone scan ever. It was aon an old machine and I had to adopt different positions so they could scan different bones eg one arm at a time, the front of my head and then the back of my head. I had to stand for 35 minutes and so was exhausted.
I got home and my nursing friend had come down to see me - luckily she had bought some cakes with her as I really needed cheering up -so thanks for that thought and the flowers!! We had an indian takeaway so that was easy!!
Friday - I could feel myself getting all panicky about having another cannula put in as my arm was still sore. I went in via the chemo ward and the senior nurse told me to come in at 10am and she would get one of the other really experienced nurses to put in the cannula. The Ct department wweren't impressed but gave me the right cannula. The nurse in chemo got it in with no problems at all. I then met with the HCA's whose english was not their first language. I could not understand him and he kept calling me Mrs Katrin. I explained that was my first name and that I was mrs X but he still insisted on calling me mrs Katrin. He asked me if I had a high fever but then realised he meant hay fever!!! I was even more scared by this point. However, the CT lady then came in and she was someone I had met before and I explained what had happened yesterday and about the marsden cockup. She was lovely and came into the room when the dye went in just to make sure there was no problems so I really appreciated that. She then said that if I needed the scan results for my next appointment at the marsden then she could print them off for me. Isn't it wonderful when you meet really helpful people - I felt so much better after that.
Saturday hubby and Woody went off to London for the day so Laura, AJ and myself went shopping to get Father's Day stuff and to buy crab lines but by the time we were having our lunch it had started to rain so we had to abandon it much to Laura's dismay. They played happily in the afternoon whilst I slept so they were very good.
Today, I felt awful when I woke up at 845 so after breakfast and Father's Day stuff I went back to bed and slept for over 3 hours. This gave me the boost I needed so went off happily to friends for food. I'm so grateful for the way so many people will look after us - it really helps.

I went to stay with a lady from one of the forums on the monday night before my appointment with the Marsden the next day. It was brilliant to meet someone who i'd been in contact with for about the last year and it was so kind and generous of her to let me stay and look after me. I really enjoyed myself - especially having the morning to myself without the usual rush of getting packed lunches ready!!
I'd been contacted by another friend off the forum who had been contacted by a documentary maker who wanted to meet women trying to get hold of tykerb. He came down to see me on tuesday morning and would you believe he was friends with the lady's daughter that I was staying with. He really wanted to film me at the marsden but they wouldn't let him. Don't know what will happen about this but it was brilliant meeting him and he has given me his book which is his tale of his father's cancer and the history of cancer treatment through the last 200 years. It is really fascinating and he has researched it all so well. I'll have to put a link in as it is a really good book. I would say he was mopre of a 'Times or Telegraph' documentary maker and not a 'News of the World' type which suits me fine!!! I'll let you know if anything happens about this.
I went to the marsden and was really impressed by how smoothly and quickly my friend's treatment was organised. I even got a free lunch - I wasn't supposed to but the poor guy giving out the sandwiches had such poor english , he coudn't understand I was really a visitor and not a patient!! Anyway, at my local hospital you don't get offered sandwiches even if you are a day patient!!
I saw the main consultant but my local hospital had really ballsed up and not sent anything relevant. My gallstones ultrasound was there from 2003 - I'd never seen that before!!! As was the original mammogram and ultrasound and xrays from 2004 when I broke my wrist and the supposedly 'clear' ct scan from may 2006. When I read that report it said I had fluid on my left lung but I was never told that so now wonder what else I've not been told. All in all, it was a complete waste of time and money as although it looks as if am eligible for tykerb, they couldn't give a definate decision as have not had recent scans. I asked how long it would be before the marsden could do the scans and he said about 2 weeks but thought it would be better to have them done locally. On to that later!!!
All in all - enjoyed my visit cos I met a very kind and generous person and saw the marsden at work and met a lovely man who is trying to highlight the problems of licensing drugs and the NICE situation but how could a hospital 'forget' to send relevant scans is way beyond my comprehension. It was only when I got home I realised that all my scans, echos and xrays are on the computer system so they could have emailed them!!!
Back to normality on wednesday, when I went on a school trip to a mosque which was fascinating. Laura wanted me to have my hair straightened for the trip so that the other children in the class wouldn't make fun but then of course, women have to wear a headscarf inside the mosque anyway so it was a bit ironic - is that the right word!!
I spoke to my oncologist's secretary who retorted that 'there were too many fingers in the pie' and I should just stick to seeing the same consultant - well I would if he was there but he wasn't!! I arranged to see him on thursday and my mum wrote a letter of complaint about the incompetency of the situation!!
Thursday dawned and my mum had to stay over to help me out as I had a 9am appointment. When I got there, on the front of my notes in the largest font imaginable was 'to be seen by Dr Bloggs at 9am'. Well that did the trick as I wasn't first there but I got seen first. He was going to arrange for my scans to be done so I went home before heading off to Gunwharf Quays to meet friends from my customs and excise days. We spent about an hour in Starbucks before going to an Italian Restaurant overlooking the Quay. We must have been there about 3 hours and the food was delicious. It was great to just have a big girly lunch and we made plans to have another meet up at a weekend for the families and camping. Think this time we will put a curfew on the men so we can have a good girly gossip without the men around!!!
Sunday, we had lunch with my sister-in-law which was lovely before heading off to the photographers for a family group photo plus dog!! This meant that there were 10 adults plus 8 grandchildren. Somehow we all fitted in!! Hubby and I got an individual photo done as we realised we never had that done at the last photo shoot. It was a bit off putting having some of our nieces and nephews staring at us!!!
Monday was the twins inset day!! I took Woody to his friends house and picked up Laura's friend. we headed off to a play area in Portsmouth and eventually so did the boys. We all ended up in Pizza Hut. The boys were not impressed at having to sit at the same table as the girls but us 2 mums wanted to sit together so we did!!!
Today, I had my heart echo which is apparently OK but I got very upset there as it is 2 weeks till my Ct scan and by then I will be on my 6th and final cycle of xeloda and wanted to be seen by the marsden by then. The lovely lady at echo phoned the secretary to see if they could move forward my Ct appointment. The secretary couldn't see the urgency so i ended up being even more upset. I really need an advocate to fight my corner cos I just don't feel strong enough emotionally or physically to fight anymore but if I don't then I will die quicker.
Went to work for a while and spent most of the time in the photocopy room copying 34 copies of my 5 ratified policies - each varying from 5 -16 pages.
Came home and my friend was here to do my ironing and generally look after me. I went to slkeep and woke up to find a lovely clean kitchen and all my ironing done - thank you so much.
Another friend cooked us dinner tonight so that was also lovely and I've been out to see my friend as I often do.
My plan is to ask one of my work colleagues to phone the secretary to fight for me and if not then one of my friends will.
I posted my frustration on the forum chat room and now some lovely lady has offered to pay for me to have a private Ct scan which I find so overwhelmingly kind and now just don't know what to do. Think a sleep may be a good idea!!
Any other ideas!!!

Just when I thought we could avoid hospitals for a week, poor AJ got hit in the eye with an open pritt stick. The school didn't tell us what had happened but had apparently looked out for us!! Considering hubby is much taller than the average mum and the AJ's teacher knows him well, it was a bit surprising that she didn't spot him!! So wednesday night, i noticed the outer of AJ's eye was all blood shot and whenI asked what had happened he said his friend had thrown the pritt stick at him but it was an accident. It looked a bit better in the morning but by thursday evening it was really hurting him. I was just deciding what to do when my hubby returned with our friend from across the road and she was so upset. Her poor cat who was totally deaf, had been hit and left in the road and hubby had found her and wrapped her up and brought her back to our garden. She was still twitching but died shortly afterwards. We were all upset our children were upset and so were her children. Poor hubby was so upset he couldn't face going to his usual morris minor pub meet so he watched Lock, Stock and 2 Smoking Barrels instead which he found hilarious and I just found very odd.
After this upset, poor AJ still couldn't settle as his eye hurt him so I tried to phone NHS Direct with no success so phoned the out of hours service instead for them to look up on the poisins directory about pritt stick. Apparently, an eye injury by Pritt stick is not listed but it does tell you what to do if you swallow it. I'm not sure why you'd ever have the urge to eat a pritt stick but still it must happen!!! At the end of my phone call, AJ had fallen asleep so in the morning I took him to eye casualty. It felt very odd saying to the receptionist you were there because of an injury by a pritt stick. We were seen very quickly and AJ was brilliant at letting the nurse use their special microscope thingy to look into his eye. She saw immediately that one of his eyelashes had turned inside his eye and was causing the irritation. So now you know Pritt stick may be quite useless at sticking lots of things but is very efficient at sticking an eyelash to your eye!! She managed to pull it out and then had to put bright orange drops into his eye to make sure his cornea wasn't damaged. This dye went everywhere and he ended up with a bright orange eye and it came out of his right nostril as well!! We went to the Friends Tea shop so I could buy him a reward but also ended up buying some doll clothes for Max -AJ's doll complete with male appendage.
We tried to wash the dye off but it wouldn't come off so he had to go back to school with an orange eye and nose!!
That night, the twins were off to District Scout camp - it was a warm evening. The next day, AJ went to the camp for the day and had a brill time and we were childless from 9am -7pm. He then looked as if he had the remains of a black eye but he was very quick to point out what had happened.
Hubby and I then went to the vauxhall garage and have decided to get a Zafira on the mobility scheme. We drove round Whitely so I could see if I could get the hang of it. I was then meant to meet a friend for coffee but got the wrong M and S coffee shop so she drove into town to see me. As hubby always says it is wrong to assume anything as it makes an 'ass out of u and me'.
I then went to see my mother-in-laws chirpodist who was really lovely but she really seemed to enjoy getting the pus out of my toes. Good to know I could give her job satisfaction then!! We spent the afternoon and evening with friends which was lovely.
Sunday - it rained and rained and rained. We ended up picking the twins up at 3pm and everything they had was wet and muddy. Yuck!!! I then I drove down to Folkestone in the evening in the rain. As I was just about to get to bed I accidently kicked the wheel of the carrybag. It hurt a lot but then I noticed it was bleeding quite a bit. Now I can't reach my toes very easily so mum just stuck a plaster over it and i went to sleep.
Bank Holiday Monday, my sister and family came down for the day. Her poor husband had put his back out by bending over to get a cup of tea from a vending machine as his mum had been readmitted to hospital at 4am so he was struggling.
I was tired but thought I could make a cup of tea without incident but no. I managed to spill a newly made cup of tea over my left arm and finger which had my lymphoedema sleeve on and cardigan and burnt my tummy. My squeels got my mum, sister and eldest niece running out to help. My niece was busy putting a cold compress on my white, flabby tummy whilst mum and sis wee busy trying to pull my cardi off and sleeve off before i could put my hand in cold water. It definately worked and I haven't got any burn marks.
My sister and mum took the children out swimming at the Grande Hotel Burstin - not sure why it is now called Grande but it has a swimming pool as the council one has been damaged by the earthquake. Talking of which - I have never seen so much scaffolding in my life. Lots of houses had scaffolding around them. It seems it was mainly chimney stacks which had come loose but there were still some very interesting cracks to see in some houses.
Tuesday, everyone but me and Woody went to a wildlife park in Canterbury where it rained. We went on the Romney, Hythe and Dymchurch railway where it didn't rain and we had a good laugh. We also did a bit of shopping as I hadn't bought my sister's birthday present.
Wednesday, it rained even more so came back here in the afternoon and arrived in bright sunshine.
Thursday, was oncology day. Not a happy experience as the onc seemed concerned about the lack of reponse of my breathing on xeloda and also my creatine levels have changed so presumably my kidneys are now finding it a strain. He wants to do a CT scan and then maybe go on to my last option of chemo. I wasn't happy about that but he just shrugged his shoulders.
I forgot to say i found out on the saturday that I had got my appointment through for the Royal Marsden in Surrey on June 5th. I really hope I can get on the tykerb trial and it will work for me to give me some extra time before the final chemo option. I'm finding this very scary as generally I don't look ill and just get very tired and my breathing is bad when I do anything involving moving about. I don't feel ready to die but I do feel my body is struggling now with all this chemo. I'm really wheezy in the centre of my chest and can hear gurgling again. My pains in my chest have also worsened and now my ankles seem to swell at times as well so this does not bode well.
Whilst I was seeing the oncologist, he looked at my toe and thought I ought to see the practice nurse a I had actually cut a huge chunk from under my toe but luckily it had resealed itself as mum had put the plaster on so quick so ended up seeing the nurse for her to put steristrips on to old it altogether!!
I have made one memory box from john Lewis' where I burst into tears but actually putting all my things in made me feel better. I found my original contract for my first nursing post which said 'uniforms will be provided but nurses are expected to provide their own black lace up rubber heeled shoes' and I suddenly could remember the pair of shoes I had. I also found some commemorative coins but when I googled them they seem to be worth less than what my dad paid for them in the beginning!! I also found my school reports and found that I had been a 'reliable registration monitoress'. I have no idea what this post meant I did -presumably I just ticked the register and took it back to the office!! No idea really and not sure if it has helped me in my life at all!!!
Friday , I just spent time at home with the children but AJ and Laura went off to their friends house for friday afternoon and Woody went off to the library with his friend and then played computer games and football.
Saturday, anpother peaceful day at home and then AJ and Laura went off to their friends again for a sleepover. I couldn't believe that AJ would actually go but he did and wanted to stay the night. Woody then had plenty of 'mum' time.
Today, is our 12th wedding anniversary and this time last year, we had just arrived in Greece. It seems longer ago than one year though. To celebrate, we went to Pizza Hut as we hadn't gone out for the children's birthdays as well. Gone are the days for romantic meals just the 2 of us!!!
At the moment, the garden is really pretty and we've got baby blackbirds and sparrows in the garden eating all the nuts and seeds Laura puts down and we've put some water out as well. It has been so peaceful this weekend with lots of resting and sitting watching the wildlife.
Just remembered I haven't taken my chemo tablets so will ahve to eat something and swallow 7 pills.