Monthly Archives: July 2016

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.

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 .