Category Archives: facing fear

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.

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.

Deciding between a rock and a hard place.

“Only you can decide” they say – oh sure, only me because it’s my body, but how the blazes are patients like me supposed to make these kind of choices? If we ‘google’ the conditions we are likely to be faced with so much contradictory information and opinion as to make it useless, and just going from what we are told doesn’t really help that much.
As I understand it the position is this. When the chemo finishes I will be expected to decide whether to follow it with radiotherapy and if so, which kind. Apparently the choice is between treating the full pelvic area, which is likely to be most effective for eliminating the chance of cancer cells reoccurring BUT can cause damage to the abdominal organs, or just vaginal radiation which by being more limited, is potentially not as damaging but is only effective for treating that restricted area. However, apparently it can cause scarring in the vagina which may cause it to close up (!!) though one can be taught how to use a dilator to prevent this happening. Additionally, because the womb has been removed, some of the bowel may get into that space and be damaged by the radiation anyway. Talk about ‘between a rock and a hard place’!
The other option is not to have any further treatment and to take the risk of the cancer reoccurring. This is my preferred choice at the moment. My reason being because as they reckoned they had removed the cancer cells with the hysterectomy, and the chemo is ‘just’ an extra precaution, I think the risk of damage to organs is greater than the risk of cancer. In any case, if cancer did happen again surely it could be irradiated or whatever then?
The risk of damage being done during surgery was quite low but it still happened to me, and the problems with the kidney drain which kept me in hospital were not common, but I was unlucky.
I have another three months of chemotherapy and I still have more surgery to undergo to have the stent removed, so quite frankly, I think I have had enough thanks very much.      I am loathe to chance my luck again.

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.