Category Archives: distorted reality

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.

Hair Today, Gone Tomorrow – Cancer Capillos Damnum Iter

I finished my chemotherapy two weeks ago. I have been really lucky during the treatment – no nausea, only a little constipation  and just minimal disruption to my overall enjoyment of life. I had annoying sensations in my feet which made walking a bit uncomfortable, my energy levels sometimes plummeted alarmingly, and ‘ chemo brain’ caused some confusion and considerable amusement, but the side effect that makes me want to blog, is the hair loss and attitudes to it.

My head hair stated to come out very soon into my first chemo cycle and before the end of the third week I had had my head shaved to avoid chunks of hair falling into my food and all over my clothes.  A wig was fitted a few days later but I took an instant and absolute dislike to wearing it. Don’t get me wrong, it was very close in colour and style to the way my own hair often was, and looked very natural, but it just felt wrong or to put it another way, just didn’t feel right.

Maybe putting it on was  emphasising what had been lost – I don’t know, it wasn’t logical because I’ve worn wigs on stage with no problem.   In fact,  in my 20s, I first decided to have my very long hair cut as a result of wearing a short-styled wig.  I have no recollection who suggested I try it, but I know I wore it on a summer holiday and liked it so much I bit the bullet and had my long plait cut off.  So it wasn’t wearing the wig per se, it was something to do with the wearing of it being like a denial of what was happening .  I just couldn’t bear to wear it, felt really stressed by it.   I thought maybe it was the amount of hair involved, so I took it to my hairdresser who thinned it and trimmed it to a shorter style. That was better, but it and I were still not friends . Later on I bought a cheapo very short wig from the internet and felt better wearing that because it wasn’t pretending to be my real hair.  I wore it more than the first one but still was not happy.

The journey part 1

The journey part 1

For normal every day activity, when outdoors I wore a trilby hat over a beanie at first because it was so cold, but I would have no problems taking them off in shops etc., and felt perfectly comfortable with my baldness at home. I would have loved a henna tattoo on my scalp but I have some mole-type growths getting in the way, so thought it was best not to go down that route. However, I used lipstick and eye-liner to draw cherries using said moley-things as a base.  Just having a bit of fun with the situation.

What’s the point of all this?  Well, almost all the literature I read, and the verbal advice I received, referred to pretty scarves & turbans, hats, wigs, false eyebrows, lashes, even a fringe on a headband for goodness sake.  I have since read bits about living with the hair loss which included being bareheaded, but at the time I saw nothing to encourage me to stay bald.  Nothing to suggest that it would to be just as okay not to adopt the falsies as to do so.  Maybe I am mistaken, but I feel I have had to discover this for myself.

My partner and a couple of good friends have commented that many folk would be horrified at the thought of losing their hair and need much support and advice about replacements, and lots of cancer-support literature stresses that aspect.  However, I wonder how much of that horror and fear is due to the public perception/non-acceptance of a woman without hair. Shaving a woman’s head has after all historically been the ultimate humiliation. Perhaps it is this public attitude and perception that has to be challenged.

I feel it is really important that folk like me should be encouraged to be proud of what a young waiter I met called “your survivor haircut”.  It is vital for changing public perception of what is after all, a very common condition, lots of folk develop cancer. Not all cancers require chemotherapy, (I had breast cancer in 2007 with only lumpectomy and radiotherapy), and not all chemo regimes entail hair loss, but enough do to make it essential to tackle the issue instead of hiding it.  It was once almost taboo to mention what some folk still refer to coyly as “the C Word” and the diagnosis was greeted with fear and despair.  It simply does not need to be like that, and the more that folk having the treatment show the world at large that is not something to hide or be afraid of, let alone ashamed about, the better it will be for us all.

During my chemo sessions I chatted to a lot of other women having treatment and found without exception that they all disliked the false hair and, even though most of them still did wear them, they all did so for others’ benefits, not their own. These patients thought that other folk, be they family, friends, workmates, neighbours or just strangers, felt easier if the baldness was disguised in some way – probably because they did not want to know, or be reminded, that the person was being treated for cancer. It might sound quite pretentious but I’d go so far as to say wearing wigs and the like made me feel as though I was denying my present existence, at that for my own well-being I needed to have the strength to cope with what was happening to my body, not hide from it.

As well as making me feel emotional discomforted, the wigs were physically uncomfortable and made my scalp itch, so I didn’t wear them often at all, but I still succumbed for attending first round drama festivals in February and going to the cinema or for a meal.  I wanted above all to avoid anybody thinking that I was attention-seeking and “advertising the cancer” (as a friend once innocently said, and which kinda cut me to the core, though I know she meant no criticism).

I had stopped wearing the trilby and beanie, relying instead on the hood of my coat to protect my head when outdoors, and was bareheaded in shops and for meetings. Then, eventually, I decided that was it – no more shilly-shallying! I abandoned the wigs entirely and attended later drama festivals sans hair.  The liberation was wonderful and I have never regretted it for a nano second.   I actually felt free at long last.

The journey part 2

The journey part 2

Losing my eyebrows and lashes was a bit more disturbing because it really does change one’s appearance, but even that really wasn’t that bad.  I’ve always liked eye make-up but for a time my eyelids were very swollen, making that infeasible, but again that didn’t last long, and not having lashes didn’t really make much difference – probably because I wear glasses. I was back to using the eye-liner quite soon, though the spontaneous flooding that still occurs with my eyes, often destroys my efforts.

As with all of us, it’s ok when I am made-up, but at other times – wow, the change in me is so marked.  I believe I look as though I have aged five years in six months and am very aware of “old lady skin” on my hands and arms and other examples of my being in my seventieth year, possibly because I actually have had accelerated aging as a result of the treatment, or maybe it’s simply because of such a vast change in the way I look with the bald head and bare face.

I have a wee white fuzz on my head now as my hair starts to return, and my eyebrows are growing back.  So are lashes, but more slowly. I might have to resort to wearing a wig in August when I appear in a show on The Fringe, if my hair isn’t long enough to look acceptable with a Victorian costume, but I won’t mind that because it’ll be for a totally different purpose. Pretending to be a character in a play is different to pretending my body is not undergoing vast changes.

It has been a long journey and along the way I’ve had to learn a lot about perception of self and how we present ourselves to the world .  I appreciate that it is important to be considerate of others’ feelings but sometimes one’s own must take priority for one’s own sanity.

Re: the blog and collage heading – “Cancer Capillos Damnum Iter” – that is what Google translate has given me as Latin for “A Cancer Hair-loss Journey”.  Don’t ask why I wanted to use cod-Latin  – it just seemed like good idea at the time.

Finally, my journey would have been a very difficult one without the wonderful support of my partner and our friends, both ‘real life’ and ‘virtual’ on Facebook.  I didn’t need counselling – just my pals.         Enjoy life- it’s not a rehearsal.

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.

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?