You will be pleased to know I have been very diligent in the back exercise department. Very diligent indeed. I still cannot pick things up from floor easily but I am moving with far less discomfort and am no longer confined to the house. Hurrah!
My first trip out was, of course, to the hospital. It has been an age since last I was there. This time, it was to yet another department. I was in search of the Infusion Suite, for I had a date with Zolendronic Acid. You are jealous. I can tell. I have concluded that this is the worst signposted hospital in the history of badly signposted hospitals. As yet again, I had to resort to asking for help. I did get there and it was eerily like being in the chemo unit: comfy chairs, pillows to support arms, lots of drip stands, lots of IV pumps, lots of off colour people sitting around. But it was ok.
My biggest concern was my veins. Blood needed to be taken as well as a cannula sited and it became a two stage procedure as while my veins will put out, they are stingy and delicate in the extreme. However, a cannula was sited in the crook of my elbow and provided I barely breathed, it worked. Two hours later, I was good to go. When I saw Bones at the Osteoporosis Clinic on my last visit, she had warned me that I could expect up to a week of ‘flu like symptoms. I have experienced nothing as severe as this. So far, I have been a bit achey and a bit muzzy headed but that is all. And the joy of not having awful stomach pains related to taking bisphosphonates means I will take this anytime.
I already have my next annual appointment, 12th February 2018 – nothing like being prepared 🙂
I have been bad. And less than diligent in the exercise department. And now I am suffering. It will be sometime before I consider bending over backwards. Or forwards. Or any which way. Yesterday my bulging discs decided to bulge a little more and send my muscles in to spasm again. I am less than pleased with this development. Actually, I am extremely pissed off with it.
You see, I had plans. Yesterday evening was to be the first time I had made it to my book group since about June. I had woken with a migraine but with drugs and naps had managed to see that off. I did not feel brilliant but I was very determined. Then while bending to remove dinner from the grill, the now all too familiar pain exploded once more. I am so tired of having plans spoiled. Of having to rearrange my life. Of letting others down. Of being the flaky unreliable one. I just want to return to normal. Not a new normal. My old normal will do fine. I had felt like that was beginning to happen. I made my first batches of jam since March on Wednesday. I have been getting fitter and healthier and generally feeling more like my old self.
Instead of continuing this trajectory, the rug has been pulled well and truly from under me and I am back to doing hourly exercises. Pacing around because sitting is too painful. Lying on the floor when that becomes too much. And being far too tearful for the skin on my face to cope with. It all feels just a bit too much.
It was inevitable that it would come to this. That my back means sitting is more problematic has only meant I have given in sooner. I am now incapable of managing a day without some sort of nap. My excuse is that it is physio orders. You see, lying side to side is better than sitting. Lying on my stomach would be even better but that is unacceptable in the breast department. Would you believe I still have bruises? Rude. So side to side it is. And of course I fall asleep.
I would like to say I awake refreshed. But I do not. The dark shadows under my eyes remain unchanged and I have no more spring in my step than before. It is all rather irritating. Especially falling asleep when not wanting to. I intended to watch Murray’s game yesterday. I made it to the start of the third set and two hours later the Captain found me dead to the world with the BBC still streaming through my laptop and my glasses somewhat skewed across my face while I drooled and snored in oblivion.
The good news is my back is much improved. I have a great deal more movement and the exercises are doing their job. It is all I can do to manage the bare minimum but that is currently sufficing. My veins are more of a worry. On Saturday my arm swelled and several veins were clearly demarcated on the back of my hand and arm. Phlebitis was a possibility but thankfully all is calm again. They are very sore and the burning out process is clearly in progress. I really need to keep this arm going as having a PICC line is not an option thanks to my stupid allergies. Using my left arm is a bit like playing the lymphoedema version of Russian roulette so I would really rather not. Because I have only had my sentinel lymph nodes removed my risk of developing lymphoedema is reduced from up to 53% to up to 17%. Or a 1 in 6 chance. The same odds as Russian roulette. So obviously I am keen to avoid that. Anything that increases the pressure or pierces the skin on that arm increases that risk. As a result, my right arm simply has to keep going. It has to.
Remember this episode? Or the one where we bought and then the Captain made stilts for my invalid chair? Well today has an eery feeling of déjà vu about it. On the whole, I would say that I have been living on borrowed time. What with all the lounging around, lack of exercise and general poorliness. Tsk.
Having spent the morning in bed (bad), I got up, ran a bath, sorted out stuff to wear and then committed the most heinous of crimes. I removed my glasses and placed them on my bedside table. And that was it. Pain exploded. Breath forced from lungs. Muscle spasms slammed sideways. Oh goody. A kaleidoscope of memory synapses firing all over my brain as my experience of the 6th February came flooding back to me. The good news is that I appear to be able to learn from my previous experiences. My previous policy of ignoring it and hoping for the best proved to be a bad one. So this time, following the inevitable call to the chemo hotline, I dosed myself up on diazepam and diclofenac, put the vein heat pad to another use, dusted off the invalid chair, and dug out the exercise sheet. Physio Extraodinaire is also on the case and her advice, as ever, is invaluable. The Captain is in the shed constructing stilts for the new kitchen sofa. Whatever would I do without these people? Cry, even more, I think.
It is fair to say that I am more than a little pissed off by this latest twist in the tale. Is it not enough that I have chemo to contend with? Apparently not. Yesterday was a bad day for me. I was pretty miserable on the whole. Having cracked the halfway barrier and moved onto the two thirds club instead of feeling elated, I have felt overwhelmed by what is still left to tackle. Each cycle gets harder and the knowledge of what is coming drags me down. I have still be reading through Psalms. Lately I have found myself in a group of great praise Psalms which are, of course, well, great. But they have not been hitting the spot for me. Instead, I am finding much comfort in the unrelentingly miserable Psalm 88. Here’s a taste:
13 But I cry to you for help, Lord;
in the morning my prayer comes before you.
14 Why, Lord, do you reject me
and hide your face from me?
I love that this is included in the bible as it shows I am not alone. Because there are times when this is how I feel. It is a facedown flat on the floor moment before God. Even in the psalmist’s despair it is God to whom he speaks. I may not see God. I may not feel him. But I believe he is there. And therein lies my hope.
Not really a big surprise to find me up and writing at 5am today, is it? I did not wake until a whole hour after my usual 3am so that was a plus. And I slept relatively well up till then. But my mind, if not my body, has decided that this sleep thing is over rated. I can now be found in our somewhat drafty sitting room which I have barricaded against Storm Jake as much as possible: tea towels are stopping the gaps between the building work and where I am sitting and the fire is on full blaze. Remember my chair? Under Physio Extraordinaire’s instruction, the Captain has raised the height and the cushions have been adapted to accommodate my Amazonian stature. This is now so unbelievably comfortable I may never leave it. It is entirely possible that you will find me in ten years time, riddled with pressure sores and smelling of fish paste but I promise you, I will still not want to get up. And nor would you if you had been sitting on the equivalent of dolls’ house furniture for all of your adult life.
This whole chair thing came about because of my recent encounter with the Emergency Services. Dealing with breast cancer simply was not complicated enough. I just had to spice it up with slipping a disc too. Since then, I have been working on getting match fit in time for surgery. My list of exercises has been pawed over, read and re-read and carried with me everywhere. Given my aversion to exercise in general, what is more surprising is that I have actually been doing them too. From past experience (accident 2010 leading to two years of ill-health, 5 operations & chronic neuralgia) I know that my back is likely to suffer from the enforced rest coming my way so I have to do my utmost to get it fit. It is still stiff and sore but oh so much improved.
So onto today. I begin at 8am with a wee trip to my GP. I have yet to see her re the whole cancer malarkey but I am now thinking she may be feeling left out. After all, the rest of the medical establishment has had free access to my once (now less so) magnificent bosom for some time. Come to think of it, most of my corner of England seem to have copped a feel in the last fortnight. Given that my left breast at least, is now a limited edition, I feel it only fair to give her the opportunity. Plus, apparently I am now entitled to free prescriptions. Who said cancer does not have its upsides, hmm?
Then, of course, it is off to the All Singing All Dancing (here’s hoping it’s not pink) Breast Unit for what I sincerely hope will be a day of decision making and plan formulation. Surely that is not too much to ask? If I do not come out with a plan, I may be heading to the Captain’s shed because his bandsaw is starting to look awfully attractive.