Tag Archives: epilepsy

A Soul-Feeding Memory

Ever since ceasing to blog about my cancer journey I have not had much to say. I had the book, ‘Lest I Forget – Blogging A Cancer Journey’, published but have not checked to see if anyone else has enquired about it.  I had contacted Maggie’s Centre about posting a link to it but, although they apologised for ignoring me initially, and promised to do something about it, they then proceeded to ignore me again (!) so now I cannae be boverred either.
My umph has gone awol despite the energy levels themselves being better, and I felt very low at Christmas, verging on being Depessed, but I’m bouncing back again slowly .

Anyway ….. a wee story about my soul being fed 45 years ago ….

On a gallivant today, as we were approaching the Clyde tunnel, a memory once again popped into my head and, as I was contemplating it I realised that what happened then probably could not occur nowadays. Or at least I think not.

What came back to me was a trip to take my car to a garage which resulted in my getting lost and experiencing wonderful hospitality from a Glesgae wifey. I don’t know exactly when it was but it must have been late 1972 or  very early 1973 because I was accompanied by a young Scottish woman also living in the house in Grangemouth where we had a furnished room/kitchen above a taxi firm, and we had moved from there by then. My 4year old daughter must have been with me too, but I do not have any recollection of that.  ( I should add, that I have a very poor memory due partially to having grand mal epilepsy from 1957 to 1990 . I was allowed to drive from 1971 as the fits were nocturnal.)

The only photo I can find showing me about 25 year old.

The only photo I can find showing me about 25 year old.

At the time I had a white Reliant Regal called Reggie.  I assume I was driving across Glasgow to this place because it was a Reliant specialist garage. They were few and far between and I know that a couple of years earlier, we drove all the way from Stockport to Tamworth because that was the only place able to replace a faulty gear.

Anyway, in those days maps did exist of course (!) but I used to just set off and hope to see road signs. I have no idea what directions, if any apart from the address, I had been given but – if there were some – they proved useless, and I found myself going through said Clyde Tunnel, then back again, and again.  It’s embedded in my head that I went through the tunnel three times before it dawned on me to try to contact my destination but logically it would need to be four times.

So, deciding enough was enough ……I drove into a council estate.  This panicked my friend, due to the ‘reputation’ these areas had in Glasgow, but I was completed unfazed (because of complete naivety, not bravery), so I parked, looked for telephone lines going to houses then knocked on a door.   Lord knows what I said to the occupant but it must have been along the lines of “I’m lost so may I use your telephone?”

We were invited indoors and while I found the number and made my call, the middle-aged-cum-elderly lady, (I was 25 so she just seemed old to me), brought in a tray with tea and freshly made scones and jam.  We were very grateful as we had been travelling fruitlessly for quite a few hours by then and I know they were delicious.    I remember the man at the other end of the phone was not too pleased with me and told me I was far too late now.  I think he gave me directions but I actually cannot recall if I went there that day, (after tea and scones of course!) or if I took Reggie another day or if my husband had time off work to do it.    All that is blank, as is everything else about the incident, but I suspect the latter to be honest.

What I DO remember as clear as anything is my friend’s complete confustication about what she thought was my arrogance and downright cheek, and her heartfelt, head-shaking comment to the lady has stayed with me ever since …..”They bloody English will get a jeely piece at anyone’s door!”   My friend’s bewildered statement comes back to me whenever I see the Clyde tunnel and, although I never knew the estate lady’s name or remembered anything else about her, I am forever in awe of the wonderful hospitality she had shown to a complete stranger.

The main point that occurred to me today was that it probably wouldn’t happen to young drivers nowadays with SatNav to guide them to their destinations, and mobile phones to make communication so much easier if they do get lost, but in a way it’s a shame .   This incident didn’t teach me anything about tackling journeys – I still used the “there’ll be road signs” method for years afterwards and got infamously lost many more times – it was only after many, many, many years that I started to put brain in gear as well.   However, it did introduce me to the kindness of strangers , and I have been very lucky to have had similar encounters quite a few times to feed my soul.

Maybe a couple of stories there too.

The Fat Lady Has Taken A Breath.

No, not me!   I’m alluding to the saying “It’s not all over until the fat lady sings” because for my cancer journey it appears that the end is nigh, but not quite here.

I had my urological stent removed on Thursday 21st July and, to my immense relief, was able to discuss other concerns with the doctor carrying out the procedure. She reassured me regarding recent bladder symptoms so I can stop wondering about another cancer, (in that organ anyway). After it was removed the nurse asked if I would like to see the stent, and of course I did. It was much longer and thicker than I had imagined. See images. I remember the end which had been in my kidney as being a much finer wire than that shown in the diagram, but the end which was in my bladder was just like this. No wonder my bladder complained so much! Anyway, since then there has been no sign of blood and not one iota of discomfort – what a relief!

Stent connecting kidney to bladder. Mine was on my right side

Stent connecting kidney to bladder. Mine was on my right side

Images copied from http://www.kidneystoners.org/treatments/stents/ and http://www.shergillurology.com/

The end which was in the bladder.

The end which was in the bladder.

I am to have a scan in a few weeks time to see how my kidney is coping without help from the stent in my ureter then, if all is well, that will be that! Done and dusted, all gone, journey’s end, caput, finis. It will be the end of August/ early September by then, a complete year since I had the bleed which led to a diagnosis of cancer of the uterus. Some journey I tells ya!

As I’ve wittered on about in other blogs, I was very lucky to have very few side-effects from my chemotherapy, and my main concern then was, and still is now, the ‘energy crashing’ business. Many folk experience these crashes, it isn’t limited to those undergoing chemo. Other conditions like M.E., Lupus and Depression are some of many illnesses that cause it too – but I only know about chemo/post chemo. Strangely enough, there seems to be a considerable amount of sympathy for those of us experiencing this as a result of having had cancer treatment, but I get the impression that there is not the same amount of leeway given for folk with the other conditions. I want to try to record how these crashes feel because I am notorious for forgetting what it was like to be me at various stages of my life, and it might just help explain things for others too. Though I admit my main reason is the purely selfish former.

It’s not just being tired. Prior to last August I was a hillwalker so I know what it is like to experience tired muscles. I’ve even been in the situation where I’ve tried to stand and my legs have collapsed under me because the muscles had simply had enough – it is different. It’s not over-doing things either. I used to ‘meet myself coming back’ and filled every day as much as I could and unfortunately, despite warnings from friends, I did fall foul of this both-ends-candle-burning scenario occasionally; but tiredness or feeling weary because of taking on too much is different too. With energy loss your body’s batteries start running down – kind of like the computer ‘not responding’ – it’s still functioning with the wee circle spinning on the surface, but not actually succeeding in doing anything. Even thinking becomes more difficult. Then the batteries are simply empty and there’s no umph left.

I hasten to add, I’m not claiming it’s like being paralysed, if a wild boar had suddenly appeared when I crashed, I could still have escaped. I don’t refer to paralysis lightly either – I am fully aware what it is like because I used to have Grand Mal epileptic seizures, the result of which was that I literally – (in the correct use of the word ) – could not move a muscle, or even speak, for a good number of hours, or even days. However, these crashes are still debilitating physically, as well as mentally and emotionally .

So anyway, that’s it – you find there’s nothing there, empty tank, no fuel, no charge. There’s simply no choice, you have to stop and rest to re-charge. Sometimes for me the recovery is quick and a 10min sit-down is enough for me to carry on. At other times a 30min doze, still others a night’s sleep, then occasionally a day or days in bed! There is no knowing what each one is going to be like. I use the present tense here because I complacently thought I’d finished with them as my energy levels definitely increased, but a week ago Monday I had another big crash, so I am no longer as cocky about their putative demise. As with all the other aspects, this too will pass, so one just has to hang on in there and adapt to the limitations being imposed by the body in its attempts to recover and rebuild.

It really has been one heck of a journey, but thankfully due to masses of support from my friends, especially my fellow librarian who has taken on so much more work to cover for me, and to my partner, who has endured the main brunt of my bumpy travelling – I’ve come through the tunnel to the light at the other side. It’s been twelve months of a wild roller-coaster of emotions which now will lead to a nice wee toddlers’ ride I hope. I also hope that recording my journey with cancer will help others, in the same way as the advice given to me by those who travelled the road before me,  made such a difference for me.
The Fat Lady is starting her final song now.

The Fat Lady starting her final song.

The Fat Lady starting her final song.

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….

Tracking, Packing and Sacking The Past,

Just lately – well effectively since being diagnosed with cancer again and having to wait what seems like an eternity to go for my surgery – I have been acutely aware of the changes I’ve encountered over the years in my sense of who I am and who I was.
This has often been brought into focus for me when I have revisited photos from my past life but very much more so these past few days as I have been going through my possessions in preparation for re-moving .

Walter and I decided it made sense to join households, and to investigate renting out my flat, a wee while before I got my diagnosis, and I couldn’t see any reason why the project should be put on hold.  I am needing to make what should be heartrending decisions about what to discard, what to put into temporary storage (with the scary possibility that they will still  have to go at a later date), and what of my past to take with me into my future.  However, I’m left feeling a bit numb and somewhat lacking – as though there ought to be far more emotion about making such big decisions.  Perhaps tackling moving home and starting the ‘flat project’ at the same time as facing lord knows what with the cancer, is a bit too much for my wee soul to manage .  I have been moved by the evidence of the previous me as seen in my various boxes of souvenirs,  dozens of photo albums etc., and I do jib a bit at effectively discarding what once was precious, but in general the main feeling I have is an intense impatience for it all to be over and done with.  To get my things moved, my cancer removed, my flat done and my equilibrium back.

Photos below show some boxes and bags containing my previous life,  packed ready to be collected by Marie Curie Cancer Care. 

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However, on a brighter note – yesterday I came across two scraps of paper with poems I had written many years ago.  One is a wee ditty which was part of a story I made up for my first granddaughter. The other was written when I had had about two years free of epilepsy which I believed I had achieved thanks to facing fears, and I recall being sure in my own soul that they had gone forever.  A couple of years later I started very gradually to reduce my anti-convulsant drugs until by 1998 I was free of them as well as the fits, and have remained so ever since.   I feel heartened by the positivity shown in the piece.  Maybe that Susan is not so very much different to this one after all.

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Why “Feeding The Soul”?

Why “Food For The Soul” ?

This wonderful country of Scotland provides what I term “food for my soul”. Visiting places like Glen Coe, Glen Etive, The Cuillins on Skye, Torridon and Sutherland – mountains, cloud formations, waves, patterns made by ripples, all provide wonderment galore. So much beauty surrounds us in a myriad of weather conditions, and the simple wonders of the world provide intense pleasure …………… . .

but for me walking in the hills is a ‘soul fix’ in a different league. (Picture of Buachaille Etive Mhor – by Walter Hampson, used by permission)

To explain a wee bit… My late husband (Bob) and I used to walk the Scottish mountains at every spare moment, plus tackling some simple rock climbing, abseiling and cycling. No doubt about it, it was an excruciatingly traumatic trial for me, with much distress mixed with success, but gradually I learned how to cope – how to trust myself – and my soul was lifted.

I am totally convinced that these activities were my saviours because, as a result of the intense physical and emotional challenges faced over a period of approximately ten years, I conquered the debilitating grand mal epilepsy that had plagued me since being seven years old.   I had my last seizure in October 1990 and after five years fit-free I decided to wean myself off all the drugs that I had taken since I was ten (albeit with changes over the years). This I did with my GP’s agreement during the following three years, so that by September 1998 I was medication free.  Bob died in October 1998.

Anyway, since Bob’s death in 1998 I had not hillwalked, apart from taking his ashes to the summit of Sgurr Nan Gillean on Skye and a couple of times up the Pentlands near to where I live. In fact, I thought that part of my life was finished and I had forgotten how much I needed this natural therapy.  A chance remark by my friend Debbie, that she needed to get away from it all for a wee while, prompted me to suggest she came through to Edinburgh for a wee wander in the Pentlands.  From little acorns and all that …..  .