Today’s hospital visit turned out to be long. We long ago established that I am over efficient in the arriving early department when it comes to clinic appointments. Today was no different. Actually, cancel that. It was different. This time I had permission to be early. You need a blood test, they said. Come early, they said. So I did. And was greeted with the following notice:
Patients seeing The Doc need to be aware that his clinic is running approximately one hour late
I arrived early. He was running late. Excellent. Still, the blood letting took longer than expected so that filled some time. My veins were not playing today. Which was a shame because the vampire stabbing me was effusive in her praise: ‘You are looking lovely today,’ ‘Your scarf is fantastic, did you tie it yourself?’ (I did ponder whether I could get away with, ‘No, I accosted a passing stranger and forced them do it’ but thought probably not), ‘I love that shade of lipstick!’ and finally ‘That’s a great top, where did you get it?’ (Matalan. I shop in all the best places, don’t you know.) On the whole, I think she liked me. Which made it rather embarrassing that my veins were feeling shy.
Once I finally got to see The Doc, he looked mortified when I gave account of my nausea etc. A pharmacist was summoned and a new cocktail has been prescribed. I did a lot of smiling and nodding during this consultation. I cannot remember for the life of me what has been agreed upon. As luck would have it, I do not have to wait long to find out! My blood tests show my cells have recovered sufficiently for the next round of poisoning to begin. This time tomorrow I will be feeling grim but one third of my treatment will be completed. Good news indeed.
As I suspected, the weekend has taken its toll. I. Am. Knackered. This is a tad irritating, but I standby my ‘It was worth it‘ attitude. I still managed to press on with most of my planned activities, although a theatre trip had to be postponed.
As well as catching up with friends, these two days have been all about preparing for the next week of incapacity. Now I have some idea of how being poisoned affects me, I can better plan. The Captain is pretty good in the holding the fort stakes but he does appreciate guidance. So I have drawn up a meal planned for the next ten days. The shopping has been completed. Most of the meals are done and in the freezer. Those that need to be cooked fresh have all the ingredients to hand with the recipe, page number and book all listed. This list is stuck firmly to the fridge door.
Besides meals, I have also prepared a series of easy to grab snacks for when I need to eat to keep the nausea at bay. Ginger is an ever present theme. I am well stocked with ginger snacks but you can never have too many so imagine my delight at having been given a ginger hamper 🙂 :
Just for completeness, for the past couple of days I have been troubled with sore eyes. Sometimes they leak. Sometimes they are dry. Always they are sore. It is not the end of the world. But neither is it pleasant. And today, I am back with the sore scalp. The whole lemming like hair situation seemed to slow up a bit once the Great Shave had happened. We could debate whether this was down to the lack of weight pulling on the follicles. Or we could assume my follicles had had a change of heart. Whatever the reason, this reprieve has been temporary. All things hair like are plummeting once again.
Finally, today, I have been reflecting on the whole of this first cycle. Tomorrow I see The Doc for a check up. I have collated a list of my most troublesome side effects to discuss with him. In particular I am hoping for some improving in my nausea management. And in the management of my exploding bottom. So, in The Doc we trust.
I am liking this whole Good Week malarkey. This weekend has been an absolute blast! The Captain had abandoned me – something about earning a crust – so my trusty and longstanding friend with a penchant for dragonflies came to stay. We used to share a flat as students so she is accustomed to living with me. Though it has been a while. Like, that was last century. So last century, we could not even see the millennium approaching.
This weekend was all about capitalising on my wellness. She arrived on Friday bearing gifts. While she unpacked, I opened the prosecco saying, ‘I’m not that good at alcohol currently’. The silence was palpable. If she wore glasses she would have peered over them and the look she gave me explicitly said ‘well, you must practise. Push on through!’ So I did. It would have been rude not to. She is my chemo guru. She knows what she is about.
On Saturday we drove to Chatsworth House and did Lovely Eating and Looking At Things while Walking About Quite a Lot. The chairs they put out for us were the same shade of purple as both my nail varnish and cardigan. Considerate, we thought. The evening was spent in Vegetable-like Contemplation of the Tellybox. To link the two experiences we watched The Duchess, a film about the Duchess of Devonshire and excitedly (don’t judge, I don’t get out much!) set out trying to spot glimpses of the house we had just visited. We failed. Clearly we should have paid more attention. Or maybe we were distracted by the gin. For it is a poorly kept secret that my gin habit has been somewhat diminished of late. In fact, I had inexplicably gone off it. I say inexplicably, because what better time to be drinking gin than when one is having chemo for breast cancer? However, my friend once again demonstrated her true worth by downing a gin with me. And you know what? It was bloody good!
Today, I have had a morning of pampering. First a massage and then a facial. I so love having friends who a) understand the value of alcohol and b) have skills! She has left me now. The house no longer rocks to the sound of raucous laughter. Instead, a satiated quiet has descended. I shall have to take my exhausted body to bed shortly but even if I suffer for the next couple of days, it will be worth it.
Yesterday’s yawn-a-thon did nothing to help my mood. By evening I felt a fog of despair descend over me. All I could think was ‘I feel well now, but in a week it will all start again.’ It is a truly depressing thought. And there are times when it is inevitable that it overcomes me. Last night I snuggled up to the Captain with tears coursing down my cheeks,
Me: I have to do it again.
Me: I don’t want to.
Him: I know. But I’ll hold your hand.
And with that, he dried my eyes and wiped my nose. Bodily fluids do not faze him.
Today the brain crap had lifted. I felt bright, breezy and happy once more. I had been warned that there will be times that I am struck down with miserableness. Realising it is a drug side effect is helpful.
Irritatingly this is not the only way chemo has been messing with my head. I had an email today from a company I ordered some anti-nausea stuff from during my very sicky days:
We received your order today returned in the post with a note from Royal Mail stating addressee gone away. The address which we had sent it to was: only the one I had moved away from 18 months ago!
Honestly, I thought chemo brain was something that did not happen until later so frankly, there is no hope for me.
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.
I could almost have Nina Simone singing alongside me today because once again I’m feeling good! It is true that I am more tired and I did not sleep brilliantly last night so I’m looking like I could pack for a week in the bags under my eyes. However, since nobody is looking at them, because they are all transfixed by my baldness, I can get away with it. The policy of loud lippy is definitely paying off. I have had so many compliments. I do not even care if it they are said with sympathy. I am just happy to have them.
Today I took my naked head out for a test drive. We had an appointment with a shrink to discuss the whereabouts of my marbles. I suspect if we do not find them at some point, she may practise her head shrinking powers. Which could ruin my look entirely. It probably comes as no surprise that I have been having trouble locating my marbles. What may be a surprise is that I have any left whatsoever. This was my third trip to Ms Shrinker. And I like her. I am always slightly concerned that I may trip over her at some point and crush her entirely. For she is tiny. Kylie is of Amazonian stature in comparison. Having a diagnosis of cancer is mad, so I say take all the help you can get. Be bonkers enough to get a psychology referral. There is no shame in it and so far, my tiny friend has proved very helpful. She has to be good. She liked my head. So obviously a woman of taste and discernment. Even if she is lacking in the height department.
Following this, the Captain and I have shunned dry land, untied the ropes and are chugging along the Curly Wyrley for a night at the pub. It is almost as if normality has been resumed.
Having gone for the shorn look yesterday I woke this morning sans headache, sans itchy scalp and feeling well. Sorry, I will just emphasise that again. I woke up feeling well. As in not ill. As in without sickness. It is precisely 12 days since that happened. I lay there for a moment just to take it in. And then had to leap out of bed as the need of my bladder was becoming too pressing!
I had slept with a sleep cap on – a small stretchy cotton beanie. Advisable, because while I have had my head shaved, I still have stubble. And it is still going to fall out. Wearing the beanie at least contains it. Just as well, judging from the contents. This morning’s bath water resembled the Captain’s shaving water – the tide mark was not pretty. But is is so much more manageable now.
I had to go out today to collect an order from M&S so the debate about what to wear, if anything, upon my head had to be settled. I started by applying make up. I felt some decent lippy was in order if nothing else. But I applied the nothing else too. That done, I liked the effect and was very tempted to go out uncovered. However, it was cold, and raining, and basically I chickened out. For my first hairless trip, I decided a covering was in order. I tried the wig. And dismissed it. Too hot. And too, well, hairy. Stray hairs kept floating over my face which was deeply irritating. So I moved onto the scarves. As time was moving on, I went with a bright red square scarf which I teamed with a polka dot navy & white headband simply because I knew how to tie that.
The outing was successful. No one gawped. No one tilted their heads at me. No one did a double take. I felt normal. Which, let’s face it, does not happen every day. I even felt confident enough to take on the Number 7 woman in Boots over their lack of parabens free cosmetics. Bad Boots. So, next time, no scarf? We shall see.
Once home, I did some more experimenting. The results:
Today the Serious Delinquent came home from galavanting across the country. For which I was truly grateful. She was as good as her promise and came round with the clippers and scissors as soon as I asked. You see, this morning I woke at 4am with my scalp on fire and my head dully throbbing. I dozed until a more civilised time and then lifted my head off the pillow with some trepidation. There were definitely more hairs there than usual. By the time I had my morning bath, the water was beginning to resemble hair soup. So the locks had to go.
So far, I feel ok about this. As soon as the bulk of my hair was gone, my headache lifted. And now, there will be no more looking to see if I have less hair. It is gone. It is no more. It is an ex hair do. Tomorrow I shall begin messing about with head coverings. For now, I shall just be relieved that my head does not appear to be too lumpy.
I am not known for piling on the slap. It is a bit of a high days and holidays affair for me. For that I blame my 2010 accident. Up until then I was quite happy wearing make up pretty much whenever I got out of bed. But a close encounter with a pile of railway sleepers and our drive left me more in need of make up than ever but less able to use it. Six years and five surgeries later (facial that is, we won’t count my boob jobs. I’ve never been inclined to slap the cosmetics around there anyway), I have permanent nerve damage and chronic neuralgia. For these reasons, I tend to avoid touching my face. Which means I have favoured the Au Naturel look of late.
This is all very well when it is possible to get away with it. But once my hair has taken the kamikaze plunge, my eyebrows & lashes have followed suit and my skin is looking more Morticia Adams than Nigella Lawson, I rather think I may have to take all the help I can get. As with the suncream and toiletries, I am choosing to avoid make up with parabens to minimise the risk of absorbing these oestrogen disrupting chemicals. This has not been easy, especially as I am on something of a budget and parabens are cheap. However, today I got my act together and went shopping.
This is actually big news. Mainly because it is the first day since chemo one that I have felt well enough to do something that was not absolutely essential. The original plan for the day had been to visit a National Trust property and wander around splendid gardens enjoying the fresh air and sunshine. But the air today is a little too fresh and the sunshine notable by its absence. So our thoughts turned indoors. Given that I am likely to be neutropenic at the moment the Captain vetoed my suggestion of visiting the big city indoor shopping metropolis. I was all gung ho with enthusiasm. He was not. It has more to do with his aversion to shopping than with any infection risk methinks. He still took me shopping. Just to more of a high street than a mall. And I found good ol’ M&S! Why they do not trumpet this, I will never understand but much of their Autograph make up range is parabens free. And currently on offer. Hurrah!
This little venture has not poleaxed me either, which is very pleasing. I am a tad on the lightheaded side and I woke with a dull headache. The indigestion has been kicked into touch by the adjustment of my meds and the explosions in the bottom department seem to have settled down. All in all, day ten is proving to be the best day yet.
Enter my present trouble, O God of strength & compassion. Protect me from despair and faint heartedness. Encourage me with hope. Make me strong in Christ , ‘the one at your right hand’ (80:17). Amen.
Eugene H. Peterson Praying with the Psalms
I think it is fairly clear I do not generally have trouble when it comes to words, either written or spoken. Except, possibly, using too many (my personal word mantra? Why use one when one can get away with ten?). But whenever life has been tough, I have found it difficult to pray. As a Christian, this is something that bothers me. Or it did. I gave up with being bothered some years back. I now believe this is the very time that others hold us up and that is why we are called to be part of a community. I am so grateful for the prayers of others which have been prolific and are ongoing. People I barely know and communities I have never been to are praying for me continually. And this is something that is available for all. Did you know, for example, that most (if not all?) cathedrals have prayer boxes where you can fill out a slip of paper and your request will be included the next time the prayers are said?
For now, while it is so hard to form my own words, I am finding great comfort in liturgy. This is an often overlooked part of my Christian culture though my church heritage is rich with it. I have frequently quoted Julian of Norwich on here, or Teresa d’Avila or even Psalms. Reading the words of others has allowed me a voice when my own can get no further than ‘O God!’ The prayer I opened with is one I read last night, when not only my personal circumstances were pressing down on me but I was feeling crushed by the death of Jo Cox MP. I did not know Ms Cox, but I am horrified that my country, the country that so proudly showed the world our inclusivity and diversity during the 2012 Olympic Games, seems to have descended to such hatred and bigotry. So I find myself once more turning to the words of others:
LIGHTEN our darkness, we beseech thee, O Lord; and by thy great mercy defend us from all perils and dangers of this night; for the love of thy only Son, our Saviour, Jesus Christ. Amen.
The Book of Common Prayer