June 15, 2016

Each day a day to be savoured

The days of feeling in limbo are over. I made the conscious decision to just enjoy each day as it came and that has helped me. We don't know how long Mr Mog has but then none of us do, do we? Letting go of the intensity of cancer made each day much brighter  although -being human - there are still snot and tears days. Not just for me but for both of us. We are enjoying going out as and when, not far but just being able to go places is good. Mr Mog gets tired easily and the pain is always present. I am also sleeping better. I have booked a lodge for a week next week to coincide with Woolfest. We both wanted to go but I thought 2 days would be too much for Mr Mog and on top of that couldn't find a B&B. In the end I decided to book a week away. Means Mr Mog can go to Woolfest but as the lodge is only around 20 minutes away I can take him back when he is weary.
If anyone is going please do let me know:) I know one long time online friend is going so we will meet for the first time. Can't remember when I started to read her blog but many many moons ago. Can't wait to meet face to face:)
I have been creating since we last spoke. Not so much knitting because of my hands but my thoughts and imagination have been going in different channels. I've been up cycling . What do you think?


































 This is my latest, in honour of the moon Goddess Selene.







April 21, 2016

Thoughts

 Life has been hectic, not always in a good way


It seems to have been a constant round of medical things and appointments. If it hasn't been Macmillan, it's been hospice at home, or doctor or district nurses. Add in palliative pain clinic and you can see where the days went to.


Most of these things are being set in place for when needed and it's reassuring to know. But it got so every day seemed to have something going on.

We have settled down a little now though and are trying to enjoy the days. We were hoping to go to Wonderwool in Wales this weekend but it's too far and will be too exhausting for Mr Mog so we made the decision to stay at home. Both of us very sad as we love meeting up with friends at the wool festivals.


Mr Mog now goes to the day hospice one day a week which gives me a day , well 10 until 3, to do my own thing. I am now driving all the time as Mr M is not allowed behind the wheel, something that upset him greatly as he loved driving..

I've not been knitting much as wrists are still fragile but I have been playing in my art journal as you can see. It gives me a good deal of satisfaction to splash paint and glue about. 

I never have anything in mind when I start but prefer to see "what if"

Health wise Mr Mog is not doing too bad, very weary and sore but no worse than he was. We know it can't last but are enjoying the now. He has put some weight back on which is good. I've lost some more and that's not a bad thing for me either.

So what have you lot been up to? 


March 10, 2016

More thoughts

where were we?
Oh yes I remember. So it's 4 am and I can't sleep. Slept til now but wide awake and can't just lie there with no sleep. Getting thoughts out of my head onto paper/computer screen always helps. Yesterday was a good day. After Macmillan nurses visit I went out for a few hours with my daughter. Just into nearby town, a look round shops and lunch then home. It was great. Simple but enjoyable. We got to talk about stuff. Not just the serious stuff, what happens after etc. Although that came up. But things like current progress of grandsons. One at uni, the other completing 6th form and may be going onto university depending on grades. Talk of what my daughter is doing and wants to do. Nothing medical, life threatening just normal.
When I cam home a neighbour had been round to talk trains with Mr Mog and brought a book of photos of his layout . We have seen him go by often but met him to talk to for the first time at cancer centre 2 weeks ago. We swapped phone numbers and I asked him to call when he was passing. So he did.
We are going to see the layout this afternoon. I have booked an aromatherapy massage first and I am really looking forward to it.
I am struggling somewhat as I don't know how this disease progresses, where does it go from here? Do the metastatic areas spread? Does it go anywhere other than the spine? All things I need to know. So I can be aware of markers that may need more hospital input .
Writing down the worries helps. Doesn't make for a cheery blog post but I am sorry for that.

On a more cheery note I have been enjoying creating occasional pages in my journal . When it is daylight I will take some pictures. Will make a change from all text on the blog;)

The next thing I am in the process of doing is rearranging and emptying my craft room. Or trying to.
We will need to use this room for a bed at some stage as its the only room available and suitable. That
means getting rid of lots of furniture. But I still need somewhere to create. I've seen a friends solution and it would be ideal. Trouble is it's very pricey and I can't afford. So I am looking for something that will hold all my craft supplies and give me a work surface. Then the desk, chest of drawers and large IKEA Expedit unit can go. Oh and the forest throne is for sale if anyone wants a OOAK spinning chair or just comfortable chair. Made in cherry and ash by a Scottish craftsman.

Hard to photograph the colour but you get the picture?

 

I think that may do for now. Thank you for listening. It helps.

Thinking

Just for a change I thought I would add a picture. Not much ,but at the moment a lot. It's a Worsted Boxy a suggestion from friends as I don't have the wherewithal for anything complicated. This is round and round, and round. Making it in chunky that's almost Aran. It's slow going as my carpal tunnel in both hands is now very bad. I have splints, again. I am now having steroid injections, again. Can't have an operation for many reasons not just Mr Mog. The recovery rate is slow and I depend on my hands for crutches let alone the day to day stuff. So steroid injections is it.
I had the first one early this week and the second is in a fortnight. I am hoping that will allow me to sleep without all the pain and numbness I am getting.
So how's things?
Well hospice at home have visited, Macmillan have been, district nurses and Gp. All things in place for further on down the line when needed. Mr Mog is weary, lost probably near 3 stone as well as at least 6 inches from his height. The brace is helping tremendously

Note colours chosen by Mr Mog for the fastenings. It is thermoplastic and means that his back is supported at all times when he is out of bed. He is supposed to wear it all the time when not in bed. It is cumbersome for him but it helps keep the pain at bay and means he can have a little more normal life.
Normal is much different to what it used to be. It takes a couple of hours probably to get him up, into brace then into bathroom. Sit down, take off brace and wash. Add brace stand up complete drying, get dressed. Sadly he had only had one shower as he feels very vulnerable in there with no brace on. Neuro unit instructions were to cover brace with plastic bag to shower? That means those parts wouldn't get wash. He is on list to be seen and assessed for  Day hospice. They have a bath there and he could use that while there. It would also give me a few hours to myself.
So dressed, then into living room for breakfast. Usually one of the fortisip drinks and a small bowl of jelly and fresh pineapple , although last few days he has managed a plain boiled egg. After breakfast 
the drug marathon, currently around 13 I think - not all different. Mr Mog feels that they fight each 
other and I wouldn't  argue with him, after all he knows his own body. When we next go to palliative pain clinic in 2 weeks I will bring up the subject and see what they think.
By this time it can be 11am, if no appointments or visitors I try to get him out for an hour . Most probably just the supermarket as he can't  walk too far and soon tires. But we now have a new scooter for him. A Travelscoot
Lightweight, even I can lift it. Our present scooter is way too heavy even when broken down into its 5 components. This is much easier.
This is getting long so I will make it another post.

March 03, 2016

Sometimes reality hits home hard

This week has been difficult. Monday was massage (Mr Mog) counselling (me) at local cancer centre, followed immediately by palliative pain clinic at hospice. Counselling went ok it helps to talk to someone not involved. Palliative pain was interesting . Consultant had another consultant from another hospital who ostensibly ran the appointment . But our consultant had to take over several times. Mr Mog has been very breathless, not just when walking but when sitting, and his ankles have swollen. He has also been in lots of pain if he coughed. I mentioned to consultants so they had a look at his last X-ray . Heart was swollen and there was some fluid on the lungs, not a lot but some.  They recommended asking GP to change his water tablet to see if that helped. Then the visiting consultant turned to me and asked "Is he in increased pain?" I could see our consultant wincing and Mr Mog told him no he wasn't in more pain than normal. Why ask me? Surely Mr M is the best one to answer that question? 
Tuesday was oncology. Oncologist was on leave due to family stuff so we saw the registrar. She obviously didn't know Mr M so it was a bit of a wasted day really. Never mind next appointment is 6 weeks and hopefully oncologist is back then.
Wednesday we had doctor booked for home visit. First time Mr Mog had met this one and she was wonderful. Asked lots of questions, changed his water tablet and added in an artificial saliva spray as his mouth is constantly dry. She also told him that unless he needed to see her before she would visit in 2-3 weeks. Then asked about end of life stuff. Ie what Mr Mog wanted to happen if he needed resuscitation . She told him there was no rush to answer but if he did make a decision sometime it avoided me having to do so at what would be a crucial time or indeed avoided medical staff needing to. He has already had the conversation with Macmillan that he does not want to go in hospital again and would prefer to remain at home. I agree with him. 
Last night the realities of our life suddenly came home to me once more, the thought of GP needing to record his wishes for revive or not. So upsetting even though I know how things are.
Add in the fact I now have increased pain in both wrists and hands due to the carpal tunnel getting worse . Have got new splints and GP has rearranged appointments so I can have steroid injection in one wrist next week then the other one 2 weeks later. So not much sleep chez moggies.
I am sorry this blog seems depressing lately, I am afraid I haven't any knitting to show or pretty pictures as we haven't been anywhere.
But thank you for listening.

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.