February 26, 2016

Is there joy in sadness?

I think there has to be otherwise life would be even more unbearable than it is. A joy that manifests itself in the first moments of a new day when the man I love turns and says good morning. When the sun is shining and even better shares a little warmth with us.
When I manage to get Mr Mog to eat a third of a bowl of spicy soup. Or as this morning a full glass of home made smoothie.
There is even laughter when we ponder his ashes final resting place. When he mentions the Lake District and I tell him I am not climbing striding edge
But that his nephews , keen cyclists as Mr Mog was, must do the deed.
Or when we fix the ever present back brace into place and I tell him he is my bionic man.
There is sadness and tears aplenty . The thought of being without this lovely gentle man is heartbreaking, as is the helplessness I feel that I can't fix it. Can't make him better, can't wave a magic wand or do a spell to make things how they were.
So we enjoy each day, each thing we achieve. Each other
Because in the end that's all you can do.

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.

February 04, 2016

Cancer update latest

mr Mog had MRI today. He has been rushed to specialist neurological unit. He has lesions on his spine and possible spinal cord compression. Oncology, neurology and spinal cord people will have meeting in the morning to discuss and decide treatment. More as I know it.

February 01, 2016

Cancer update

it's a long time between posts, I am so sorry but life is pretty awful at the minute. Mr Mog has been poorly for lack of a better word. Oncology was last Tuesday . Oncologist decided not to carry on with chemo as he has been so ill. Huge relief  but tinged with worry for both of us. She decided that Mr Mog would have radium223 otherwise known as Xofigo. 6 treatments and 4 weeks apart. This is purely for pain but apparently some times can prolong life a little. She warned it could be 4-5 weeks before first treatment but in the event radiotherapy rang as we Got back to our friend Ms home and offered tomorrow for first treatment. As we had just booked a night away in Liverpool for tonight we weren't sure what to do. They said it was no problem and it's been rescheduled for next Wednesday . Mr M was desperate to have a night in Liverpool at our favourite hotel so our dear friend M agreed to go with us for moral support and help as she was formerly a ward sister. I think the thought of Liverpool has kept Mr M going. Last Thursday he had to see doctor and is now on another course of antibiotics as his chest infection wouldn't go away. He has lost more weight and is now just 10 and half stone:( he is on fortisips to try and gain some weight. We got to Liverpool but I am not sure if I wish we hadn't come or am glad we did. He is shattered, can barely walk and is so so tired and sore. I suspect this may be our final trip away and it breaks my heart to see him so frail. Tomorrow we go home and on Wednesday Macmillan nurses are coming to see us. Doctor has ordered a special mattress for Mr M as he now has pressure sores starting on both hips. Last week we saw palliative care consultant at the hospice go tweak his medication. Trouble is the pain relief is not quite cutting it, the pain breaks through mainly in the day. He sleeps fairly heavily once he gets to sleep. He is sleeping much more in the day now as well. We have been truly blessed with incredible friends and family who ring, visit, email and send cards. Lots of online friends also who we have never met.
For this I am truly grateful.
I have cried for Britain, I feel so desperately sad seeing the man I love so ill.

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...