A whirlwind of perfect moments

Wow.

That’s the only word I can really think of to describe how I feel right now. It’s been an emotional five days, perfect but emotional all the same.

I’ve not yet been on land 24 hours and I am missing being on a boat immensely, also still swaying a little! Ok, shall I backtrack before I ramble on so we are all on the same page?

I have just returned from a Return to Sail Trip with the Ellen MacArthur Cancer Trust (EMCT). I sailed with them for the first time directly after my treatment and I did a second trip the following year but I hadn’t ever felt like I could go back especially after the pain in my hips heightened and my arm stopped straightening altogether. I honestly believed I would be hopeless on a boat, but I loved it so much before that after a hard few months and feeling pretty down about everything in general I made the decision to go back. I had no idea how I would climb on and off a boat, wander up and down one without falling over or even help with the sail winching but I knew I needed to push past my comfort zone and this was the thing to do it.

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First day excitement.

Man was I right! My comfort zone was smashed as soon as I arrived when I was with a bunch of people I’d never met and was blindfolded with my crew to start making shapes with string, as random as it sounds it worked to get us communicating, I honestly don’t know how my partially sighted friends manage. When it came time to go down to the boat I’ll admit I was nervous, the same nerves I had felt the whole week leading up to the trip were worse than ever. The question was, could I step up onto the boat at all? The answer, sadly, was no. However my skipper who I knew from a previous trip simply helped me figure out a way to get on myself. This instantly settled some of my nerves because it didn’t matter that my leg was too stubborn to lift that far, we just worked with it. After settling into the boat and setting off I was extremely happy to be reminded how to do the basic things like coil a rope and I was surprised how much came back to me after four years.

I did struggle to begin with, I struggled to move around the boat, to stand up without feeling like I would fall flat on my face or overboard for a swim. I was frustrated because I don’t like not being able to do things as well so I just end up annoyed at myself but I came to realise it actually wasn’t my ability that was in my way, it was my confidence in what I could do.

I think when you have a condition that people don’t really understand, whether it be anything from chronic pain, joint condition, cancer or long term effects from chemo, people’s reactions fall into a few categories, there are those who don’t understand how much just walking around for the day can take out of you…I’ve had alot of people laugh at the fact I sometimes take naps in an afternoon because it’s probably seen as kind of lazy but being in pain all day and having problems with my blood iron levels makes me exhausted so I need it. Then there are the people who want to wrap you in cotton wool…the ones that say things like “I don’t think you should do that,” “You need to take it easy.” They are just looking out for us but man can it get annoying, I know my limitations, I know if I need to take some time out, there are good days and bad days and I know myself how to manage both. Finally there are those who expect you to be able to do everything they can because “You look fine.” Although yes I’ll have a go at doing anything alot of the time I have to figure out my own way to do it by making small changes or it takes me a bit longer than others.

So after all those different kinds of reactions I wasn’t very confident in my own ability to get around a boat and actually do some sailing, it’s probably one of the most challenging places to be. This is where my EMCT skipper came in, he would stand with me if I was on the helm and it was a bit rocky just in case I did fall, showed me the best parts of the boat to grip for balance if I was moving up and down it, him and the volunteers taught me the knots for different things on the first day and how to coil a rope, it took some practice but I managed to get it. Being in such a supportive and empowering environment made me begin to believe in myself a hell of alot more. I knew that if I struggled it was ok, that people wouldn’t laugh if I did fall or expect me to be able to do everything to the best standard at first, winching the sail took me a little longer the first time because my dodgy arm got tired but it’s all about balancing it and I was determined to finish the job.

The first time I threw the line from the boat to be tied on I was so wobbly trying to balance that it didn’t go anywhere but the last time I did it it went really well and was sorted within a minute. I also by the end of the week was able to step up onto my boat. Those small things that probably aren’t very significant to anyone else are the things that I noticed a difference in. I had this kind of irrational fear of not being able to do something or of falling over (probably not so irrational when I’m clumsy at the best of times!) so I avoided getting on either of the other two boats for the first two days, I knew how stressed I’d felt trying to work out getting on mine so I literally just avoided putting myself in that situation again. I was embarrassed by not being able to do it which isn’t exactly uncommon for me. I think when you have so many different reactions to your condition, not all of them good ones it does make you become a little embarrassed and a little unsure of yourself. I had definitely convinced myself I couldn’t do it.

 

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Moonspray – my home for the trip. Love this boat.

On the trip there were ten of us ‘young people’ as they call us, all of us having experienced tumours, surgery, chemotherapy or radiotherapy. I knew that I would be meeting lots of new people on the trip and I was apprehensive about that, the first time I went I got alot out of it and I made some great friends, back then I was younger, I went on an under 18’s trip first but I didn’t have the same types of issues I have now. To be fair, back then, apart from the fact I’d not long been having chemo I was alot fitter and not in half as much pain. Now I am further away from my treatment I honestly wasn’t sure what it would be like to

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Both sails up!

try to connect with people who either were having it or had recently. Surprisingly this time was so much easier than before, I wasn’t the only one that was further off, I wasn’t the only that dealt with long term complications and I loved that, it’s one of those things that you can’t describe to people that don’t get it. I got so much more out of this time than I did back then because I understand more now about what my long term effects mean and how to manage them, I have more information and being around people that got it. That weren’t judgmental or think I should just be fine the whole time because I don’t look like I have any issues was perfect. We had discussions about our treatment and what it meant for us but we didn’t have to discuss it all the time, we didn’t need to ask each other lots of questions about it or try to understand because it was kind of an unspoken understanding…we could help and support each other if we needed it, sit up playing random games for hours…also getting the boys in some face masks, it was just so much fun. To be around a group of people who accept you for you, not for who they think you should be because of a condition. I could be a hundred percent myself and because there was a small group we all bonded and I know we’ll keep in contact with each other.

As the days went on I began to feel better about being on the boat, I think alot of that was down to the skipper on my boat, he really did get me as involved as I wanted to be, if I wanted to have a go at something him and the volunteers would show me how, I did get quite tired on one of the days and my legs got a bit harder to move but I just did some sitting down and took a few minutes when I needed to.

Time for some compulsory posing on a boat pictures. I couldn’t resist! (Yes I did the titanic pose before anyone asks.)

I think the biggest thing that helped me see a difference is that my skipper knew I could do it, he knew I could safely move up and down the boat and he trusted me to take off and put on fenders, to sit at the bow of the boat when it was a bit rocky…he knew I could and not only showed me how to do things but encouraged me to do them myself which helped me realise that I could.

Something else I noticed is that I felt so relaxed, I would never usually wear joggers at home but it didn’t bother me because it was practical, comfortable and I didn’t feel the need to get up each day and put lots of makeup on or wonder what I might look best in, I wandered from the boat to the bathroom blocks in pyjamas every morning, it just didn’t matter which I loved.

The staff and volunteers weren’t just good with the practical side, they knew how to manage all of our little quirks and that made it so much easier especially when things got a little emotional on one of the nights, naturally I shy away from everyone when I am emotional, I don’t like to make a fuss but because I felt comfortable and supported with my skipper it meant that we did have a chat and I instantly felt calmer and like I could go and join the others for some games. It was those small moments that I don’t think people realise make all the difference, feeling like that for me could have instantly meant I went straight to bed and missed out on alot of the fun I had that night but the fact I could be open with him meant that it turned into something amazing.

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Sitting at the bow in rocky waters, got a bit wet and could feel the salt from the water but it was worth it.

I have alot of proud moments from this trip and overall I can’t believe the difference I feel in just the short time I was away, these are some of my proudest moments:

  • Saturday night: After needing a bit of time away from the group due to being a bit overwhelmed I actually climbed onto the boat that was the hardest to get onto by myself. The staff offered me help but I wanted to try and managed it just with a bit of guidance, I can’t describe how good that made me feel when I had been worried about it.
  • Sunday morning: Co-ordinating helming the boat and drinking hot chocolate with marshmallows, all while we were swaying quite a bit! Multitasking or what?! I was so happy that my balance was good enough…and I didn’t spill any hot chocolate, that would have been a tragedy.
  • Saturday: Actually opening up to someone when I needed to and not shying away, this was huge for me because it’s something I would never do normally.
  • Making my way up to stand by the main sail while the boat was moving and sort out the sail ties! This balancing lark isn’t as hard as I thought it was.
  • Moving up and down the boat without any problems even when it was windy.
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When I finally had this helming thing down.

I could go on forever but I’ve learnt so much in the past five days that I don’t think anything can compare to it; these are the things I’ve learnt:

  • Actually I can do pretty much anything I want to and should really believe in myself alot more.
  • I now know why I struggle to connect with the people around me alot of the time…because being a young survivor of cancer and having a long term condition makes your life very different to those around you and of a similar age, I just don’t have the same mindset or hold the same values as those people that a few years ago I would have spent all my time with and this trip helped me realise that was ok, the people I’ve connected with this past week get it and it’s nice that I’m not the only one that doesn’t quite fit in to a friendship group anymore, I’m ok with that now because I know that I have those people that do understand. I try hard to ‘fit in’ so to speak and to not let people know when I am struggling a little or just too tired, the only sign when you meet me that I have any condition is that I walk with a limp but putting on that “not in pain, bright eyed, bushy tailed” act and pushing myself a little too much, that in itself can be draining and this trip helped me realise that I don’t have to explain to anyone. I can manage perfectly fine and adapt my way of doing things myself so I can have lots of energy early in a morning, have a break later on in the day and still join in the fun in the evening, it’s about the balance.
  • How to cook chicken! – a bit random and basic I know but being a vegetarian it’s something I’d never done before so I appreciated my little cooking lesson on board.
  • I CAN do it, I can balance, I can winch a sail and I can do those physically demanding things that I was so sure I couldn’t. I cannot tell you how proud I am of those little things I managed to do.

Oddly enough as the days went on and I got over my initial nerves I did become more confident and I discovered that I find getting around on a boat so much easier than I do on land. I think it’s probably got something to do with how close everything is in proximity to each other, so once you’re on, no steps are too high and there is always something to hold onto if I did feel like I needed to, it helped with my balance so much and whilst actually on the water there is opportunity to sit and just chill once everything with the sails etc are sorted. I could control the direction of the boat, with the helm being so big I found it easier than I do a car steering wheel because my arm wasn’t in a cramped position to do it. I found being on a boat easier than I do anything else which really surprised me because it’s the last place I’d expect. I also love being on the water, pretty sure I should have been a mermaid! The rain didn’t even bother me. I definetely want to learn more about and get more involved in sailing in the future.

Looking at the others in the group, knowing some of their mobility issues and knowing it’s natural that we would all have a guard up at first I was so happy to see them all being able to get involved and extremely proud of them, I’d only known them a few days but it felt like a family and all getting together to play games and chat was such valuable time for us. It wasn’t until the final day when my skipper said I’d done well was that I realised I was one of them, I was one of the people who should feel proud because I managed things that half my family would never expect, I don’t think anyone I am around at home ever expected I would be able to balance on a boat with two sails up, rain hitting my face and some rather big waves, I would never have thought I could…but it’s all about the people around you, they believed in me so there is no reason that I couldn’t too and it meant I could push the boundaries on what I thought my limitations were.

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I was determined to finish turning this to get the sail out! It’s harder than you might think but worth it.

I can’t thank the staff enough, especially those on my boat, my skipper is outstanding, not only at his job but also at supporting and guiding other people. Giving them the confidence to do it themselves. The volunteers were fab too. I’m so grateful to them for helping me realise I am capable of so much. I came into the trip pretty terrified at the thought of all aspects of it, from meeting new people to even climbing onto a boat, also feeling rubbish about not yet having a job and about being in increased pain but I came away feeling like I can do anything I want and actually for the first time in a long time having things I want to work towards, having things that inspire me to push through, knowing that it’s ok to not have a complete plan…alot of the time on the boat I kind of worked it out as I went on how I was feeling physically at that moment and that taught me that I can do those things I didn’t think I could, all I have to have is the determination to.

I’m extremely inspired by the experience and empowered by the fact that I could do it. Being confident in who I am is something I’ve not had a problem with really until this year but having confidence in what I can do and my limitations is something I do often struggle with, mostly because I have a fear of making my bones any worse if I did fall or pull it in the wrong way. It has been easily one of the best experiences of my life and solidified how I felt about being a cancer survivor, yes having had cancer is a bit rubbish, having weaker bones and being tired all the time isn’t the most fun but I wouldn’t change it…I wouldn’t change a thing because it’s made me ten times stronger, ten times more mature, more accepting of others and it’s meant that I have the determination to overcome those things that might stop me because I don’t want to miss out on anything that will help me grow.

We saw some amazing things on our trip, watching the sunsets and sunrise was so peaceful.

EMCT and their staff are amazing and I don’t think they realise the impact they can have, I was so blessed and grateful to have the skipper I had because without him I don’t think I would have even attempted half the stuff I was doing without thinking by the end of the trip. I now know I can do it and shouldn’t keep getting annoyed at myself if it takes me a while to work out how. Like the night I got on the boat next to mine…I stood looking at it for a good few seconds before I worked out how I could do it but that’s ok. I probably still have a way to go to be a hundred percent sure about doing some things and I will still be nervous but I’ve gone from no confidence in my physical ability to knowing that really nothing is impossible and I can find a way.

My little catch phrase on the trip probably became, “I got this, I can do it,” I would say this pretty much every time someone offered help by the end of the trip because I could do it myself and I finally knew that. So if you’re reading this and you have any lack of confidence in your ability, have any kind of disability or condition or just simply don’t think you can do something…believe me, if I got this, so do you.

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Our three trip boats, I could get on and off all of these without help by the end of the trip!

This has been probably the longest post I’ve written but I honestly couldn’t shorten it, it’s been too perfect. The trust really do create a whirlwind of perfect memories. I mean me…on a boat, really? Who would have thought a girl with two bad hips, a none straightening arm, constant pain and who struggles to stay awake at the best of times would sail for five days, not fall over, feel confident that she could balance and drink hot chocolate whilst steering a boat and make some really important connections?  I know I definitely didn’t expect it.

Fay xx

 

 

 

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