The transport turned up at 8am. It takes under 30 mins to get to hospital at half term so wasn't expecting him and hour and a half early so was dressed and had the ol slap on - getting better at the eyebrow painting but had no breakfast or cup of tea. had to buy breakfast at the hospital - really horrible lumpy porridge!!!
Got my recliner and then was told the Registrar would be a little late as was at meeting but in fact my appt was at 930am and she was with me by 945am so not bad at all. Found out that she wants to take lead in my care at present. Was puzzled and then remembered she'd asked my permission if she could use me as her case study for work she is doing with GPs and other medics about living with secondary bc and that it does not necessarily mean that a woman will be dead within a few months when diagnosed with secondaries Remembered when I first had skin mets in Nov 05, my GP told my hubby I'd be dead within 6 months.
I know in many ways I have been lucky in that my cancer responds to chemo but it just grows back very quickly the week i stop but I also know that many women do succumb very quickly to secondaries.She was happy togive me chemo despite my croaky voice due to a cold as it is not on my chest and I don't have a high temperature or anything. She examined my skin met and underlying lump and it has grown massively in 2 days. When hubby and I looked at it 2 days ago, it looked like a small insect bite about 0.5cm but today it is about 1.5cm across and is puckering - rather scary. My swallowing has improved a little so want to continue on that ground as so petrified of not being able to swallow again. Had an xray on my spine and will get result next week as she needs to get old notes to see if can have more rads to my spine. I think I have had the full dose allowable because of the rads i had June 08 that failed to shrink the solid lung one that squashes my oesophagus. When I was down there, I asked about my CT scan and was told it was booked on 10th Feb for 25th feb - the one date I didn't want as it is the BCC secondary meet in Bristol and desparate to go. I feel my emotional needs are just as important asmy physical needs so cancelled the CT and next appointment is not till 13th march so wouldn't get results till 19th march - 4 weeks time.
Have never had to wait this long before and if they'd sent it out last week I could have changed it then and not wait so long. Feeling I've done the wrong thing now as taking big risk. She has agreed in principle for me to have vineralbine so may have to swap to that before CT if my swallowing gets bad in next 4 weeks.
Good news was iron had gone up from 95 to 105 so think it is all the brocolli I've been eating!!!Will ring someone on monday to see if can be sped up as sure the 25th will be have been given to someone else now. Got my friend's funeral tomorrow so will be a long day and very hard emotionally so must go.

Planning For The Future Without Me
This has been such an odd week. I've tried really hard to get on with the organisation of my dying requests in the Hospice, writing the Will, seeing a Benefits man, planning a Thanksgiving Service at the Crem and negotiating prices and services offered by Funeral Directors. For me, it has been easier as I've now managed to get hubby to look at these things with me so it is not such a surprise when I get to the end. He will not read the blog so it has come as a huge emotional blow with each meeting we've had about each service.
I can't really believe that I am doing this with such detachment as in Aug - Sept 07, we were planning similar things but for the renewal of our Wedding Vows and in such a short space of time we are heading at the opposite end of the spectrum. It is the planning if music, readings, prayers and flowers that are so heartbreaking. Hubby suggested he might try to get some of the funeral tributes dried out and framed as we did for my sedding bouquet. We should have done this for the renewal as well but too late now.
I've spent ages with finance companies, banks etc and now need to get letter from GP to confirm that I am terminally ill so that we can transfer the children's accounts into the children's names with appropriate trustee signatures and for me to get hold of a very tiny private pension I'd forgotten about but will come in useful for the summer hols!! Unfortunately, there is so much we can not do as these companies all need the same original death certificate so will take hubby a long time at the end to clear things up which seems an added stress at such a stressful time. It seems so silly as the endowment is going to pay out the same at my death now or in 1 yrs time so they may as well pay it now and would help us out financially and make it less stressful for hubby.
The Benefits man was helpful and after I've gone at least we know how hubby and children can access benefits.
This Benefit System is silly beyond belief. As I get higher rates for mobility and personal care, someone is entitled to claim Carer's Allowance for me. I do need this extra money to pay for my increasing care. The problem is hubby can't claim as he is working more than 16 hrs a week and nor can my mum who is my main carer as she is over 65 nor can my inlaws who care for me because of the age thing. The Government puts a cap on how much pensioners can claim per week. Apparently, there is a minimum pension allowance and then this can be topped up with Pension Credit and then this can lead to reductions on council tax etc. On the other hand, the Government then limits the upper amount of income per week for Pensioners before financial help is withdrawn so infact most pensioners can not claim the full attendance allowance. So basically pensioners are expected to live off a set amount regardless if they are the main carer for someone other than their spouse or not and yet may still need to pay for carers!! Seems so long winded.
If someone wants to become my carer and either works under 16 hrs pw and also earns around just above minimum wage level, please consider caring for me as I do need help and I need help to pay for it as well.
The meeting with the vicar was useful but he is not computer literate and I'm so used to just googling something rather than having bits of paper photocopied everywhere. He is going to contact The Sisters of Senacor (sounds too much like Sennacot to me) who interpret scriptures and write prayers so will see what they can come up with and will also have to approach the children to see if there are any prayers they want to say and also ask you good people who know me to consider either writing a small piece about me to either read out at the Thanksgiving Service or to put into a compilation for the vicar or someone else to read out. So many of you know me from different walks of life that I think it would be better to try to get some order going to save confusion later on and that you don't get bored rigid when you are listning to my service!!!
The meeting with the Undertaker was interesting. Part of the reason why one of the quotes was so cheap was that there was no mention of a coffin!! Rather an essential part of the whole process wouldn't you think!!!! Anyway, now have proper quote from one company and can go back to the other company and get a like for like quote and meet the Undertakers so that hubby can decide who he wants to work with. There is apparently, an Open Day at one of these undertakers next week which seems odd but I suppose they have to drum up business as well as trade on their name.
One of the odd things we were looking at in the Brochure was the type of Order of Service pamphlets you can order - seemed very cheap and good quality so will do this but can also order a bookmark, thank you card for coming/donating and another type of card. What a business opportunity!!! Can't see why any of you would want a bookmark to mark my thanskgiving and can be quite sure but am sorry that hubby and family will be too upset to write to say thank you for all your help, contributions and flowers etc after the event so at this very premature time, I would like to say a huge advanced thanks for everyone of you who has made this journey so much more bearable for us and the hopeful continued support you will all give to each other and our families.
Sorry to be so maudlin.
Hoping to be home later so next post should bebrighter in content I think