Part 2 - Hospice Life
I had a quiet sunday morning after having help with a shower. Then my friend and her daughter arrived with some flowers and some creme caramels. Her daughter is in the same school and year as the twins and like hubby and I, knew nothing about this tutor meeting on thursday as well. Her daughter said in the same way as my daughter said 'I told you the meeting is at 11am and we have to be there or else we get marked down as unauthorised absence'. So please, secondary teachers can you explain why we have to attend a 15 minute interview per child on a pre-determined day regardless of when we find out about this day, previous parent commitment or they will have a record of unauthorised absence. I've got my oncology appointment and hubby is working and can't get a couple of hours off with a few days notice!! After that rant, it was good to see them and now on wednesday, the roses are coming out beautifully and I've finished the creme caramels!!
After they left, I had a very good sunday roast dinner and rest. Then late afternoon, Heather arrived with her computer, candles, memory sticks for downloading my blog etc and some sample perfumes. Sorry - that sounds a bit of a strange collection but honestly it was all wonderful to receive and also to see Heather. She brought with her a print out of all the comments from the forums as I had such intermittent wifi access I couldn't access them. I was very touched by them all - thank you so much. She then downloaded onto the memory stick my previous 2 entries in this blog and has posted them as you can see. So thank you so much Heather for doing this and, as you can see, the entries have also now got comments. Please can you read the comments and if you fit into the 'friends' bit, can you please email Penny for me. Thank you!!!!!
Heather bought the candles as she knows I like them and the sample perfumes as I need to find a perfume similar to the Lagerfeld one I am wearing as I want to put this one into the memory boxes. I had not been able to find that perfume and I didn't know what else to do but try and find a similar one. We had a good laugh and chat and I felt much better after the stresses of the last few days.
Monday - I guessed i would be moved again and I was right but this time into a bay where the wifi actually works (hurray!!!) and with a lovely lady who is talkative and fun and sane plus a rather batty, posh lady who is very good at manipulating people. Why do I always let these sort of people manipulate me - I trot along doing what she wants and then I get annoyed that I've done it but then, of course, listen to the praise she gives me!!! We all know it is a game!!!
The fourth lady was, very unfortunately, the mother of one of the women I first met here via the National Childbirth Trust coffee mornings and who I used to see regularly in the school playground until recently. Her mum was only diagnosed with breast cancer about february this year but it had already spread to her liver and was very much at the end stage of her life. This felt really awful as she knew how long I'd been ill for but also I felt I was intruding in on this special last phase of her mother's life and I knew how close she was to her mum who was only about 60.
The co-lead decorator of my bedroom sanctuary also visited me which was lovely and I know she took my washing away and did other lovely things for me but have forgotten now what they were - how awful of me to forget!! Thank you - you know who you but what name can I give you as it would be a lot easier to name you one way or other!!!
I spoke to the palliative care consultant and we agreed I would go home on friday as hubby is working monday, tuesday and is busy wednesday (getting the house ready for my return maybe???) and I'm off to the chemo clinic on thursday. I spoke to his secretary today and found they hadn't cancelled this thursday's appointment so am going up to the main hospital for my herceptin and bone strengthener and to discuss future chemo. I really would like to restart the taxol as my skin secondary has already doubled in size and I have the occasional chest pain and odd feeling when I swallow so don't want to be off chemo for too much longer. It will be 4 weeks this thursday that I last had chemo. Scary how fast time goes.
In the afternoon, I did quite a bit more to the photoalbum of my life. I'm still aged about 7 -10 and my mum obviously had an obsession with cutting my sister's and my fringe. They are so short - no wonder that once we had our own opinion, we both have always had hair that covered our foreheads. That's why it felt so abnormal when my post-chemo hair wouldn't grow downwards only Marge Simpson upwards. Mum does know our feelings about our short fringes - in case you are worried. It's a standing family joke!!
In the evening, the family came to see me and I played nintendo games with the twins so it seemed more like a family evening. At about 10pm, I got a series of texts from Laura saying she couldn't sleep and she didn't know what to do and daddy didn't know what to do. It was really heartbreaking as I didn't know what to do either and I just felt I was the main cause of her being unable to sleep even though she said I wasn't. I know quite a few of my friends daughters' are all having trouble sleeping - apparently it has something to do with hormones. It still didn't help us and I think we all ended up in tears.
Tuesday - we got woken up at 745am this morning. Usually, they wake us up with breakfast at about 830am so felt really cheated of sleep. I did the tea run for the 3 of us - come on, all of you would have done the same. You can't really go and make yourself a cup of tea and then drink it in front of 2 other awake but bedridden women could you?
My friend's mum looked awful but was answering my questions and seemed to be very peaceful and comfortable and I just hoped that they would move her to a sideroom today for her and her family's sake.
After breakfast, I had a shower on my own - unless you count the portable oxygen. It is easier to manage that here alone as I can spread my stuff out over chairs and sit down in the walk in shower whereas at home, I have to clamber in and out the bath and the room is so tiny, there is nowhere to sit unless I sat on the loo seat which never seems appealing.
I had a bit of a rest and then teetered up the slope to Day Care. I hadn't been there for 4 weeks so it was good to be back. Gave the men a fright as I had no wig or make up on today and have lost more weight so they saw me in all my near bald glory! and I didn't get any compliments today!!
I had a lovely aromatherapy session and was about three quarters way through my reiki when I could voices outside wanting to talk to me now. I couldn't concentrate so we had to stop and all it was about to see if i knew if hospital transport had been booked for thursday's appointment. AAAARRRGGHHHH - I'd asked the hospice's ward clerk about an hour earlier and she told me it had been done so why the nurse couldn't have asked her that I don't know. I couldn't then get back to the place wherever reiki takes me which was annoying.
After lunch, I suddenly became overcome with tiredness and teetered back down the slope to my bed to find the workmen fixing the loo washer very noisily in the 'quiet - do not disturb at your peril' hour, so, of course, couldn't then go to sleep!!! I had a rest and then saw the physio for my stair assessment which I passed. The problem is, yes, I know I should only go that slow, but at home, the temptation is to go quickly and that's why I get so short of breath. I'm not a slow person - I find it very hard to do anything slowly.
My friend from just outside of Portsmouth came to see me at 3pm (again, please can you give me a name I can use on the blog - thanks). She also got manipulated into making a cup of tea for my posh lady. I was so glad she was here as it helped to distract me from the deterioriation of my friend's mum and also it was good to have a chat. She has bought me a lovely colour heather with a little penguin tucked in the pot.
On the subject of pressies, I forgot, I think to say thank you for the helium balloons that I got last week and are still flying high - even the penguin one - who says penguins can't fly?? Also, the Gordon Ramsey choccies are sublime.
I've just remembered that Heather has tracked down some of the Lagerfeld perfume so am really grateful for that as apparently, it is not made anymore. Trust me to find a perfume 'that is my signature' and presumably no-one likes it as it is not made anymore!!!
This evening, it all got rather tense in the bay. I was involved in the live secondary breast cancer chat when my hospice nurse who sees me at home arrived so had to stop that which I didn't want to do and could see all these questions being asked which I couldn't respond to so will try tomorrow to write here about memory books as that was one of the subjects but too late to do that now.
We talked about going home and how hubby, children and I, will cope. I think we will just have to see how the weekend goes first and take each day as it comes. My friend (again what name shall i use?) from nurse training days is coming on monday so know I won't be alone all day plus the hospice nurse is coming then as well. At this point, it became clear that the lady next to me was very much at the end and I felt awful as I really felt I was intruding on their grief and all we could do was close the curtains - not much protection is it? My hospice nurse spent some time with them as she knew them and then left after we agreed she would see me on monday at home. Home - I didn't think 2 weeks ago I would be saying that - wowee!!!
I became a bit wheezy so had a nebuliser which then vibrated itself onto the floor with a huge bang. It does work still but has cracked so I think all the fundraising my hubby's friend has been doing with his marathons is going to be used on getting a new nebuliser now. Sorry about that - to another nameless friend. Unfortunately, this happened about 1 minute after the lady died so felt doubly awful that I was now really intruding on their grief. A few minutes later, the posh lady was going on about having the lights dimmed and was asking that I did it. I just said I was sorry that I was too wheezy to walk - I wasn't going to disrupt the family's time with their mum/wife. I will have to explain in the morning I think.
Now it's after midnight and a wee tad late for bed but it's been a bit of an evening.