Hello again. Did you miss me? You just knew that I could not shut up for long though, didn’t you? It appears I need this blog more than I thought. Recently I have read a couple of other blog posts (here and here) on post treatment life which greatly encouraged me. I am not alone and that is really rather lovely. Thank you Sue & Laura ❤
I have decided this Return to ‘Normal’ Life is overrated. I seem to run better at the 2.3 miles per hour life on the canal afforded me. Since arriving back on dry land exactly 2 weeks ago I have been brought face to face with just how knackering everyday life is. Granted I have had my Mum with me since she has been recovering from cataract surgery. And that has involved trips to and from Oopnorthshire a couple of times. But even so.
Life post chemo/cancer treatment should not be about constantly avoiding one weepy outburst or another. And yet that is what seems to be happening of late. I am only ever one tissue away from becoming totally overwhelmed. I know this means I am too tired but managing that is not something I am doing very well at. Apologies to all and any who have been on the receiving end of one of my episodes. I think, basically, I should not be allowed out. Or allowed in. I think I should probably be confined in a darkened room, though that is worryingly appealing …
Thanks to Exemestane, every night’s sleep is broken multiple times which makes me think I never sleep deeply. Then again, it may not be the drugs, it may simply be good ol’ chemo fatigue. I career from one obligation to another without ever really feeling that I cope with any of them. I can control a certain amount of stuff, but not the relentlessness with which the unexpected occurs. I seem to only have the energy to cope with a crawling hand to mouth existence when really I would like to soar.
One day, maybe, perhaps.
I should add: I have a friend. He was receiving treatment for cancer a few years ago when I first met him. He experienced all sorts of knackeredness for some time after his treatment ended. This summer at an event we both attended, while I was snoozing in my bed, he was strutting his funky stuff all over the dance floor. He is my Ray of Sunshine and gives me hope.
There are two things I have been getting up to without telling you. Both relate to my recovery. Both are about progress. I hope. Both exhaust me. But so does getting out of bed so that is not news.
First up, is Breast Cancer Care’s Moving Forward Course. As I approached the end of my chemo I had a sort of mental tick list of Things to be Done. And this was on it. I did not stop to consider whether or not it would be beneficial. I just signed up assuming it would be. I am now half way through the four weeks. For the past two Monday mornings I have been found in the building where most of my midwifery theory was delivered. It is more than a little strange being back there, especially under such differing circumstances. So far, I am not sure I have learned anything new. For me, the benefit has been to be in room with nearly twenty others who have been treated for primary breast cancer. We are all at differing stages of recovery. I think I am the most recently out of chemo, most seem to be about a year on from active treatment. The best moments are when one person voices a concern or expresses an opinion and a ripple of recognition or agreement trickles round the room. We have much in common.
Secondly, I have been tackling my hot flushes. Or rather, my hot flushes are being tackled for me. Remember the lovely Complementary Therapy team that I had been referred to? From them I received reflexology treatment during each chemo cycle and it was wonderful. Having completed that, they then signed me up for Auricular Acupuncture to treat my hot flushes which are still a sight to behold. At times, my glasses steam up, such is their force. Auricular Acupuncture has a good reputation for treating hot flushes so when I trotted along for my first session on Wednesday, I had high hopes. There were four of us being treated and we were arranged in chemo style recliners before having both ears stabbed with five needles. The initial discomfort soon wore off and the next thirty minutes floated by in a dim lit haze to waft-y pan pipe-y music. Keeping my eyes open at the end of the session was harder than usual and I foresee sleeping overcoming at some point during the next seven sessions. Already though, I have noticed a difference. I have still had some ferocious flushes but overall they have been far less.
My only other news is that I am tireder than a tired thing popping tired pills at the Tired Olympics.
This is now officially my ‘good’ week. Only I am discovering that my good week is becoming condensed into a shorter and shorter space of time. I do not much like this turn of events. I feel cheated. Generally I like compartments. It pleased me that this chemo malarkey could be neatly compartmentalised into three lots of one week: first week – yuck, second week – improving but still off, last week – good, well and generally on fair form. It is neat. Tidy. Structured. I like that. Well, not the feeling yuck bit or the ‘off’ bit but you know what I mean. Now, it is far more messy. My yuck bit is still predominantly confined to week one but my off phase has spread all over the place. It has rudely invaded week three and stomped its muddy boots right across it. Basically, I feel rubbish. And I am tired of feeling rubbish. Sick and tired of it.
I saw Ms Shrinker this week. I told her how tired I was. I believe I may have wept. This will have pleased her. Progress, she will think. She was lovely. I am very conscious that a great many people have a far rougher time on chemo than I am having but just now, I am finding it so very hard to cope. I mentioned earlier that the half way point did not fill me with glee. I still feel I have a mountain to climb. Ms Shrinker reminded me that it is not a competition. I do not need to measure myself against others. My experience is mine. Theirs are theirs. All are valid. Chemo is vile however you look at it.
My trip to Ms Shrinker finished with a visit to the Complementary Therapy team for a spot of foot rubbing. Which was a little bit of heaven. I left with two wee roller ball oil thingies: one for fatigue (grapefruit and bergamot) and another for sleep (blue chamomile and lavender). Both perfect.
This weekend I was meant to be driving to my Mum’s but I cannot make the journey. So, bless her heart, my Mum has swept down from Oopnorthshire and is visiting me. We will be making a trip to my sister’s for some more family togetherness which I am in sore need of as a change of four walls will be welcome indeed.
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.
This could be me in a few days. Seriously. I have signed up for a Cancer & Yoga class. I do not think we take our cancer out and contort it into implausible positions but it is a thought. No. Rather it is billed more as a Gentle Stretching for The Incapable Among Us. Or something like that. I am quite looking forward to it. I have long been told I need to do yoga or pilates or some such thing as I have no balance and little core stability. For example, I cannot stand one leg. Or rather, I can only stand one leg while leaning against something. The days of giving my impersonation of standard lamp have lapsed. I did revive this performance only yesterday for a one woman audience but it was a sad shadow of its former self.
The Cancer & Yoga class is happening at my local Cancer Support Centre. Who knew such a place existed? I have only recently discovered it. For a small fee I enrol and am entitled to all manner of classes and whatnot. I also get access to even more complementary therapies than I am already currently in receipt of. I suspect the yoga class is the only thing I will do regularly as everything does involve a further fee. My hope is that the stretching will help with the very taut muscles left in my back following my surgery. Periodically they become quite uncomfortable and I really need to do something about them. The class meets on a Wednesday which is theoretically my best day of the week. I am hoping to be back from seeing The Doc in time for me to start this week.
Meanwhile, I have been a tad busy. Hence the silence. My Mum came down for a few days which was lovely. She has been itching to get her hands on me since I started chemo and finally all things came together. As always she was a whirling dervish of maternal care and energy. I have also been relishing my ‘good week’. I visited a friend in Shrewsbury yesterday (bliss!) and the Captain & I celebrated our wedding anniversary a week early. I shall be somewhat in disposed come the actual day so we had a fabulous lunch together on Friday while I was still able – carpe diem and all. What has struck me this time around is how much tireder I am getting. After a day of activity I have been too tired to do anything. Even write. And that is so not like me!
No, I have not suddenly found the zippity part of my do-dah day. But I am feeling a little more spritely. There is nothing like watching wall to wall sport to make one feel quite perky. Actually, this is a new discovery. Sports do not greatly feature in our household. We make exception for international football and rugby but Wimbledon is when sports fever really takes hold. It says something that on realising my second chemo happened during week one of Wimbledon, I was really quite pleased. It is the perfect excuse to sit glued to the television.
Even our television has noticed the increase in viewing hours. Several times now, a notice has flashed across the screen announcing ‘This television will go into standby mode in 60 seconds. Hit any key on remote to continue watching.’ How it manages to display this while exuding condemnation is a mystery. I am being judged by a piece of audio visual equipment. It is a sanctimonious set. But I do not care. I shall wallow in my watching and gloat in my gazing. For Wimbledon is but once a year.
Today I have relished the Federer / Cilic match and exhausted myself to Murray and Tsonga. Now Wales are playing Portugal in Euro 2016 so I am embracing my one eighth Welshness and cheering them on. Perhaps if my Welsh blood were stronger they would be doing better. The score is currently Portugal 2 Wales 0.
From all this, you will gather that I am much improved on the previous couple of days. The pattern seems to be that days 4 to 6 are challenging in the energy department. This is helpful to know as forewarned is forearmed etc. etc. Today I made it out of the house. I took my wig fringe on an outing. We went first to Aldi and then to the GP’s. Such excitement. The outings may have been dull but the fringe was something of a success. Cooler than a wig but still involving hair.
Today I just feel rubbish. I have no specific symptoms other than total knackeredness and complete pole-axedness. I have been in a semi-recumbant position on the kitchen sofa watching Wimbledon pretty much all day. Apart from when I was hiding from the cleaners. I do not usually hide from them. I love them. But one had a cold so it seemed wise.
Everything just feels like hard work. Even getting off the sofa to walk to the loo. You will be pleased to know I am, however, still making the effort. One has certain standards.
It was inevitable that the euphoria of the past two days would wear off. I was so thrilled at feeling well, I was almost manic in my excitement. Not so much today. Whether it was the relaxation of being onboard our watery home or what, I do not know, but today I have basically done nothing but yawn my head off.
My soporific state was not helped by ending up staying indoors all day. I had forgotten to pack the sun cream. While the sun was not exactly blazing, it was peeping through the clouds and it was warm. My Dad was forever sun burning his bald head. I am determined not to burn mine. However, tiredness aside, it was a lovely twenty four hours of boaty bliss. We ate in the pub last night and I nearly managed a whole glass of wine. This inability to consume alcohol is going to have to be rectified at some point. Today we tootled back to the boat mooring and are now back home.
I am now entering the so called ‘good week’ of the three week treatment cycle and hoping to make the most of it. No new side effects should be popping up and I should just feel increasingly well until next Thursday when the crap all begins again.
Today was a day I had heard a lot about on the chemo grape vine. Oh yes. There is one. We talk you know. Up until today, I have been taking steroids. These pesky little blighters have been giving me the jitters and shaking me up a bit but they have almost certainly have given me energy too. People talk about today leading to crashing energy levels and total exhaustion. I was not looking forward to it.
But, I reasoned, it is only my first cycle. Chemo is cumulative so I really should not be that exhausted yet. Plenty of people manage to carry on pretty much as normal. Many even keep working.
All I can say is: pants. I. Am. Knackered. I know it will get worse. I know however tired I feel now, it is nothing compared to how I will feel after cycle 6. But really, that knowledge is not helpful. I have spent the day yawning. Or half dozing. I did make it out of the house briefly but nearly fell asleep in the car on the way home from buying a dozen eggs, a loaf of bread, 4 cheese scones and a pair of Sea Bands. Just as well I wasn’t driving.
However, I am no longer nauseous! Let joy be unconfined! My mouth is less sore – more rejoicing. And apart from the tiredness, I actually feel quite well again. Hurrah! This afternoon my scalp has been quite tingly which is the oddest sensation. Whether that is a herald of the Great Shedding, or whether it is linked to my afternoon researching hair loss remains to be seen. It does seem early. But I have fine hair and apparently that tends to go sooner rather than later. Day 5 seems a little early though.
I have so nicked this title from my mate. I probably could not have punned that on a good day. With all my neurones firing. And today I confused ‘ordinarily’ with ‘normally’ when talking to the Captain:
How many jars of jam would you get with this recipe, I seem to have more than I expected?
Well, normarily I get about one more jar than you have.
Fortunately, he speaks fluent me, so we were good. It even took a while for me to compute that I had conflated two words.
Today I have been grumpy. And nauseous. And tired. And nauseous. And cold. And did I mention nauseous? I have been tired too. Which is odd because given how much I have slept, I should have been gambolling about like a spring lamb. I slept all night till 7am, then another 2-3 hours this afternoon. And guess what? I am still tired! Where is this buzz I hear the steroids give you? Actually, I do get that. It is not pleasant. More of a jitteriness than energy I have found. I am managing the nausea better. And I think it is improving. Food is essential, little and often. I shall be the size of a barrage balloon by the end of this with all the nibbling. It feels very counterintuitive to eat but it definitely helps. And all things ginger are a must. Ginger beer, ginger nuts, ginger tea, ginger cordial, crystallised ginger, ginger water. If it has ginger in it, then I’ll knock it back.
Today I was hoping to investigate the possibility buying some Sea Bands but forgot at first, then felt too lousy and then was asleep. I should have just asked the Captain. But I forgot to do that too.