Thursday, 19 January 2012

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.


Fiona said...

Hurrah sounds like peeps are getting their act together. Fingers crossed things keep going smoothly. Jump on anything you're not happy about straight away!

suze said...

Bless you, Lisa .. I just responded to your comment over on my blog ..

I generally read your stuff with my eyes 1/2 closed because it is often TMI for me ... ... but the bits that seem TMI for me are not the bits about your stoma of your arse in the air, which are easy / funny to read .. but the insight into what it is like in the final stages, That is the sort of stuff that feels like TMI for me ... cos it pulls my head our of the sand, and I only cope myself by keeping my head in the sand to some extent!

I yet I totally laud you for recording it all .. and at the same time as finding it TMI I also know that your journey and your record of it will all come to my aid in the future when I am juggling this type of care network myself ... thank-you


Loopy said...

I know some people find it too distressing to read so they read nothing, it's a shame because I'm sure there's the odd one that's just informative or mildly amusing. I know what you mean, I used to seek out the worst case scenarios because I needed to know yet didnt want to. I hope you will find it useful but not for a very long time. X

Anonymous said...

I started reading about your horror hospital stay with the epidural and couldn't stop reading because you write so well: funny, interesting, cool, graphic and emotionally frank: and it takes a unique person to be all that about an experience that was that bad.

My elderly mother has breast cancer and bone cancer mets. An online friend passed away from ovarian cancer three months ago.

I once was prescribed pain killers after an operation and it felt like the world had gone squishy and that none of the surfaces I touched were solid or hard.

Some days feel a little like that atm.

Loopy said...

Thank you, and thank you for commenting. How I write is pretty much how I speak I think, although I tend to be less eloquent in person, nobody wants long sentences with big words in when you're having a chat over tea and cake.

Very sorry to hear you have cancer in your life too. There's been none in our family on either side until me. Yet it's affecting almost half the population now.

I don't think I've been on top of the pain that started close two years ago to feel woozy. That means you're on too high a dose for your pain usually - well in my situation. Oh the Pethidine, I forgot about that, they were just stabbing me with anything to stop me writhing around crying in agony. forgot about that!

I found my best friends (cancer buddies we called ourselves Bum Bandits or BBs for short) and support from MacMillan forums when first diagnosed. There are lots of carers, children, spouses on there.

If reading my blog helps in any way then I'm glad to have you reading. I'll happily answer questions but obviously my knowledge of any cancer other than my own.