Hi to everyone out there!Thought it was time to let everyone know that Rob and I
are still plodding along,
still trying to cope with our situation. It's not easy
I didn't get a health update put out for Rob in May, so I thought
I'd get an early summer one put out in June instead.
Rob had his 55th.birthday on the 27 April.
It was a year since we were told about the recurrence of his tumour.
At that time they said that if it was possible to operate again, and after chemotherapy, although we wouldn't have a long retirement together, but we would have some quality time.
Unfortunately by July, a much bleaker picture emerged,
no operation was possible and the tumour did not respond to the chemo.
We really didn't expect Rob to see much into 2007.
In October '06 another glimmer of light flickered when he was operated on after all.
Prof. Whittle at the Western decided that he could try the op, hopefully extending Rob's time, relieve the seizures and the paralysis on his left side.
We felt this was a lifeline. We were quietly confident.
Unfortunately though, the seizures didn't go away, and Rob's left side weakness has returned with a vengance. This is what we call the yo-yo effect on our lives. We've had the highs and the lows but we never quite make it back to the starting platform!! The yo-yo is slowing down, our ups aren't as high as they were before.
May wasn't a good month on the whole. Rob's condition has continued to deteriorate.
On his last visit to the D.C.N. at the Western in April it was decided to refer Rob to the Marie Curie Hospice at Fairmilehead for continued palliative care. He has been attending the Day Centre there on Wednesdays since the beginning of May. This has been an excellent resource for us. Between the staff there and our own District Nurse, Shelagh, we have managed to equip Rob with a walking stick (for good days), a mobiliser (or zimmer, for not so good days) and a wheelchair for the days he just can't take his weight on his legs.
We've had various rails, grips and a shower seat fitted in the house.
Rob calls these his new toys, and certainly his mobiliser technique needs to be worked on.
Rob is extremely tired a lot of the time, but even taking sleeps of an hour and a half at a time doesn't relieve his exhaustion.
By the end of April he had started taking Complex Partial seizures ( a type of absence seizure) and in may his Focal seizures (shaking) returned. These always leave Rob emotionally drained. Luckily throughout this horrible illness, he hasn't had to experience pain though his steroids and anti-convulsant intake has increased vastly.
The Marie Cure Volunteer Staff have provided Rob with regular shoulder and foot massages.
He loves these. He believes that the foot massage helps his balance, so I've been following this up at home...but I think he prefers their more experienced skills !!
We still attend Maggies Centre at the Western when we can, for relaxation classes. I still find the Friends and Family Group there on a Tuesday a great source of support.
And so we plod on, together, Rob and I. Some days we have humour but some days it's just plain hard !
Our solace is Sarah.
Sarah continues to keep well. With only seven weeks to go
she's got her bag packed already and conversation often centres round babies names.
Ruth's preference at the moment is Rupert and Genevieve
- but I don't think her parents are convinced !!
At present Ruth seems to showing an interest in physical activity - swimming, tennis, dancing classes as well as trampolining at Granny Eleanor's.
No doubt her Dad will get her onto a golf course at some time in the future.
She's a real joy to us - a girl with an mind of her own.
I hope this post finds everyone well.
If you feel like it, drop us a wee line.
Rob loves to hear how things are going for everyone.
Brian -how is the new grandson faring and how are the holidays going ?
Ian, have you managed to get Fiona to stop using the smoke alarm as an oven timer yet?
Ann - how many races have you run this year or are you taking things easier ?
Steven - how are your girls coping with their wee brother ?
Beth and Alison - thinking about you doing the EPSSA athletics - hope the weather
stays good.
Meadowbank &Telford PE Staff hope you are all well.
Longniddry Golfers- hope the course is in good nick and your handicaps are down
and Margaret Q - good luck for the Moonwalk - and everyone else who may be attempting it !
If I haven't mentioned you it's not because we haven't thought about you
- just too many to mention.
Good health and take care
regards
from Morag,
& from Rob x
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