The New Normal #17 – Mountaineering

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Hello? Is there anyone still out there? Well, it’s been a while and, take it from me, that’s good news. No news is definitely good news when you’re in the ‘Cancer Zone’ (worst 90s youth club name ever) but I still get the head-bobbing concern from folk and things have happened so I thought I’d do some typing for your morbid entertainment.

First things first, the day to day stuff could do with some explanation for those not going through it – spoiler alert, it’s not very exciting. So, on a daily basis I’m still gluing a compression stocking to my whole right leg every morning whilst trying not to glue my beer belly to my thigh in my bleary eyed, half-awake state whilst acknowledging my 3-year old’s excited proclamations that various items in the room are, in fact, shapes (“that door is like a rectangle, daddy! And the light is like a circle”). Most days I do this on auto-pilot but every now and then I stop to think about a) how annoying it is to have to do this every day and b) how, at some point, my son is going to have to do some work at school about his family or getting dressed in the morning and is likely to illustrate daddy with one black leg much larger than the other (for clarity, my leg isn’t actually black, it’s just the stocking). When I have the energy I still use the horse brush previously mentioned in another post and in the evenings I have to de-glue my leg to let the skin breathe. Now, I can hear a whole raft of people out there rolling their eyes and saying, “is that it? My beauty regime takes far longer and involves removing hair with wax or some other torture that I choose to inflict on myself”. I hear your voices and I get where you’re coming from but my only excuse is to say that not only does this procedure not make me look any better, it also isn’t of my choosing – it’s just a better alternative to having an elephantine right leg and a foot that resembles a pasty that was been crimped by a drunk welder.

On a less frequent basis, I now visit Oncology and Plastic Surgery on an alternating basis to play a variety of games. With Oncology, I mostly play spot the difference with CT scans of my innards and, touch wood, so far there is no difference. Nothing has grown, moved, appeared or attached itself to something it shouldn’t. My mum recently had to go for her first CT scan and, being of a nervous disposition, asked me what it was like and my explanation now that I’ve had a few (at least 10 I think) is that it’s a fairly relaxing experience with a mildly disconcerting warm sensation when they shoot the dye around your system. Ironically, after her scan Mama Monger revealed that she hadn’t felt the warm sensation which seemed to have disappointed her but at least she got to ride through the giant polo machine. As for Plastic Surgery, the game here is more subtle as I do the dance of consultants and surgeons rapidly trying to remember if we’ve met before and if it was when I was clothed and conscious or naked and out for the count – I expect the late Hugh Hefner had similar problems on a daily basis. Needless to say, things are all fine on the front too and aside from some prodding, squeezing and poking of my lymph nodes there isn’t much to these appointments although I have been sure to note where my lymph nodes actually are in case anyone tries to get a little handsy – there are no lymph nodes in my buttocks, dear Doctor.

One interesting turn of events has been that I have unwittingly become the face (or maybe leg) of lymphoedema treatment for St Luke’s Hospice where I go to get measured for my stockings. My ever suffering/supportive other half had given the St Luke’s team her perspective on being the partner of someone with lymphoedema and they were so taken with her piece that they asked us to come in to have a photo taken to accompany the piece. What then transpired was one of those social situations that are like Kryptonite to an English person as the conversation went along the lines of:

Photographer: So, if you could just pop your trousers off as you normally would and hop up on to the couch then we’ll take some shots.

Me: Oh. OK. So you want to take some photos of me with my trousers off?

Photographer: (fiddling with lighting) Yeah. With your family in the background.

Me: (being too English to do anything else but exchanging looks of panic, amusement and disbelief with my better half): OK then. I’ll…..do that then.

Firstly, I rarely pop anything on or off anymore and my hopping days are long gone. Secondly, I don’t think I’ve ever even been on a date where things escalated to photography and semi-nudity within 5 minutes but then I again, I am a gentleman so I wouldn’t tell even if I had. After the ignominy of my photo shoot, I was then asked to do a video interview about living with lymphoedema, the results of which you can find at the bottom of this post, which I was happy to do to raise awareness and dispel some myths. Also, I’m not bragging but no script and one take. Just sayin’.

The real reason for writing at this particular time, however, is that I feel like I’ve made a bit of a mental breakthrough and that might be something that helps someone else. On one of my recent visits to Oncology, I had mentioned that I was struggling to achieve the weight loss that is so highly recommended as part of the recovery process to support a healthy immune system and, as always, the Lovely Lady from Leeds gave me some time to talk this through. Over the course of a conversation in the corner of a busy Oncology department, I explained my frustration, anger and personal disappointment in not being able to lose weight in the way I’m being advised to. I’ve had the stock advice from my GP, “It’s simple, eat less and do more”, but how much less and how much more. Also, when you leave the house at around 7.00am and don’t get home until gone 6.00pm just in time to eat with the family, spend a precious 30 minutes with your child before doing the bath, bed and beyond (aka story time) routine that leaves me with about as much energy as your average mum on Christmas day evening and 8.00pm on a week day is not my prime time for going jogging or swimming. Then there’s the ‘what not to do’ advice – don’t do high impact sports, don’t run, don’t put pressure on your leg, don’t stand for long periods, don’t sit for long periods without elevating your leg. All great advice but in the gaps between all the do nots (not doughnuts), there isn’t a lot of space for what I can actually do to shift the set of spare tyres currently hugging my torso.

Explaining all of this out loud (hard for me, I’m a typer not a talker) brought tears to my eyes as I was both relieved to say it out loud but also still incredibly frustrated. You see, when you’re recovering from an illness or an operation they give you clear instructions of what to do – drink water constantly, move around, have daily goals – and I can work with that. I have had good recovery rates from operations and followed the rules to the letter but this weight loss thing seems beyond me. I’ve asked friends and you get a few staple responses along the lines of “you’ve got to find what works for you” or “come and do [insert exercise type here] with me, it’s great – oh, you work during the day!?”. My favourite is “just hit the gym and the weight will fall off”. And this is where that Lovely Lady from Leeds comes in to her own with a simple and brain puncturing sentence – “Oh I hate gyms. Why, when you’ve had a life-threatening illness would you choose to spend your time in a sweaty room with strangers all admiring their Lycra clad bodies in mirrors? I hate Lycra too”. No, the advice I got this time made sense and it came in three forms:

1)    “Stop being so hard on yourself. In the space of two years you’ve had two major operations and have returned to work full time. You have a demanding full-time job and a young family so give yourself a break”.

2)    “Stop worrying about what other people think of you”. All my answers as to why I wanted to lose weight were based on feeling fat in the eyes of others or doing it because I thought I should. “Do it for yourself IF you want to”, she said.

3)      “Try the things you enjoyed and see if the advice you’ve been given checks out”. I used to play Sqaush and football, both too high impact for me to do anymore I’ve been told but, as has been pointed out before, I’m about 40 years too young and with one too many X chromosomes to be considered a ‘typical’ lymphoedema patient so why not give it a go and rewrite the medical advice.

The relief brought on by this conversation, delivered with no-nonsense but plenty of empathy, was worth a hundred packs of anti-depressants or watching endless inspirational videos on YouTube to try finding a piece of advice that resonated. A few days later, I was sat on the sofa while my little boy sat on my lap and we watched yet another episode of Paw Patrol (the one with the short-sighted giant octopus) and he was doing his usual thing of shuffling around to find a comfy spot. When he was finally in the sweet spot he looked up at me and, without any prompting or sense of being ‘deliberate’ said, “Daddy, I like the way you feel”.  Obviously, my heart melted, but also I realised that here is the one person who’s opinion matters to me and he thinks I’m just fine the way I am (yes, Gemma, your opinion matters as well but you own four (that’s 4) Black Eyed Pea albums so your opinion is also a little unreliable). And that, my friends, is quite a liberating feeling. With one short sentence, 7 simple words, I was free of the critical eyes of others thinking “there goes Fatty McBaldy, probably on his way to Greggs” and I could genuinely, honestly start to think about doing this weight loss thing for me and nobody else. Miraculously, the very next day I had lost a pound and over the following weeks I’ve lost more and put some on but I don’t feel angry any more.

We talked, the Lovely Lady from Leeds and I. We talked about those people that have terrible diseases like cancer and then recover before climbing a mountain or travelling the world on a pedalo and how they make normal people, like me, feel inadequate. What we decided was that you never get much press coverage for people who recover from a bad place and make it to see their child start school or carry on to get married or watch that film they’d always wanted to see or just return to a normal life with work and family and friends and bills. But everyone has their own mountain to climb in situations like these and you can only climb that mountain in a way that works for your so I’ve identified my mountain* and now I’ve just got start putting one foot in front of the other until I get to where I want to be, not where I think other people think I should be.

*I realise there are tonnes of belly size jokes to be made here but I’ve resisted that because I’m incredibly mature. So there.

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