I have come to the conclusion that my ‘journey’ as a cancer patient is over. It’s 13 months since the diagnosis, almost a year since the fateful surgery, and five months since the last chemo session finished so that’s enough donntcha think?
The reason for the second part of the heading is two-fold. One: because my ‘dance’ has been like a frantic Can-Can instead of a sedate Waltz, and two: I like to think of it as an anniversary of ‘can-can’ instead of ‘cannot cannot ‘.
I had a great holiday 20th August / 3rd September and, although I tended to crash a little each evening, on the whole I was chuffed with my energy levels.
In the last few days of the fortnight’s holiday I did notice that my eyelids were quite swollen but dismissed what has been my body’s warning sign for many years because I felt fine. Fine that is until the Thursday before we came home when I started to get UTI symptoms. I drank plenty of water with Bi-carb added which eased the discomfort and reduced some of the urgency, until a couple of hours after arriving home I started getting pain in my right kidney.
Long-story-short: Out Of Hours at St Johns hospital / high temperature, pain, sickness / admitted yet abloomingain with a kidney infection! I was discharged Wednesday afternoon after antibiotics had settled the Pyelonephritis. Meanwhile my veins have given up all attempts to cooperate with having anything put in them . They didn’t mind too much giving some blood but spat out two canulas on different days, both of which had caused mega problems fitting in the first place. However, despite being utterly wiped out by the infection, since discharge my energy has been smashing. At long last I feel like I am moving like ME and not some little old lady. Plus, my eyelids are no longer swollen. Mind you, my voice has gone AWOL again, displaying the stress that has been occurring. (Some folk are never satisfied!)
I had a NM Renogram with Diuretic today Friday . (NM being Nuclear Medicine which of course led to jokes about my getting the ReadyBrek glow). Radioactive stuff is injected so that a series of photos can be taken as the organs do their business. Obviously I don’t know how to read what I saw but it appeared as though my right kidney is not behaving as efficiently as its pal, but then is hardly surprising. I had hoped that this would be the last stage but methinks it is not yet after all, and will probably provoke many more blogs, but it is leading off on a different path – the cancer journey itself is done. And in any case , the year is complete and there is a limit to what can be writtten about it.
It’s been challenging from all angles, physically, mentally, and emotionally, as all serious illnesses are – cancer is not really much different. And see that . . . . . . . I wrote “illnesses” . For all too long I was refusing to accept illness – “I’ve not been ill, I’ve just had cancer” and even deleted the word after I typed it just now, intending to substitute ‘conditions’. Then I made myself reinstate it because that IS the case, doesn’t matter how much I want to deny it. So… maybe I am learning something at long last.
Okay, so sarcasm aside – what has been genuinely learned on this journey?
I’ve learned that the support of my partner and friends, both ‘real life’ and virtual friendships, has been absolutely essential for my sanity as well as physical wellbeing. The advice and encouragement from fellow-travellers being especially vital.
I’ve learned that my previous perception of this disease was distorted. Due to my mother living forty-odd years after her radical mastectomy, and my having a relative and friends who also are still surviving decades after their treatment for breast cancer, (not forgetting my own ‘nae probs’ experience of it nine years ago), I tended to have a ‘rose-coloured specs’ view of it all. This led me not to take onboard the many deaths of other relatives and friends as a result of their having other types of cancers, until this past year when the terrible consequences of this disease have been impressed upon me more and more. I am still positive about it, no question of that, but now it’s tinged with a bit more realism.
I’ve learned that having enforced time-off is a great opportunity to do other things. Mmmmm? Hang on – maybe that doesn’t quite make sense but anyway, I did manage to get two of my stories published and to develop new craft skills. It’s made me recall what I have succeeded in doing over the years too, and to be grateful for those opportunities, past and present.
I’m supposed to have learned that expectations cannot always come to fruition no matter how much one desires it. OK, that is something we all should appreciate as we grow up – it’s no great revelation – but there is still a tendency to keep hoping against hope. Still wanting to be able to do what I used to do prior to a year ago, despite daily being knocked back by reality of it all. Learning to pace oneself is hard going.
I’m still learning to listen to my body and pay attention to what it is telling me , even though sometimes it doesn’t seem to make sense.
I’ve had my tendency to be an assertive so-and-so, confirmed as an essential trait for a patient, as medics also have a tendency not to listen to the said patient unless she is very insistent. Short-story-long. 🙂
Me: “Ouch, that doesn’t feel right” Staff Nurse: “It often hurts a bit at first” – walks to other end of ward. M:”it’s far more painful, the drip must need to be slowed down” SN comes back:”It is quite slow already” M:”it is NOT right” [staff nurse looks under bandage holding canula firmly in its very dodgy position at join of thumb & wrist and sees that the tube is obviously so longer in the vein because the arm beneath it is swelling as the fluid has gone into the surrounding tissue sans vein] “oh!, I’ll need to fit another” M: “there’s no more veins available so, as it’s the last IV before I change to oral antibiotics, how about we just have it in tablet form?” SN:”Oh, I can try fitting another canula” M: “I would rather you didn’t, so would you ask the doctors if I can have the tablet instead please. It seems the best compromise”. Later – ” doctor agrees that is the best thing to do – here is the tablet” Hehemm!
Sadly this kind of thing has happened a few times over the past few months and far too many times over the years. I’m always polite, but I will not be treated like its none of my business. It is my body after all.
What concerns me are the patients who don’t like to make a fuss because they feel the nurse or doctor knows best, or in some cases are simply too poorly to bother trying to communicate for long. I’ve been in that latter situation as well this time, when I had not been put on the IV fluids that the doctors in the Out Of Hours departments wanted. I have managed UTIs for all my adult life and know the vital importance of flushing the system, but every time I tried to drink I wretched violently, bringing up nothing but phlegm and bile from what was am empty stomach. I tried to get the nurse to understand my concerns but failed and was too ill to keep persisting. I did have IV antibiotics so during the night had to keep calling on the staff to ‘unplug me’ so that I could go to the toilet – every 15 mins or so over a couple of hours (!) then very hour as the antibiotics must have started having some effect. (Why oh why do doors in hospitals creek and squeal so loudly ! Every time I went to the loo I made such a racket with two of the doors while other patients were trying to sleep!) I appreciate that the nursing staff can only administer what has been prescribed so wasn’t blaming them, but by the morning when I was not feeling so dreadful as I had overnight, anger overrode everything else and (still politely but much more firmly) I insisted that fluids should be given as originally promised. The nurse contacted the doctors then came back very quickly to say that they approved, and set up the long awaited fluids for me. Just a shame it wasn’t done when I first raised the issue. BTW: I am sure this situation would be the same in any hospital – no criticism of the NHS whatsoever .
I’ve learned to value little things like nose hair and eyelashes, and to accept what is happening rather than succumb to the pressure applied by a general perception that appears to want chemo patients to pretend nothing is changing. Be proud of the ‘survivor haircut’, and only use falsies or wigs or scarves if it makes YOU feel better. Don’t hid you light under anyone’s bushel..
Above all I really have learned that “This Too Will Pass”. Admittedly, sometimes the light at the end of the tunnel turns out to be an oncoming train, as indeed it did for me in the past few days, but most of the time it is a sign that the end of the awful current darkness is nigh. No matter how full of dread a situation is at the time, it will change, and the you who worried or stressed about it will metamorphose too. Hang on in there folks.
Thank you for coming on this cancer journey with me – now we’ve reached the journey’s end. To refer back to previous blogs – the fat lady is signing her last note.
I shall attempt to publish the blogs with Create Space Publishing, and any sales will go to Maggie Centre, Edinburgh.