THE NEW NORMAL #10 – SUPERPOWERS AND FALSE ADVERTISING

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It was a staple of many a feminist comedienne’s (surely just comedian these days?) set in the late 80s and early 90s but the topic of ‘what you can do when you have your period’ is still a feature of advertising now. The focus these days is more about ‘hey, you can go sky diving or pot holing if you want but equally you can stay in and play chess or do your tax return if that suits you better’ – never let it be said that I don’t know what a woman wants at all times of the month. Similarly, at the moment there has been a lot of pre Para-Olympics coverage and advertising on TV which seems to suggest that if you have a disability you aren’t making the most of your life unless you’re racing down the ramp in a wheelchair or sprinting down a track with little or no sight. Again, where’s the shame in being disabled but preferring to perfect your oil painting technique or train as a Tom Cruise-esque cocktail master? A clue for you, there is none.

But what the hell has this got to do with my constant bleating about having cancer, I hear you ask with a heavy sigh. Well, despite the good news I recently had about my cancer diagnosis I am yet to book my round the world trip, nor have I got any plans to jump out of a plane or off a bridge (attached to a bungee, this is not a cry for help people). I haven’t really had that life changing epiphany moment other than spending a bit more time with the kids and not getting as frustrated as I used to. That said, there are times when, halfway through watching Anchorman for the 20th time, I wonder if I’m wasting my time, literally wasting my life. And then you get the guilts. Should I be making the most of every second, should I be living life the max and existing on the edge or is it perfectly acceptable to spend an hour or two on the Xbox or re-alphabetise your CD collection after your child has ruined all your hard work? Yes, of course it’s fine. It’s more than fine, it’s normal, it’s essential. As much as I would love to go travelling (I definitely have the wanderlust at the moment), I have bills to pay and a family to support. I have a job to do and social commitments to keep so just dumping everything and running off in to the sun is, while tempting, just not practical. So I wanted to write that down, in black and white, in the hope that others can be reassured as I have been by this realisation.

I have to say it’s been pretty odd over the last 10 days or so since getting as close to the ‘all clear’ as you can get with cancer. On the one hand, getting told that things aren’t anywhere near as doomy as you thought four months ago is pretty great albeit anticlimactic. On the other hand, beating a disease like cancer in to submission (just submission, it ain’t dead yet) feels like a pretty amazing (dare I say superhuman?) thing to do. It’s not though, it’s just human isn’t it? Essentially, the human body (more specifically my sack of bones) is an amazing thing and the immune system can cope with certain levels of cancer by keeping them in some sort of holding pattern. Think of it as biological kettling or an endless snake of cells waiting to get on to the fairground ride of my lymphatic system. But, and this is a serious but, there is still hope of developing the superhuman powers that we all surely crave. You see, I’ve had quite a few scans inside radiation emitting devices, various scars torn in me and I’ve been advised to wear Lycra. I’ve got another ultrasound in August, another CT scan in October and they don’t show any signs of letting up so I think it might be time to get my special skin tight suit made up and wait for my new powers to show themselves. Personally, I’m hoping for either super speed like the Flash or the ability to metabolise large quantities of food without putting on any weight. Sounds reasonable, right?

Over the last few days, however, the most superhuman thing I’ve managed is increasing the size of my right leg by making it swell up. The GP (no, not that GP) tells me this will be a combination of the excess lymph fluid and the excessive heat so I have to hang on until I get to see the good folks at St Luke’s next week who should show me how to return things to normal. It doesn’t exactly strike fear in to the heart of villains the world over though, does it; ‘here comes Roland, the man with a slightly puffy leg! Watch as he limps awkwardly towards you, slightly faster than a mobility scooter with a low battery…. Ayeeeeeeeeeee’.

The next battle for this superhero, however, was against the evil Lymph O’Demo but I would need my sidekick St Luke to help me with this particular fight. Essentially, I went to St Luke’s to see if my swollen leg was a result of the dreaded Lymphoedema or just full of custard – I really like custard so was understandably hoping for the latter. My leg was measured, my blood pressure was taken through my toe with the tiniest cuff thingy you’ve ever seen and yet another stranger looked at my uncovered groin (“very nice” was the choice comment this time, albeit in reference to the healing of my scar). The long and short of it is that my right leg (bad leg) is 20% bigger than my left leg (good leg) and that means I have mild Lymphoedema. For those that haven’t been wallowing in cancer knowledge as much as I have recently, Lymphoedema is what happens when some of your lymph nodes are removed and your lymph fluid can’t move around the body properly so it just kind of pools in your limb. Like sick in an old sock. This news kinda sucked but was delivered in that classic NHS way, without pausing for breath, so it’s taken 24 hours to sink in and now it really sucks.

But what of the future? Well, first things first, I have to wear a stocking on my right leg that will compress the fluid and give my muscles something to push against and this, I’m told, will help. There were two particularly distressing issues here, however, which I am compelled to share with you. Firstly, these stockings only come in beige. Beige. The worst of all the colours. This also brings up a point I’ve been pondering for some time; if you’re a person of colour in this world who gets an injury, there seems to be an inherent racism in the medical world as the vast majority of plasters and surgical wear seems to come mainly in Caucasian sympathetic colours. There’s either a law suit or a business opportunity in there somewhere. Now, secondly, and perhaps more worrying, the phrase “for the rest of your life” was thrown in there which is never good. The concept of wearing a surgical stocking for the rest of my life was not immediately concerning but then I got to thinking, what else can I confidently say will happen for the rest of my life? Breathing; check. And that’s where the list ends. Everything else can pretty much be taken away by illness, bad luck or disease so those are my two certainties – breathing and half a pair of beige stockings. Not the most inspiring thought process but still better than chemo or, y’know, death.

The final part of this instalment could have appeared in any of my other posts but I felt like the time wasn’t really right. The thing is, all of this was avoidable. My GP asked the hospital to look at something on my toe and check it for Melanoma back in 2014 but the test came back as benign. When the groin fruit appeared earlier this year, the toe sample was retested and, you guessed it, there was some melanoma in there after all. That means I could have avoided the lump, the operation, the semi-permanent loss of feeling in my thigh, the huge amount of stress and the lifelong subscription to beige stockings quarterly. Needless to say, I’ve had an apology from hospital (crucially, for delayed diagnosis rather than misdiagnosis) and there is to be a hearing at which I will be present although I don’t know if I’m supposed or allowed to take anyone with me yet. Still, the summer is here, I have my busiest two work weeks of the year coming up and some kind of NHS investigation to get embroiled in. What more could a girl want? I mean guy! Damnit, the thought of wearing stockings is already starting to warp my mind.

THE NEW NORMAL #9 – THE NEXT CHAPTER

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Thus far, we’ve been keeping things ticking over by portioning the various traumatic experiences of having cancer in to a series of chapters in our book of new normal (not an official part of the Bible). There was the horrendous opening chapter were the misguided GP told me I was about to die within what felt like minutes, then a chapter featuring the relief of finding out that this wasn’t strictly true and the chapter that featured more bodily fluid and padding than any adult human should have to endure pre-retirement. Today’s chapter, however, is quite a nice one. Scratch that, that’s a massive, English, middle-class understatement – today’s chapter is ruddy awesome. Ruddy, bloody awesome if I may be so bold.

For anyone still paying attention, I had a CT scan on 1st July which was to be compared with one undertaken in April to see what was going on in there (‘in there’ being my not insignificant insides). So, up we rocked to the Oncology department via a labyrinth of corridors pitched somewhere between the set of a zombie flick and One Flew Over the Cuckoo’s Nest. This being a new part of the hospital, my mind clicked straight in to Trip Advisor mode – comfy chairs, nice little café area but bloody hard to find and an understandable sense of forlorn despair in the air; a solid 4-star performance I think. Shortly after checking in…I mean registering with reception…the Lovely Lady from Leeds (my keyworker) appeared with a smile and a wave, this was a good thing because, you see, today could have gone anywhere between;

Option 1; Guess what? The cancer has completely disappeared! It’s like magic, high five!

OR

Option 2; Guess what? The cancer has completely riddled your body and there’s bugger all we can do about it, low five….

A smile and a wave would suggest that, unless I’d seriously pissed off the Lovely Lady from Leeds, Option 2 or anything close to it was fairly unlikely. I have been known to piss people off though so no chickens were being counted yet.

Once in the consultation room (or ‘holding pen’ as I like to think of it) we waited and the nerves jangled in their own unique way. Gemma got twitchy and nervous in a fairly traditional sense while I made bad jokes and suggested stealing medical supplies as is my wont. Then something happened that has happened a lot before but I’ve never thought to mention it – the doctor appeared through a special door. Us normal folk enter through a door in to a room the size of an average family bathroom but for some reason the doctor then appears through a second door. Why? What is going on back there? Is there a two-way mirror? This has now become a mission for the rest of my life. Anyway, I digress, the doctor entered and then we played this game that was a weird combination of Operation and Spot The Difference – I call it Spoteration.

I realise that I’ve been waffling at this stage and anyone genuinely interested in my health will be quite frustrated by now. So……yeah. Sorry about that. Basically, I’m doing well. The groin fruit is all gone, that’s the main difference between the two scans, so that’s a big ol’ green tick right there. Then there were those pesky little nodules in the lung and the kidneys – well the good news there is that they don’t get a circle around them in Spot The Difference. They haven’t grown, moved or changed shape which means that, on the one hand they’re not doing the metastatic melanoma dance around my body, but on the other hand we don’t really know what they are.

There were a lot of medical terms thrown around (exophytic lesion, interpolar region and lymphadenopathy being among my favourite) but the general upshot is that this is the best news we could have hoped for. I’ve been struggling for a metaphor for this situation all the way back from the hospital and the best I can come up with is when you notice a whole bunch of fat blue bottles milling around your living room unexpectedly and trace their source to the dead pigeon rotting in your chimney which you swiftly remove. Once the pigeon is gone and the flies are swatted there is still a disconcerting smell lingering and that’s what I’ve got going on inside me but at least the smell hasn’t spread to the kitchen. You follow?

So this new chapter starts off pretty positively, told you it was awesome. I’ve got to go back for an ultrasound to work out what the smelly things in my lung and kidney are which is a piece of cake. Then there will be another CT scan in October to keep an eye on any growths which will be an absolute breeze. In fact, there are only two challenges I can see in the immediate future relating to this whole cancer nonsense. Firstly, there is a strong chance that I will need to have some radiotherapy targeted on what is left of my groin to make sure that any lingering melanoma is completely wiped out even if we can’t see it – the operation is likely to be sponsored by Cillit Bang under the newly privatised Tory NHS; ‘Bang and the cancer’s gone!’ the surgeon’s will be contractually obliged to shout at the end. This doesn’t concern me too much as I don’t have a clue what’s involved and I figure it can’t hurt, right? Secondly, I need to lose weight. No surprise to literally anyone who’s ever met me after about 1999 but I’m fairly healthy inside I just need to stop carrying around a 6 stone sack of fat to give my immune system the best chance of keeping the cancer at bay. It’s this last bit that’s crucial here, there is no cure as yet for this type of cancer but there are so many more ways of keeping a watchful eye on it, stopping it from spreading and basically waiting it out until a cure comes along. It’s not the party poppers and klaxons experience I was half hoping for but it is one hell of a step forwards when there didn’t appear to be that many steps left for me a few months ago. A bit like thinking you’d completely run out of food during a hurricane and then finding a stash of tinned artichokes and pickled anchovies – not what you would have stocked up on had you been given the choice and slightly baffling but you’ll take it every day of the week.

THE NEW NORMAL #8 – ANGER MANAGEMENT

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Those of you who know me will know that I don’t angry very often. Sulky, grumpy, morose and sometimes a little snippy, for sure, but anger is not an emotion that I often opt for. However, 5 weeks in to post-operation recovery and at peak cabin-fever I got angry and I wasn’t expecting it. Many of you dear readers have sent me comments saying how ‘brave’ or ‘philosophical’ I’m being about all this cancer malarkey which is lovely and what I write on this blog is a genuine reflection of how I’m feeling but, as it turns out, bubbling under that calmness was a bubbling pool of molten anger (or more likely a boiling hot cup of tea with added anger, I am English after all).

But what was I angry about, what was making me so irritable and irrational? Well, everything really. On a very base level, it was about the cancer. Why me? Why now? Why a cancer that is so difficult to catch and ‘cure’? Why wait until that exact moment in life when you think you’re happy with everything going on around you and then unleash the shit-storm that is the c-word (not that c word)?  But I’ve been dealing with those questions (and resigning myself to the fact that there are no satisfactory answers) for a few months now so I don’t think that was the source of my rage.

Then the EU referendum happened and, colours to the mast, I was a firm Remain voter so the results of that caused me a fair amount of frustration, it’s fair to say. I think this might be closer to the root cause of things as, when you go through a life changing event like cancer diagnosis, you can tend towards the zen like calm of thinking ‘OK, this is a check point in life and I can reassess everything I know to be true, just to make sure’. Apply this to an event like voting to leave the EU and subsequent legitimisation of some pretty racist, xenophobic and hateful acts and you can see why my anger levels started to rise up. Now throw in the devastating and heart-breaking attack on Jo Cox, a loving mother and member of parliament (in that order, please remember that), the attacks in Turkey, the awful behaviour of football fans in France, Donald Trump’s continued and inexplicable rise to prominence, the shambles that is British politics and the continued slaughter going on in places like Syria as well as all the trouble we don’t hear about. All of that, in the space of a couple of weeks and coupled with being relatively housebound and in front of rolling, 24-hour news feeds pretty much tipped me over the edge. The sense of injustice about my own problems were amplified every hour on the hour by a continuous parade of cretinous, hate-filled fuck-numpties who were all far more deserving of having their lives prematurely cut short or at the very least having the potential of this hanging over their heads for a while.

So I turned off the news, I tried to avoid social media and I tried to get out of the house a bit more but that anger wouldn’t go, grinding away inside me like a ball of gas waiting for someone to ignite it. It was only when I mentioned this to my key worker via email (the Lovely Lady from Leeds) that I was told something quite basic but oh so important. On hearing of my increasing frustration with the world in general, I got the response “It sounds like you need to go back to work, you’ve got too much time to think”. In the words of the Outhere Brothers, ‘Whoomp There It Is’. It has been a particularly horrendous few weeks for news but I think if you pick any 5-week period and have nothing more than letting your skin heal and resting to occupy your mind you are likely to go slightly mad and get increasingly angry. That simple sentence along with another, “you are entirely justified in being angry in your situation” went a long way to easing me out of my slump and getting me back to a more positive place.

So, on the physical health front, this week I have been inspected by surgeons who sliced and diced me and they’re pretty happy with how I’m healing up. So happy, in fact, that they don’t need to see me for another six months on the plastic surgery front as the tumour is gone, the three infected lymph nodes are out and my leg isn’t filling up with the dreaded lymph fluid like a hairy, protein filled water balloon. Result. Then, on Friday, I had the third CT scan of my life (I’m getting to be a bit of a pro at this if I do say so myself) to see what else is left inside me, cancer wise (regular readers will remember there are some mysterious shapes in my lung and kidney which I’m hoping are just small toys that I swallowed years ago and have worked their way through my system). For those that haven’t experienced the joy of a CT scan before, there are some slightly odd things that you should probably be aware of. Firstly, being ushered in to a room and asked to strip down to your undergarments while a small panel of people watches on from another room is normal. You might feel like an Amsterdam stripper who couldn’t afford the right colour of light bulb but it’s all part of the process. Secondly, when they fit a cannula in to your arm and warn you that the forthcoming dye injection might feel ‘a bit odd’ they are massively underselling this experience. As the dye enters your body you will have the sensation of hot soup coursing through your veins from your fingertips and up to your head. By the time this dye reaches your abdomen (the area of importance in my case) to show up any abnormalities, you may well feel like you’re either about to throw up or that you’re stood in waist deep sea water having a much needed pee. It should be noted, however, that both throwing up and peeing whilst in the CT scanner are frowned upon – it’s not that kind of Amsterdam peep show, after all.

And now we wait. I will go back to work tomorrow and field all the usual questions whilst trying to remember my password and what my actual job is. Normality will return for a while – that’s the old new normal where I have cancer but don’t feel remotely ill and can still do normal things. Then, on 14th July, I’ll get the results of the scan and we find out if it’s a miracle of medical science and the cancer has completely gone (unlikely but not impossible) or that there’s less cancer than there was but still enough to warrant some treatment of some kind. One thing that is certain, either way, is that I need to lose weight and I’m hoping the dieticians within the Oncology department will give some tips here as this is an area I have always struggled with. Tips or a muzzle. Finally, we also await the outcome of the investigation in to my misdiagnosis two years ago which has resulted in my winding up where I am now. But I’m not angry anymore, that’s the main thing. I’m still stiff, still sore and I won’t be twerking for a while yet but mentally I’m looking forward to returning to a routine that doesn’t involve watching quite so much CBeebies of a morning and has human interaction with a wider range of people than those that I can see walking past my house and look up long enough to wave.

One side note for the coincidence fans amongst you is that my partner (the long suffering Gemma) has one of those ‘look what you did in the past’ things attached to her Facebook account and noticed today that exactly 12 months ago I was due to go back to work following an unscheduled period of absence caused by blood poisoning. Massive blood loss, five transfusions and the return to a less Simpsons-like colour and I was ready to return to normality for a while. Back then I thought things couldn’t get any worse and I felt incredibly ill as my body fought with itself internally but I’d take that every day now instead of the uncertainty over the length and severity of what I’m facing up to now. Much like the mate who, on spilling their pint in the pub after losing their last tenner, states “this night couldn’t get any worse” only to be mugged on leaving the pub – be careful of how bad you think things are for you because sometimes the grass isn’t greener. Sometimes the grass is cancer. Or Michael Gove as Prime Minister. Shudder.