Here and now

In the here and now life goes on as go on it must.

What have we done? Let me think. 

We had a week in a lodge in the Lake District and the weather was glorious every day.

 

We didn't do lots each day as Mr Mog tires easily but we went to Carlisle and then the model railway shop in Wigton before heading back to the lodge.

One day we visited Mr Mogs mother although she didn't know us sadly:( it was very sad and There were tears shed but at least Mr Mog got to see her. She is still with us and at 97 that's not a bad thing.

We spun a little each day, and yes I do have a new spinning wheel. A Kiwi 2 that I have decorated. I found I missed my spinning dreadfully as its a perfect meditation tool and thought that if I just did a little each day it may be ok. Touch wood so far so good.

We celebrated the Solstice moon with tremendous views of moon and hills and spent lots of enjoyable hours watching the clouds chase across the sky.

We listened to owls and watched bats swooping low across the balcony as the sun went down.

We spent almost 2 days at Woolfest and that was the highlight of the holiday for us both. Catching up with all our many friends, most of whom we hadn't seen since last Woolfest due to being unable to go to Wonderwool in April. 

There were lots of laughs and quite a few tears, mostly as this Woolfest may be the last we spend together. 

One of the highlights for me was finally meeting up with a blogger friend from over the Border NewRoobeedoo

That caused more tears to flow. I never thought we would get to meet, just shows you. Roo was exactly as I thought she would be and I look forward to meeting up again soon.

Woolfest is always inspiring and this years show  was as good as ever.

For me it's always been about catching up with friends, the buying opportunities come second to it. I did buy some fabulous merino and Zwarbles fibre from John Arbon as I couldn't resist the softness or the colour.

When we returned home I did some more decluttering and filled a large tub with the contents of my incense cupboard. Over 45 years of incense making ingredients. We don't make incense now, or do incense making workshops and it's over 12 months since I made any. I tend to use oils in my diffuser instead.

I also cleared out most of my essential oils apart from a first aid kits worth and my diffuser ones. The oils went to my friend who does aromatherapy and massage. She used two of them on me at that weeks massage:)

The incense ingredients went to a pagan friend this last weekend when we attended Pagancon . First time I've been for a few years and there were some quite interesting talks and workshops  we took a friend of ours who is exploring his beliefs and is interested in furthering his pagan faith. Mr Mog went for the first half of day then I dropped him at our friends and I went back for a couple of hours. I didn't stay for the evening which was a shame as Damh the Bard and Cernunnos rising were playing. But I have CDs of both so that's ok. George Nicholas from Cernunnos rising did a fabulous very large painting and talk about the charity he works with Art for their sake. I have mentioned them to the hospice that Mr Mog goes to as they are always looking for new projects.

Today I had to make an emergency appointment with the palliative pain clinic as Mr Mogs pain was worse. They actually fit him in this afternoon and the consultant has upped one of his drugs. I have also to arrange a series  of blood tests for him. Oh and I made an appointment for hospital for later this week to have the back brace remoulded as that may help. Mr Mog has lost some more weight and is just over 10stone now. This also makes the brace more uncomfortable for him as its loose.

Think that brings us up to date. To be honest I am just trying to enjoy each day we have. After all that's all everyone has isn't it? The here and now.

There has been some knitting . I finished yet another shawl in a perfect colour for Lammas.

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.

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? 

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.