Tag Archives: therapy

The Fat Lady Has Taken A Breath.

No, not me!   I’m alluding to the saying “It’s not all over until the fat lady sings” because for my cancer journey it appears that the end is nigh, but not quite here.

I had my urological stent removed on Thursday 21st July and, to my immense relief, was able to discuss other concerns with the doctor carrying out the procedure. She reassured me regarding recent bladder symptoms so I can stop wondering about another cancer, (in that organ anyway). After it was removed the nurse asked if I would like to see the stent, and of course I did. It was much longer and thicker than I had imagined. See images. I remember the end which had been in my kidney as being a much finer wire than that shown in the diagram, but the end which was in my bladder was just like this. No wonder my bladder complained so much! Anyway, since then there has been no sign of blood and not one iota of discomfort – what a relief!

Stent connecting kidney to bladder. Mine was on my right side

Stent connecting kidney to bladder. Mine was on my right side

Images copied from http://www.kidneystoners.org/treatments/stents/ and http://www.shergillurology.com/

The end which was in the bladder.

The end which was in the bladder.

I am to have a scan in a few weeks time to see how my kidney is coping without help from the stent in my ureter then, if all is well, that will be that! Done and dusted, all gone, journey’s end, caput, finis. It will be the end of August/ early September by then, a complete year since I had the bleed which led to a diagnosis of cancer of the uterus. Some journey I tells ya!

As I’ve wittered on about in other blogs, I was very lucky to have very few side-effects from my chemotherapy, and my main concern then was, and still is now, the ‘energy crashing’ business. Many folk experience these crashes, it isn’t limited to those undergoing chemo. Other conditions like M.E., Lupus and Depression are some of many illnesses that cause it too – but I only know about chemo/post chemo. Strangely enough, there seems to be a considerable amount of sympathy for those of us experiencing this as a result of having had cancer treatment, but I get the impression that there is not the same amount of leeway given for folk with the other conditions. I want to try to record how these crashes feel because I am notorious for forgetting what it was like to be me at various stages of my life, and it might just help explain things for others too. Though I admit my main reason is the purely selfish former.

It’s not just being tired. Prior to last August I was a hillwalker so I know what it is like to experience tired muscles. I’ve even been in the situation where I’ve tried to stand and my legs have collapsed under me because the muscles had simply had enough – it is different. It’s not over-doing things either. I used to ‘meet myself coming back’ and filled every day as much as I could and unfortunately, despite warnings from friends, I did fall foul of this both-ends-candle-burning scenario occasionally; but tiredness or feeling weary because of taking on too much is different too. With energy loss your body’s batteries start running down – kind of like the computer ‘not responding’ – it’s still functioning with the wee circle spinning on the surface, but not actually succeeding in doing anything. Even thinking becomes more difficult. Then the batteries are simply empty and there’s no umph left.

I hasten to add, I’m not claiming it’s like being paralysed, if a wild boar had suddenly appeared when I crashed, I could still have escaped. I don’t refer to paralysis lightly either – I am fully aware what it is like because I used to have Grand Mal epileptic seizures, the result of which was that I literally – (in the correct use of the word ) – could not move a muscle, or even speak, for a good number of hours, or even days. However, these crashes are still debilitating physically, as well as mentally and emotionally .

So anyway, that’s it – you find there’s nothing there, empty tank, no fuel, no charge. There’s simply no choice, you have to stop and rest to re-charge. Sometimes for me the recovery is quick and a 10min sit-down is enough for me to carry on. At other times a 30min doze, still others a night’s sleep, then occasionally a day or days in bed! There is no knowing what each one is going to be like. I use the present tense here because I complacently thought I’d finished with them as my energy levels definitely increased, but a week ago Monday I had another big crash, so I am no longer as cocky about their putative demise. As with all the other aspects, this too will pass, so one just has to hang on in there and adapt to the limitations being imposed by the body in its attempts to recover and rebuild.

It really has been one heck of a journey, but thankfully due to masses of support from my friends, especially my fellow librarian who has taken on so much more work to cover for me, and to my partner, who has endured the main brunt of my bumpy travelling – I’ve come through the tunnel to the light at the other side. It’s been twelve months of a wild roller-coaster of emotions which now will lead to a nice wee toddlers’ ride I hope. I also hope that recording my journey with cancer will help others, in the same way as the advice given to me by those who travelled the road before me,  made such a difference for me.
The Fat Lady is starting her final song now.

The Fat Lady starting her final song.

The Fat Lady starting her final song.

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.

The “Fun” Begins

Well, this is “fun”  ……    Some side effects have kicked in, and I use that phrase advisedly.
I had great energy on Friday and Saturday with no sign at all of having had toxins pumped into me during my first chemotherapy session on Thursday, but on a wee walk on Sunday things began to change.
I am a good walker, so, even though I knew my fitness would have been compromised by the four operations in the past few weeks, I was a bit surprised at feeling depleted after about a mile and half over flat ground, but didn’t assume it meant much.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

My partner, our fellow ‘Intrepid’ and I were having a good day out with plenty of laughter as per usual, and I felt confident that all was right with my world, feeding my soul on the simple beauty of the Loch . The peace of mind that comes with being outdoors and having fun with great friends is the best therapy for any malaise in my opinion.
Later in the evening I started getting weird crampy feelings in my feet which developed into lots of achy but sharp twinges in my legs as well. My first reaction to the cramping was to describe it as being like neuralgia but at the same time it still felt muscular. Perhaps ‘weird’ is the closest description – almost as though I could feel something travelling inside them.
It was making me twitch as the twinge aches got stronger, which became very disconcerting and I had a bad night sweat.
All day yesterday it was the same with occasional, additional  feelings of weakness in my legs, then in the late evening the sensations were also in my hand and occasionally my abdomen .
We read the Cancer Treatment Guidelines from the start, which have a traffic light system to advise patients.  We were carefully monitoring my temperature, ticking (or not) the descriptions of the various symptoms, and I still seemed in the ‘green column’ but, as the symptoms increased, (I started feeling shivery yet being hot to the touch despite my temperature being normal), we realised it had changed to amber, so I rang the cancer helpline as instructed.

The upshot was I was referred to St Johns Hospital, arriving just after 1am.  The assistant advised me to take things for an overnight stay, just in case – ooh, this was getting seriously ‘fun’ now.
The doctor took all the obs and gave me a thorough check-over then, when my blood test results came back okay, I was allowed home at 3am with the proviso that if there was any further concern I contact them again immediately.  Actually, to my great relief, the symptoms had died down quite a lot during that period, so it was fine by me not to be staying overnight.
The annoying sharp twinges have not returned but, when resting, my legs and feet are still aching as though I have walked 20 miles, and when I do walk there’s a really weird sensation inside them.

I loved the premise of the cartoon film ‘Inside Out’ with all the wee characters being involved with one’s emotions and memories, and  can imagine demented little Pacman type thingies running round my veins chasing white cells to destroy.  By gum, they are clumsy little buggars .   I can only hope this “fun” is temporary.

The End And So It Starts…

At long last, at long, long last, I am rid of my nephrostomy , (kidney drain), and its accompanying bag. The stent repairing my right ureter has been replaced rather than removed, so will mean further surgery in a few months time, but I don’t mind that – all I wanted was for the blasted tube no longer to be sticking out of my back and for me not to be lugging around a bag of pee  everywhere.

The tube from the kidney

The tube from the kidney was then taped to my front. (Twisting round here to use mobile phone camera)

 

 

nephrostomy-006

Attaching the urine bag to my leg made it easier to cope with, but still annoying.

 

 

 

 

Perception of time is so weird – my hysterectomy was done on 23rd September, and the nephrostomy fitted on 27th, but the  six weeks that I have been cursed with it have felt far more like six months.  I hated it with a vengeance which is rather unfair seeing as it was actually doing me a favour.  I’d have been in a sorry state without it, but one doesn’t think of that at the time. Logic can only gain priority once the situation is in the past.

Anyway, it’s the end of that episode now but I have a date for my chemotherapy to start so it’s also the beginning. The dawn of a whole new chapter / project / challenge / adventure, call it what you will.

I knew I had to wait until the kidney drain was removed before the chemo would start, and suspected the medics might wait a wee while after yesterday’s surgery, so I am mega chuffed that it is being done so soon after all – 19th November, fewer than two days to wait.  I am feeling slight trepidation going into unchartered territory, but the main emotion is relief not to be hingin’ aboot before beginning the journey.  Six sessions over eighteen weeks will challenge my perception of time again no doubt. Here’s hoping while touching wood with my fingers crossed that it is more or less uneventful .  Superstitious?  Moi?

Memories are made of …….. paper

Sorting through some filing as part of my current house move, I came across these notes for an article to be written for the Epilepsy Assocation’s newsletter around 1993, which I had forgotten about.  There was a much edited version sent as well, but I have no recollection or record of whether either was ever printed. I was delighted to read the longer notes again mainly because I lost so many memories as a result of the grand mal seizures, that I need my souvenirs to prompt me.  It is good to see the beginnings of my ‘glass half full’ attitudes – I was a long time getting there.

TRANSCRIBED FROM HANDWRITTEN NOTES
“ Hello, my name is Susan, I’m 46 years old and I have epilepsy. Like many of you I’m sure, I spent most of my life being dictated to by that fact. As a result of parents and teachers ‘protecting’ me, until a few years ago all physical activity was a no-go area for me, despite most of my fits being nocturnal.
A few years ago I started hill-walking with Bob, my husband, and gradually this increased my physical confidence. Mind you, there was a great deal of ‘one step forward – three steps back’ but I persevered and saw such wonderful places. There are many hurdles in life for everybody to overcome but I’m sure you’ll agree that when something like epilepsy is involved the highest one is the fear of even trying.
We walked many munros (mountains over 3000 feet) and Bob planned to learn how to handle a rope, rock climb ad abseil to enable him to do the Inaccessible Pinnacle on Skye (the only munro requiring such skills). Me? No Chance! However, I saw some kids abseiling at a small crag in Glen Etive and thought it looked great fun, so when Bob went to the climbing wall at Meadowbank to prepare for the In Pin, I went along. I thought there’d be some stairs to go up to have a shot at abseiling down the wall and I was tempted to have just one shot.  Not so, you want to abseil down? You climb up!  Me climb? Out of the question! Why, what if …….. ? I’m sure the rest of that sentence will be familiar to you.
However, after watching one week, the second lesson I was tempted. Rab Anderson is the instructor at Meadowbank and what infinite patience he has! I took aaaages but I wasn’t caring, everyone was so supportive and although it was scary, the joy when I eventually reached the top was so all-consuming that I was hooked!
Then came real rock-climbing and abseiling totally under my own control. What a brilliant abseiler I am! Others may climb quicker and better but no-one can hold a candle to my abseiling. Well, OK, maybe that’s an exaggeration, but that’s how I feel inside, it is so good. The Inaccessible Pinnacle? Of course I did it! And the epilepsy? I haven’t had a fit for two years now and, although I wouldn’t be so rash as to ignore the change in my drug regime, I really do believe that facing my demons and learning to climb has had a tremendous effect in my staying fit free.
Here’s where you come in. Bob, Rab Anderson, Ted Agar (a film maker) and I are looking for people like you to take part in a film about climbing despite a disability. How about you? Do you fancy a shot at the wall with Rab? Isn’t it time for you to put your epilepsy in your back pocket instead of wearing it around your neck? If you have the teeniest amount of interest contact the Guthrie Street office and they will let us know. Come on, OK so you have epilepsy, but does it have to have you? Go for it, you’ll never look back. ”
2015 UPDATE
After being free of fits for five years (last fit 24 Oct 1990), in 1996 I started reducing my anti-convulsant drugs very, very gradually. My GP was reluctant at first but eventually was persuaded (aka nagged), and co-operated by prescribing lower dosage tablets to help me. I eventually stopped them totally in May 1998. My husband Bob, died in Oct 1998 so he was aware that I had achieved my goal.  He was my climbing partner so I never rock-climbed or abseiled again, but eventually did start hill-walking again with a friend two a few years ago.

Me on the summit of Scald Law in the Pentlands, Aug 2014

Me on the summit of Scald Law in the Pentlands, Aug 2014

 

 

 

 

 

 

I have no recollection, or record, of any response to my appeal for folk to take part in the film referred to in the piece, but we did take members of the Epilepsy Association on hill-walks and taught some of them to climb and abseil at Blackford Crags. We also organised two abseils from the Bonnington Bond Building in Leith to fundraise for the EA – see 3 pic frame. Bob abseiled half way, locked off then took shots of me starting, mid-way and near the bottom.

The first abseil from the Bonnington Bind building.

The first abseil from the Bonnington Bind building.

 

Me climbing the Inaccessible Pinnacle on Skye. I do have a framed photo of the abseil but it's currently in storage.

Me climbing the Inaccessible Pinnacle on Skye. I do have a framed photo of the abseil but it’s currently in storage. It was the most glorious abseil.

 

 

 

 

 

 

 

 

 

 

a free climb on Curved Ridge on Buchaille Etive Mor. This climb is often roped but I managed without and was awfae chuffed.

A free climb on Curved Ridge on Buchaille Etive Mor. This climb is often roped but I managed without and was awfae chuffed.

I love travelling and although I am perhaps past the physical scaling of heights, the emotional scaling is ongoing whenever I am feeding my soul from the simple wonders of the world. Hopefully I will keep these memories.

My beautiful Buachaille, my very bestest, favouritest mountain. I have been up it a few different routes, roped once on North Buttress, and unroped on the others.

Buachaille Etive Mor , my very bestest, favouritest mountain. I have been up it a few different routes, but now am gloriously happy just visiting and viewing from the glen. This was Sept 2015.

The Glass Of Life: Nightmare Glass?

31 October

I’m soooooo pissed off with my body being completely perverse that I’ve got to the point where I absolutely hate the nephrostomy with a vengeance bordering on obsessive. It’s becoming a nightmare so perhaps this is quite apt for Halloween.

I have a date for the surgery to remove the kidney drain (16 Nov) so I keep telling myself that I have to think of the time left as ONLY another fortnight. However, it’s awfae hard not to think of it as YET another fortnight!  So, I have to decide if the blessed Glass Of Life is half full or half empty.  Is it Trick or Treat time?

Is it ONLY two weeks or YET MORE weeks of every day, nay every bloody hour, checking the blasted thing in trepidation, never confident that it’s still working – consequently never knowing from one day to the next if I’ll be going back to hospital for flushes? ONLY two, or MORE weeks of not being able to sit down or turn or bend without the blasted thing  twingeing? ONLY two, or MORE weeks of  skin being demented by having the tubing taped to it? ONLY two, or MORE weeks of having to lie in one position to sleep?  ONLY two, or MORE weeks of never being able to believe signals from the bladder – “warning, I’m full, empty me immediately” which turns out to be “only kidding, not got a drop to spare” ? ONLY two, or MORE weeks of feeling every blessed bump in the road so that even the shortest journey is a trial?  ONLY two, or MORE weeks of wearing padding around my middle to protect the tube, which stops my clothes fitting properly?  Most importantly, ONLY two, or MORE weeks of having a bag of piss fastened to my leg?

It gives a whole new meaning to my alter ego of being a ‘bag lady’

I know in the great scheme of things my irritation and frustration is minuscule but even wee nightmares can spoil one’s dreams.

My other persona as Kate, the bag lady, in one of my favourite plays.

My other persona as Kate, the bag lady, in one of my favourite plays, ‘On The Outside’.

A Bit Of A MishMash

This blog is a bit of a mishmash with no proper overriding theme, but perhaps the almost-theme is little things meaning a lot.
Oct 23. I’ve been home a week now. The day after I was discharged we lost electricity.  We were offered hotel accommodation but we decided to stay home because we still had light and one socket by which we could brew up, charge phones etc.   So many little things couldn’t be done – by gum, don’t they all start meaning a lot!  We don’t realise how many things depend on electrical power until it’s not there.  A temporary fix was done the next day and a major repair will take place next week when once again we will be without power for a day.

It was a good job we stayed home because at 6.30am on the following day my nephrostomy wound started bleeding and I got the awful dread that Groundhog Day was back again. However, all was well eventually and it has been stable ever since, with just two days when there were tiny spots of blood from the wound. The drain has been working well and I’ve been peeing too, so I can be content that the left kidney is taking its share of the work. It’s funny how things like how much one pees and what colour it is, all start to matter and be worthy of remark. ( Pale amber aka ‘white wine’ is best ye ken.) Little things mean a lot.

Bodily functions dontarf gain in importance. When I was recovering from the first surgery I was in a lot of pain in my back and my abdomen became distended and hard. The former was as a result of damage to my ureter (see other blogs) and the latter because of trapped wind and toxins. Once I had a nephrostomy my kidney pain was eased and to my great joy I started farting which made such a massive difference to the rest.  Lesson from all that: never underestimate the importance of getting rid of flatulence folks – little farts mean a lot too. I reported it with great delight in texts to my partner and to the surgical team on their morning ward round – much to their amusement.

Small actions of support can be so valuable too. For instance, when I was first diagnosed, my partner immediately suggested we go for a drive to the Highlands, something which never fails to lift my spirits. When I am amongst the hills and the trees and the clouds and the water and oh! just absorbing this wonderful land of ours, my soul is fed and cares reduced.  11039845_10204965326752811_3696481917482359627_o

Feeding my soul in the Highlands.

 

 

 

 

How do I feel about the chemotherapy? Buggered if I really know. My first reaction was to be relieved that at least now I know what is ahead, the waiting was definitely the worst part. My second thought was to be very concerned about being sick – about which I was reassured – apparently nausea is not as much of an issue as it used to be, thank goodness.. I was not too worried about the idea of losing my head hair, although eyebrows and lashes could be tricky. I hope it means that my budding moustache and beard will go too and save all that pecky plucking (!).  That’ll be a little thing meaning a lot to me.  Since then have read more about the possible, and probable side effects, and it’s all very daunting, but with support from folk who have been through it themselves and others who will do their damndest to help, it should be do-able.  Allowing myself to get depressed would seem almost like letting them down, but sometimes staying strong is not easy.

One thing I am certain about is that I want to be rid of the external drain before starting the treatment. It’s a real nuisance having a bag of urine strapped to my leg (!), fitting clothes over the extra padding to protect the drain from getting knocked, and not being able to get comfortable in bed or in a chair – so I don’t want to be messing with that when I am feeling no-too-very-weel from the chemo. That may be a little thing to others but means a lot to me.

The main feeling at the moment is one of running on quarter power. It’s as though part of my umph-supply has been turned off. It’s probably a good thing because it seems to be preventing me from getting stir-crazy, but I am so very unused to not really being that bovvered about much.  Ach weel, I suppose my little things are going to have to mean enough for now.