Monthly Archives: November 2015

One Of Those Days When All Goes Swimmingly? – Huh!

Do you know one of those days when all your plans come together seamlessly and your heart is filled with lovely warm satisfied feelings? Nor do I!!!
All seemed fine-n-dandy enough this morning. I got some admin done that I had overlooked earlier in the week and was quite chuffed at not forgetting it again, then it was time to do some more sorting/packing/dumping at my flat. Gee, all was going great – I had plenty of energy again after a few chemo-down-days, and everything was progressing really well as I worked in kitchen, bedrooms and living room. Then, a couple of hours later, I opened my bathroom door!

Blue stained water pouring along the ceiling wiring and everywhere else it could find a route!

Blue stained water pouring along the ceiling wiring and everywhere else it could find a route!

Argghh! The flat is on the ground floor with another flat above it. That water had been coming in for a few days by the sodden-ness of the carpet and the state of the rest – the dark blue stripe on the shower curtain is a stream of running water . I eventually got a response from ‘upstairs’ only to find that  only their teenaged daughters were home – parents having taken grandchildren to a panto. This was not even 2pm so obviously adults were not going to return for a wee while. We needed the upstairs water to be turned off but, low and behold, the teenagers had vanished only for one to return an hour layer – meanwhile every possible item I possessed that could help soak-up or contain water was pressed into service. The water had soaked the window curtains too – it had run everywhere.


Every cover, towel, bucket I had available was pressed into absorbing service

Every cover, towel, bucket I had available was pressed into absorbing service

An emergency plumber duly arrived and stopped the flow from their place – which turned out to be beneath their cistern (explains blue water) and, judging by a video he made of it, – it has been like that for a very long time. He reckoned it would take a couple of days to stop seeping down so did a couple of things to make my bathroom ceiling less likely to fall in (!) An electrician will call tomorrow to see if my power may be turned back on, and make the wiring etc., safe. Then I will have the pleasure of taking up the carpet and lord know what else to get the place dry again!

This was the last thing I needed with all that has been happening healthwise, but then they do say it never rains bur it pours! Huh!

The “Fun” Begins

Well, this is “fun”  ……    Some side effects have kicked in, and I use that phrase advisedly.
I had great energy on Friday and Saturday with no sign at all of having had toxins pumped into me during my first chemotherapy session on Thursday, but on a wee walk on Sunday things began to change.
I am a good walker, so, even though I knew my fitness would have been compromised by the four operations in the past few weeks, I was a bit surprised at feeling depleted after about a mile and half over flat ground, but didn’t assume it meant much.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

My partner, our fellow ‘Intrepid’ and I were having a good day out with plenty of laughter as per usual, and I felt confident that all was right with my world, feeding my soul on the simple beauty of the Loch . The peace of mind that comes with being outdoors and having fun with great friends is the best therapy for any malaise in my opinion.
Later in the evening I started getting weird crampy feelings in my feet which developed into lots of achy but sharp twinges in my legs as well. My first reaction to the cramping was to describe it as being like neuralgia but at the same time it still felt muscular. Perhaps ‘weird’ is the closest description – almost as though I could feel something travelling inside them.
It was making me twitch as the twinge aches got stronger, which became very disconcerting and I had a bad night sweat.
All day yesterday it was the same with occasional, additional  feelings of weakness in my legs, then in the late evening the sensations were also in my hand and occasionally my abdomen .
We read the Cancer Treatment Guidelines from the start, which have a traffic light system to advise patients.  We were carefully monitoring my temperature, ticking (or not) the descriptions of the various symptoms, and I still seemed in the ‘green column’ but, as the symptoms increased, (I started feeling shivery yet being hot to the touch despite my temperature being normal), we realised it had changed to amber, so I rang the cancer helpline as instructed.

The upshot was I was referred to St Johns Hospital, arriving just after 1am.  The assistant advised me to take things for an overnight stay, just in case – ooh, this was getting seriously ‘fun’ now.
The doctor took all the obs and gave me a thorough check-over then, when my blood test results came back okay, I was allowed home at 3am with the proviso that if there was any further concern I contact them again immediately.  Actually, to my great relief, the symptoms had died down quite a lot during that period, so it was fine by me not to be staying overnight.
The annoying sharp twinges have not returned but, when resting, my legs and feet are still aching as though I have walked 20 miles, and when I do walk there’s a really weird sensation inside them.

I loved the premise of the cartoon film ‘Inside Out’ with all the wee characters being involved with one’s emotions and memories, and  can imagine demented little Pacman type thingies running round my veins chasing white cells to destroy.  By gum, they are clumsy little buggars .   I can only hope this “fun” is temporary.

The End And So It Starts…

At long last, at long, long last, I am rid of my nephrostomy , (kidney drain), and its accompanying bag. The stent repairing my right ureter has been replaced rather than removed, so will mean further surgery in a few months time, but I don’t mind that – all I wanted was for the blasted tube no longer to be sticking out of my back and for me not to be lugging around a bag of pee  everywhere.

The tube from the kidney

The tube from the kidney was then taped to my front. (Twisting round here to use mobile phone camera)




Attaching the urine bag to my leg made it easier to cope with, but still annoying.





Perception of time is so weird – my hysterectomy was done on 23rd September, and the nephrostomy fitted on 27th, but the  six weeks that I have been cursed with it have felt far more like six months.  I hated it with a vengeance which is rather unfair seeing as it was actually doing me a favour.  I’d have been in a sorry state without it, but one doesn’t think of that at the time. Logic can only gain priority once the situation is in the past.

Anyway, it’s the end of that episode now but I have a date for my chemotherapy to start so it’s also the beginning. The dawn of a whole new chapter / project / challenge / adventure, call it what you will.

I knew I had to wait until the kidney drain was removed before the chemo would start, and suspected the medics might wait a wee while after yesterday’s surgery, so I am mega chuffed that it is being done so soon after all – 19th November, fewer than two days to wait.  I am feeling slight trepidation going into unchartered territory, but the main emotion is relief not to be hingin’ aboot before beginning the journey.  Six sessions over eighteen weeks will challenge my perception of time again no doubt. Here’s hoping while touching wood with my fingers crossed that it is more or less uneventful .  Superstitious?  Moi?

Memories are made of …….. paper

Sorting through some filing as part of my current house move, I came across these notes for an article to be written for the Epilepsy Assocation’s newsletter around 1993, which I had forgotten about.  There was a much edited version sent as well, but I have no recollection or record of whether either was ever printed. I was delighted to read the longer notes again mainly because I lost so many memories as a result of the grand mal seizures, that I need my souvenirs to prompt me.  It is good to see the beginnings of my ‘glass half full’ attitudes – I was a long time getting there.

“ Hello, my name is Susan, I’m 46 years old and I have epilepsy. Like many of you I’m sure, I spent most of my life being dictated to by that fact. As a result of parents and teachers ‘protecting’ me, until a few years ago all physical activity was a no-go area for me, despite most of my fits being nocturnal.
A few years ago I started hill-walking with Bob, my husband, and gradually this increased my physical confidence. Mind you, there was a great deal of ‘one step forward – three steps back’ but I persevered and saw such wonderful places. There are many hurdles in life for everybody to overcome but I’m sure you’ll agree that when something like epilepsy is involved the highest one is the fear of even trying.
We walked many munros (mountains over 3000 feet) and Bob planned to learn how to handle a rope, rock climb ad abseil to enable him to do the Inaccessible Pinnacle on Skye (the only munro requiring such skills). Me? No Chance! However, I saw some kids abseiling at a small crag in Glen Etive and thought it looked great fun, so when Bob went to the climbing wall at Meadowbank to prepare for the In Pin, I went along. I thought there’d be some stairs to go up to have a shot at abseiling down the wall and I was tempted to have just one shot.  Not so, you want to abseil down? You climb up!  Me climb? Out of the question! Why, what if …….. ? I’m sure the rest of that sentence will be familiar to you.
However, after watching one week, the second lesson I was tempted. Rab Anderson is the instructor at Meadowbank and what infinite patience he has! I took aaaages but I wasn’t caring, everyone was so supportive and although it was scary, the joy when I eventually reached the top was so all-consuming that I was hooked!
Then came real rock-climbing and abseiling totally under my own control. What a brilliant abseiler I am! Others may climb quicker and better but no-one can hold a candle to my abseiling. Well, OK, maybe that’s an exaggeration, but that’s how I feel inside, it is so good. The Inaccessible Pinnacle? Of course I did it! And the epilepsy? I haven’t had a fit for two years now and, although I wouldn’t be so rash as to ignore the change in my drug regime, I really do believe that facing my demons and learning to climb has had a tremendous effect in my staying fit free.
Here’s where you come in. Bob, Rab Anderson, Ted Agar (a film maker) and I are looking for people like you to take part in a film about climbing despite a disability. How about you? Do you fancy a shot at the wall with Rab? Isn’t it time for you to put your epilepsy in your back pocket instead of wearing it around your neck? If you have the teeniest amount of interest contact the Guthrie Street office and they will let us know. Come on, OK so you have epilepsy, but does it have to have you? Go for it, you’ll never look back. ”
After being free of fits for five years (last fit 24 Oct 1990), in 1996 I started reducing my anti-convulsant drugs very, very gradually. My GP was reluctant at first but eventually was persuaded (aka nagged), and co-operated by prescribing lower dosage tablets to help me. I eventually stopped them totally in May 1998. My husband Bob, died in Oct 1998 so he was aware that I had achieved my goal.  He was my climbing partner so I never rock-climbed or abseiled again, but eventually did start hill-walking again with a friend two a few years ago.

Me on the summit of Scald Law in the Pentlands, Aug 2014

Me on the summit of Scald Law in the Pentlands, Aug 2014







I have no recollection, or record, of any response to my appeal for folk to take part in the film referred to in the piece, but we did take members of the Epilepsy Association on hill-walks and taught some of them to climb and abseil at Blackford Crags. We also organised two abseils from the Bonnington Bond Building in Leith to fundraise for the EA – see 3 pic frame. Bob abseiled half way, locked off then took shots of me starting, mid-way and near the bottom.

The first abseil from the Bonnington Bind building.

The first abseil from the Bonnington Bind building.


Me climbing the Inaccessible Pinnacle on Skye. I do have a framed photo of the abseil but it's currently in storage.

Me climbing the Inaccessible Pinnacle on Skye. I do have a framed photo of the abseil but it’s currently in storage. It was the most glorious abseil.











a free climb on Curved Ridge on Buchaille Etive Mor. This climb is often roped but I managed without and was awfae chuffed.

A free climb on Curved Ridge on Buchaille Etive Mor. This climb is often roped but I managed without and was awfae chuffed.

I love travelling and although I am perhaps past the physical scaling of heights, the emotional scaling is ongoing whenever I am feeding my soul from the simple wonders of the world. Hopefully I will keep these memories.

My beautiful Buachaille, my very bestest, favouritest mountain. I have been up it a few different routes, roped once on North Buttress, and unroped on the others.

Buachaille Etive Mor , my very bestest, favouritest mountain. I have been up it a few different routes, but now am gloriously happy just visiting and viewing from the glen. This was Sept 2015.

Onwards and Upwards

Wednesday 11th November 2015.

Strange how some days just feel different.  Today was one of those, ending with a nice calm feeling.

All my life the 11th of November has been a sad day because as well as being Armistice Day, it is also the anniversary of the deaths of both my maternal grandfather and grandmother. He was slaughtered in 1914 and she died seven years later officially of tuberculous but, according to family history,  ‘a broken heart’.  My mother was left orphaned at 14, so the devastation caused by war is something of which I have been aware all my life. This year, it has been a nice kind of strange day instead.

For a wee while now I have felt rather overwhelmed by all the work involved in planning, organising, sorting, packing etc., for moving into my partner’s home and preparing my own flat for renting . It was perhaps not the thing to undertake immediately prior to cancer surgery but I’ve never been one to do things simply.
Anyway, a couple of days ago my perception suddenly changed as I realised that slowly things are coming together, and today I noticed a complete shift in my feelings towards the whole project.  It is no longer as daunting by any means.
Because of the limitations imposed by my current health (or lack of, I have only been able to ‘supervise’ the sorting and packing while my partner, Walter, did the donkey work.  There’s still a long way to go before all my things are transferred and we create enough space to get other things belonging to both of us out of storage, but it all seems perfectly feasible now.

Some of Walter's and my 'previous life' being stored temporarily until room can be made for it in our joint new life.

Some of Walter’s and my ‘previous life’ being stored temporarily until room can be made for it in our joint new life.

When I went into hospital in September I felt the weight of the decision to move my home at the same time, even though I knew it made perfect sense, especially at a time when I needed so much practical support from my partner.  Then,  a problem during my hysterectomy resulted in an external drain from my kidney delaying my recovery and making me far less able to face much meanwhile.

I am an incorrigible hoarder and, as a result of memory loss arising from grand mal seizures from childhood to my 50s, I need my souvenirs, photo albums etc., as aide memoires.  I started dreading not having enough room to keep them but this doubt is fast subsiding.   I felt said weight getting heavier until I managed to get various drawers filled a couple of days ago and realised we are getting on top of it at long last.

I am due to go back into hospital on Monday 16 Nov to get the drain and stent removed, but this time I can go in feeling so much lighter.  I will then get a date for my chemotherapy to start but, rather than dreading it because it was going to be yet one more thing standing in the way of my plans, I am now rather looking forward to tackling it in the knowledge that other things are indeed under control after all.

Onwards and upwards….