Tag Archives: mind battles

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.

An Oasis Or A Mirage …… ?

It’s a year since my diagnosis of uterine cancer and my decision to blog about the ‘journey’. A few strained metaphors have been used – from going back in the water, to the fat lady singing via half full or half empty glasses, rocks & hard places, rollercoasters and devils & angels. I’m not quite back to the Fat Lady theme – she who had taken a breath for her last song – because although she has started singing right enough, she has another verse or two to go, so there’s no curtain call yet.

Ok, I’ll stop beating around the bush …. I thought that today would finally see ‘closure’ but sadly no. I had an ultrasound scan to see how my kidney is coping now that I no longer have a stent to assist my ureter. It’s no doing too very badly but apparently it’s still showing more fluid than they had hoped it would, which could mean said ureter is not working as well as it could. However, it also might mean that it is coping fine thanks very much, but once again I’ll need to give it more time to settle down (it’s only been coping on its own for three weeks), so I am to have a different scan in about six weeks. I don’t want to think about what has to happen if the kidney and ureter prove not to be coping. Nope – not going down that road yet!

Somehow the impetus to write has waned and any wit has gone AWOL. This in itself is disappointing, especially as I have started trying to collate my diary musings into a book, but after a year any new insights into the situation have kinda fizzled out.

I suppose this is entirely to be expected the further from the treatments I get, after all it’s four months since the end of the chemotherapy. My hair is re-growing and is now at a stage of just looking like an ordinary short style rather than a ‘survivor cut’. My twinges and niggles are minimal, though the eyes spontaneously overflowing continue to be annoying, and my energy is still disturbingly erratic. I managed to perform five consecutive nights at the Fringe thanks to taking it easy during the daytimes, including having wee naps, so most things are returning to more or less normality, albeit with minor adaptations .

All in all I am on a plateau – back to the strained metaphors……. I am in a desert with the sand stretching out in front of me as far as I can see, but I have it on good authority that there is an

Journey's End????

Journey’s End????

oasis over the horizon . I have to believe it won’t turn out to be a mirage.

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.

Battle Fatigue

‘Battle fatigue ‘ has definitely crept in and this final stretch of the cancer twelve month journey is proving to be so much more challenging than the earlier ones were.
The waiting for surgery was frustrating,  the operation whoopsie with its resulting kidney drain complications was traumatic, the chemotherapy was exhausting and the consequential change in  appearance from total hair loss was character building, but the current stage is depressingly infuriating and positivity-weakening.
I suppose the earlier stages were primarily concerned with adjusting to the diagnosis and adapting to the various aspects of the treatment – there being no point kicking against the traces because it simply had to be managed. The big difference nowadays is the feeling of emotional exhaustion-cum-irritation-cum-utter dischuffment. Now should be the time when I start to rebuild my health but instead I seem to have more and more wee health niggles and things which give me cause to grumble that I have had enough, thanks very much!
I keep getting the awful news of others for whom the cancer journey has ended , so I do know how lucky I am, but in a weird way, the deaths seem to increase my own reservations about it really and truly having been removed. “I have developed two totally separate cancers since 2007, so what’s stopping a third”. Thoughts like that, though utterly useless, do still occur – and bleeding from my bladder doesnae help!
I feel as though my whole being is depressed, suppressed, compressed – everything that indicates restriction, constriction, limitation, negation. I want back my energy, my positivity, my normal feet, and I want to be free of this soul-destroying bladder uncertainty.
I pee extremely bloodied urine and  almost always have discomfort/aches/pain in my nether regions. More investigation is on the horizon (flexible cystoscopy this coming Thursday) so maybe soon we’ll have a better idea what is causing the problems. Mind you, I had a cystoscopy a month ago  when the stent was replaced under general anesthetic.  This procedure is to be under local anesthetic so maybe by being awake  I can find out more. I’ve been under the impression for ages that it was the stent causing all the issues because of being a foreign body, but can no longer be sure, because nothing makes sense. I was advised the blood was because the urine pooled and that every now and again that collection came away. For a wee while (no pun at all) that did seem to fit, but now it doesn’t. I can pee blood most voids during the day, when it doesn’t get chance to ‘pool’, yet have pale amber urine during the night, when it does get a chance to collect more. I am never without UTI-type symptoms, which every now and again become far more intensive because they actually are signs of an infection instead of just a mimiking.  Strangely enough, it invariably develops at a weekend which delays getting treatment for it.
My joints ache, especially my back and knees, probably because I have hardly any decent exercise, and that lack of exercise is because my toes hurt so I am less inclined to walk much. Why my toes hurt is another mystery. Again I was advised it was just a continuation of the “walking on stones” side effects I had but, if it really is a result of the chemo, why is it so different to what I felt during the treatment? The GP diagnosed corns under the pads of my big toes causing additional pain, and I have treated them seemingly quite successfully, but a development is the edges of my toes hurting a lot and appearing blistered, plus the pad on the foot has a swelling.  My feet ache continually.  As an enthusiastic walker I find this most disconcerting.
I’ve had issues with intermittent insomnia for quite a while but in the past few days it has seemed worse. More or less ever since having the stent I’ve had to get up at least twice overnight, only getting two or three hours sleep between needing the loo, but at least was able to go back to sleep quickly after each visit. Thankfully the hours between have lengthened in the past week, but dropping off in the first place has been much harder.
Maybe it’s just a case of being aware of the difference between previous acceptance of the vast changes in circumstances, because there really was no choice, so that that once one starts getting better the lack of patience for no longer being in control, or in achieving progress in returning to my version of normality, is intensified.
Trying to keep positive, there are good things in all these trials and tribulations: a) my eyes are not as dry, so the almost blinding, spontaneous weeping doesn’t happen as often, and they don’t feel as itchy or uncomfortable, b) I have found a new ultra short hairstyle which I would never have dreamed of wearing if I hadn’t lost it all first and c) I am learning new skills re crafting of various kinds, including modelling scenery etc.

The first part of the background near station.

The first part of the background near station.

[Pic shows two of my scenic backboards being tested. They’re not quite in the right position next to each other here but it gives an idea of how they will look.]

I think I have learned to pace myself better so my energy levels are not too bad, but my umph does still give out occasionally, much to my chagrin .


Basically, I am getting heartily sick of being a cancer patient, albeit now ex .  I know ” This Too Will Pass” but meanwhile, I am finding this last leg of my journey to be utterly draining mentally and emotionally,  and to be blunt I am battle weary.

Ah well, roll on Thursday .

This Too Will Pass

“This too will pass” has been a phrase rattling around in my brain for ages – in fact every time I have felt, or do feel, miserable about yet another event in my life or the effects of my treatment, it makes itself heard. My whole reason for starting to blog about the cancer journey was so that I could have a record of how it felt to be me as I travelled it, because my memory alone would not be reliable.

I occasionally used to be aware of days that felt like weeks and others that passed in a few hours, but in the past few months this time-disconnection has been so exaggerated. Perception of time has been more weird than usual since August 2015 when I was diagnosed with uterine cancer. That month was the worst, because it was after diagnosis but prior to surgery in mid September, and waiting for appointments or results seemed excruciatingly slow.

The rest of September and beginning of October wasn’t too bad while I coped with all the trauma of the operation whoospie which resulted in further surgeries and complications, but the latter part of October and early November dragged again until I started chemotherapy. The period from mid November to mid April was even weirder because during each chemo cycle the time was stretched out, yet the six of them seemed to have passed quite quickly once they were finished, despite a hospital admission delaying the final one.  I moved to live with my partner in September and started getting my own flat ready to be rented out – this lasted until March.   Admittedly it perhaps wasn’t the least stressful thing to do while having cancer surgery and chemotherapy but was necessary all the same – I don’t think I could have coped if I had still been living alone.

Through all those months, whenever I was lying there hating the kidney drain, or sitting watching poison being dripped into my veins, or feeling as though every ounce of energy had deserted me, or seeing every hair on my body disappear, or being driven scatty with issues in my flat,  I kept telling myself “This too will pass” and it did.  Since mid April time has rocketed by, and this week I had my three month check since the last chemo. I could hardly believe it had been that long.

Undergoing the treatment didn’t stop my activities although it did curtail them a bit. In February and April I organised and administered one-act drama festivals but I didn’t start back volunteering at The Scottish Community Drama National Script Library  until May.  In December I finally got around to getting two children’s stories I had written many years ago  on Kindle, then this last week also published them as hard copies.   I used to design my own knitting patterns but hadn’t knitted for 20 years, however, last week I started to learning to crochet and this week have been making a jacket in rainbow-coloured wool to my own pattern (how successfully is so far unknown!)  My partner has re-kindled his model railway plans after 15 years so I have been lined up to help with modelling the scenery – another totally new project to add to the great tapestry of life.

At this moment in time – the day before my 69th birthday – I do occasionally have a crash of energy, I still get frustrated by my toes paining, my eyes spontaneously weeping or my peeing bloodied urine, but I console myself knowing it is temporary.   My hair is growing back, my energy levels are much better, and the chemo-brain business has stopped (still have senior moments but it’s different to chemo-brain). I still have at least one more surgery to go through and there continues to be uncertainty about how successfully my damaged uterer will have been mended, but it will all be over soon. Although my perception of ‘soon’ might be different from one day to the next, I know all I have to do is to hang on in there and let the time-perception-distortion machine do its trick.

Above all, distorted as my perception of time might be, I am grateful to have plenty of it spreading out before me.   Others on the cancer journey have not been so lucky.

When needs must…..

This is the first time I have resorted to blogging in lieu of sleep, or maybe to promote it, but needs must, and I did warn at the beginning of this cancer business that I might have a moan.
It’s my fourth cycle of chemo and in all of them I have been ever so lucky only having minor side-effects of some loss of energy and some aches, twinges, and tingles – however – minor as they are, they have stopped me sleeping tonight so I have got up again.
I often find it hard to drop off but can usually put up with it – this time it defeated me. It could be because I had a nap in the late afternoon when my energy levels dropped, maybe I should learn from that.
Anyway, this gives me a chance to say that in the past few days I have been very aware of the alleged ‘chemo brain’ state. It could just be me having my (already established) senior moments of course, but it does seem more noticeable since my treatment.  It shows itself by all the ‘senior’ type things such as forgetting the simplest of words or losing what I am going to say slap bang in the middle of it, but the noticeable difference is a kind of fuzziness around actually understanding what is being said to me.  It’s as though my brain freezes like a PC ‘not responding’ – a failure to compute.
I have had a couple of recent emergencies relating to my flat when I found that I just couldn’t think what course of action I needed to take, in circumstances when I’m sure I would normally have known what to do right away. I feel as though I need a grown-up to take my hand, and this is me who is normally the control freak, always thinking she’s in charge. I am told that it’ll ease off as I recover from the poisons in my veins – huh, I blinkingwell hope so.
Another slightly disturbing aspect of the chemo is the effect on my temper. I remember an advisor at Maggie’s Centre saying that it was hard for companions because of the emotional changes in patients, and another friend who has been through it also warned me, but I have been surprised by it nevertheless. I generally feel irritable the vast majority of the time. Not sad, not sorry for myself, not angry – just much shorter tempered and very quick to respond when I would normally ‘count to ten’.  It is such a shame for those around me, especially for my very long-suffering partner, and I do try to keep a hold on it, but sometimes I just cannae be bothered.
Finally, I am increasingly aware that I don’t really know any more who I am and what I’m doing. I am almost in a Limbo world. My general umph and enthusiasm has taken a massive dive. The driech weather doesn’t help there , which accompanied by my not wanting to risk mixing in crowds, means I am so often confined indoors. This would at one time have driven me crazy but, although I do have some cabin fever, I am finding I am not as eager to DO anything about it.
Ah well, the aches and twinges have really subsided since I have been distracted by typing so maybe I can get some sleep now.

Nothing To Report Sir, (but then again….)

I started writing a blog after being diagnosed with uterine cancer, primarily as a record of my own ‘journey’ but also as away of possibly helping others faced with the same life event.
Initially there was quite a bit to post. From my own and others reactions to the news, frustration about waiting, feeding my soul in general, mishaps in surgery, then first chemo. (See my other blogs.)  BUT since then there really has not been much to report/comment/moan/laugh about.  Nowt, zilch, not-a-hing, nutting, zero, sod-all – but then again…..
My second chemo cycle was more or less uneventful, but my enforced extra time indoors meant that in addition to doing the usual SCDA admin for the One-Act festival, and apart from  incorporating my scalp moles in a drawing cherries on my bald headMe being daft - so what's new! larking about at Christmas……….      I was able eventually to re-visit books I wrote many years ago for my grandchildren and publish two of them on Kindle.

My beloved Rainbow Dragon

My beloved Rainbow Dragon

‘The Rainbow Dragon’ was written after we took my four year old granddaughter to our bothy in Glencoe, and she was so delighted to go to the river to fetch water. The Rainbow Dragon character became very real to me over the years. As we drive in Glencoe I am wont to point out the wee bridge across the river as “that’s where Cherise met the Rainbow Dragon” almost believing it to have really happened, and it has always been  on my ToDo list to have it published.  I had the text of the book on e-file and a copy of it that I produced myself, so I finally got time to scan in the illustrations and tick my list . This is the link to the Kindle book

Connor and his sad friend Trevor the Tractor

Connor and his sad friend Trevor the Tractor

‘A Good Idea For Trevor The Tractor’ was written for my grandson at about the same age (or possibly a bit younger). He loved tractors – it was as simple as that – and the calling of “taktooor” when one is spotted has become part of tradition (well for me anyway) . The original book has been lost and I never kept a copy of it, but luckily when I was moving paperwork to Livingston, I came across a draft and some uncoloured illustrations, so I set about retyping it and colouring the drawings on the PC in ‘Paint’.   link to Kindle book here 

Today – Hogmanay – was my third chemo session and it went totally smoothly.  All traffic lights were at green, and there was hardly any traffic, so we drove there in a third of the usual time. Even the car park at the treatment centre had immediate entry (we waited 20 mins for a place last time).  Consequently I booked in an hour early and  was called minutes after.  Indeed all was so hunky-dory that I started getting my first drug infused at 11am – instead of 2pm both previous times.  I was finished by 3.45pm instead of 7.30 pm last time!
However – one thing that did happen was quite cathartic and worthy of note. An ex-work colleague who I had not seen for eight years, arrived to have (yet another) chemo session so came to sit next to me.  She is only in her mid 40s and has a young child, yet has been dealing with many cancers over a seven year period.  Every time she gets clear in one area of her body, the bloody disease appears somewhere else.  She started with breast cancer, then bile duct, liver and now bone, but she is not afraid and displays a wonderfully positive, yet utterly realistic, attitude to her sad prognosis of very short probable survival.  Discussing matters with her has reinforced my strong feeling that we have to live our lives in the present and very near future. We must squeeze every iota of  value out of our lives because we never know what is around the corner, in the skies, on the rails, across the road or flowing towards us for that matter – in flooded rivers or our own veins.   So maybe there was somat to report after all.