pollygoshview

Pointing and Laughing at Chemo and thus at me VOL 1

Disclaimer: If you are about to undertake Chemo perhaps have someone vet this blog post before you read it.

I think all these will carry the above disclaimer….

Chemo has a bad reputation. Sadly, unlike the girl you went to school with who just happened to develop quicker than everyone else, it’s deserved.

I’m finding it a little hard to gather my thoughts on the subject and be funny. So I’m writing some vignettes about my chemo time; just little stories to keep us all going, time has made them funnier but they might be strangely useful too.

I think I finally gave up around the point in the visualisation exercise where the whimsical, soft voiced woman asked me to “feel the wind in my hair”.

It was then that I decided I wanted to flunk out of Chemo School.

To be fair to both the Nurses running the class and myself, a series of unfortunate incidents meant I was caught entirely off guard when I found myself at the door of an airless and windowless room in the Oncology Department.

This for starters seemed strange to me; any building to do with Cancer, is always bright and airy. I’d go so far as to say that the bleaker the illness, the brighter and lighter, the space (in my limited experience). If windows are not forth coming, weirdly cheery wall stickers may be used but mostly cancer folks are guaranteed some windows.

I suspect it’s because no hospital or political party will ever get a kicking for spending resources on the Cancer Wing. I know this because if you read the UK Parties manifestos at the moment most, if not all, mention beating / leading / ruling or in some other way whooping Cancer’s Ass. Cancer and/or Dementia may win someone an election (or not).

So yes, Cancer is the Switzerland of diseases (except for Smoking induced Lung Cancer which causes much controversy – it is possibly the North Korea of cancers, but that’s another story).

The unfortunate incidents are boring really, serving only as a reminder, as to why you need to chase up appointments. It turned out, that someone thought I was a few appointments ahead of where I actually was, on the Chemo pathway. A bit like when that person told you what happened at the end of the nail-biting series you were two episodes shy of completing. Only possibly worse, though I don’t want to judge, people feel very strongly about Broadchurch.

It is understandable that occasionally these situations occur, especially when you consider the pressure everyone involved in our NHS is under. However, it is also not the funnest situation to be in. On my Cancer journey thus far, I’d give it a 4 – where 1 is finding out I had cancer and 10 is finishing treatment.

Anyway all of this is leading us very far away from Chemo School and meditation. Suffice to say, to my knowledge nobody puts Cancer in the Basement. I was slightly intrigued then, when I was ushered down the stairs, closely flanked by my beloved men. Though, I thought I was probably going to have another scan. Scans are kept in the basement.

The door swung open to reveal a room full of grey, shell-shocked types, instantly recognisable as the newly diagnosed. There were a few loved ones too but only one per person, my two was now making me feel, as close as I’ll ever come, to a famous type with an entourage.

We were late so we squished into the room still none the wiser as to why, exactly, we were there. It became apparent all too quickly, that this was Chemo School.

We would be ‘vaguely’ running over the ups and downs of Chemo; ‘vaguely’ because while I didn’t take a straw poll, I’m pretty sure my fellow students (both male and female) were not all Breast Cancer People.

Specifics were shied away from; too many Chemo types, too many possible side effects. The dreaded phrase “including but not limited to” was used. Be wary of this phrase. Used when there are SO many side effects. It is often quoted by a thoughtful looking medical professional, normally when you show them some bit of your anatomy that is dropping off / turning blue / not behaving like usual. “Hmm, yes that’s not unheard of” comes the response “we normally just give you the headlines but it’s not limited to those symptoms”.

As would become sadly usual in the coming months; bowel movements, vomit capacity and all number of bodily fluids were touched upon. The tone used to broach these subjects irked me. In much the same way as the phrase “spend a penny” or “had an accident” irks me (both of which were also used, if I recall correctly). It’s an apologetic tone; the chin goes down, the eyes lowered, awkward shuffling. These are medical people for crying out loud; if you can’t say shit or poo, can we at least use faeces? I’m pretty sure that, is at least, in medical dictionaries.

(side note: A friend once told me that a nurse told her, that medical professionals are now not allowed to use the phrase – when referring to injections – “a little prick coming” and that “a little scratch” has to be used instead, for fear of offending!)

It was at this point in proceedings the elderly gentleman next to me started shifting uncomfortably.

Poor chap, things were about to get worse; “libido” was up next. Nothing specific, same apologetic tone, same airbrushing over the details. It would have been frustrating, I’d imagine, for anyone seeking actual advice and here comes the kicker; At each stage of this interminable process we were told several times that “Questions were welcomed”.

This got me on a number of levels

1) The delicate and embarrassed handling of these slightly fruity topics did not make me feel I could pop up a hand and ask a question related to my bodily functions or sex. I was in a room full of strangers and embarrassment breeds embarrassment. Also MR 80, sitting next to me had cancer, he did not need to die of a heart attack.

and

2) I WAS FLANKED BY MY DAD AND MY BOYFRIEND.

Now, I’m a 35-year-old woman; old enough to have sat through a few risqué and unexpected movie sex-scenes, while sitting with a parental. I’m mature enough to handle it reasonably comfortably.

I’m also mature enough to admit there are times when (shush) I’ve wanted to be perceived as alluring and sexy. At this moment in time, I was just about coming to terms with the butchering of my body, the weight gain and the loss of hair that would follow but it hadn’t happened yet. I STILL wanted to be seen as sexy by my boyfriend. It was important to hang on to this for as long as possible.

So under no circumstances could anything have induced me to put up my hand and ask about ANY of these topics.

The nurses seemed disheartened that no one was asking questions. I am a people pleaser but still I couldn’t bring myself to ask anything. Imagine! I mean where do these people think we are? Some beautifully open Nordic Country, at ease with nudity? We’re British for crying out loud!

I feel I need to mention at this stage, that this is not an attack on the NHS, the Nurses or the standard of care I received. I still Heart the NHS, big cheer for the NHS.

I do have to question the validity of this particular aspect of the process. To be fair it was a pilot scheme that was clearly in its early stages.

Dad would also point out here that unfortunately, I did know an awful lot about cancer and its treatments before all this; those who don’t may find it useful. Though I’d say a look at the Macmillan website would be just as informative.

My argument with this pilot scheme can be summarised in the following bullet points:

*Warn people what the class is about, make it optional, suggest you don’t come with an entourage, so you can ask the unsexy questions you want to know the answer to.

*If you are going insist people come and pay the hugely inflated parking fees, make the classes useful and specific. Putting us in a mixed gender / mixed cancer groups is not going to encourage the type of free and frank dialogue wanted by those running the group.

* When dealing with a room full of awkward, sick people and forcing them to meditate. Do some research, listen to the CD you’re using and perhaps pick the one that doesn’t assume the listeners have hair. Especially if they lost it via treatment. It will piss them off and not aid relaxation.

*Offer them a biscuit and a cup of tea, it’s just polite.

Don’t worry the Oncology Department know how I feel. I (politely) wrote the above down on the feedback form. If they couldn’t make it out on that, they’d have had a second chance with the clipboard I was leaning on. I made quite the indentation.

pollygoshchemo

In which I gingerly (ha) start to write my “Guide to Chemo”

So folks, with many a glitter cannon and a triumphant trumpet fanfare, I have tried to start to write (reasonable helpfully) about chemo.

Turns out I can only do it in small chunks, not sure how many it will turn in to, lets hope it’s more informative / fun to read than actual chemo.

ENJOY!

Chemo Disclaimer: If you are about to undertake Chemo perhaps have someone vet this blog post before you read it.

Actually, that’s Tip Number 1: Get yourself a buffer / learn to zone out!

Everyone has an opinion / war-wound / great Aunt Sue when it comes to Cancer and Chemo.

If one more person, who had never been through Chemo, told me “Ginger might help” I may have inflicted damage. Learn to tune people out, you are about to receive a lot of unsolicited advice. Most will not be helpful, some will be scary; the Kings and Queens of Yore had their food tasters, get yourself an advice taster. A trusted loved one to vet / veto information. Let them help you to decide if you need this particular titbit in your head right now. If a conversation has taken a turn towards scary-ville, don’t be afraid to cut people off (politely). I wish I’d been more brave about that in the beginning.

So perhaps don’t read this, at least not yet.

++++++++++++
Tip Number 2: Get yourself a sponsor.

We all need advice sometimes or the shoulder of someone who has been there. Sadly in this day and age you probably already know a few, a Chemo sponsor if you will; the right person is the one who, on receiving the news of your up coming treatment, will respond by giving you a hug and nothing more.

This is your guy, a warrior with all the scars and the world-weary eyes but someone who knows when to keep their mouth shut. They know you need to experience it yourself first, they know not to taint you with stories of their own battles. The amount of self control this individual will be exercising ought to be saluted, trust me.

Once you are through your first treatment and need to debrief with a comrade; this is the person you call, meet for tea or something stronger, strip off your shirts (metaphorically) and have at it with the battle-wound talk.

Tip Number 3: At some point along the path you or your body will not react in a ‘normal’ way. (This is what makes all the guidelines on Chemo so aggravatingly vague, like snowflakes, we are all unique. It’s the last thing you’ll feel like doing but try to relax and go with the very weird flow. If you are worried ring your Doctor, 9 times out of 10 they will tell you whatever it is is normal or “normal for you”.)

I’ve been trying to think if I’ve ever been more nervous/terrified than the morning of my first Chemo session. Having never jumped off a cliff, blinded folded – nope, nothing is coming to me. I think it officially the most twitchy I’ve ever been.

The day before I had to take steroids to prepare myself, I then spent the day in nervous anticipation of when I was going to start feeling all manic and jumpy, which is apparently what’s meant to happen, my Mum would clean the house at top speed while on steroids. Sadly for little flat and the ever neat A. this NEVER happened.

Turns out I’m part sloth so I was mostly just sleepy (which my Doctors found quite funny), my skin felt a bit buzzy too, if that makes sense. You know when you’re on a hot tube/subway/metro and then all of a sudden a blast of cool air hits you and whooshes round your skin? A bit like that crossed with ants running up and down your legs; which is my least favourite touch sensation. It was unsettling, is what it was.

Tip Number 4: Request a PICC Line.

I also had a line fitted the day before, I hated every moment with that darn thing in me. It was not a pleasant experience having it put in and it was a pain in the patoot in every possible way BUT I think it’s a necessary evil. I am grateful my Dad knew enough to request one for me. It makes things easier on Chemo days and protects your veins from a powerful chemical battering. Which is super important.

Perhaps have it put in a few days before the first Chemo so you can get used to it. I wanted to swim as much as I could prior to Chemo so the day before made sense but I did have to deal with an achey arm on top of everything else.

Top Number 5: Let yourself off the hook, you have enough going on.

After my first not very pleasant Chemo experience, I spent sometime beating myself up. Had I scared myself into a nasty experience by reading too much? Had I forgotten to be positive? Had I done or not done something, ANYTHING to make this whole thing harder on myself?

I’m going to tell you a secret that may keep you a little saner than me. Commit it to memory and when the dragons come try and remember to repeat it.

There are no winners or losers in Chemo. No matter what the books, experts or your neighbour Ned says; it is going to be what it is going to be and you know what? You are going to do your very best in a very crappy situation.

We can dance about this issue all we want but NOBODY has ever come out of Chemo saying “I quite enjoyed that, can I go again?”, this is no trip to the Spa. By submitting yourself to it you are already a Rock Star in my eyes.

pollygosh_cr-cr-cry

Cr-Cr-Crying

To spare my blushes, I’d like to think, that you haven’t really lived until you’ve found yourself bawling your eyes out in the Japanese Wing of the V&A. Goodness only knows what the other visitors thought. Perhaps that I was communing deeply with the pottery in front of me. Having strangers think that I am so wonderfully deep, that the sight of a beautiful pot can move me to tears is what soothes the humiliation of crying in public.

I love museums; love their dusky, musky smells, love the near silent revelry of those within. I find it amazing how quiet, a huge, booming building can be.

I love the V&A best of all. I love it especially on a week day. I love discovering some new wing or tiny artefact. The last time I visited (before the tears), I came across a carpet so precious that it could only be lit for 10 mins every hour! What was more remarkable, that there was people waiting to view it, a wait of 20 minutes.

I adore the V&A as a building, as a monument to love, ostensibly. I adore what it means to A. and I, the hours we’ve spent wandering its great halls. I like the gift shop, and the tea room and the amount of dust that dances its way across the beams of sunshine; from the windows that look out into the garden in the middle.

All of this and none of it was tickling my brain, that Tuesday, while I was idly contemplating the Japanese ceramics. I was feeling a deep joy to be back, when “blam!” the fear got me.

I didn’t see him sneaking in, he must have been tailing me all morning, following in the shadows, sniffing about where he’s not wanted. This particular fear is a peculiar one, he’s reasonably new to me.

You know that feeling when you are so happy you think your heart my burst or your head explode? This fear must be attracted to the pheromones that sort of joy creates and just at the point of bursting or explosion, he comes along with his big, icy hands and clamps them firmly upon you. All the time he’s whispering that you are so stupid to be happy or joyous and even though the sun is shining the storm clouds aren’t far behind; don’t you know something will happen soon to make it so you’ll never feel happy again? Not only will you never feel it again, you will be so robbed as to never even remember what happy felt like. Joy will be lost to you.

But remarkably what the fear was whispering, scary as it was, was not what I was crying about. What left me wailing in front of the pots (and tourists of many nationalities) that day was the sudden realisation that my reaction to feeling ‘dance a jig’ happy was to be scared of what was going to happen to ruin it. I wept that day because I was so sad, that my experiences, could leave me so, so fearful of joy. I cried so much I had to go and have a cup of tea in the William Morris tea room. Later, when I got to work, I cried all over again.

I’ve been absent from little blog for a while, not because I’ve spent the last few months weeping and wailing. I’ve been pretty tired, exhausted might be a better word. The concentration I’ve needed to expend at work has left me little energy for much else. The longer I was working the more difficult it was to do much more.

I had no real problem with this, I wanted to go back to work quickly after Chemo finished and since then spotty dogs and star-crossed lovers have occupied my brain. Strategically, I figured taking time of in the dreary winter months would be a waste. I doubted I could recover mentally or physically while getting blue in the February gloom. So I worked and worked and saved and saved, deciding to have a sabbatical in the spring/summer. Like the rest of creation, I would reawaken with the sunshine.

This plan worked for the most part. I was too busy to contemplate the enormity of the last year and my complex feelings towards it all. It was enough to try to kick-start my sluggish brain and more sluggish body. But glitches began to surface, you can ignore the wilderness between your ears, you can work until you are too tired to think too deeply but your mind will find a way. You might find yourself unable to stop crying because watching a ‘Juliet’ with a similar hair cut to you, trying to work up the courage stab herself, will remind you of you before each Chemo session. Or you may cry because you are sad for yourself, in the Japanese Wing of the V&A, on a Tuesday, when all you were feeling was happy. It could be any number of things I suppose, I find them almost daily at the moment.

Yet, I’m grateful for the tears. I didn’t cry that much after mum died. I’d get a strange pain and drying in my throat, then I’d clamp down and carry on in my peculiar numb way. This didn’t work out all that well for me. The more I thought of tears as a sign of weakness and controlling them as a sort of strength, the sicker and sicker I got. I am relieved at how easily the tears come these days, they don’t last that long if you just let them fall, then you can hunt out a hug and blow them a kiss goodbye for an hour or a day. Healing, they seem healing to me.

It would be helpful, mind you, if I could be suddenly multi-lingual, just so I can explain in any number of languages that I’m ok really and that perhaps those onlookers might like to see the carpet that is lit for only 10 minutes on the hour instead ….