February 25, 2016

Time goes too fast

Mr Mog is out of hospital, he ended up staying 5 days and came home with a back brace. He has to wear it all the time he is out of bed because his discs are collapsing. He has lost over 5inches in height and going on for 3 stone in weight loss. He has no appetite and is on fortisips from doctor . He can only taste citrus or spicy flavours . Jelly is a favourite breakfast. He is eating a fraction of what he did so the drinks help to provide essential nutrients. We have been assessed by Macmillan and a plan of sorts has been created. Mr Mog does not want to go back into hospital and they have decided that if (when) he needs more care it will be Hospice at Home. Occupational therapists have brought some essential stools etc for washing. He had a very relaxing hand massage at our local cancer centre on Monday and I had counselling . It helped to talk to someone who wasn't family or friends as sometimes I feel I am dropping all my fears and tears on to them. Next week is palliative pain clinic Monday followed by oncology Tuesday . Mr Mog is going to tell oncologist he doesn't want any more radiotherapy ,or at this stage, radium.
I am driving , Mr Mog hasn't to drive now he has the back brace. Not that he can as he is very wobbly and not quite with it a lot of the time. The drugs I suspect play a big part in that.
We have discussed apres death plans. He thought he might like his ashes taken to Glastonbury but then decided the Lake District was the place for him as he has spent so much time there cycling. He has given away his 2 cycles to family members and that was very upsetting as he has cycled all his life. But he didn't want to keep them as a reminder of what was. I've persuaded him to change his model rail layout as he had planned. So he sold all his OO gauge trains and vehicles to fund an extension to his O gauge layout. It's been wonderful to see him planning tracks etc. We all need hope , it helps on low days.
We have also planned a bucket list of things Mr Mog would like to do. Zoo visits, Glastonbury and Scotland to see old friends are all on it.  I am encouraging him to think of others.
So that's where we are now.
I have very painful carpal tunnel in both wrists/hands. It has been keeping me awake. I've now got wrist splints and I am having more steroid injections as soon as there is space in clinic. I can't have operations, how would I care for Mr M or use my crutches during the recovery period?
Sorry no crafts to show. My heart hasn't been in it.


Freyalyn said...

Oh sweetie, thinking of you both with love and hope as strongly as I can.

Roobeedoo said...

Sweetheart, you are being very brave and strong.
I am so pleased to hear he has a strong interest (the trains) to keep him active.
I have a controversial comment to make which you can dismiss as you see fit: I would counsel you not to do hospice at home. It is not the romantic thing it is portrayed to be. It is very messy and both physically and emotionally demanding and requires 24 hour support from professional nursing staff. It is not being weak to choose to go into a professional facility, it is protecting your own sanity. Your home would never feel the same again.
Hugs hugs and more hugs

Anonymous said...

I'm so glad to read of all the plans currently on the table!
Sending lots of ~vibes~ that the two of you make it though his bucket list before he runs out of steam.

As to hospice . . . . I know families who have done "facility" (both my parents), and others who have done it at home. And the comfort level totally depends on the care providers. You have so far had wonderful doctors to the house so hopefully the rest of your providers will be just as amazing when they are needed.

Just remember - nothing is etched in stone . . . if the time comes and plans need to be changed, so be it.

As I've told you before . . . .you two are my heroes and I hope I will be able to maintain such grace under fire.


Blue Witch said...

Good to hear that you have worked out details that you're both happy with: so many people fail to talk about the important things and then regret it when it's too late to plan. Even if the plan has to change, at least you have previously thought/talked through the options.

Scary how much Mr M has shrunk in all directions. But thank you for having the strength and courage to write about it.

I have a theory about the carpal tunnel, that is true for me, and for Mr Old Friend BW, who drives many thousands of miles a year. This one comes from one of the medical programmes on R4 some time int he last year or so. When most people drive, they tend to bend their wrists backwards, which makes any pre-existing tendency to CT much worse as it causes all the inner workings of wrists to stretch and become much smaller, so causing pressure, which results in pain. This situation is much relieved if one holds the steering wheel with a different grip, making sure that your wrists/hands are always in a straight line, or with hands bend forwards, never backwards.

The recommended NHS treatment is now splints (which help keep the wrists from getting into the danger position, bend backwards) and not operations. Mrs OF BW had both wrists done 5 or 6 years ago, and now regrets it as it is much much worse. My hairdresser and Mr OF BW have bad CT but have both been told by different consultants that splints, rest when sore and keeping hand/wrist straight are the only thing that works long-term.

Typing is really bad for CT too, for the same reason - unnatural position for hand/wrist. When I was using the VRS, mine was much better...

I spend my time trying to catch myself in a 'bad hand position' - it's amazing how many activities require it. I've found that crocheting, spinning, and hand-sewing is much better than knitting or machine sewing. Maybe you are subconsciously shying away from all crafts as some makes your hands worse?

Hope Straight or Forward Wrist works for you!

Poetry for Brigid Imbolc

  The Lake Isle of Innisfree BY  WILLIAM BUTLER YEATS I will arise and go now, and go to Innisfree, And a small cabin build there, of clay a...