Had a quiet weekend and spent quite a boit of time in my Sanctuary or our bedroom as it should be called. We found some of the ornaments but some odd things are missing like some penguins, the nails scissors and the glass plate that goes with the candle sticks!!!
I had to buy AJ school shoes on friday. I knew it would be busy but was still rather shocked to see a huge queue outside the shoe shop. There seems to be only one shop in Southampton with school shoes left. I spoke to the women either side of the queue so I could sit down and then when we got to the front found out we didn't need to have queued as the downstairs boys shoes sized 3 and a half and over, could go straight downstairs so will have to remember that for next time!!!!
Pete was at work monday and as now working only 16 hrs, was home by 4pm so that made a huge difference to the evening. I took Laura to the hairdresser as she gets such bad split ends. The hairdresser has layered her hair so it looks less bushy now and recut her fringe. Did a quick shop at the co-op and AJ was lucky enough to be taken out to a play area so came home looking like he'd just steppped out of the shower. No other boy seems to sweat like he does!!!!
Tuesday - took the boys over to their grandparents and Laura off to the dentist. She was so brave. She moaned when they put the injection in - but who doesn't!! She found it very odd having a numb mouth and was brilliant when the dentist pulled the tooth out. I then took her back to her grandparents and I went to the hospice for my dinner. The hairdresser wasn't there today as I wanted her to trim my wig so that I would be prepared for when my hair does fall out. In the afternoon, we made christmas cards. Apparently, lots of people buy these cards to support the hospice. One person buys 200 !!!! The camaraderie is good there even though everyone else is over 60 and one man is nearly 90. They are good fun and it was lovely when one of them came over to say they'd missed me. Hopefully, now can attend most tuesdays but during the school holidays I want to spend time with the children.
The twins were so excited about starting their new school. Will have to remind them of that in years to come I think!!
Somehow the time really dragged till 10am when it was time to start school. They had a short day for yr7 only from 1030am to 230pm. The walk was longer than I thought - it took them about 30 minutes so that should keep them fit. I then put the curtains in for drycleaning and wondering whether it would be cheaper to buy new ones!!! I then went to the shoe shop and bought a pair of brown, flat funky shoes so am pleased with them. Then it was off to Tescos to look for various things and quick dash home to be back for the twins. I went to bed as felt so tired. Really worried about blood test results tomorrow.
Thursday - had quiet morning before father-in-law kindly took me to the hospital. I did see the consultant today. What I didn't realise that I have skin nodules and then the lump in my lymph system. He felt I might need radiotherapy if the taxol doesn't make them disappear so that they don't ulcerate. That is another of my fears having open ulcers on my body. I don't particularly want radiotherapy as it may cause lymphoedema and life would be hard with double lymphoedema but still preferable to having an open weeping ulcer. He measured the lump today and made it 2.5cm and it was 4cm last week. My liver tests and creatine are normal and I'm not anaemic and my white blood cells are only just below normal so pleased. He doesn't think the taxol will improve my swallowing at all and the idea is really to control the ones in my liver so there goes the idea of a chicken fajita. He says they will initially give me 10 doses and then see how I am and what the results are like and then take it from there. There is a possibility of 18 which gets me to Christmas but that feels to far away to contemplate and after the way my liver one suddenly appeared it scares me so its head down to finish my memory stuff etc and enjoy each day. I feel like I'm walking the plank and don't know if I will fall off it at anytime!!!
My care package starts next week and someone is coming to do the ironing and hopefully with Pete home more I will have more time to get these things done and not be dashing around as much and make use of my sanctuary more.
Doing these memory books are so emotional as some of the questions are 'what do you want/dream of in the future?' and what do you want on your epitaph so I think there will be quite a few gaps as I just can't answer them - well I can but that would require a miracle. Other times it's fun - like what animal would you be and why? I think I've answered it differently in each book as it depends on how I feel. Just hope people enjoy them.
Really want Pete to photoshop the photos we had done as a combined family as I want them developed and framed so I can see them in my sanctuary. Hopefully, he 'll have time now to do that now.
Hope I can go to sleep as had big dose of dexamethasone during treatment today and it always seems to kick in late evening!!