Feeling Out of Place
When I got here to the hospice on friday, it was so different from the daycare setting and seemed really clinical but now I've made my messy impression upon my bed area it feels more like home. it drives one of the nurses mad as she dislikes clutter!! I just wanted my pics up of the family and the cards on display and the helium balloons and flowers around but she thinks it's messy!!!
I felt so well and as the hospice puree the food in the kitchen here, I can have a normal adult diet pureed. Milky rice pudding and raisins pureed are lovely so is rolyploy and custard puree!!! As I don't like gravy that much, this is the area where I struggle but now they puree it with soup instead so feel as if I'm getting some fruit, fibre and vegetables. I wasn't sure what was in ham puree or beef puree - all one consistency and same colour. If it is pureed in the hospital kitchen, it arrives in a pretty, piped, dried out fashion with gravy all over and tastes like how I would think wallpaper paste tastes
It's different here than i thought as has 5 x 4 bedded bays plus 5 side rooms. It was very disconcerting to find that a lady had died in my bay in my bed about 4 hrs before I arrived and it certainly worried me as it was not how I imagined it to be from all what I've been told about hospices. I've talked it over with the nurses, the special hospice nurse and social worker and doctor and feel that when my time comes they will do their utmost to keep to my wishes in a single room. It would seem so wrong for my family and friends to see me at the end in a bay. It's not what I or they want and I was looking forward to annoying any visitors with my ipod being on all the time as well!!
I had felt so well here upto today, that I felt a fraud not helped by the senior house doctor saying they didn't normally take patients like me. today, as predicted 7 days after finishing rads, my throat burns and feels constricted as does my oesophagus and it feels as if someone is sittting on my chest. Breakfast was painful this morning and the mug of tea also a difficulty so trying not to panic how worse this will be. Dare I say this - my skin is holding on and only looks slightly pink - probably fall off next week now.
I've had some oromorph and if it worsens I know they will increase the long acting morphine tablets I take. Most of my medication is now in medicine form and most taste OK apart from amytryptylline which is so bitter. I know why as it is dangerous in overdoses but it really is bitter and I only have 30mg!!! They started me on a new nerve pain tablet which has helped but it seemed to help at the same time as the aromotherpay did so don't know which did the trick. They stopped me using the heat pads to my back cos of the danger of making any radiotherapy burns worse so that was a blow but the tablets seem to be working. It would be nice to use Had really bad night as well as a lady who came in yesterday afternoon became confused and aggitated overnight, fell out of her chair as refused to go to bed. Said she had pain but refused medication and kept banging her crutches on the floor. Good job I'm on steroids as it is keeping me awake. I was the only mobile one so seemed to be the one who kept getting things for her and I'm supposed to be here for a rest. Know they will sort out her problems if she will let them but she seems either unable or unwilling to co-operate.
Another thing we need to look at incase I get confused so hubby or other relatives can take control so I don't distress others.
Went onto the secondary breast cancer forum chat room last night at my inlaws to talk about how to explain to children you've got secondaries. Very useful but sad and there is no consistency of help in schools etc which seems so wrong and no central registry for women like us to access. The forum members have all helped each other and it was at our long thread that made the charity have a special chat session.
It also made me cross as I had made an hour's podcast about living with breast cancer secondaries around november time and they only broadcast about 2 minutes worth of me prasing their forum so have asked them to reevisit my podcast and see if any of it can be transcribed or rebroadcasted so there is some little bits of info there about how we coped or not coped.
Thanks inlaws for bringing me to and fro and letting me use the computer - much appreciated.
Now off to see what will happen with dinner!!

Have been trying to have a quiet week to recover from the busy weekend.
Poor Laura really seems not much better and her joints really hurt her. She is still having a sleep in the day and goes to bed early and wakes late. She just tends to sit and doesn't go outside which is so unusual for her. Wonder how long it will go on for?
Still no news from Primark - surely if the letter was sent friday, it should have been received by mon/tuesday surely.
Tuesday - I went to the Hospice in the morning. I can usually manage their meals OK but the menu is on a 4 weekly basis so it is getting a bit predictable as so much of the food I can not eat so have the same things week by week!! I got my hair done and some reiki. I also saw the lymphoedema physi who gave me the new sleeve and glove. This one actually feels as if it fits properly and is not too tight on my wrist so hopefully will reduce the hand swelling.
Then it was off to the MacMillan Centre for the Look Good Feel Better session. Parking was even more of a nightmare than usual. The queue for the disabled parking was not moving as someone had let a removal lorry into it and as the turning area is small, it could not get the angle right to get out. The poor lady in fron of me was desparate to get in as her hubby was really poorly and she needed to get in to see him urgently. Even after she'd explained and I'd explained, they still would not let her in. The lorry was trying to get out the entrance and hit the notice poles and signs before eventually getting out. I don't know who let him in but they should never have done that.
The Look Good Feel Better is a session run for women with cancer to show them how to use make up properly when undergoing chemo or after treatment. The main beauty companies get together and make up a big bag of cosmetics to give each woman meant to be worth about £250. There were 3 helpers and 12 of us women. I sat next to someone who'd I'd been emailing via the forum so it was great to actually meet her. I also met a lady who I'd not seen for about a year. She was with her daughter and didn't look that well. She indicated that she had secondaries in her bones which was a huge shock as she'd been on a trial where she'd been given the same bone strengthener that I have but 3 monthly to prevent bony secondaries.
The session was well run and we got some lovely cosmetics by various companies and I got a 3 bottle set of the various Poison perfumes. The lipstick colours were interesting - I wondered if the companies gave away their least popular colours as the lipsticks were frequently bright red or pink. I ended up getting a strange purple but an OK pinky brown colour lipstick. The eyeshadow I got was a trio pack of white, purple and brown. The assistant had to put that on me as when I use purple it always looks as if I've been given a black eye!!!
We all got chatting and I think there was about 4 or more of the 12 with breast cancer and all under 55 I would think with my new friend being under 40 and me at 46 so rather scary.
Whilst I was there in the afternoon, Laura had tried school but got very tired.
Wednesday - I had lunch with my manager and her PA. It was lovely to see them again and I managed to eat some bread with the soup. I then made the most of the 20% clothing at Tescos sale and am now down to a size 16 from a 20 last year. That evening I really struggled eating some stew and I ended up regurgitating it which was awful for everyone. I'd eaten a lot and most did stay down but my swallowing is worsening. I've tried to deny it but I can't and I'm still losing weight and although I seem to eat OK in the day, it seems to be at night that I can't swallow. I think it doesn't help that my top vertebrae is so painful and I'm stuck on the painkilling front as what I need to take for the pain means I can not drive. It is obviously a concern to the oncologists as well as it was mentioned at this meeting about me as they want to do radiotherapy to cover my spine and my lung tumour. If I take soemthing like a lorazepam or a diazepam then it helps the pain and also my eating as I think it relaxes my oesophagus so I can swallow.
Laura didn't go to school wednesday as she was too tired but she went in on thursday for the school leavers photo but I had to collect her after an hour. I bought a present for my sister which I can't say what it is as she may read this before she receives it!!
Thursday, one of my friends came over and cooked 2 lots of sausage stew and did some housework for me and another friend came over to bring some ironing back.
Thursday night, I managed really well at first with the tuna stew but suddenly choked on it again but I was on my second helping so not too bad.
Friday - Laura and I had a quiet day in as I thought the argos delivery was coming between 8 -1pm and it wasn't till noon I looked at the receipt and it said 12 - 8pm!!! It arrived about 230pm in the end!! The book case looks very narrow though but the order number matches the one in the book so time will tell when hubby opens the box!!
We spent sometime doing the photo scrap book together which was lovely.
I still hadn't heard from Primark or radiotherapy so went round in circles on the radiotherapy front and all I learnt that was I'd been rereferred on the 19th May which was about 3 weeks after the initial referral at the multidisciplinary team meeting so will have to wait and see. The problem is they often only give you 2 days notice so if it arrives next week I won't be here.
I gave a very angry phonecall to Primark who told me the letter had been sent off yesterday!!!! What can I do - i would go to the papers but don't want them to go on the obvious 'dying mother with 3 children' front but it seems so wrong that I've been waiting over 3 weeks for a reply now.
Had a very successful meal tonight of the aforementioned superbly, scintillating and sublime, spicy, sausage stew!!! Don't know what the magic ingredient was but it was lovely and it stayed down!! It might have been the diazepam I'd taken as well that helped with the swallowing but the pain was so bad in my back.
Woody was supposed to pack his own bag for camp but I still ended up helping him and then it was a quick goodbye and see him on monday. Just hope it doesn't rain too much - the forecast is awful.
Saturday - I'd really hoped I'd sleep in well but woke up about 830am. I took AJ into town to buy shoes and trainers. We couldn't get any - there seems to be a shortage of size 3 boys shoes and trainers in this city!!! Not sure what we are going to do as he needs shoes desparately.
I had to have a sleep this afternoon and then we went out in the open topped morris minor. It was fun and really good to be tootling around in the New Forest in an open topped car.
The others have eaten pizza tonight - there is no way I can eat that so think I'll try an omellette.

Yes - I am writing this at 3am. Had a lovely evening putting together some photos for the memory boxes but had to stop as my back hurt so much. Took usual cocktail of drugs and went to sleep but with my i-pod still playing. Woke up to 'The Whole of the Moon' by The Waterboys which always makes me sad as my ozzy friend who died last year and I used to exchange music ideas for our funerals and this was one that we both liked but I can't imagine the church being happy with that one being played!!!
The reason I woke up was pain. Pain in my little toe and my right arm so the good side. I came diwnstairs cos it's brighter down here and could see a huge pocket of pus just below the toenail. I just touched it and 'kaboom' as it always says in AJ's Spiderman comic, loads of pus came out but it feels better now. I started flucclox antibiotic yesterday for my infected big toe nails so that should sort out the little toe.
I looked at my right arm and from my elbow upwards is a red line and a lump in the crook of my elbow. Presumably, this is either a blood clot (unlikely i think) or an infected vein which the antibiotics I'm on may help. So now what do i do? Do I phone the GP in the morning and try to get an appointment without having to wait an hour for the triage nurse to 'decide' if I need to see a doctor when I already know I need to or do I phone the chemo helpline and have to go to the hospital and wait hours to be seen for the oncology junior to see me and then for them to discuss me with the regisrar or consultant to make a decision whether to scan for a clot and wait for blood tests to come back!!!! Tomorrow was supposed to be when I would do some writing about the photos of my jewellery and special things for the memory boxes
Sorry if it doesn't make sense but the diazepam and oromorph are kicking in now.