So far, this cycle has been harder than all the others. I have had the return of symptoms not seen since cycle one (take a bow nausea and diarrhoea). The fatigue has been building to almost unmanageable levels. And the psychological shenanigans that have been going on in my head do not bear contemplating. Much of this has been down to an emotional turbulent time that has been unavoidable, some of which I mentioned here.
The Captain has been away plying our trade at a canal festival and I have missed both him and it very much. This particular weekend has been a highlight of our year for a long time. It marks the beginning of the end of the season and the last time we see many of other trading friends until the following one. I know there is always next year but I have missed this one a lot.
But in the midst of all this gloom, there is always good news. First of all, my belovéd macbook has resurrected itself! Five days in a large bag of rice seem to have done the trick and it is now working. Relieved does not begin to cover it.
Most excitingly of all, however, is that I have begun to grow hair again. This makes me feel quite smug. Like I have really achieved something. Why it should start now, while I am still actively receiving treatment is beyond me. Occasionally the demons hit me and tell me it is because the chemo is not working. However, there is no evidence that this is the case so in my more rational moments I chose not to believe it. Especially as I really rather like it. I am like a soft, fluffy brillo pad. The growth is uneven. As in some follicles have given birth to strands that are edging towards an inch in length. But these are isolated, not patchy. So the effect is weird. But it does feel nice. The wind can not exactly whistle through it yet but I have taken up with shampoo again. A little prematurely probably, but I do not care.
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.
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.
Being ill does things to a person’s head. The insides and the outsides do not match up. On the whole this is a good thing. The insides of my head are pretty messy. I lose things in there. But we all like to think we are generally ok. As in nice. Don’t we?
I cannot be alone in believing that when adversity came calling I would greet it like the heroine of a Victorian moral drama. I would be a Dorothea Brooke or a Jane Eyre. And when I fantasized about funerals and mortal illnesses, people would always admire the stoicism with which I conducted myself. My general deportment would obviously have something of the oppressed about it, but my inner bearing would overwhelmingly convey fortitude.
I do not recall ever thinking I would turn into a cow. That I would be reduced to snapping at my dearest friends; being a bitch to my husband; and generally turning into the Bridezilla of cancer to all around. Cancer has robbed me of my ability to function beyond a hand to mouth existence. In my need to focus on surviving, it is easy to forget common decency and manners. And the very people I love above all others get caught in the cross fire.
Being ill does not excuse this. It is acceptable to be exhausted. It is acceptable to struggle to function outside my bubble. It is acceptable to not cope. But it is not acceptable to take out my anger and frustration on those around me. The really horrible thing is, I would love to promise to be the Florence Dombey of chemotherapy but that is not going to happen. I am not going to morph into some angelic being who bears all with grace and serenity. I suspect I am going to be foul and loathsome.
Be nice to the Captain. He is going to need it.
Since the Lopping and Trimming took place I have had to adjust my wardrobe slightly. I knew that I would need to acquire a few Button Through garments and had a splendid time with Chummy purchasing some appropriate items during our Up Yours Cancer Lunch. These have been tremendously successful and I have added to the Button Through options with Step Into and Pull Up items which have also worked. Of course, while all this is marvellous for my limited arm mobility and the thin layers are great for the hot flushes, none of it is particular good camouflage for the uneven nature of my one and a half bosoms. And so I have become Scarf Woman. Sadly unable to leap buildings in a single bound I do not seem to have acquired any super powers but a scarf does distract admirably. And so I am embracing them.
I have even joked with several of you that Scarf Woman is my new Superhero status. Unfortunately, this is not true. Anxiety Girl really is more like it. You see, Thursday’s appointment is looming large. It is getting increasingly difficult to pretend that it is not happening. Thursday is the day the results from my surgery will be shared with me. Knowing that there are no cancer cells in my lymph nodes is massive and not to be underestimated. But that does not mean I am totally in the clear. On Thursday I find out what the rest of this year holds. It is hard not to be anxious about it.
And so I find myself back in Psalms. Actually I have never really left them. This time it is Psalm 25 as sung by Graham Kendrick and Matt Redman.
While I was still under the care of the local Breast Unit, I was deemed bonkers enough to require further support. And trust me, it was necessary to appear more than a little off the wall. I am ok with this. If ever being slightly mad was a sane response to a situation, then surely receiving a diagnosis of cancer is the perfect time.
The further support came in the guise of Complementary Therapy. The conversation I had with the Captain about it went as follows:
I’ve been referred for Complementary Therapy
Really? How exciting!
slightly surprised: I was expecting scepticism …
Why ever would I be sceptical? I think it’s marvellous that people are going to be nice to you.
confused: Nice to me?
Yes. You know, like: You look fantastic; I think you’re lovely; You have an incredible mind; I love the colour of your shoes; (And then, because the Captain is the Captain) Your tits are amazing!
Complementary Therapy that is complimentary. And all on the NHS. Marvellous.
I had a planning session today. Lots of things were on offer but we have settled on six sessions of reflexology. I have been promised more interventions should the hot flushes get unbearable once I begin hormone treatment. Which has not yet actually been settled upon but is looking more than likely. That settled I came away with a relaxation cd and two sniffer sticks. Which are exactly like Vicks inhalers. Only without the Vicks. These are filled with an individual blend of aromatherapy oils. I have one to snort as I drop off to sleep and another to help with anxiety. It was all pretty amazing.