Tag Archives: ageing

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.

Onwards and Upwards

Wednesday 11th November 2015.

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

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

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

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

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

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

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

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

Onwards and upwards….

The Glass Of Life: Distorting Reality

After I had my first surgery I was in quite a bit of pain (see previous blog) and very lacking in energy, so really sleepy most of the time. They were weird sleeps though, and I came to think of them, and later hallucinations, as distortions in time. For instance, I thought I was really sleeping for a while but as I looked at the ward clock each time I woke up, I found that it was only moving on by five minutes from the last time.  This went on for hours in total – all in five minute sections. I felt totally disorientated by it.  I was on a lot of painkillers and (unbeknowns to me at the time) my body was also battling its own toxins so perhaps it wasn’t surprising after all.
The following is taken from notes I made on my phone at the time to make sure I remembered the experiences …..
” Hallucinations;  Walls:  plain or multi-coloured with various textures including crumbling. They are usually moving as though I am travelling along corridors – like being on a hospital trolley. Sometimes swerving round corners, usually fast. The walls  range from silky textured tent walls to crumbling ones with moving rocks and (after feeling particularly angry) a cement one with a wide red stripe. Another was a dark “sky” with other darker shapes making patterns. All come when my eyes close and vanish immediately on opening.
Characters; real people rather than cartoons but highly stylised Dickensian / Hogwarts / Hogarth /Sweeny Todd types with exaggerated movement, costumes, hair and faces. Usually moving around, sometimes floating and coming right over me. Occasionally more modern people who are cleaner and quieter. E.g. I went to rest after texting Walter to ask a friend of ours if she knew anything about them. At that time a modern day nurse appeared in the corner saying something which I couldn’t really hear but understood to be about my query and explaining something which made sense at the time but I never actually recalled what it was.  For a moment I actually thought someone was there really speaking to me but, as usual, when I opened my eyes, they were not.
On one occasion when I was feeling really hot, some characters appeared and wafted the curtains around the bed to create a draft – which I felt. They were so realistic I opened my eyes to see who was coming in but of course there wasn’t anyone. I was disappointed to lose their help.
Only one character was actually threatening. A male with a large mouth who floated over me saying something like “losing the plot Susan” . I just got rid of him by opening my eyes.
More rarely there are teeny weeny insect-sized types scuttling just at the edge of my vision when I’m typing on the phone . Can never move my eyes to watch them. They are different by not waiting for closed eyes before they appear.
Film /show extracts: there have only been two and were experienced while actually sleeping. Very detailed, including sound and colour – just like watching Netflix!  The film extracts were great and I enjoyed them at the time.

Some of the characters’ shenanigans do amuse me too, but I don’t want to keep them around. Mind you, it might be entertaining occasionally.
I found that by setting radio very low, just keeping in one earpiece, I could have the music further in the background. It then diverted my brain and I was hallucination free. Well almost. I’ve found it’s the predominant stimulus that rules so there was one . I did more yoga relaxation in addition to listening to the radio,  to give myself the best chance of resting.  A modern character sneaked to my bedside. As I was almost asleep after feeling smug about my radio / yoga subterfuge, when I became aware of a woman at the bedside who was chatting quietly. As usual the words were not recalled but were comforting. I realised what she was and hesitated before opening my eyes, but did open them because I want to stay in control of whether these folk get in.  Since then no others have appeared.  Miss ’em.”

I never took LSD or anything like that but I would not be surprised if this is what users experienced with it.  I got it free too. 🙂   Does this ‘ring bells’ with anyone else?

Never bloody mind Patience Is A Virtue – I Just want to be A Patient.

Och, I am usually quite laid back most of the time I think, but now I am waiting to become A Patient, being patient is not really on.  Just now, at this moment of typing, I could scream with frustration at not knowing when I’m to be admitted for my hysterectomy. It’s ten days since my diagnosis of uterine cancer and a week since the multi-disciplinary team were supposed to be meeting to decide what to do with me/it. So much for the word ‘Urgent’ being ringed on the form I signed giving permission for the surgery!

I want this bloody cancer OOT!  Gone, away, skiddaling, pissing off – whatever you like – just out of my body.  Only then will I know what else is to happen. Am I to have further surgery ? radiotherapy? chemotherapy?  I just need to know so that I can start planning ffs!
And of course that ‘scream’ I mentioned can only be in my head because I cannae actually scream – as in make a loud noise – because I don’t have a bloody screamable voice do I ! Och, my obnoxious Englishwoman alter ego is becoming uppermost.
I know I should just stay calm, relax, what will be will be, just be patient, wait and all will be revealed and I have been doing that for ten bloody days… Huh!
Patience Is A Virtue – I Just want to be A Patient.

P.S: (written the following day)…

Och, it turns out I was talking through my backside! No pun remotely intended! Apparently the “ten days to a fortnight” timescale I had in my head was just to be notified of admission and that the doctor had told me it would be mid to late Sept for the surgery itself. Walter had recalled that but I hadn’t. After a lot of phoning, and mega frustration, that position has been confirmed though I confess I was wearing my ‘obnoxious Englishwoman hat’ when I was speaking to the nurse .”Mid to end September? By what stretch of the imagination is that classed as ‘urgent’? ” .  She offered me support from Maggies Centre or herself meanwhile to which I responded with “I don’t need support thank you very much, I need surgery! “.  Poor woman – it’s not her fault I don’t remember what I’m told.  It’s my own fault – I should have realised that would just be the letter of notification, not the actual appointment if I’d had my brain in gear.

I really got angry, but as it happens that was without real cause.  If it showed nothing else, it displayed the fact that I am far more stressed by all this than I would care to admit. That no matter how stoic I like to think I am,  hingin’ aboot takes its toll.  I’m calm again now.    Wonder for how long…..

“How are you?” “Fine Thanks”

” Hello, how are you?” say the cheery bank teller, checkout lady, bus driver and many drama bods. “Fine thanks” say I .   Well , let’s face it, one can’t very well answer “just diagnosed with Grade 3 cancer” can one, especially when the questioner is just being polite.  In any case, I AM fine.   I am actually probably physically fitter now than I have been for a good few years – the irony is not lost on me.   I am fine, honest, I’m not just ‘being brave’.

Since Monday’s diagnosis, when my wee world imploded on me, I’ve been totally fine for a few minutes every hour when I was being distracted by a Fringe show or something, but it was not long before my brain flicked back to this greedy thing inside my womb.  I can’t claim to have been worrying about it per se but my brain was going over all sorts of things,  drafting random ramblings in my head, almost as if I were blogging. (!)  It was as if there was a little engine chugging away trying to get my brain in gear.  As with a dream, despite being clear at the time, few thoughts were able to be recalled afterwards, though I know some were predicated on the fact I have good genes so expected to live another twenty-odd years, after recovering from pneumonia and getting the all-clear after breast cancer.

However, something happened yesterday – Friday.  I wasn’t aware of any reason in particular, but I suddenly felt quieter inside, as though that little whirring engine noise had switched off.  It’s as though my brain has finally processed what’s happening so is now just getting ready for whatever lies ahead.  Maybe this is all par for the course, and my state of mind-cum-emotions will fluctuate often – I don’t know.  All remains to be seen.

I’m aware of the ‘blogger mode’ thingy-wotsit in my brain is still chundling away,  but its effect is different, I don’t feel ‘boverred’ by it as I was earlier in the week.  In particular, I feel far calmer about my decision to step down temporarily from some of my drama responsibilities in order to give myself a less-stressed few months.  Luckily this is the ideal time to hand over – after the Fringe and before the organisation of the following year’s one-act festival starts – so whomever stands in for me will not be thrown in at the deep end right away.

A very supportive friend referred to cancer patients as having a war to face which consists of many smaller battles. One has to make sure one’s army is in the best possible condition for the skirmishes ahead, there being no point asking them to fight if they are undernourished and/or tired. This wee scenario of the fighting force preparing to do battle with cancer for me really appealed  because it chimed exactly with the theme of the recent film ‘Inside Out’ which had quite an effect on me. (I’m a simple wee soul really) . There’s a place for Fear and Anger but I’ll just keep them both busy with trivialities like world politics so that they don’t have time to bother me much.  I dare say Disgust will get a larger role, especially if I do have chemo which makes me sick ( I cannot stand vomit – urrrgh!).  I accept that Sadness has her role to play, but Joy will continue to be in charge at my control panel, strengthened when I go feeding my soul w11039845_10204965326752811_3696481917482359627_oith Scotland’s wonderful nature and refuelled from the support of my partner and friends.

So, I might have cancer but I’m fine really, just fine, how are you?

Pardon? Everyone mumbles nowadays!

Pardon?   What did you say?  Sorry..?   Eh?   Come again?     By gum, everyone mumbles nowadays……

Over the past decade or so I have made a few faux pas hearing-wise:-   I thought the President of my drama group said “The most important thing is Celtic”….it transpired to be “The most important thing is to sell tickets”.  I could have sworn my grandaughter was singing along to “Go recycling”  (turned out to be ‘Go Greece Lightning’).  There have been umpteen of them over the years – all laughed off.  Then last week I honestly thought my partner was using the wrong word as a joke when he announced in response to my query about how he’d got on with his bike “ok, no trouble with my vagina” ….a split second later I realised he had said angina but not after I had almost choked on my coffee and everyone else in the room became aware of my mistake.

I know everyone mishears, I do not for a moment think this is anything much to worry about, but people have been mumbling a lot more lately; at the theatre  I’m always saying “I can hear the sound but can’t make out the words” and I find it almost impossible to tell what someone is saying if I’m not in the same room as them.  So, when I received an appointment for a check-up at  Hidden Hearing I went along.  I have had these check-ups for the past three years and each time have been told I didn’t require assistance equipment, but this time my results were much poorer and I was advised to think seriously about wearing a hearing aid.

If I do decide to get one it won’t be a big thing like those NHS hearing aids, mind you, I understand they have improved in recent years!

Seriously, it’ll be the teeny weeny computers with an almost invisible wire that I choose but the trouble is they are not inexpensive. 

So, I think my next step will be to see if I can get a second opinion re the need for assistance by asking my GP to refer me to the hospital, then, if they agree I need help I will go back to HH and bite the financial bullet.

Ach weel – they do say old age doesnae come itsel’