This is the first time that the 3 children have all been at the same school so inset day on the monday after half term was much easier this time. Woody went out with a friend and played pitch and putt whilst i took Laura and AJ to an indoor play area. I think half of Portsmouth was there!! I spent the time writing thank you letters - well I'd paid £6 for the entrance fee for 2 children so wanted to make the most of it!!! We then went to KFC for lunch and then I came home for a sleep. Seem to be spending a lot of my afternoons asleep now.
The social worker came back in the evening and we tried to think of ways that would make life work better as a family to stop the rowing. The children came up with a few ideas so will have to see how we get on.
Tuesday - mum arrived which was a relief as I needed the help. The occupational therapist came to show me all the new toys/gizmos to help me with what I remember as a young nurse being called 'activities of daily living'. So, I now have a special device to put my socks on, twisty laces so I don't need to tie shoe laces, a device to open tins and lift those difficult pull rings!! Also a fantastic chopping board device which has special pins to put veg on so I can peel them with one hand, and a holding device so I can grate cheese and it will hold onto bowls so I make cakes. Also. a fantastic peeler which is super sharp. Felt really pleased with my new things as now I can be more independent.
In the afternoon, i had to go for my ct scan whilst both grandma's took AJ and Woody to the dentist. I thought Woody was having 3 teeth pulled out as his adult teeth have grown through but the baby ones are still there. In the end, he only had 1 removed so rather puzzled by that but at least it made me feel more positive for the future that he will go to the dentist when I am no longer here. Strange the the things you worry about when you knjow your life is very short. Even after all that trauma, the tooth fairy still forgot to come - think i will have to ask for a new more reliable tooth fairy - this one is rather forgetful !!!!
In the evening, hubby and mum scooped out the pumpkins and the children cut out the faces. They all managed this independently and made some very excellent and scary faces!! I love Halloween.
Wednesday - I went to work in the morning and started to set up another audit so felt I was doing something useful and it was good to be back in the office and joining in with 'normal' chat. In the evening, the children went out trick and treating with a group of neighbours and their children. They all dressed up and it was good fun for them. They came back with well over half a bucket of sweets!! We then went out to watch fireworks at Woody's friend's house where he was at a party that kept us out of opening the door to lots of trick and treaters!! We still had a lot that came round after 8pm though!!
Thursday - quick nip into town and then onto the hospital to get my results. The waiting room was quite quiet but still ended up waiting over an hour to see the onc but at least managed to catch up with one of my friends there and got chatting to someone who I see frequently but never chat to.
When I did see the oncologist i was shocked to find that it was his last clinic as he is off to Oz. I thought he was going in a few months and not this soon so felt really upset about this plus as i expected 3 of the women who used to make up our little secondary corner had all died so that was a real wake up call as 2 of them I had seen go down hill very slowly but one of them went very quickly and she was the ame age as me.
The results were not reported and I didn't see them on screen but apparently my lung on the right is worse and the armpit one has gone back to 3 cm again - I know it hurts. Hopefully, the reported version will not throw up any nasty surprises. I will go back this week to get full report though as i have a need to know.
We discussed various options and I really would like to try tykerb. I feel as my lump can be felt and my breathing has changed, I would know quite quickly if tykerb is working or not. I really do not want to have the gemcetabine/carboplatin option until after christmas because of the associated side effects of anaemia and low platelets, both requiring blood nad platelet transfusions so would be in hospital a lot. However, I don't want this cancer spread to become uncontrollable or grow too big before next chemo. the worry is that even after 5 weeks off chemo, my white blood cell count is still low and I'm slightly anaemic and my blood proteins and calcium levels are low so obvioulsy my body is finding it hard now to fight this cancer and it is beginning to win which is scary. I'm not ready to die yet and even though I should have at least 3 more chemo options left, I'm not sure now if my heart, kidneys and bone marrow can cope.
In the end, I spoke to all 3 oncologists there that day and the breast care nurse came up for a long chat!! They all have different opinions of tykerb and 1 of them thinks I'm now ineligible anyway. The onc had tried to get hold of the the guy at the marsden but neither he or his secretary got back to them so will chase this next week.
I think my face has gone down slightly and my ankles have stopped swelling so much. They still do a bit and I'm having to wear either my support socks or my over the knee socks or else I end up with huge dents in my ankles.
i had the herceptin and zometa and left about 445pm so not bad for a 1215pm appointment!!!
Friday - just tried to catch up with myself and had another sleep.
Saturday - what a beautiful sunny and warm day for november. We went with a friend and her 2 daughters to a public park but which used to belong to a private land owner so all the gardens are well sculptured with lakes laid out and the children enjoyed themselves going over the stepping stones and paddling in the water. The colours of the trees were really beautiful especially as the sun was out and the sky so blue. It was what I wanted to do last weekend but was too ill to get out of bed let alone anything else. I love autumn and the leaves were still in heir crispy stage and not gone to mush. Rather exhausted me so guess what - i had an afternoon sleep whilst hubby and twins walked grandparents dog and AJ watched a dvd.
We then went onto a firework party. It has become an annual event but this is probably going to be the last one there as they are moving away which i am totally gutted about. I love the squash and apple soup and the pumpkin pie and it was good to catch up with people. The fireworks were lovely - another one of my favourite things!!
Sunday - it actually happened!! We managed to go out on the yacht which we had ben planning to do all summer but what with the appalling weather and being away never happened. i never dreamt we would be going on a yacht in november and only needing a layer of fleece to be warm. Unfortunately, there was hardly anywind so spent most of the time using the engine which was a shame but we did go over the wakes that had been left behind by the ferries and red jets so that made the journey more exciting!! We had lunch on the Isle of Wight and teh came home. It was definately colder on the way back and we needed our hats, gloves and waterproofs to keep warm. It was a fantastic day so thnak you for taking us. laura came with us and she took the helm as did hubby which they enjoyed. Laura spent most of the time sitting on the diving board at the front of the yacht and seemed to really enjoy the experience. The boys went off to grandparents - AJ said he couldn't bear to have a day away from his toys!! It's lovely that he enjoys playing so much and using his imagination.
Saying that, it was distressing in the evening as he seemed to have settled off to sleep but then came into our rom very distressed as he wanted to check i hadn't died. It was very upsetting for all of us.
Overall, it has made a positive impact on our daily lives that the children know I will die as they seem more at peace with us and AJ's behaviour has improved and although they have quiet moments, we can now openly discuss this. They knew anyway that I was doing worse and were all expecting me to die but couldn't talk about it. The school people now know they don't have to cover up the truth and can do some constructive work with them with the support of the hospice social worker.
It is so difficult to live your life knowing you are covering up the truth and so i feel as if a weight has been lifted off my shoulders. It i still so difficult to believe i will die and there are so many things we need to set up in place. I need to declutter so people won't have that job later and sort out the memory boxes etc. It is a complictaed and time consuming business dying when you have to get on with the daily routines of packed lunches, homework and general life as well as make sure certain things are set up for the future. I'm so scared I will run out of time before i get some of these things done.