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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 Last Waltz – Or maybe the Anniversary Can-Can.

I have come to the conclusion that my ‘journey’ as a cancer patient is over. It’s 13 months since the diagnosis, almost a year since the fateful surgery, and five months since the last chemo session finished so that’s enough donntcha think?

The reason for the second part of the heading is two-fold. One: because my ‘dance’ has been like a frantic Can-Can instead of a sedate Waltz, and two: I like to think of it as an anniversary of ‘can-can’ instead of ‘cannot cannot ‘.

I had a great holiday 20th August / 3rd September and, although I tended to crash a little each evening, on the whole I was chuffed with my energy levels.

At Rogie Falls

At Rogie Falls

In the last few days of the fortnight’s holiday I did notice that my eyelids were quite swollen but dismissed what has been my body’s warning sign for many years because I felt fine. Fine that is until the Thursday before we came home when I started to get UTI symptoms. I drank plenty of water with Bi-carb added which eased the discomfort and reduced some of the urgency, until a couple of hours after arriving home I started getting pain in my right kidney.

Long-story-short: Out Of Hours at St Johns hospital / high temperature, pain, sickness / admitted yet abloomingain with a kidney infection! I was discharged Wednesday afternoon after antibiotics had settled the Pyelonephritis. Meanwhile my veins have given up all attempts to cooperate with having anything put in them . They didn’t mind too much giving some blood but spat out two canulas on different days, both of which had caused mega problems fitting in the first place.  However, despite being utterly wiped out by the infection, since discharge my energy has been smashing.  At long last I feel like I am moving like ME and not some little old lady.  Plus, my eyelids are no longer swollen.    Mind you, my voice has gone AWOL again, displaying the stress that has been occurring. (Some folk are never satisfied!)

I had a NM Renogram with Diuretic today Friday . (NM being Nuclear Medicine which of course led to jokes about my getting the ReadyBrek glow). Radioactive stuff is injected so that a series of photos can be taken as the organs do their business. Obviously I don’t know how to read what I saw but it appeared as though my right kidney is not behaving as efficiently as its pal, but then is hardly surprising. I had hoped that this would be the last stage but methinks it is not yet after all, and will probably provoke many more blogs, but it is leading off on a different path – the cancer journey itself is done. And in any case , the year is complete and there is a limit to what can be writtten about it.

It’s been challenging from all angles, physically, mentally, and emotionally, as all serious illnesses are – cancer is not really much different. And see that . . . . . . . I wrote “illnesses” . For all too long I was refusing to accept illness – “I’ve not been ill, I’ve just had cancer” and even deleted the word after I typed it just now, intending to substitute ‘conditions’. Then I made myself reinstate it because that IS the case, doesn’t matter how much I want to deny it.  So… maybe I am learning something at long last.

Okay, so sarcasm aside – what has been genuinely learned on this journey?
I’ve learned that the support of my partner and friends, both ‘real life’ and virtual friendships, has been absolutely essential for my sanity as well as physical wellbeing. The advice and encouragement from fellow-travellers being especially vital.
I’ve learned that my previous perception of this disease was distorted.   Due to my mother living forty-odd years after her radical mastectomy, and my having a relative and friends who also are still surviving decades after their treatment for breast cancer, (not forgetting my own ‘nae probs’ experience of it nine years ago), I tended to have a ‘rose-coloured specs’ view of it all. This led me not to take onboard the many deaths of other relatives and friends as a result of their having other types of cancers, until this past year when the terrible consequences of this disease have been impressed upon me more and more. I am still positive about it, no question of that, but now it’s tinged with a bit more realism.
I’ve learned that having enforced time-off is a great opportunity to do other things. Mmmmm? Hang on – maybe that doesn’t quite make sense but anyway, I did manage to get two of my stories published and to develop new craft skills. It’s made me recall what I have succeeded in doing over the years too, and to be grateful for those opportunities, past and present.
I’m supposed to have learned that expectations cannot always come to fruition no matter how much one desires it. OK, that is something we all should appreciate as we grow up – it’s no great revelation – but there is still a tendency to keep hoping against hope. Still wanting to be able to do what I used to do prior to a year ago, despite daily being knocked back by reality of it all. Learning to pace oneself is hard going.
I’m still learning to listen to my body and pay attention to what it is telling me , even though sometimes it doesn’t seem to make sense.
I’ve had my tendency to be an assertive so-and-so, confirmed as an essential trait for a patient, as medics also have a tendency not to listen to the said patient unless she is very insistent.    Short-story-long. 🙂
Me: “Ouch, that doesn’t feel right” Staff Nurse: “It often hurts a bit at first” – walks to other end of ward. M:”it’s far more painful, the drip must need to be slowed down” SN comes back:”It is quite slow already” M:”it is NOT right” [staff nurse looks under bandage holding canula firmly in its very dodgy position at join of thumb & wrist and sees that the tube is obviously so longer in the vein because the arm beneath it is swelling as the fluid has gone into the surrounding tissue sans vein] “oh!, I’ll need to fit another” M: “there’s no more veins available so, as it’s the last IV before I change to oral antibiotics, how about we just have it in tablet form?” SN:”Oh, I can try fitting another canula” M: “I would rather you didn’t, so would you ask the doctors if I can have the tablet instead please. It seems the best compromise”. Later – ” doctor agrees that is the best thing to do – here is the tablet” Hehemm!
Sadly this kind of thing has happened a few times over the past few months and far too many times over the years. I’m always polite, but I will not be treated like its none of my business. It is my body after all.
What concerns me are the patients who don’t like to make a fuss because they feel the nurse or doctor knows best, or in some cases are simply too poorly to bother trying to communicate for long. I’ve been in that latter situation as well this time, when I had not been put on the IV fluids that the doctors in the Out Of Hours departments wanted. I have managed UTIs for all my adult life and know the vital importance of flushing the system, but every time I tried to drink I wretched violently, bringing up nothing but phlegm and bile from what was am empty stomach. I tried to get the nurse to understand my concerns but failed and was too ill to keep persisting. I did have IV antibiotics so during the night had to keep calling on the staff to ‘unplug me’ so that I could go to the toilet – every 15 mins or so over a couple of hours (!) then very hour as the antibiotics must have started having some effect. (Why oh why do doors in hospitals creek and squeal so loudly !  Every time I went to the loo I made such a racket with two of the doors while other patients were trying to sleep!)   I appreciate that the nursing staff can only administer what has been prescribed so wasn’t blaming them, but by the morning  when I was not feeling so dreadful as I had overnight, anger overrode everything else and (still politely but much more firmly) I insisted that fluids should be given as originally promised. The nurse contacted the doctors then came back very quickly to say that they approved, and set up the long awaited fluids for me. Just a shame it wasn’t done when I first raised the issue. BTW: I am sure this situation would be the same in any hospital – no criticism of the NHS whatsoever .

I’ve learned to value little things like nose hair and eyelashes, and to accept what is happening rather than succumb to the pressure applied by a general perception that appears to want chemo patients to pretend nothing is changing.  Be proud of  the ‘survivor haircut’, and only use falsies or wigs or scarves if it makes YOU feel better. Don’t hid you light under anyone’s bushel..

Above all I really have learned that “This Too Will Pass”.  Admittedly, sometimes the light at the end of the tunnel turns out to be an oncoming train, as indeed it did for me in the past few days, but most of the time it is a sign that the end of the awful current darkness is nigh. No matter how full of dread a situation is at the time, it will change, and the you who worried or stressed about it will metamorphose too. Hang on in there folks.

Thank you for coming on this cancer journey with me – now we’ve reached the journey’s end. To refer back to previous blogs – the fat lady is signing her last note.

I shall attempt to publish the blogs with Create Space Publishing, and any sales will go to Maggie Centre, Edinburgh.

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 and

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.

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.