Thursday, December 17, 2015

Advent sock day 17

Oh my goodness - so many wonderful comments!  Thank you, everyone.  Especially to those of you who knew where to get information on my rights or who are familiar with the sector I work in generally / my workplace in particular.  It helps a great deal to know how policies are interpreted in real life before making important decisions.
As several of you knew, I am entitled to compassionate leave from my employer.  However, payment is discretionary.  I spoke to my immediate manager today and explained the situation.  He said he would seek advice from HR.
He has agreed that I can take Annual Leave from Monday, and through the Christmas Closure period, when I would have been away from work anyway.  We will review the plan in January.
Meantime, the MacMillan nurse  got me an appointment with an expert at the local Maggie's Centre (a charitable organisation which provides support and advice to cancer patients and their families) to talk it through.
I did a morning's work and actually made some progress - go me!
Back at the hospital, FL was still in his pyjamas but had eaten all of his lunch.  I hadn't been there long when the MacMillan nurse came to see him.  He spoke to FL about the intention to transfer his care to his GP, with future transfusions to take place in the community hospital rather than in the city. Crucially, he explained that his myeloma is back and increasing; that FL has exhausted all chemotherapy options; and that the last remaining intervention, steroids, had directly contributed to his recent chest infection by messing up his immune system.
Radiotherapy was discussed, and FL repeated his belief that his main pain is from his shingles site and not from his bones.  The MacMillan nurse asked lots of "diagnostic" questions and advised FL not to rule out radiotherapy altogether, as if he gets another chest infection (and cough) he may very well find his ribs painful again, as they are full of lytic lesions. FL described the sternum pain as "agony", which the MacMillan nurse said was not the normal experience of a pain from coughing.  
The MacMillan nurse then suggested trying an anaesthetic patch on the site of the shingles pain - it is used for 12 hours at a time to numb the nerves.  FL agreed to try it out, and within the hour it had been prescribed and applied - wonderful!
Not so wonderful was that it distracted the ward nurse from giving FL his morphine, and she forgot.  He rang his bell twice and was ignored.  In the end I had to search her out.  She was quite snippy with me, saying she wasn't sure he could have another painkiller.  I put her straight.  So he received his 2.30 morphine at 4pm.  Grrrrr.
He is now alone in his room, where there were originally 4 patients. Although I am glad he will no longer be disturbed by his neighbour's radio, I do hope he will not be lonely in the night.  Maybe he will get new room-mates this evening.
After everyone had gone, I talked to him about his prognosis.  He said he had been prepared for the news, but wanted to know what would happen to me when he is gone.
I reassured him as best I could.
He sat with his eyes closed for a while, but I knew he was not asleep.  
After a little while, he rather gruffly pronounced:  "Right then.  I need you to help me finish my book."
I said:  "It's a deal!"
That's better!




Continue sock A by knitting 17 rounds with a color determined by the population of your home town.

1-10000 - yellow
10001-50000 - red
50001-200000 - green
200001-1000000 - brown
1000001- grey

Hilarious!  What do you do when you live in a field?
I decided to find out the population of the nearest village to the farm, where we go to vote.  I was amused to read that it is: "one of the last bastions of tranquility within a ten-mile radius of Aberdeen".
I could not find out the population, but it is reasonable to assume it is significantly less than 10,000. Yellow it is!

22 comments:

Jenny Larking said...

What a brave man and a fighter you have there. You both have a job to get on with and I hope you manage to get that book finished. It will be a good focus. That nurse will think twice before messing with you again. Hope Your other Hero is doing well.

Athene said...

I'm so pleased to hear that you are finally getting some joined-up help, despite the difficulties with the nurse. It's disappointing that in order to get FL's needs met you have to brave the attitude of the nursing staff. The sooner you can get him home the better. Good news about the work situation as well - I know it's only a couple of weeks at the moment but I hope that will give you some breathing space and a chance to get some daytime support in place. Heres to FL's book, and warmest wishes to you both.

Charlotte said...

Well there's a cheery yellow for the day. And here's to pain management, books finished, compassionate bosses and perhaps some twinkly lights at the darkest time of year.

Lizzi said...

Now, there’s a challenge! Go for it!

K.Line said...

That's the spirit!

Probably Jane said...

Holding you both in mind, knitting socks, as you do....

Knitlass said...

Keeping fingers crossed that you can get things set up for FL at home ASAP.

Good news about the annual leave :-) that'll give you a couple of weeks breathing and thinking time.

Jo H. said...

Dear Roo, I have been following and thinking of you daily over the last few weeks, but haven't commented so far. I have nothing useful to add to the wonderful advice and support you've received from others but I just wanted to say hi and let you know there's another well wisher out here. I'm so glad to read about the Macmillan nurse. My thoughts (and for what it's worth, my prayers) are with you x

c_j_d said...

Long-time reader, first time commenter (your Camber dress led me here). I gave blood yesterday and was thinking of FL as I did so.

Annieval said...

Hi Roo. Just to send you my love and best wishes. I can't do anything practical to help you, so I have sent a little donation to Macmillan in recognition of their brilliant work. Take care xx

Miss Norm said...

xx

pamela said...

So pleased that you and FL are getting such excellent help and support from the Macmillan nurse. However hard it is, knowing the truth will allow you to make the best of the time that remains. Great that FL is planning to finish his book. May the force be with you both on this!! What is it about? You've probably said, but somehow I've missed it. Wishing you and FL a good day, as free from pain and hassle and anxiety as possible.

sulkycat said...

Thinking of you both - and Hero and his superbladder.

Unknown said...

You have made me aware of the good work Macmillan nurses do and like Annieval I will add a donation to my Christmas list. I do wish that other illnesses had similar proactive charity nurses to help them. I have been in touch with Admiral nurses, for Alzheimer's patients, although not had the same level of assistance. They seem to be fewer in number, but are also a worthy charity. I'm glad you have found someone who gives you straight answers and is able to access what help is available. Pity the nurses at the hospital are not more helpful and more knowledgeable.

Laura said...

Gosh, what a lot of stuff to get done! It sounds like things are moving as they should, although I'm sorry the ward nurses are being so difficult. What a pain (no pun intended!) and I hope you can get home together soon.

That's a fab colour for your sock - these advent socks are so awesome :)

tim's wife said...

Thinking about you and FL from across the pond. I hope for comfort and peace, and a medical staff that will be mindful of his needs. I have to agree with that nurse on the sternum thing. I have dealt with a severe chronic cough for years, due to asthma and sinus issues. It usually makes you sore about the rib area, where there is so much expanding and contracting with the cough. I don't get pain in the sternum, so it might be the MM bone issues causing that. That is where Tim got the most pain when he had to take neupogen shots to mass produce stem cells for collection. There is a significant amount of marrow in that area. I hope they are able to keep his pain in check and I am praying for strength for you, Roo, from one MM wife to another.

TempestKnits said...

I knew if you were able to speak with the MacMillan nurse that things would start to move in a more positive direction. They really are wonderful, as are the Maggie's Centres. I detect that your usual resolve and determination has been refreshed somewhat and this is wholly good! You at last have 'someone of your side' who can help, support and advise and that is of enormous value to you both. What a wonderful man FL is, he has borne his illness so very well and I for one would love to be able to read his book. Yes, he has an order for a reserve copy from me so please let him know! I am also so very glad that you have managed to organise leave from your employment Ruth, remember that self care is very important which is something that those who care for others hardly ever have the chance to do.

Su-z said...

The book sounds like a beautiful distraction! I hope that you can enjoy Christmas together at home.

Nic the Pom said...

Thinking of you both in Sheffield xx

Nic the Pom said...

Thinking of you both in Sheffield xx

jessica said...

Well I, for one, look forward to reading the book! Given what I know of you, FL, and your teamwork, it cannot be anything but fabulous :-).

In the meantime though, I'm super glad for the MacMillan nurse, annual leave, necessary conversations, and of course socks. Sending you both a big hug.

Mairead Hardy said...

Just leaving you yet another hug. Finishing the book sounds like an excellent plan. It's great that FL was well enough to consider it.

And thank goodness for knitting! If I were you, I'd have decked that nurse!