Today is always an odd day. It is the day I feel most well. The day, if any, that I bounce out of bed with something of a spring in my step. So to waste it sitting in a hospital Outpatient Department always feels very wrong. That I am seeing The Doc is some compensation.
I had my usual vampiric experience which thankfully is still going relatively well. Today I discovered that as a chemo patient I can jump the queue. Well, hurrah! The chemo unit has its own exclusive vampire but they are only available during the morning. In a room that is little more than a cupboard. Without windows, appropriately enough. Given that my appointment was during the afternoon, I had to attend the main phlebotomy area. Here, there is a numbered ticket system. I took a ticket, number 36. I glanced at the display which read number 20 and inwardly groaned. At that moment an official person (possibly a vampire in disguise, it was difficult to tell) noticed my bright yellow lab form with urgent stamped all over it in red. You shouldn’t be waiting, she said. Really? I answered. Go straight through, she commanded. I scurried along the corridor in reply.
Thanks to the lab within the chemo unit, my blood results were ready by the time I made it into The Doc’s room. I had been worried about them as my pesky neutrophils seemed to be falling off a cliff. Last month they measured 1.5 having dropped from 2.32 at the start of cycle one. I had expected this drop would continue and knew that should they get as low as 1.0 my treatment would be delayed. Thankfully (and somewhat bizarrely) my count has shot up to over 2 again so delays are off the agenda.
The Doc & I talked veins a fair bit. Mine are hanging in there. They do cause me concern. The Stuff (also called hirudoid cream) prescribed last time has helped. As has all the massage, the exercises and the heat pad. The cream my complementary therapy team mixed for me has been pressed into service many times a day. This is a mix of 120g aqueous cream with 12 drops of both black pepper and juniper essential oils. I have no idea if it works but it does remind me to massage my arm using upward sweeps of my hand and small circular movements with my thumb along all the sore veins which is apparently the thing to do. All this seems to be keeping them just about in working order. In other circumstances I would have requested a PICC line at the start of treatment. But my circumstances are such that I am allergic to all the dressings generally used with PICC lines. The Doc is keen to keep going with peripheral access given my allergies. I know things will get worse but hopefully they will not grind to a halt. Time will tell.
I left The Doc with a lipstick mark on his cheek and headed off to finalise my preparations for my fourth date with the poison.
I have been taking my decision to doing more walking seriously. And much to the Captain’s dismay, no leads have been involved. It has helped that the weather has been so good. Last week we managed to visit not one but two National Trust properties and chalked up over 6000 steps at each. Given that seven days previously a mere 250 steps left me gasping for breath, I was pretty chuffed with this. True, I needed a rest day after these performances which feels a bit pathetic. But that is just how it is.
Today, we went blackberry picking. Being something of a forager, this is as close to my day job as I get. And it was wonderful. Blue skies, slight breeze and fat jewel-like berries glistening in the sunshine. We picked beside the canal so it really was a little piece of normality. The only downside was the need to pick carefully. Normally my hands look like they have been shredded. And I spend the evening picking out prickles that have embedded themselves in my skin. Today I was very cautious. The last thing I need is a blackberry acquired infection.
I am shocked by the fatigue that is continuing to creep up on me. It is not much fun having it poleaxe me on a regular basis. Particularly as it seems to disrupt my sleep too. Yeah, that makes no sense to me either. On the whole, I have felt well for more days this cycle than last I think. My first week was rough, but thereafter it has really just been exhaustion that has been the major issue. I do struggle with sore eyes, sweating/hot flushes, indigestion and sore veins but these too will pass.
At the risk of becoming a hair bore, I still have things to say. I continue to find myself shocked by the outworking of the delights of chemo and hair. For example, I am still, STILL having to shave my legs. This seems grossly unfair especially coming hard on the heels of the gradual thinning of my eyelashes. But what is even more bizarre is that this morning I found an inch long hair growing out of the centre of my neck. In the region of my adam’s apple. I mean, what is that about? This is something new. Trust me, I am obsessively familiar with all the facial hair I sport and this one is a very unwelcome addition. All my others have gone the way of my other hair. Even the moustache so lovingly referred to by the Captain.
Perhaps it is something do with altitude? The further up my body, the less prolific the hair. Glancing at another area, the Captain said: ‘It’s not exactly a Brazilian is it? More like a near neighbour, an Ecuadorian perhaps?’ Not sure it will catch on.
While on the subject of hair, the lovely Adam completed his Brave the Shave challenge yesterday and we were there to cheer him on. It is still possible to sponsor him so please consider doing so: https://bravetheshave.org.uk/shavers/adam-gompertz/. My treatment has been greatly assisted by Macmillan as every Breast Care Nurse I have seen, and continue to see, is funded by them. This is much the same countrywide. Without Macmillan’s sponsorship, Breast Care Units would be very different places. So thank you, Adam, people like you are making cancer treatment a much better experience than it would otherwise be.
Scene: Boat, late morning, still in bed.
Me: My legs are aching.
Cap’n: Oh? Poor you.
Me: I need to stretch them, you know, do more exercise.
Cap’n: Really? Sounds a bit drastic.
Me: I know. Needs must. Can you take me for a walk?
Cap’n: OK. Do I get to put you on a lead and shout ‘Walkies!’?
Me: Let’s just say you’d only try that once …
We have gone boating. We have shunned the land. We are at one with narrowboat. So at one that the current deluge is doing nothing to dampen our spirits. I say ‘we’ … I am currently draped full length across our very comfortable sofa while the Captain mans the helm. It is very English summer holiday weather: grey, drizzly, a tad chilly but obviously we are dressed in tee shirts and shorts. On the towpath, pedestrians huddle under bridges or hurry by head down in brisk fashion. Cyclists spray dog walkers with mud as they hurtle past. Fishermen hunker down among the reeds with only imaginative dreams to accompany them No, really, it was THIS big!
Beyond the towpath are hedgerows packed with pink rosebay willow herb, bindweed trumpeting her flowers and creamy meadowsweet vying for space. Honeysuckle spills over hedges. Tall stinging nettles grow up to greet low hanging hawthorn, ragwort splashes sunshine colour next to cow parsley bobbing under raindrops. Along the water’s edge red clover reaches down into the canal, greater celandine peeps out of the brickwork, graceful reedmace stretches skywards. Then carpets of yellow water lilies are paddled through by families of ducks. A solitary heron stands sentinel. Another narrowboat is moored, its roof lined with winter timber.
All this I see through the soft focus of my rain dappled window as I sip my rooibos earl grey from its china mug. The woodburner squats comfortingly in the corner of the cabin. It is not lit but still creates an illusion of warmth to the room. Our night will be spent near a pub where we will enjoy the food and possibly a bevy or two. And then our watery home will rock us to sleep.
You can see the appeal.
I am not sorry THAT week is over. For reasons that I do not completely understand this week has been, erm, interesting.
The initial side effects were much like they have been all along. Nausea still under control, phew. But the rest – the aches, the sweating, the hot flushes, indigestion, bloating, general unwellness – they were all magnified. And as for the fatigue. Oh. My. There was a point on Sunday when I was eating lunch and my jaw was just too tired to keep working. And I was eating soup.
However, what has been a lot more interesting has been my rate of recovery. This time in cycle 2 I was still feeling pretty rubbish. Currently I am definitely tired. I fall asleep a lot. I am low on stamina. But I made it to the Becoming Bendy class yesterday. And generally I feel pretty well.
On the whole I would say this is a good thing. I’ll take more intense side effects for a shorter period. Of course, it could all change next month, but for now, this is good.
In essence, I am an extrovert. This is hardly the revelation of the century. I would clarify it by saying I am an introverted extrovert. If such a thing exists. By this I mean, I enjoy people. I love company. I gain energy from being with people but I do not much like being the centre of attention. I am far happier organising someone else’s birthday party than having one myself, for example. The Captain is my polar opposite. He is a loner. That we muddle along so well is testament to opposites attracting. His idea of hell is endless time with people. Mine is endless time alone. And therein in lies my problem.
One of the unexpected side effects I have struggled most with is the inherent loneliness that comes with chemotherapy. Like most people, I am finding a pattern to each cycle. The first week leaves me feeling ill in pretty much every way imaginable. There are times when my arms ache so much I cannot hold the telephone for long. My concentration span resembles that of a goldfish with ADHD and I fall asleep at the drop of a hat. But this passes. The second week I still struggle with exhaustion but am able to do more. However, this co-incides with me being unable to go places due to my risk of infection. And having seen my blood results, this is getting progressively worse. So I am housebound much of the time. I can receive visitors but not go places like coffee shops or cinemas. Finally my last week arrives, the celebrated good week, when I try to do at least one lovely thing. My lovely thing or things have to vie for space among the minimum of two (sometimes four) trips to the hospital that also occur during this time. And then it all begins again.
This pattern means there is a danger I can go for nearly three weeks without seeing a non hospital related person. Apart from the Captain. But if he attempted to be my one man entertainment centre twenty four hours a day, I think we might kill each other. As mentioned before, FaceTime or Skype video calls have been my salvation. At least this way I get to interact with someone. And thank the Lord for social media. But I do miss real flesh and blood people.
As I keep telling myself, this is only for a season. It is finite. It shall pass. I am half way through. There are times though, there are times.
Today it really is our wedding anniversary. We celebrated it early with lunch a week ago as it was obvious chemo was going to trump celebration today. And it really has. But quite frankly, even the grimmest of anniversaries is better spent with the Captain. He is my kind of wonderful. He colours my black and white days. He makes me laugh when all I feel like doing is crying. And me? I am his trophy wife. He told me so. And who am I to argue?
The Captain is sick. He woke with a sore throat. ‘It’s because I’ve been snoring,’ he said. How did he know, I wondered. There followed a comical scene where I tried to examine his tonsils and he did his best to obstruct the view by contorting his tongue into all manner of implausible positions. He says this was involuntary. I am inclined to believe him. But that is because I am kind. I used to be a nurse, you know. I am trained.
By lunch time his It’s Because I’ve Been Snoring sore throat had got worse. He was also coughing and sneezing. ‘It’s because I have hay fever,’ he said. ‘Hmm,’ I replied.
By tea time he was snoozing on the kitchen sofa next to me, a hankie clutched at the ready. His It’s Because I Have Been Snoring and Have Hay Fever sore throat had not abated. I turned his head away from me. Tonight I have banished him to the spare room.
I dislike being so paranoid.
In side effects news I have new symptoms to report: achy knees! How bizarre is that? I even resorted to a hot water bottle yesterday which did not help my other new symptom. Sweating. Unbelievable, head to foot, drenching sweats. I am sure they are related to the absence of oestrogen but it would seem that chemo three has danced on that parade and cranked up the handle several notches. Otherwise, apart from the usual tiredness, indigestion and wind related incidents I am fine. So far.
… Woah, livin’ on a prayer’. Thank you Bon Jovi. Truer words were never spoken. Well, not the bit about Tommy and Gina. Actually, just the chorus. Not exactly my belovéd Teresa or Julian but ‘t’will suffice
I am on something of tight schedule as any minute now I shall be poleaxed by the chemicals coursing through my veins. But just now I feel a tiny little bit jubilant. Halfway through feels significant. It was not all plain sailing today though. I nearly disgraced myself. Tears spilled and there was a danger that I would lose total control. It is weird the things that tip one over the edge. My cannula was painful. Not painful as in needing analgesia. Or needing re-siting. Just a bit sore. But that was enough. It makes me realise how tenuous my grip on control is. I did manage to rally. I know it is perfectly acceptable to fall apart. However today was not a day I wanted to. My chemo chair was in the most public position, directly in front of the main doors, and with those waiting for spaces sitting only a couple of feet from me. All very on show. I could not have even drawn the curtains around my ‘space’ without sweeping in three extra waiters. This may not have been a good idea. I did not try it. Perhaps next time I should? There may be some who would enjoy a private showing of Blubbing: How to Cry – a short sketch including leaking facial orifices. Mercifully it was all short-lived. Possibly thanks to the other song echoing round my head: Boogie Wonderland. No. I have no idea why either. But it is impossible to be downhearted for long while this is playing in your head.
Once the Epirubicin ran through my pump, I started to get palpitations. Not drastically but not altogether pleasant nonetheless. My nurse was not unduly concerned as my blood pressure was fine. They kept me an extra 45mins to be on the safe side but by then all had settled down. Bit weird though.
So now I am back home, eating delicious home cooked biscuits from a darling friend, drinking pints of rooibos tea and about to crack on with the Ally McBeal box set my sister lent me. Over and out.