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.

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.