2012 19th January - Day Four Teflon and Blue Books
Lots of vistors today, rather than one nice long relaxed visit they all involved constant talking by me so a bit worn out this afternoon. Managed a 20 minute doze just now so feeling slightly better.
Maggie came this morning and I opted for a flannel and body wash rather than the whole shower business. Got dressed (an effort always but easier if I don't have a full shower, even sat down it takes my breath and energy for a while). Downstairs she was straight in the kitchen to boil the kettle, wash my methadone kit* and get a bowl of cereal and a yoghurt. It was very efficient but not rushed. She's very good and instinctively passes me things as I would ask for them when I'm getting dressed. Already in a routine so I hope she's always a regular in the mornings, she has few calls so it's very likely. Her lunchtime call was covered by Judy as she had the afternoon off.
*kit includes a glass to decant methadone, syringe to suck up 10ml x 2 into a plastic tablet pot and a funnel to pour the leftovers back into the bottle.
I rang Social Services and got a call back from my Case Worker. I filled her in on the niggling issues I've had so far and she said I should continue to let her know of such problems. It's not that I want her do anything, just be aware. Most things are fixed or dealt with now.
Around 11 the Red Cross lady arrived and was very nice, chatty, had cancer experience in her family which gave her a lot of insight, albeit from a different angle. Rather than up to 12 weeks she said I really need visits ongoing which is a real bonus. I'll have one weekly visit from her until the ideal carer has recovered from her virus fully. She knows about infection risk so there was no need to push this issue. The visit will be to just chat and befriend, someone regular to visit so I'm never alone all week and to do any bits of shopping I may run out of or forgotten on my online shop. Perfect example, of all things I didn't order any toilet paper! Now just because I have a stoma doesn't mean I don't get through it, I probably use a lot more because I have to wipe clean the opening before velcroing it back together. Sorry if that's TMI but you should know me by now. She was just about to go and buy some for me with my 'arrived in the post this morning' 50p off voucher from Andrex when 2 District Nurses arrived. It's been a serendipitous day (second use of the word, get me).
The nurses were here to check my blood sugar and leave the machine with me. I'm on steroids. for liver and brain tumour pain, which can affect it so I'll be tested once a week and can test myself if I think I'm going a bit hypoglycaemic, something I've experienced a fair bit since I was 18. One nurse was here just to know where I live should she need to cover Nikki. They also had to check my bottom as I'd had a slight reddening suggesting a bed sore. Nikki told me to shift slightly every now and then and stand every hour since I'm not very mobile. Today she checked again and I am a star patient because it's nearly gone. However, the reason I'm telling you this rather personal information is because she laughingly told me that she now had to take a photograph of it! So with the curtains temporarily closed before Alison got back with my toilet rolls she got out a nice camera with a pop out zoom lense. Awesome! Some rules about recording wounds, injuries, sores etc. It makes sense but when it's your bum in the air in your own living room with your jeans round your knees bent over the sofa......thought it was worth a mention. I also asked her to mention to my GP about Teflon injections for my vocal cords because not being able to make myself heard or understood on the phone is very frustrating. There are some things I just have to do on the phone and people will obviously call me.
Next visit was, at last, the supervisor of Care Connect with, yes, my blue book everyone has been asking for. Fiona had commented everything that should happen just today so I was totally prepared to make sure nothing got missed when she filled in the paperwork. It was quite hard though because she spent half the 90 minute visit telling me all about her life long battle with eczema and diverticulitis (see comment after Fiona's on previous post).
Finally some peace so I decided to look at this whole vocal cord business which I am positive is lung tumour related. One of my doctors at St Barnabas mentioned the Teflon but I've been so busy I've not had chance to remember to look into it until now. Here is the best link I found with more information and I'm thinking the teflon isn't the best solution for me, maybe the 2-3 month option which involves no scalpels in my neck
and far less risk.
I was diagnosed in December 2006 (officially in January 2007) with Stage 3b rectal cancer. As soon as I became ill enough to think I might not just be over tired from finishing my previous house and moving to another doer upper, I started recording everything. It was an ongoing struggle to remain positive but every year got easier. Treatment for damage caused by treatment to save my life was ongoing and every 6 months I had blood tests and saw my oncologist for him to assure me I'm "Fine". However I'm no longer "fine" and was on a palliative care pathway but passed away on 8th February 2012. Read my blog and remember me.