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!!!