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.
No not me, sillies! Been there, done that, have no need for razors. Except for my legs which continue to sprout undergrowth. Rude. No. This is about a fab all round bloke who just happens to be a friend of mine. He has very gallantly signed up to Macmillan’s Brave the Shave initiative. I am delighted my new look is inspiring imitation, which is of course, the sincerest form of flattery.
Let me introduce the amazing Adam Gompertz:
Adam is a petrol head, a blogger, a vicar, a whisky drinker, a talented artist and a bloke who is kind and makes me laugh. He also has a top quality wife who is more #wonderwomaninacassock than human.
So his locks are going. I am assuming the facial growth is also going but this has yet to be confirmed. Please consider sponsoring him to do this. Macmillan is an organisation very dear to my heart. Their support during my Dad’s last days was immeasurable and I have found myself the recipient of their knowledge and care during my own cancer experience. I am so grateful to people like Adam who are doing this sort of thing. Incidentally, while beating the fundraising drum, my best mate is hosting one of Breast Cancer Care’s Strawberry Tea Parties in a few weeks time so huge thanks to her too. Without Breast Cancer Care, who I rely on daily, this whole thing would have been much harder. If anyone local also fancies doing this I would be happy to donate some jam.
Anyway, to the important bit. To sponsor Adam, go to his Macmillan page here: https://bravetheshave.org.uk/shavers/adam-gompertz/ And all should be self explanatory. Thank you.
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.
Today I went without the slap, without a head covering and without much care. It was Just Too Hot. My appointment was for 9 o’clock so I had rush hour traffic to contend with. Rush hour traffic, 26 degree heat and a car with quirky air conditioning – it does not work in stationary traffic. This is where always being early stands me in good stead. Under normal conditions I would have been early. In these circumstances I was on time. You cannot know how much this pleases me.
That I am rapidly learning the clinic never runs on time is something I am untroubled by. The Doc is a man of grace and sensitivity. He gives time to his patients. I have been, and will no doubt be so again, the recipient of this kindness. Once aware of this, it is easy to plan for. I went armed with a large book. Last visit my book ran out. This was a crisis of epic proportions as I was forced to watch the video. Played on a loop is a compilation DVD of 1980s Top of the Pops. Initially this is quite entertaining. After a short while it is excruciating.
Today’s visit involved more blood letting. No compliments were forthcoming but this was fair enough. I had not made the effort. However, my veins played ball. Which was a huge relief. This cycle they have been getting more and more sore. This is not unexpected. Chemo burns veins. Nice. I have been doing all I can to keep them working. I have been rubbing them several times a day with a potion concocted for me by the aromatherapists of Complementary Therapy. I am using a stress ball to exercise with hand squeezes. I say stress ball, I actually mean a ball of socks. It seems to work. I continue to drink the equivalent of a small lake each day and increase this to a medium sized lake the day before chemo. And I am wrapping a hot water bottle and damp tea towels around my forearm each day which in this heat is, indeed, dedication to the cause. The Doc is prescribing me some stuff to rub on too. I am pretty sure Stuff was its actual name.
Seeing him was, as always, a joy. Not the reason for being there, I just always feel better having seen him. He was very pleased with the effect from my new drugs. Possibly not nearly as pleased as I was. We spent most of my appointment discussing my family history as some new information has come to light. As a result, I am being referred to the Genetic Screening Department to see whether this would be a good plan for me. This could take some time. But that is not a problem. There is no rush.
Having had some success with my proper wig, I have decided to embrace the opportunity for wig wearing. After all, why not?
Although free to me thanks to the NHS, I am quite sure my proper wig was not at all cheap. But believe me, it is possible to spend a great deal on even more marvellous wigs. However, it is amazing what one can find at the seriously cheap end of the market. I am now the proud owner of four full wigs: one proper and three coloured; and a fringe wig.
Did you even know such a thing as a fringe wig even existed? No? Nor did I until recently. The idea is that it is worn with a scarf (see bottom row centre photo) to create the illusion of hair underneath. I must admit it is quite convincing and having been secured with a little self adhesive velcro, felt very secure. It is a lot cooler than a full wig and seemed like a good option if hair is essential but it is frankly too hot to wear a proper wig. Unattached it looks more than a little weird. Like a giant’s eye lashes. But hey, I look pretty weird at the moment so who am I to judge? Incidentally, chest wigs, eyebrow wigs and all manner of other wigs are also available. Not that I have succumbed to them.
The coloured wigs were the result of an afternoon with a computer and too much time on my hands. But I LOVE them! The Union flag one means that I am, of course, Olympic ready. The red one I adore. I have always longed for long wavy red hair so could not resist the opportunity to try it out. Long wavy red nylon hair, it has to be said, is not quite what I had in mind and I am unable to wear this for long periods before becoming far too irritated by it. However the bright blue one has already been seen out in public. I wore it to our local Co-Op on Saturday and then drove to Shrewsbury in it. They are all a great deal of fun and at no more than £5.99 each did not break the bank. I just need to wait for some cooler weather to wear them. In this heat, I fear the nylon would melt.