Farewell, cancer buddy

By , August 10, 2015 1:52 pm

ClaireMarilynYesterday, I lost my best cancer buddy.  Although ”lost” seems to imply I’ve been careless, and the “‘best” clearly applies to the buddy, not the cancer, but that’s silly semantics and you all know what I mean.

Marilyn Siem Reap
Marilyn and I had been firm friends since we arrived in Vietnam and found ourselves in the same minibus heading to the same apartment block, along with Carol and Tracey. During that first year, we went as a group to Hoi An for the first holiday, but also as a pair to Singapore for a weekend, and Siem Reap to see the temples of Angkor Wat.  Marilyn’s dedication to the guide book ensured that not only did we see all the main five star tourist temples, we also saw everything down to three stars, and several of the twos as well.  Marilyn’s kind nature meant that she even took an additional day out she didn’t really want to do to give more work to our taxi driver, who’s young son was in the local hospital.

SingaporeI’ve one thing left to try in Singpore though, and that’s the Night Zoo, as we couldn’t get there as the rain was simply too fierce.  It meant we had longer to spend in Raffles.  It was tough, but we got through it.  I saw Marilyn for the last time on Wednesday, and whilst she was clearly very weak by then, the best reaction I had from her was when I suggested I go and make us a couple of Singapore Slings, and get some monkey nuts and throw the shells on the floor.

Over the following years, we remained friends, using each other as sounding boards for not quite work conversations and each telling the other to ease off on the time spent at work. In 2012 we were spending alternate Tuesday evenings working our way around the restaurants in Thao Dien, aiming to have a full set by the end of the academic year.  Our years were both cut short however, when we found ourselves as the only two patients in Family Medical in District One on a Thursday evening in the last week of term.  I was receiving results from tests earlier in the week that indicated I needed to see a breast cancer specialist (they were right), whilst Marilyn was awaiting a scan on a bad back she was uncertain about flying with.  She sent me off to go out, saying I had enough to worry about and should enjoy my night.  I wish I’d stayed, as later that evening Marilyn rang to say the scan results were not good and she was heading back to the UK immediately (it’s a longer story, and isn’t mine to tell, but in hindsight she was able to find much humour despite the circumstances).

For the next six months supported each other through our various treatment regimes, managing occasionally to catch up when our chemo cycles and tiredness levels allowed.  It was interesting to see the variations in side effects and the different advice given by different hospitals and specialists.  I learnt so much about how this isn’t one disease with one solution.  Throughout it all, I couldn’t help but realise just how very straightforward my own cancer was.  Caught early, 7 months of treatment, but then job done, no follow up meds, checks in a year.  Marilyn was always facing a much more complex situation, hers was more advanced, and we discovered that once ovarian cancer re-occurs (which it did) it will do so again.  We’ve caught up each holiday since, Marilyn still keen to know all the Vietnam gossip, and I’ve been fascinated by her work as a Governor back in the UK.  Retirement was not coming naturally to Marilyn, even with all she had going on.

We talked last week about how we both love our jobs, but wish we could have done better at working out which bits really didn’t matter and what simply wasn’t worth worrying about, even if we were spending more time on it.  I think getting better at that may take me the rest of my working life, but I do aim to try.  I will miss Marilyn’s kind heart, her professionalism, her humour, her guidance, her stories and her friendship.  I may not miss the time spent waiting for her to find something among the myriad of things she would insist on carrying around in her (oversized) handbag (or bag within a bag).

Following Marilyn’s instructions, I’m trying to be glad that I had the opportunity to know her through good times and bad.  I’m glad I got to spend time with her over the last few weeks, and I’m glad she is no longer suffering.

But before I end, it’s apparent from this post that catching cancer early is always the better option, so here are some handy hints (mind you, I’m not trying to turn all of my friends into cyberchondriacs, just reinforcing the need to do the checks yourself that you can, just in case):

Ovarian Cancer Symptoms

How to check for breast cancer

Checking for testicular cancer

Pancreatic cancer symptoms

Brain tumour diagnoses

 

Celebrating 40

By , January 7, 2015 1:04 am

Today I turn 40.  There’s some debate about when today as Patsi says’s it’s not until midnight tonight Vietnam time (I was born at 5pm), and Angi says it’s UK time, so 7am in the Ho.  Either way, the big four oh is here.  I remember when Patsi herself (Mum) turned 40, and John Stump put one of the first notices to go up on the roundabout into Berkeley announcing the fact.  I can remember thinking that’s a long way off and wondering what my life would be like.

I certainly never imagined sitting in an apartment in Ho Chi Minh City preparing to go for a swim (there may not be many more occasions when I can swim as many lengths as I’m years old – particularly when the pool is 37.5m long!).  I also never imagined the relief and excitement at simply getting here.

This will be the first birthday I’ve celebrated in three years, and in the name of making up for lost time I’ll be taking inspiration from my wonderful friend Emma Goodwin and making it last for just over 6 months, with a dinner tonight, a Saigon party on the 17th and a 40.5 in the UK in the summer (invites to follow later in the year for the last one – 10th July at Harborne).

Two years ago today I received the news that the type and grade of my cancer tumor meant four months of chemotherapy followed by four weeks of radiotherapy.  Mum, Dad and I went for lunch in the Berkeley Arms on the way home. I have a vivid memory of crying into my chicken and cashew nut stir fry as I tried to compose emails. But let’s be honest, hopefully that sets the marker for bad birthdays, and all being well I get to live at least another 38 years and never have a birthday that bad.  Even on dull birthdays where there’s work and revision classes to run (always seemed to happen in the UK), I get to look back and go ‘could be worse’.  That’s quite special, although not unique as it’s an experience I share with a Uni flatmate.  Last year, I’ll confess to being something of an emotional wreck as I tried to ignore the memories of the year before, and tried very hard to pretend it wasn’t happening.

So this year, I celebrate.  I celebrate getting here.  I celebrate getting to look forward.  I celebrate all of you who supported me at the time and those that have helped me get back up to speed since rejoining ‘normal’ life.

Now the cheeky part. Over the last two years, many people have commented on the positivity and focus I was able to show during my treatment. I was able to be that way partly because (as we all know) I am incredibly stubborn, but also because of the guidance and support I received at the Maggie’s Centre next to the hospital.

Maggie’s provides free practical, emotional and social support to people with cancer and their family and friends. They covered all the non-medical parts: practical advice about benefits, tying headscarves and eating well. Through them I met my cancer buddies and could talk each visit to other patients and relatives about their experiences. Maggie’s also gave Dad a place to wait, drink coffee, read his book and talk to other people whilst I had each treatment, which was more valuable that I can explain.  People with cancer, their family and friends need somewhere like Maggie’s.

I’m past the point of expecting, needing or wanting presents, and I’ve not got around to running a race or doing something athletic where I can ask for sponsorship. So if you’re feeling generous, asking for donations in lieu of birthday presents is my way of saying thank you to Maggie’s.  The link is here: https://www.givey.com/claireis40

I’ve tried to pick an online site where as much of the money as possible goes to the charity – I hope it works.  I also get many of you have your own charities you support – I’ll be equally as chuffed in you make an extra dontation to them instead.   I will set up something similar specifically for Maggie’s Cheltenham for the UK party, so you may also wish to hold off and donate to that one instead.

Right, that pool beckons.  Happy new year everyone.  Last year I kept my new year’s resolution of ‘do not go on the Daily Mail website’.  It was incredibly good for the soul.  This year I’m going for ‘blog at least once a month’, let’s see how I do.

Thanks

Claire

 

This post is initially brought to you without pictures as the Vietnam internet is being so incredibly slow with reported under sea cable issues (and who am I to cast doubt on the reliability of that information).

What a difference a year makes….

By , May 23, 2014 12:48 am
The only problem with my left side today is the one inflicted by soup!

The only problem with my left side today is the one inflicted by soup!

Today marks the one year anniversary of the end of my chemotherapy. It really doesn’t seem any time since I was finding it tough dealing with the anniversary of it all starting, although the trip back to the UK at the end of January for my first set of (all clear) check ups somehow seems a world away.  The memories and experience are now such a part of who I am, it’s an odd feeling to remember the life that was before.

Since Christmas and the check-ups the fatigue has gone, and it’s brilliant to have my brain back working at something closer to full speed.  I think my short term memory is forever damaged, and oddly, my eyes still struggle with bright lights (and yes, because of this I never stay out past midnight for fear of turning into a Gremlin).  The downside is that I’ve let myself slip back into working late, partly because I can, and partly because I feel the need to catch up on things that were put to one side when there was no way of coping.  Hindsight tells me that back to work full time in another country three weeks after the end of seven months of treatment was not my brightest idea, and I thank everyone that helped me get through that first half term.  I would name and praise, but I don’t remember much about it.  Next year, I’ll be more organised and be more systematic in cutting back (said with hope rather than any degree of certainty).

I’m back to being a rubbish correspondent (if it’s any consolation there are plenty of half written emails in my head). And there are people I wish I could be there for more easily, time difference and distance shouldn’t be the excuse I let it be. I’ve got few plans for the summer other than the dates booked for me.  Maybe someday soon the list of people I want to visit and spend time with will get out from my head and onto an email (if you want me to come see you, or you come to me, let me know).  I’m looking forward to spending time at home and not having deadlines and appointments influence everything we do.

I’m looking forward to going travelling next year to new places (rather than holidaying where I’ve been before) and maybe diving.  I’m looking forward to moving into a new flat, one I get to choose this time.  I’m looking forward to scoring some cricket matches played on a grass wicket where batsmen know the value of a high left elbow.

Today, I’m celebrating the fact I get to look forward.

 

The Circus

By , February 17, 2014 2:18 am

So if I blog about missing my day’s in the circus, would it make it a reliable source?

Supporting statuses

By , October 23, 2013 11:33 am

ChemoOn.JPGThere are many aspects to life after cancer that are hard to get my head around, and I find myself having to consider carefully why in some instances I have what feels like a disproportionately emotional response.

For example, minor issues with my new flat are way out of proportion in my head – but they don’t seem so bad once I figured out I was far more upset than I’d realised about the absence of a sense of ‘coming home’.  In those first few weeks that sense was provided much more by sitting in my classroom and then I’d leave, shattered, and go home to an empty flat that had my things in it, but didn’t feel like home.  It’s getting better (although the cupboards are still stupid sizes and things seem to be going mouldy much more readily).

I nearly cried when I didn’t get a new residence card, instead I have a 10 month visa in my passport.  I calmed down when I was promised a card next year, and realised I could get a photo that looks like me, and not be the curtain fringed wig wearer who’s in my new passport.  I get that these are not proportionate responses.

And then last week I was was included in several copies of the same Facebook message from a variety of friends (a repeat from a few years ago) saying that to raise awareness of October as breast cancer month ‘we women’ should change our status to an oblique reference to the location of our handbags.  It didn’t help that there was a Facebook glitch and whilst I tried to immediately remove myself from the threads, I was inundated with ‘oh God, every time someone replies I get a message’ and ‘please stop’ messages.  These were annoying because the person writing them didn’t seem to get that if no-one replied the problem would cease.  But then there were those that took objection to people leaving the conversation and started telling me (or so it felt, I realise it was a generalised reply) how important it was to show our support for breast cancer awareness.

I was taken aback by the strength of my own reaction, and forced to reflect on the fact that several years ago now I’m fairly certain I joined in on a similar style message about bra colours.  Was I now being hypocritical? Was I being irrational? Why was I crying when another friend’s status appeared in my news feed telling me they ‘like it on the kitchen table’?

I clung to the fact that when the idea of participating in Movember was first mooted at school last year I queried how it was being used as awareness. Men’s health seemed a big vague – men should be healthy, good point.  I shouldn’t have worried or doubted Em and Hetvi, they pulled it round with brilliant fundraising and displays during the day and during parents’ evenings.  Somehow knowing I’d doubted the effectiveness of  ‘do this funny thing and it will raise awareness’ before was comforting.  My reaction was still me, not simply a post cancer overly serious and boring stance.

I’ve read some of the online thoughts on this, including this article on the Huffington Post, and am using this to clarify and explain my own thoughts.

I worry my stance is hypocritical.  How can a heavy user of social media (me) have such issues with the use of social media?  What makes me think I have the right to comment on how others use social media?

I used my own Facebook statuses to let friends know how I was doing during and after treatment. I used my own Facebook statuses to provide a way for people to easily show their support, that they were thinking of me on the key events of finishing chemotherapy and radiotherapy.  They were what I would call ‘tart’ posts – I consciously asked people to like them, and explicitly said how I would interpret that like.  Partly I wanted to know that people were thinking of me, partly I wanted to make it easy for them to show support, partly I knew that I was struggling to stay on top of message replies and this was quick and easy.

I didn’t use my own Facebook status to announce directly I had cancer. I did that through email, private message and group, by phone, and by asking mutual friends to pass on the news.  And then when it became apparent I couldn’t keep the news off there and still be an active user, I resurrected this blog.

The likes and comments coming in when I was curled up on the sofa with my sunglasses on back in May were a brilliant tonic.  I’d asked people to raise a glass on my behalf, and the first like and comment came from an Australian lady I’d met whilst diving in Durban the previous summer.  We’d got on, we’d become Facebook friends so she could share a picture she’d taken of me on the dive and had stayed in touch through the odd comment and like.  It didn’t matter that I didn’t know her that well, or might never see her again, she was thinking of me, and ticking the Africa box in my secret bid to cover as many continents and time zones as possible with well wishers.

When Elaine shared my assembly post I was touched that anyone thought it worthy of a wider audience.

So why did the handbag messages and statuses get to me so much?  Because they don’t change anything.  Yes, it may get picked up by mainstream media, but what do they *do* other than say “I am aware breast cancer exists”/”I feel bad for people with breast cancer”?

Here’s what they don’t do in terms of awareness.  They don’t tell you that inverted nipples, dimpled skin, non-period time pain in breasts or armpits and rashes around nipples are all signs of breast cancer that aren’t finding a lump.  They don’t tell you that no matter how early you catch it you may need chemotherapy.  They don’t tell you that you can’t sunbathe for a good year after radiotherapy.  They don’t tell you that lifestyle is highly likely to increase risk factors in many people today (they leave that to the Daily Mail).  They don’t tell you that men get breast cancer too.

I get irritated by (and always have) statuses that are along the lines of ‘many people won’t care enough about -insert cause here- to change their status to this for at least an hour.  It’s *not* I don’t care, I’m just using my own facebook to, well, frankly, be about me.  I’m not a fan of the frequent sharing of celebrity posts, or the pictures ‘show your support for our troops more than a semi naked pop star’ pictures.  But that’s your choice – although if that’s mostly what you do, you may still be my friend, but in all honesty, you probably aren’t part of my news feed.

The difference is that in supporting me all of you are more aware of breast cancer – its causes, its treatment, its signs.  In liking my posts, or raising your glass at key times, you were doing what I needed.  In talking about what I was going through, I can only hope that should you have to face something similar you have the knowledge to do something early, that you may support charities that research the causes or provide support for patients and their wider circle.  If you work for a make-up firm you keep supporting Look good, feel better because it really does make a difference.  If you work in a clothes shop and someone (in a headscarf) asks if you have any higher necked t-shirts you give a more considered response than ‘no, they aren’t the fashion this year, you should try this one on’.  (Yes, I was told that.  No, they didn’t get any of my other shopping busy thereafter).

I feel bad that this all means I’m criticising friends who did join in, and that’s not my intention.  This is about explaining where I’m at, and my reaction.  The nature of some of the message replies I was copied in on really do worry me about the sheep mentality and peer pressure of social media.  The notion that you’re a bad person for not joining in – it is after all easier to click like than it is to do most things, so you should, right?  Mostly it strikes me of being all too like chain letters – anyone remember them?  Send something to the top person on the list and send this on to six of your friends.  Hindsight tells me this was basically pyramid selling, and misfortune has not headed my way for any I didn’t send on (not even the Daily Mail or Express put cancer down to childhood chain letter compliance).

So I will continue to use Facebook to ask things of my friends.  I will share posts where people are fundraising.  I will try and contribute to a range of these.  I will continue my own brand of slightly inappropriate gallows humour in relation to my own situation.  I will continue to be thankful for the friends and family who were there for me online and in person when I was most in need.

But I won’t care where anyone puts their handbag, what month they were born in, or what colour their bra is, unless somehow, somewhere I can see that it means that someone out there knows more, does more, gets more support when they need it.  And I will try mighty hard to be consistent about this.

This post has already been sombre in tone, but in going back to read the comments on my key status updates it occurred to me I hadn’t seen anything in a while from Annelie, the first person to raise her glass after my chemo.  I knew she’d recently finished her distance learning degree with distinction, her Guesthouse was doing well, and she was after suggestions of books to read with her sudden excess of spare time.  I’m shocked and upset to discover that four weeks ago she died in a diving accident on a 100m tech dive.

I will have a drink tonight in her honour, it seems the least I can do.

 

 

 

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