Storm in a chemo cup

The following is written retrospectively and NOT in real time. I am currently two years in remission and intending to be so for the foreseeable future...

I cannot quite believe that I have written 22 posts and am only just beginning to share the actual treatment process with you ("We can!" I hear you cry, "Get a bloody move on!"). Talk about procrastination. However there is method in my madness. The idea being that by the time I have finished this tome they will have found a cure for cancer and we all get to have that "even in the face of adversity" happy ending we all love and my blog ends on a Richard Curtis feel-good factor flourish where Hugh Grant with all his fumbles, awkwardness and humbleness still gets the amazing, quirky, beautiful girl against all the odds! And keeping with the Richard Curtis theme what could we call the film version of my blog? "8 Chemos and a Lumpectomy" or "Cancer, Actually".  But there I go digressing yet again...

So the journey begins. First on my list of able helpers is one of my oldest (in duration of time known NOT age) friends, Jo. When I sent my round robin email and text request for designated drivers she was the first to respond. Actually I think she even offered before I asked. She was also keen that having experienced this with another of her friends first hand that she would like to come with me to the first one. I gratefully accepted. 

And how glad I am to have her with me. We have been through lots together over the years. Our families were friends before I was even born so she is like family to me and like family we've had our ups and downs. We've shared pivotal moments which are firmly locked in my memory bank, but also had times punctuated by fall outs, misunderstandings and downright belligerence! However those were in our younger more impetuous days and because of that shared history right now right here I wouldn't want to be with anyone else. 

We come into the chemotherapy suite reception and are greeted by a highly excitable receptionist who is agitated about one thing or another. I use the word 'greeted' lightly as it was more of a look of complete shock and disbelief that someone might be coming into a chemo suite reception intending to have some chemotherapy (maybe even pretending they needed it...) Bizarre that! And the reason I say that is I'm asked whether I'm in the right place, whether I'm sure on the date and a number of other what can only be classed as 'trick questions' - all of this happening when I can see my name clearly on the list. What has flumuxed her is that I am quite early. Jo is a stickler for punctuatilty and it could be said that I struggle with the concept at times so she has factored in a lot of 'wriggle' time for us to proverbially 'wriggle' and not as I would probably do left to my own devices which would be to turn up in a hot sweaty mass of apology and confusion. However our 'wriggle' time is interpreted by our erstwhile receptionist as less 'wriggle' more fucking up the carefully orchestrated list in front of her and it doesn't make her wriggle but actually squirm! 

Now I know it can't be an easy job having to work in a stressful environment with very sick people demanding attention, cavalier doctors in a wave of white coats sweeping through the ward throwing out edicts to overworked, harassed and undervalued nursing staff. However that scenario cannot be further from the truth in what is actually an oasis of calm. It's my fevered imagination running off again having glimpsed at one too many episodes of Casualty or Holby City. It really isn't like that at all and in all my time attending the hospital I never once saw a glimpse of any shenanigans between the aforementioned doctors and nurses of a less medical more than friends nature! But who knows what was going on in the private chemotherapy suite above! The only person causing waves within this still oasis was our whirlwind of a receptionist.

However over the next 16 weeks of coming here every two weeks I got use to her and actually found her dramas and angst highly entertaining. I think actually it was all a ruse to take us chemotherapy patients' minds off of what lay ahead. If that was the case she excelled and was NHS money most definitely well spent! 

But on this first occasion it is quite disconcerting and a little alarming. However once she has located me on her list and this particular drama has been abated we wait patiently for my name to be called. As waiting rooms go it is actually a really nice one - bright and airy. It also has a really nice selection of hot drinks for which you make a small donation towards the cost. You can even help yourself to the different varieties of ice pops in the small freezer which has proven to be vital to many during this particular cycle of chemo. But I'll come back to that later...

As the waiting room begins to fill up I am soon very quickly surrounded by people at differing stages of treatment and in most cases accompanied by someone. Some are bright, chatty and very funny. Others are more withdrawn, quiet and reserved. Some look really good and it's difficult to know who is the patient and who is the friend or family member. Some people look like the way I imagined and had seen cancer patients look in films or TV - pale, withdrawn and quite clearly unwell. But again in this world of cancer there is no one consistent picture or image. People deal with this differently and each person has their own tolerance levels and in turn will fare differently with their treatment plan. People come and go and suddenly I hear my name being called. 

Up until this point I had tried to keep calm and not think about what lay beyond those swing doors. However when my name is called the reality of what is about to happen kicks in and I am suddenly really scared. I know I have to do this, but I am frightened of not knowing what is going to happen to me and how I'm going to feel and if it will even work. All those old feelings of anger, resentment and fear that I suppressed since after those first few weeks following diagnosis are crystal clear and bubbling up to the surface again. This fucking disease. My mind is reeling. 

My friend picks up on my anxiety and squeezes my hand tightly as we get up. I want to slow time down to capture and keep this moment before everything changes forever. I want someone to rush in and say there's been a mistake and they've got the wrong person and my naughty left tit isn't so naughty after all and was just winding us all up. But no-one is coming to save me from what's behind those doors. "It's just you and the chemo, kid", I think to myself (and no I'm not referring to a super hero or a cowboy, though right at that moment I wish I was). I take a deep breath, steel myself and   push open the double doors. 

As I walk through the door I am overwhelmed by all the emotions that I have been feeling up until the point and suddenly I feel like I have turned into Charles Bronson in Death Wish or Clint Eastwood in Dirty Harry or better still Arnie Schwarzenegger in The Terminator (all the original ones of course!). Fuck you cancer. I'm coming to get you. 

Hasta la vista baby...

        

Hair Today Gone Tomorrow

My D day is looming and I have one last thing to do before I step onto the treatment treadmill which will, I have no doubt, change my life forever. That last thing is to go get a wig. It's not that this is an enshrined pre-requisite to having chemotherapy. From my own research and talking to people I know that many don't do the wig thing for a whole host of reasons and opt for a headscarf or hat or even go au naturel,  but I want to be ready for all eventualities. I also secretly harbour a desire to be incognito and to have a wig that is so unlike my natural hair that no one will recognise me and therefore throughout this gap year I can ostensibly be undercover. I know, I know. Most people would be angsting and agonising about the hairloss, but I see it as an opportunity to be someone else. I think Freud would have a field day with my fucked up psyche. But it's much simpler than that. I am a bit of a show off and a frustrated wannabe thespian so this allows me a chance to sink into a fantasy world where I could be anyone or go anywhere else other than here having to face my own immortality. I also quite like the idea of going blonde!

For this task I need to chose my shopping companion wisely as I cannot be trusted to do this momentous task on my own. I have very little sense of style (or indeed any style) and am sure in my panic I will buy something that resembles a merkin or leaves me looking either like Paul Daniels or at the other extreme Bet Lynch.

Anyway as my last post shows I am truly blessed with the most amazing friends all with their own wonderful qualities and strengths. I therefore need someone from amongst this group who will be brutally honest, is stylish and won't let me leave the shop looking like a very very poor excuse for a drag queen or a reject from a reality show with really bad hair extensions or WAG aspirations. I need a fashionista straight talker who won't bullshit me and there is only one person who keeps popping into my head. The lovely Anne-Marie whose sense of style is unique and always looks fabulous, and whose Liverpudlian 'no-nonsense-or-won't-suffer-fools-gladly' roots ensures that this will definitely
be a 'no bullshit zone'!

My only experience of buying wigs is at novelty or joke shops for parties or Halloween so therefore don't think it makes me a very good judge of what would be right. I have been very good at masquerading as Morticia Adams, Cher (circa Sonny and Cher) or Ronald McDonald, but I have no experience of buying wigs for aesthetic purposes and had no idea that a shop in Hove called Trendco, that has been supplying women with wigs for years, even existed. However it does and I make an appointment.

We arrive at a very unassuming building which looks more like an office block than a wig shop. Though I have no idea why I say that as I don't know what I imagine a wig shop to look like. Maybe like a hairdressers or a beauty salon. However I think it's initial unassuming appearance is such as not to make women feel self conscious about having to go to a place like this. It's always said that a woman's hair is her crowning glory so to be in a position whereby you are having to face up to losing it, admit you are already losing it or you've lost altogether must be such a difficult situation to find yourself in and to have to face. So in order to make these women feel less distressed they make it less obtrusive and obvious to others. Not a good analogy but it reminds me of how sex shops use to market themselves with no advertising and maybe just signage above the door informing that it was an "Adult" or "Private" shop with a clientele of very sad looking middle aged men in macs trying to get in and out of the shop without being seen clutching a brown paper bag filled with their illicit goods with descriptive, but not very imaginative titles such as "Big Jug Lovers". It feels quite quaint remembering the secretiveness of these shops in our out there world of social media, twerking and Snapchat and the like, where it's participants are keen to share the most intimate of details and images in a heartbeat. The shops now have names like Taboo, Sh! and Harmony... And nothing is hidden. It's all out there for everyone to see with nothing left to the imagination.

Maybe this revolution will one day extend to women's hairloss. But not today. Today hairloss and wigs are safely tucked behind a blank veneer allowing the company to provide a discreet and, I have to say, very professional and empathic service to its customers - helping them to face the changes ahead in relation to their personal appearance in a sensitive and supportive way. 

I have tried to approach this in a different way. One where I see hair as not important especially as I don't believe that the hair I already have is such a great crowning glory as to be mourned. I fear less about my hair falling out, more about being so ill and weak wracked with fatigue that I am incapable of doing things for myself or at least severely compromised in trying to. So I think my attitude is about approaching this purchase as a bit of fun. I may never ever take it out the box, but I'm going to enjoy the process of selecting it. I have also definitely chosen the right person to do this with as we certainly have a laugh at the ridiculous looks that emerge in the next hour. 

We are greeted by a woman with glorious hair. I so want to ask if it's all her's, but think better of it. She is very attentive and extremely helpful and knowledgable. She really knows her wigs. My initial thoughts are that I am not going to be hiding my hairloss so I am not trying to replicate my own hair (not that I would want to and pay for it!). If I was going for a long hair look I'd want bounce and body. I'm thinking Farrah Fawcett-Majors (or actually any Charlie's Angels a la 1970s or the 2000s version would suffice). However I am thinking this is a good opportunity to go short and gamine. However what no-one points out, which is the elephant in the room, is indeed the elephant in the room - me! Pixie haircuts and short sassy crops look great on slim, elfin girls and young women, even well groomed and maintained older women. But on someone carrying a bit more flesh than is probably necessary it doesn't have the same effect whatsoever. Every shorter cut wig just looks fucking hideous. I at least had hoped I would look like Halle Berry's older and slightly fatter sister. But the image looking back at me couldn't be further from that imagined truth. 

I just look and feel like a menopausal (though well coiffured) middle aged woman desperately trying to look younger. At worst I feel fat, dumpy and a little bit butch - a cross between Big Mo from Eastenders and Wee Jimmy Krankie. I am feeling anything but "fan-fucking-dabi-dozi"!

We all decide that maybe short isn't the way to go and we start to look at longer versions. Bizarrely and contrary to what I thought I appear to look better with hair that a WAG would fight me for. Lots of bouncy curls and incredibly girly, though somewhat on the fake side. However there was me thinking I would look like mutton dressed as lamb, but I'm looking like a smokin' rack of BBQ lamb. Not sure that's a good analogue but you get the drift. I looked pretty hot. However again these styles fall into the category of look low maintenance, but require high maintenance input which I knew I could not sustain and after a few wears the look would very quickly descend into a look more like that of Neil in The Young Ones or Lemmy. I needed length, but practical (as the bishop said to the actress...) God how boring, but true. It needed to be that low maintenance looking to low maintenance input ratio. However we are running out of options at the lower cost range. Anne Marie picks up on my sense of disillusionment. She spies a blonde wig which looks fun, just the right length and not as tousled and teased as the others I have tried. She urges me to try it on. We had joked about me trying on a blonde one and as I am here it would seem churlish not to. I put it on and the image staring back at me looks amazing. It's the right length and looks really natural. It has a nice bounce to it and is a bit sexy too without being too overt. I wouldn't feel self conscious or fake in it. It's does feel slightly retro circa 1950s but with a less styled look. However I think it's because it's blonde. I feel a little like an extra from Mad Men. 

As much as I want to be reckless and approach this wig purchasing with a two fingers up who-gives-a-fuck swagger I know that I may have to wear this wig often and as much as the fun of seeing people's reaction to my new found blondness I fear the novelty would wear thin very quickly. I need longevity so I enquire whether this style comes in another colour resembling my own. It does. It's the right price too and with the £60 deduction on the NHS for medical purposes it's a steal. With my wig called Carrie (very Sex and the City-esque) in its box in its plain carrier bag I leave this unassuming building ready to face the world and more importantly feeling better equipped to face the one side effect I know I will definitely experience. Chemo do you worse. I've got a 'Carrie' in a box which I'm not afraid to use along with a plethora of crazily coloured headscarfs that would give Camilla Batmanghelidjh a run for her money. Hair loss - I laugh in your face. Bring it on...

A Little Help From My Friends

My partner does not drive. It's never been an issue between us. It is just the way it is. He is the king of public transport and cannot understand car drivers obsession with using their cars at every opportunity when they could savour the delights of rail travel of which he does a lot - whereas I like the freedom that having a car gives you to just get up and go not relying on anyone else except your own horse power. When I first met him I wasn't a great proponent of public transport, but over the years he has won me over and we now balance our trips between the car, trains and buses. There have been some times when I have wished I had been in the car when trains have been delayed, cancelled or overcrowded, but on the whole our transport arrangement seems to work well for us.

Well up until now. Though actually that's not strictly true. When I was pregnant with our son I spent many a sleepless night wondering when the time came how would we get to hospital. My partner took great delight in recounting his experiences with his ex-wife when she went into labour with their daughter and how they had gone to the hospital on the bus! Well she was a braver person than me that's for sure. I had even toyed with a home birth which terrified us both but would mean no need for any bus trips or anxieties around travel plans on my part. However our bathroom deciding to malfunction on a magnificent scale put pay to that. No easy access to running water, a new unpacked bathroom suite in the room that I had decided to give birth in and no plumber free until after Christmas to plumb it all in (way after my due date) really hammered the nail into the coffin of that brainwave. Thankfully (though not sure if thankful is the right word) my son had no intention of coming out on his due date or anywhere near to it so I was induced. One of our lovely neighbours took us and picked us up afterwards so transportation dilemma was well and truly averted. 

However I find myself three years later again bemoaning silently and in that kind of crazy 'muttering under your breath way though hoping it's slightly audible' that my partner still doesn't drive and yet again I face the prospect of bus travel from my home to Brighton to the cancer centre. It is
compounded by the fact that I have no idea what to expect. I might be able to get myself there a back
in the car, but one thing I do know is that for me public transport is not an option. My health and wellbeing will undoubtedly deteriorate as time progresses and I do not want to share this with the general public. So I need a plan. And that plan involves in the words of the Fab Four or Joe Cocker if you prefer, getting 'A Little Help From My Friends'.

And what top friends they turn out to be. As quickly as my call to arms goes out I am inundated with offers. I have to say it was quite overwhelming. I know I am incredibly blessed with fantastic friends, but I don't think I was quite prepared for the onslaught and immediacy of the replies. In my panic and harbouring the theory that a greater reach would yield more positive responses, I had done a kind of blanket bombing on the email and texting front. So not only did my 'old muckers' (a term heaped with endearing love and affection always) get back to me, but also friends I had made more recently which I found quite amazing. Getting responses back from people who really hardly knew me but still wanted to help me meant the world to me. For all the crushing loneliness of this illness there are
moments like this that just make you feel that you are wrapped in love and maybe not so alone as you thought you were. It's these precious moments that keep you going during the lonely unknown
months of treatment. Knowing that there is a band of beautiful people who will do what they can to make this journey (or in my case gap year) go as well as it can. Even writing about it after all this time I can feel the enormity and emotion of knowing that and can feel tears welling up because if it wasn't for all those wonderful people who accompanied me on those treatment trips with so much love, compassion and humour I don't think I would have fared as well as I did.

So this post is dedicated to all you wonderful people. You know who you are but just in case you've forgotten (and I never will) thank you from the bottom of my heart - Jo, Caroline, Donna, Vic, Susie, Anna, Charlie and Mike. Thank you, thank you, thank you...