Monday, 22 September 2014

All quiet on the western front...

Well you may have noticed that it's been a bit quiet on the western front by my lack of postings. Will I could blame life getting in the way of everything, which indeed it does - not that I'm complaining having swerved what could have been my untimely demise! I could blame summer holidays where we retreated to north of the border with no internet connection (bliss) and concentrating on the needs of my wonderfully demanding family. I could also blame it on dealing with the emotional turmoil of moving my elderly mother into long term residential care and being wracked with guilt even though it was the right thing to do. Or I could blame it on just being plain lazy and not being arsed to write. Or lastly that I had a bit of 'writer's block'.



Well in all honestly it is a combination of all of these, but also and more importantly it's because I am now about to begin to relive a 'journey' (my elusive gap year!) that nearly three years on (can't quite believe where time has gone) I have pushed to the recesses of my mind. However even though it isn't in the forefront of my mind and is just below the surface it keeps cluttering up the way for new stuff to come in and effectively for me to move on. That's why I've been writing this blog. To shift the thoughts, feelings, fears, idiocies and worries away onto the page and out of my head. Even though I want to keep doing this I am procrastinating because I don't know how it's going to make me feel and what deeply buried emotions it might bring up. However I know I have to write it. One of the reasons I keep putting it off is because I feel the need to make it all factually correct so that those reading it who might be going through this will have all the right information. Because I can't remember things like the actual pharmaceutical names of each drug and what it was meant to do and in what dosage it was given (because I can't find my notes) I have feared my accounts would lack authenticity or credibility. 

However this blog is not a medical fact sheet, but an honest account of MY feelings whilst having treatment not anyone else's. It doesn't need to be factually correct and I can even give myself poetic license to exaggerate the facts especially to get cheap laughs - something that hasn't fared me too badly in real life! So I need to stop making excuses and blaming everything and just get back on that horse and start writing again. I think I have been quiet for long enough. 

But one thing that has really spurred me on is a commuter buddy who is a writer (and a proper one at that and not masquerading like me!). I was telling her about my difficulty in beginning to write again and that I was unsure how it was going to make me feel and that I wasn't sure it wouldn't take me to a dark place that I'd find hard to leave. She then said sometimes the best writing you can ever do comes from when you are at your lowest because it is the most honest. Don't wait to feel better as then it can feel contrived. 

I know she is right. It won't be all doom and gloom because it wasn't like that, but I'm now not so frightened of going back there as it's all part of making sense of what happened and me getting better. So normal service will resume very soon. You have been warned...

Friday, 20 June 2014

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...











        



Saturday, 12 April 2014

You don't wanna do it like that...

So before I launch into my treatment journey (and yes I hear you all saying please get bloody started!)  I just wanted to share this with you because personally I think it's really important when somebody gets a diagnosis like this that they are absolutely ready for the amount of 'advice' (and I use that word lightly) they will receive. It is also very timely as I am signed up with my lovely friend Swazi to do the 2014 Moonwalk (actually the Half Moon, but still physical activity involving 13.1 miles of walking at night with your top half clad in a bra only!) and on Swazi's blog Chocolate is not the Only Fruit one of her most recent posts about sponsoring us tackles the very same subject (as she's a much more prolific blogger compared to my pathetic one post a month you may have to look for it - though all her posts are worth having a read of so don't be shy!)

However I do want to begin this post by saying that I know that many of these people who give this type of 'advice' are not doing it out of maliciousness or in any attempt to hurt the person who they want to impart this 'advice' to. They honestly want to share what they know, believe or have been told because they want to help the person. Well I want to believe that this is their starting point.


However in my humble opinion what I actually think is that they are being a bit thoughtless and not always helpful to a person who is already confused, scared, unsure and completely and utterly lost as to what to do for the best. The person receiving this 'advice', without wanting to put too dramatic a slant on it, is frankly having to make decisions about staying alive. So when someone approaches you with something they've heard, read or been told worked for someone else it puts the person being given this sudden 'revelation' (because trust me that's exactly what this is if they haven't heard it before and haven't even considered and accepted or dismissed it into the bin of old wives tales, quackery or snake oil remedies) can be quite mind blowing. Literally. Even if you have dismissed it as a load of hokum that has no place in your treatment plan and never will do, logic goes out the window as you begin to doubt yourself and start questioning what you've decided to do. 


I feel qualified to say this because that is exactly how I felt. I live in a town which is a lovely combination of old school traditions and new school quirkiness. I love it and wouldn't and couldn't imagine living anywhere else. But it sometimes comes with a price to pay. Although I can accept and understand the alternative approaches brigade I also tire of the constant deluge of medical versus non-medical sermons with, I have to say, the non-medical alternative voice, at times feeling much louder and more sanctimonious. When having to make big decisions it can make for difficult and unsettling listening. 


I have always embraced and been a supporter of holistic approaches to health. So much so that hundreds of years ago I qualified in aromatherapy massage (and 'yes' to all you cynics there is such a qualification and 'no' I am not available to hire, nor for your dirty minded individuals do I do 'extras'!) That was all a very long time ago in another dimension. However my point being that I have had first-hand knowledge and have been exposed to a non medical practice that had incredible benefits in the healing process. But that was exactly it. It formed part of a bigger process. By me giving someone a massage with essential oils it wasn't going to cure them of cancer or Crohn's disease or HIV, but what it did do was support the healing process. Aromatherapy massage is a great relaxer, de-stresser, detoxifier, works wonders on the neurological system, is fantastic for aiding good circulation and gives the immune system a great boost. However it is not the cure to acute and life threatening illness and because of the toxicity of some natural products such as essential oils should not always be used whilst undergoing medical treatment. In short it made you feel nice, helped kick start your system which in turn impacted on your overall health. But again, a bit like cancer, the responses are all very individual and what might work for one person has no guarantee of working in the same way for another person. 


I cannot put into words the awful feeling that wells up in the pit of your stomach when you are wracked with indecision about whether the path you are taking is the right one. All you want to do is make the right decision that will enable you to fight this thing head on. What you don't want is the feeling of being judged for not doing something in another way when you have already had to make the most important decision of your life to date - the decision about having a life to make decisions about in the future!!!

http://flyingglory.files.wordpress.com/2011/02/old-man.jpg
Harry Enfield's '"You don't wanna do it like that" character
And another point I want to make so as not to upset my friends who have an interest, are actively involved or work in this alternative therapies field is that I am NOT talking about you. You are my friends and not at any time did my FRIENDS question my plan of action. If alternative approaches were discussed with my friends then it never came across as judgemental or sanctimonious and it was certainly never received in that way. This post is talking about those whom I maybe have a tenous acquaintance with, work colleagues and in many a case complete strangers. Those are the memories that resonate with me. 

Just to demonstrate what I mean I thought I would share some of these with you:

  • Lavender oil rubbed/sprinkled/submerge onto the affected area (never explained exactly how much was required and how frequently - suppose that wasn't too relevant)
  • Ice cold cabbage leaves (again no type particularly specified so can only assume that savoy, red, green or even napa would do it?)
  • Vitamin C IV treatment (a lot more out there about this, but still not sure...) instead of chemotherapy
  • Coconut oil (the wonder oil that just about cures everything, but doesn't help if you hate coconut!)
  • Wearing a bra at night or not wearing a bra at all (this one was clearly interchangeable because was given by the same person. Never did quite clarify why it needed to be complete cladding 24/7 or hanging free all day, every day. Maybe depends on type of breast cancer?)
  • Coffee enemas (again know this one has been around for a long time, but not sure it's for me. Seems like a perfectly good waste of a cup of coffee and really don't relish the idea of shoving it up my jacksy. Call me weird, but that's the 'coffee in a cup and not up my arse' kind of girl I am.)
Anyway I hope I have made my point without upsetting anyone who might hold these views dear to them. I am all for exploring complimentary approaches whilst having treatment (if no likely contraindications with conventional drugs, such as reiki which I really do recommend during the chemo stint of the treatment - again helped me but may not help others!) and particularly post treatment to help heal your body after the trauma and shock it's been through. Looking at your diet, nutrition, alcohol intake, levels of exercise and psychological support I am up for 101% (don't always abide by it, but try to and actually get it!) However when you've got some big decisions to make about the best way to get better you need to know that the decisions you are making are the best ones possible for you. If you believe in what the person is telling you and it makes sense to you that is great. Go for it. But when imparting this knowledge all I ask is please think of the recipient. 

We all know the arguments about the big pharmaceutical companies and their hold over us in this and many areas of medical treatment. However until I can see a big enough meaningful controlled sample of those undergoing these specific alternative treatments I think I, personally, will stick to the tried and tested evidence based treatments out there. They have worked for me and millions upon millions of people out there like me. They've enabled us to live long (or at least longer) healthy lives with our friends and families. Yes there is no doubt that we are scarred, battered and bruised - physically and emotionally - by the seemingly barbaric treatment we have had to go through, but we are still here. 

However if this cancer thing decides to rear it's ugly head again I may well be the first person heading to Starbucks for a caramel macchiato to go!

Thursday, 6 March 2014

Groundhog Day

I knew from fairly early on in my diagnosis that I wouldn't tell my mother that I had breast cancer, a decision that was agreed with by my nearest and dearest. My mother has vascular dementia and, as you will have gathered if you've read my profile on my blog, lives with us. With her inability to grasp what day it is, where she is, what she's doing today or indeed who any of us are from one minute, hour or day to the next it felt like a redundant and pointless exercise. 

At first I thought it would be cruel and upsetting for her to comprehend that her youngest child had an illness that could be fatal and by telling her and then her getting upset and then forgetting and then having to tell her again would just be fruitless and lead to a day to day emotional roller coaster. I felt it would be like Groundhog Day for me having to relive the scene over and over again like Bill Murray. 



I thought it would become increasingly difficult to hide it from her as my health deteriorated and my hairloss became more apparent. My mother had also been a state registered nurse so had, in her day, the medical knowledge to understand the enormity of the disease. She was also of the opinion, very strangely for a medical person, that once you started messing with certain things it would lead to the speeding up of the inevitable. I'm not sure where that logic came from considering I assumed the job of the medical profession was to ultimately aim to make you better and to do that you might have to go through some horrible, but unavoidable procedures especially if you wanted to live. But maybe her years of experience working on wards and at the midpoint of her career in geriatric care had shown her otherwise. Still that point of view resonated and kept coming back to me. Another reason for not wanting to share this news. 

For me however it was the saddest thing in the world. Although I put a brave face on it so as not to upset others, everyday of my illness was tinged with real sadness that the one person I wanted to share this with who over the years had looked after me unconditionally and without question, who had mopped my brow, held my hand and soothed me with comforting words and just been there to make it all feel better could no longer do that for me. She would have always been the first person I would go to in times of need. All I wanted to do was tell her what was happening and for her to hold me, stroke my hair and tell me that it would all get better like she use to. 

But that was a long long time ago and I am now that person to her. It is the way things are and of course I understand and accept it, but now that time has passed and my health is better (and my hair is growing back!) it is time to recognise the sadness, deal with it and move on. I need to remind myself I did it for her. She was one of the main reasons for me to fight and get through this because protecting her is now my job and what I do for her. 

So when I first said it was to avoid Groundhog Day it was really to preserve it. So everyday would continue to be like the last and that we could hold onto this time forever with my mother's dementia not progressing and all her memories of us fading and I, in turn, holding onto my life before cancer and not getting closer to the inevitable - whatever my 'inevitable' might be.






Tuesday, 18 February 2014

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.

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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...





Thursday, 30 January 2014

Tuesday, 28 January 2014

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...












Sunday, 22 December 2013

We want to be together...

I'm not sure if any of you reading this will have had the pleasure of visiting the Brighton Marina, but for me it has never quite lived up to its promise. Being a Brightonian born and bred I remember when it wasn't there and all the excitement about it when it was being built and then the disappointment that it was not all it was hyped up to be. Over the years it has tried to reinvent itself with businesses coming and going and where it seemed to be at one point outlet city it's now transformed itself into restaurant-chain heaven with the added benefit of free parking and the myriad possibilities of finding 2 for 1 offers and using your Groupon and Wowcher deal. It's moved on from just offering Harvester pub food and the opportunity to purchase a yacht or cruiser as one does after lunch. It now boasts a superstore, bowling alley and multi-plex cinema. It's a veritable world of opportunities if indeed you like those sort of opportunities. But even if you love those opportunities they are rarely to be open and available to you at stupid o'clock in the morning!

So we aimlessly wander around trying to find somewhere to get a decent cup of coffee. What we end up with is a lukewarm cup of cheap and nasty tea and some dry inedible piece of toast (yes I too wonder how a simple 'dish' of toast could be made to be inedible but trust me it was!) and we need to make it last for nearly two hours. Not sure how we do it, but we are old masters at the art of conversation and time rushes by and we are soon making our way back to the spa. 

This time we are greeted like old friends and in fairness to them there is no hint of animosity towards the mad harridan who so spectacularly lost the plot earlier. The are professionalism personified. We are ushered to a waiting area to complete the personal information questionnaire. We are given an array of oils to smell in order to choose which one we would prefer as the base oil for the massage. We are then asked what sort of massage pressure we'd like. I am really warming up to this lovely place and the awful start to this day spa adventure has completely disappeared into the ether of time. We are both mulling over how forthcoming we want to be about our respective health problems as we don't want any other obstacles to get in our way of the elusive massage. I don't think they picked up on the cancer rant I had so we both decide that less is more. Our questionnaires are taken and a moment later the manager returns asking which one of us is pregnant. We both look at each other bemused by this revelation - each one waiting for the other to come clean. My friend mockingly asks is there something I want to tell her and I look overly horrified as if I have been caught out. I laugh it off in what feels like a completely over the top unconvincing way. It is quickly established that I have ticked the wrong box and in what feels incredibly lame we try a few attempts to laugh it off with cracks about chance being a fine thing, that it would be more like the immaculate conception and "letting the cat out of the bag", but our hosts are giggling and looking bemused by our strange double act. The wierd awkwardness is thankfully interjected by the manager telling us that the masseurs are ready for us and we are ushered down the sumptuous hallway to our respective massage havens. 

Well that's what I am thinking is about to happen, but it appears the spa has other thoughts for us. We are both ushered into a large beautifully and tastefully decorated room with lilting music and wonderful herbal aromas. I expect this is the anteroom and we will be taken to our respective rooms. But no that doesn't appear to be the case at all. I think my prostrations about needing to "be together" have been taken quite literally and we are indeed going to experience our massages side by side and most definitely together in what I can only imagine is their 'couples' room as there is no hint of us being separated. I ask one of the masseurs if we are going to another room after this and they look at each other and smile and shake their heads in unison. We are told that we can undress and get under the towels on our respective massage beds. For modesty purposes we are both given a pair of highly attractive paper pants. They leave the room giggling between themselves. 

"Oh my god honey." I say with my hands in my head. "I am so so sorry. All my bloody going on about wanting to be together they've taken it literally. I think they think we're a couple!" We both start to laugh. "Are you okay with us being in the same room?" I think my friend is so concerned that this massage is never going to happen that she's beyond caring just as long as it does actually happen. We've both been up for hours by this point and endured the very un-heady delights of the Marina so we're going to have this massage in whatever way they want to give it to us. We undress and put on our crispy crunchy paper pants.


Our masseurs return and begin our respective massages. My masseur is the older of the two and the firm technique I have requested is most certainly delivered. I think it is probably the best massage I have ever experienced and all the morning's angst has completely disappeared within five minutes of this amazing experience. It begins with an exfoliating massage which at first feels strange as it feels like an all over body oatmeal face mask with lots of grainy bits being rubbed and pummelled into my skin but god is it good. And so thorough...well actually a bit more thorough than I or my friend expected as at the same time we both let out a high pitched squeal as (in my case though I later find out in my friend's case too) the massage and exfoliating process extends to quite a concentrated breast massage! Now as this is my first experience of a Thai massage you seasoned massage-lovers or travellers may tell me this is par for the course, but as a Thai massage virgin it wasn't what I was expecting and considering I have become overly conscious of touching the lump I am not ready for this and keep squirming every time her fingers trace over the area. What seems like ages but is probably no more than a couple of minutes the breast massage ends. I am wondering if everyone gets this treatment or is just for 'couples'. Of course my imagination is now into overdrive and I am wondering if my friend has just been given the same treatment. 

The masseurs explain that we can now shower in the adjoining shower room to wash off the exfoliating debris. I suggest my friend goes first and as she goes towards the shower one of the masseurs says, "You can go into together if you want." I don't have my glasses on so I can't make out any facial expressions, but I am sure I can hear them giggling as I say, "No that's fine thank you." They leave the room chatting and laughing and I in my paranoid state think it's about us. My friend comes out of the shower and mumbles something about the paper pants, but I don't quite hear it as am still mortified that we could be the source of such amusement. 

The water is just the right temperature and pressure and my skins feels soft and supple. I am feeling quite glowing, radiant and even a bit goddess-like when I look down and see my plastic pants are filling up with water and my already not so small bottom looks positively gargantuan like those terrible 19th century pictures of Hottentot women with their extended buttocks!!! 

http://mf6form.files.wordpress.com/2013/01/hottentot-150-220.png

Oh god I need to get out of here to save my poor friend from this terrible sight that I am sure she can't help but make out through the frosted glass door. You certainly couldn't miss it that's for sure...


By the look on my face she can see that I am as disturbed as she was about the water filling pants and she gingerly asks whether the massage went places that I wasn't expecting and I say that it did and I was nervous that this might happen again, but we both agreed it would just add to the opinion they already had of us as being completely odd if we said anything. We both agreed that it was all probably very innocent and innocuous and it was just my mad 'togetherness' comments that made it feel wierd and that it was most probably the most normal thing in the world when having a Thai massage. 

The masseurs return and begin the second part of the massage. I am transported into massage heaven and am relaxed again and completely in the moment. There is no more 'breast action' and the only unusual thing is when my masseur jumps on the table to really get pummelling, but it is all so fantastic that I don't care where or how she does it just as long as she keeps doing it. 

The massage is all over too quickly and we are soon back into the hustle and bustle of Brighton and quaffing glasses of wine over a gorgeous tapas lunch with all our detoxing clearly behind us as we attempt to increase our toxicity levels. We laugh at what's just occurred and the confusion around us being a couple. However we conclude that maybe we have got it wrong and just because we were close to Brighton's gay community (or is the trendier term 'quarter' as Brighton very unmathematically seems to have a lot of quarters these days!)  Kemp Town or as us locals have affectionately called it for years Camp Town. Whatever it is it's made for a funny story and something to keep me chuckling in the grim days ahead. I wanted to create memories for what could be the dark times to come and I'd certainly done that. 

We part company radiant and glowing now from too much afternoon drinking and as I make my way back home I see a text from the Spa thanking us for our custom and giving us an early bird Valentine special for loving couples. Obviously we did a good show of togetherness even though I'd hidden my pregnancy from my lover and we were too shy to get into the shower together to scrub each other down dressed only in our bellowing watery pants. However for a massage like that well sometimes a girl's gotta do what a girl's gotta do...


Wednesday, 27 November 2013

Don't you know who I am? (answers on a postcard please!)

So I've left my job with all its trials and tribulations to face one of the most challenging chapters of my life. However I still have a few days left to do some nice things before I begin chemotherapy. It really feels like life is about to change unrecognisably for me and I want to have nice memories I can quickly access when I'm not feeling so great whilst in the thick of it all.

I have some spa vouchers given to me by my colleagues at work when I moved from one civil service department to another and had never gotten round to using. My partner's father had also given me some money to '...do something nice'. I thought if I added these together it would enable me to take someone with me to share the 'nice' experience I was determined to have. So I ask one of my lovely friends who very quickly takes up the offer and now I find myself looking for a spa that will take the vouchers. We are limited but eventually I find one that is in the Brighton Marina. Bit of an arse end of nowhere to get to on public transport, but if we sort out the timing well enough we can be in and out then off to enjoy a lovely leisurely lunch afterwards back in the bosom of the city centre with a few glasses of wine thrown in to get us all 'toxined' up again. 

I book us in for a Thai massage which works with the amount of money that I have and sounds quite lovely and hands-on according to the 'menu' on the website. None of that light sweeping touch effleurage stuff for me. I want to be pummelled and prodded and chopped. Basically 'man-handled' in a nice 'massagey' way. I am asked whether for an extra £20 each we would like to use the hydra therapy pool beforehand. It again sounds delightful and I sign us up to the whole works. I then get a phone call from a friend and before the conversation ends I tell her my plans which she thinks are great. However she is just concerned about the hydrotherapy pool and is worried that I might be opening up myself to potential infection threats prior to starting such aggressive treatment. At first I think she is being overly cautious. But although I am crapping myself about starting this treatment and so wish I wasn't I have already worked out the treatment plan and how long it's going to take and I don't want anything to delay the end date. I call the spa back and cancel the hydrotherapy pool. 

So the day arrives and we find ourselves off to the spa. I'm not quite sure what to expect as although the photos on the website looked gorgeous we all know that's no guarantee. However on this occasion it really was an amazing oasis of calm. Just what we both needed. Subtle atmospheric lightning, wonderfully evocative smells and fantastic sumptuous decor. I give our names to the receptionist. She looks confused and says there is no booking. She goes through her bookings sheet but our names do not appear. My feelings of calm and tranquility are starting to seep away and are quickly becoming replaced with anxiety and hysteria. I find my voice becoming high pitched and emotional. I haven't come to this beautiful oasis on two types of public transport to the pain-in-the-arse-to-get-to Marina. My 'Violet Beauregarde' of Charlie and the Chocolate Factory fame is riding to the surface. But it's not an ompah-lumpah I want and want NOW. It's my massage. I WANT IT AND I WANT IT NOW!!! I am short of saying to them the most ridiculous thing ever which is 'do you know how I am?' because quite clearly there is really no reason why on this earth they should know me. I don't even know who I am these days so why should I expect anyone else to know. Maybe subconsciously I'm looking for the answer, but trust me I wasn't being that philosophical and existentialist that day. I was just being a grumpy, hormonal mardy mare. Anyway it is quite clear from their booking sheet they haven't a fucking clue who I am!

I have decided that I will not be treated like this and in a hysterical torrent tell them that in no uncertain terms. Much of what I say is lost to them as English is not their first language, but they regardless of this are trying to placate me, but I am so caught up in my own melodrama that I start to descend into those murky depths that I vowed that I would never descend to - using my cancer for sympathy. I know not pretty or clever and am not proud, but all I could see was my imagined tranquil pre-treatment  odyssey turning into a nightmare which in turn (in my illogical reasoning) did not bode well for the treatment ahead. If booking a simple massage was beyond me how the fuck would I cope with nine months of intensive treatment for which I needed to keep on top of in order to get through it. 

Thankfully I choose to do this massage experience with a wonderful friend who admirably becomes the voice of reason possessing the skills of a expert negotiator navigating her way between two waring nations to establish foundations for peace talks in order to resolve this crisis. Firstly they have no appointments until 11am (it's now 10.00) but they will only be able to do one of us at that time and the next one at 12.30. "What the fuck..." I hear the words coming out of my mouth like a woman possessed. She quickly continues the negotiations at a pace hoping to cut me off before I start again.  But not before I chip in that "we want to be together" or else it's prolonging our time in arse-end-of-nowhere territory. She takes this on board and tries to find a time when they can accommodate us but she getting nowhere fast. I can't bear this anymore. I know very dramatic, but all I wanted was a relaxing massage to alleviate some of this stress that's been building up over the last few weeks (sorry who am I kidding - I mean the last few months/years/decades not that one session would be enough to untie those knots that I have lovingly and painstakingly nurtured which crisscross my back and shoulders!) Still what is happening here is certainly not what I wanted or expected. I should be being pummelled, chopped and remoulded back into something quite lovely. All floppy, flexible, agile and supple. But I am not anywhere near that. I am still in this husk of a body that is aching, miserable, tense and diseased. 

As I start to speak I see the receptionist usher someone over to deal with me as quite clearly she's had enough of my hysteronics. He is the manager and he explains that it appears I cancelled the booking. I explain as calmly as I can that I didn't. All I did was cancel our hydrotherapy pool session prior to the massages. I explain that I had booked appointments so that we could have the massages simultaneously as we had plans for the rest of the day. I keep my cool even surprising myself. However when he starts to say they can do one of us now and the other in two hours time I just lose the plot. I hear my voice raising and I am sure I see out of the corner of my eye the receptionist run for cover! "What do you not understand? WE WANT TO BE TOGETHER. How much clearer can I be? And if you can't do that then let's just forget." I can see my friend is mortified by that suggestion as she really wants this massage. She cranks up the negotiating skills into overdrive and ascertains that they can "do us together" in two hours time. Eureka! We have a break through. We are ushered out with reassurances that we will be have our request for togetherness fulfilled. Now the real challenge is to find what to do to fill two hours in the arse-end-of-nowhere...

Wednesday, 13 November 2013

Off piste

If you have followed my blog then you will know that it has been a series of posts about my experiences of being diagnosed with breast cancer and treatment. I have tried to post as regularly as I can being a mum to a 5 year old, a step mum to an 11 year old, a carer to my 85 year old mother who lives with us and has dementia as well as working three days a week. As you can imagine with all of that going on the period between posts can be sporadic. I aim for at least one a month but am conscious that doesn't always happen because life has a habit of getting in the way. I am also very aware that my story is a long one as it covers a year long period where lots happened which, at times, leads me to wonder if I might be beset by old age before I ever get to the end of it!

Following some constructive feedback from a seasoned blogger friend I have decided to aim for more output in a punchier style which may see me producing more posts than I had ever envisaged, but will hopefully keep the story going at a pace and in turn keep you, dear reader, interested and wanting more (well a girl can dream...) But do note the use of the word 'aim'. It is indeed my aim and those who know me well will know that's a very tall order as I am never short of words or the desire to use them or indeed possess the ability to know when to stop using them. However for my own selfish purposes I need to deposit all the 'stuff' that has accumulated in my head over the last two years somewhere else ie into my blog, in order to, I suppose, move on and get on with embracing this period of remission and my new life ahead. 

Anyway the title of this post not only refers to this update about future output, but also about going 'off piste' about the subject matter of my blog. So with this in mind I wanted to take this opportunity to add to the debate about the lack of diversity at the recent Mumsnet BlogFest. Both http://www.chocolateisnottheonlyfruit.blogspot.co.uk/?m=1 and http://pramonrye.wordpress.com/2013/11/10/5-thoughts-on-mumsnets-blogfest-2013/ have most eloquently captured my thoughts and feelings so I won't rehash the very pithy points they both have made. 

What I wanted to do was to encourage people to read their respective posts and spread the word about collectively wanting to make a difference and effect change. There is no apportioning of blame onto the organisers of that event and similar types of events. However those of us who have recognised this and have shared these thoughts between ourselves are keen to work with these organisations to break down barriers to engaging with a more diverse community of bloggers which would be a better and truer reflection of the wider society.  I hope I am right in saying that those women of colour who have expressed a view do not see themselves as the appointed spokespeople on this debate. We just have a point of view and want to express that point of view. Others may feel differently or indeed have no opinion at all. But that's ok because as we have established women bloggers come in a variety of guises. It's just an observation as women of colour that BlogFest seemed to have attracted very few people like ourselves which was also reflected in the choice of panel members as well as the contributors to the breakout sessions. 

Anyway am in jeopardy of breaking my new 'less is more' cardinal rule so will end with just saying it would be great to firstly see if there are (and I am sure there are) more than just the handful of non-white women bloggers who went to BlogFest out there, secondly to identify the barriers to engagement, thirdly finding ways to engage them in this debate and fourthly harness their energies and considerable talents in order to, in the words of Mahatma Gandhi, "Be the change you wish to see in the world". 

Right I'm off to get back 'on piste' and will return to what I unfortunately know best about which is my (mis)adventures with cancer in my crazy three generational household. Watch this space for the new improved 'Big C in 3G ' coming soon to a computer screen near you...