This is a post I have wanted to write for a long time now but for one reason or another I haven’t. Events in recent weeks however, have made it feel more relevant than ever now.
A few years before I was diagnosed with cancer for the second time I wrote to my childhood doctor and the man who saved my life first time round, Dr Craft.
I wanted to give him an update about what kind of person I had become. We hadn’t been in touch since I was a child but something compelled me to write to him and let him know that I grown up to be a good person.
In my message I told him how I now worked for the police as a Crime Scene Investigator and helped catch criminals. I told him I was a good person, who loved his family and was nice to people. He was very good to myself and my family when I was ill and I guess I just wanted him to know that I was now doing some good in the world by helping others.
There were many reasons I did this but perhaps the main one was to help justify my own existence. Fingers crossed you are not reading this thinking that i’m a total nutter but after meeting so many people who have either lost someone or who have come through a traumatic time, i’m guessing not.
The truth is I have always felt guilty about surviving cancer. Much like PTSD, I had always associated survivors guilt with war and veterans. Soldiers who had lost their friends and colleagues and found it difficult to understand why they had survived when others didn’t.
When I meet people who have lost someone to cancer I immediately want to curl up into a ball and not mention anything about myself or 101 Things To Do When You Survive.
After surviving cancer for the second time and then struggling with PTSD, my self loathing was at its worst. How dare I feel so sad and scared when so many others had lost their life to cancer. I absolutely hated myself for feeling this way.
When I came up with the idea of 101 so many doubts went through my mind. Would my story be seen as scare mongering, would it upset people with cancer and would admitting how scared and sad I felt after surviving cancer upset those who lost someone to this awful disease.
These fears were fully realised when my story was in the press in 2013 – 2014. Along with thousands of positive and lovely messages, I also received a few negative ones.
Some called me smug whilst others said it wasn’t fair that I had survived when their loved ones didn’t. Some just missed the point and berated me for having the money to do go on my trip.
The positive comments far outweighed the negative ones but in true Amazon and Trip Advisor style it was the negative ones that had the greatest impact. I wished I hadn’t let them get to me so much at the time. I know who I am and what I was trying to do. I was always taught growing up… ‘when you are dealt a lemon, make lemonade’ so that’s what i’ve tried to do.
I, like many seem to feel guilty on a daily basis. My Facebook and Twitter accounts are filled with things about cancer which sometimes really gets to me and makes me feel sick and sometimes bad for posting a happy photo or story. The truth is, like many others, I feel happiest when I feel like i’m helping someone but I am also sent so many fundraising requests that I feel awful for not helping with them all.
Over the past few years I have met many people who have lost friends or relatives far too early. One woman, who lost her son told me that sometimes she sometimes catches herself when she feels happy as she feels guilty because he isn’t there anymore.
Survivors guilt is a very real and awful thing and something nobody should feel.
I have been doing a lot of thinking about this over the past year and especially this past week. I am truly tired of feeling guilty and bad about myself.
I thought about how I would want people to react if I had died. I most certainly wouldn’t want them to feel bad or guilty. That would break my heart. I would only want to see them happy and to enjoy the life that has been given to them.
None of us should feel guilty about surviving anything at all. I said this in a recent post but it is so true, we really do owe it to those that we have lost to live the best and happiest lives we possibly can. Otherwise what is the point in living at all.
The main reason I’m sharing this is to let people know that they are not alone in feeling this way and you are certainly not crazy. Us humans are an odd bunch and our minds are very tricky things indeed. Acknowledging survivors guilt can be the first step in overcoming it.
Live the best and happiest life you can gang. You deserve it I promise you…. we all do. The people who aren’t still here would want that for you.
SUN, SKIN CANCER AND THE SECRET TO THE PERFECT TAN
Summer is here and I can’t even begin to tell you how happy this makes me. When the sun is shining I feel like I’m on top of the world. Much like Superman, the sun is my life force.
If I’m honest I also love having a bit of a tan…not for vanity reasons, but simply because when I have a tan people tell me I look well, which means a lot more to me these days. But a tan is definitely not a sign of good health. It’s a sign that you’ve damaged your skin – UV rays can destroy cells, accelerate the ageing process and cause skin cancer.
Skin cancer is the most common type of cancer in Britain. Cases of malignant melanoma have increased by 360% since the 1970’s. That’s a scary statistic!
For my trip I pretty much followed the summer for two years, dodging either side of the equator and avoiding winter like the plague.
The first photo was taken was taken in the San Blas Islands on my way to Colombia and this was probably the most tanned I’ve ever been in my life. I’ll tell you my non-deliberate tanning secret in a mo.
I recently visited the Mole Clinic in London for a skin cancer check up as I had a couple of dodgy looking moles and wondered what damage I may have done to my skin whilst showing off my scars on beaches around the world.
The nurse did a full body scan and, for some unknown reason, I decided to wear the smallest and loosest underpants I own so had to wrap my jumper around my nether regions, lest she be scarred for life (see pic).
It seems I have one potentially dodgy looking mole which the nurse photographed and sent for analysis. She believes that there is nothing to worry about but I was told to come back in three months to see if the mole had changed at all.
Athough the sun is amazing it is also pretty dangerous and contributes to 75% of the ageing process! Yikes! Ever wondered why your butt cheeks are so smooth? It’s because they rarely see the sun.
The sun is also the main cause of skin cancer. Brits especially love nothing more than to bake ourselves in the sun, trying to get as brown as we possibly can. We go on holiday for a week and believe that the only way to get a tan is to not use suncream.
This is not the case! I am the master of accidental tanning and I can tell you now that the best way to get the perfect tan is…….. high factor suncream! No less the 30 SPF. Anything less than this is a waste of time. I have found that high factor suncream helps protect your skin and from my experience allows for a deeper more long lasting tan!
The sun is of course very important for our necessary intake of vitamin D but research shows that just 10 minutes in the early morning sun without sun cream is enough to get our recommended dosage.
So gang, ideally cover up when you’re in the sun but if you’re not going to do that…get your high factor suncream on, get regular checks and enjoy this beautiful sunshine.
TRAVEL INSURANCE FOR THOSE WITH PRE-EXISTING MEDICAL CONDITIONS
If you have any type of pre-existing medical condition including cancer and need travel insurance then these guys are the people to see.
Because of insurancewith I was able to travel the world at an affordable price with all my ‘conditions’ covered!
Check them out and if you can, please share and take a moment to vote for them for the British Travel Awards. CLICK TO VOTE
They deserve all the publicity and recognition they can get for enabling those with disabilities to travel at an affordable rate.
Visit their website here – insurancewith
NEW BIKE, NEW CHALLENGE
Ladies and gents, please meet the newest member of the 101 gang…..my brand spanking new bike!
I need some ideas of what to call it so please let me know of any suggestions you have? A good bike should have a name!
Those of you who have followed my adventure for the past few years will know that in 2014 I took part in a charity bike ride in the states called AngelRide. It was the first and, up to now, the only time I had ever been on a road bike.
I fell in love with cycling and Angelride turned out to be the most incredible experience of my life.
I have sworn ever since that I would get my own bike and also added a couple of cycling challenges to my list, one being to cycle from John O’Groats to Lands End, which I hope to complete next year. The other is to cycle across the USA….date still to be announced for that puppy!
I had hoped to complete John O’Groats to Lands End (the length of Britain) this year but my fitness and motivation took a bit of a knock this so I decided against it until I had adequate time to train for it. Especially when Andy, the team leader for Team 101 in the USA presents me with a map of what he thinks we should do! Yikes! We may have to modify those timings a wee bit Andy……or a lot!;). My haematology doctor may have a fit if she saw that!
Anyone who watched my interview on the BBC this week will know there are a couple of little physical issues caused by my life saving treatment as a child that make my idea of normal slightly different to that of others.
The main ones are the blood clot I have in the vein that takes blood back to my heart and the others are scarred lungs from radiotherapy and a bit of an aged heart caused by the chemo.
The good news is…. I visited Bristol Royal Infirmary last week and had myself a little MOT to see how the old lung and heart are doing.
An Echocardiogram and a lung function test showed that they are a wee bit under the normal scale but that there was nothing to worry about. It also seems that these little issues can be massively be improved upon with regular exercise! I also met my vascular surgeon on Tuesday who pretty much said go for it and then suggested doing a triathlon! Love it!
So gang, I am going to be on an adventure of fitness and cycling for the next 9 months which I plan on sharing with you as a bit of a rehabilitation research. This will also include info on nutrition, rest and coping with fatigue…something I struggle with after exercise.
Due to my messed up circulation system I struggle to run as blood can’t get back to my heart quick enough so my leg swells up and I get dizzy, but cycling is low impact which means it’s perfect for someone with a deep blood clot like mine. I wont lie -i’m super scared of riding on roads but hopefully I’ll get over this with a bit of practice.
So hear goes, I’ll be taking her out and about for the first time this weekend so i’ll let you know how I get on.
A huge thank you to Sales Filter, insurancewith and Snow and Rock for becoming sponsors of Team 101. I can’t thank you guys enough.
The plan is to achieve something incredible, raise a lot of awareness for all things cancer and mental health related, inspire lots of people and hopefully raise a bit of cash for charity.
Let the riding and fitness extravaganza begin!
A MAGICAL EVENING WITH MACMILLAN
A truly incredible and emotional evening talking to 200 amazing Macmillan doctors and healthcare workers at the Macmillan Primary Care Conference in London.
This wonderful charity gave me counselling during my worst time with PTSD and helped me realise that I wasn’t alone in feeling the way I did after surviving cancer.
It was an honour to be there and to receive a standing ovation was beyond amazing.
I am extremely grateful that this charity exists.
I AM NOT DEFINED BY MY MEDICAL HISTORY
Last week I had the honour of speaking at the Northern European Conference on Travel Medicine in London – an amazing event that attracts nurses, doctors and health professionals from all over the continent who descend on London to hear the latest from world class speakers at the top of their medical fields (….and then me!). I have given a lot of talks over the years, but this was definitely one of the highlights of my speaking career. It was the ideal platform for me to get across a message I feel so passionately about, and one that I feel is vital for every health professional to hear – particularly those advising people on travel.
Our medical history does not define us.
When someone is going through a tough time, facing serious illness, or intensive treatment, it is really easy for health professionals or friends and family to advise against travel. After all, it is in unnecessary risk…things could go wrong. What happens if you get sick abroad? What about medication? What about insurance? There are so many reasons not to travel. But it could also be the best thing you ever do for yourself, both physically and mentally.
On paper, I am a medical nightmare (cancer twice, one kidney, half a bowel, DVT, PTSD and in remission for bowel cancer). But 5 years ago, in my anxious/insomniac/post-cancer state, I was lucky enough to have an open-minded professor who could see that travel was the best possible treatment for me. His words of encouragement gave me goosebumps when I broached the subject of travelling “Greig, i think that is a marvellous idea.”
All of the potential problems I foresaw were overcome with some planning and preparation. I stocked up on medication, I took my INR device with me to test my blood as I went, I had 6 monthly checks up at hospitals around the world and most of all I listened to my body.
Despite my plethora of ‘problems’, I also found affordable travel insurance with an amazing company called Insurancewith.com , which was set-up by a woman who had had breast cancer and struggled to get insured for a holiday during her chemo. She later set up this amazing company.
My trip was without a doubt the best medicine I could have had at what was my worst time. But, as Ive said in the past, it wasn’t even just the trip itself that made me feel better. It was the months of research, route-planning, and excited preparation that lead up to it that started to make me feel better. And Ive retrospectively discovered why this was. Our brains can’t really distinguish between reality and imagination – so even just visualising yourself doing something you enjoy can be enough to release the feel-good chemicals in your brain. So by imagining myself on these adventures, doing amazing things, I was already changing my emotional state. And as my mental health approved, my physical health soon followed. My stress-induced eczema cleared up, I started sleeping – I was rediscovering my old self again.
Now I know that obviously travel may not be possible for everyone, either physically or financially. But if it is what you really want to do, I would just encourage you to have some long chats with your doctor about the potential risks and benefits. It could be the best decision you ever make.
For further advice and information on health travel please visit nathnac.net.
Rehabilitation after cancer
I’m not sure if any of you have noticed but I’ve got quite an oddly shaped body. With the loss of my kidney at 8 years old I became a little bit lop sided.
Being the amazing body it is the left kidney grew in size to compensate for the loss of the right so I’m a bit chunkier on my left. My rib cage is also a bit skew whiff and the left side sticks out way more than the right. Added to this I also have a curved spine.
After a period of time being unable to walk properly after developing DVT at 21, I lost all confidence in my left leg and as a result I now walk with a slight limp.
My core (abdomen) has taken a bit of a beating from the operation I had to remove a section of my bowel. This led to a loss of confidence in my core strength and as a result I’m now pretty weak where once I was strong.
It is only after meeting a wonderful woman called Lou James have I now realised that perhaps there should have been more support for me during this time which would have helped with the long term physical and emotional effects of my cancer treatment. I met up with Lou in Auckland yesterday after one of the 101 gang, Hilary, told me about what Lou is doing and I just loved it.
Lou is the founder of the PINC and STEEL rehabilitation trust. She is an experienced physiotherapist and established the PINC programme after seeing the physical and mental toll that cancer had on the lives of women. In 2011 she introduced the male equivalent called the STEEL Program.
Lou’s programmes have helped thousands of people at every stage of their cancer treatment so they can minimise the side effects of treatment and help them have the best quality of life they can.
Talking to Lou I was instantly captivated by her passion and belief in these programs. We all know that exercise is good for both body and mind but Lou also explained to me the importance of informing patients of the reasons why they get pain where they do and showing them what exercises they can do to help alleviate it and make that area stronger.
The benefits of physiotherapy and certain exercises were something that have never really been mentioned to me during past illnesses which now seems ridiculous considering what my body went through. I think I would be a much stronger and more physically confident person if they had.
With cancer patients not really being eligible for free access to rehabilitation services Lou has set up a trust which raises money to help patients pay for this vital treatment.
PINC AND STEEL now operate in New Zealand, UK, Australia and South Africa.
You can find out more information at the website – http://www.pincandsteel.com/
To follow the PINC and STEEL Facebook page here – https://www.facebook.com/TeamPINC?ref=br_tf
This is well worth a look gang and if you have any similar issues to the ones I do then please try and see an expert like the specialists at PINC and Steel.
I have realised after chatting to Lou that there is a lot my body could benefit and improve upon by seeing an expert. When I get home I’m going to do just that
Keep up the amazing work Lou and all at PINC and STEEL.
Rest, welly and getting checked out
What started out as an amazing way to start the year after jumping out of a plane and surviving then took a turn for the worse after an episode of food poisoning on New Year’s Day. I’ve now spent the past two weeks struggling to get my energy back. My muscles have been aching and have felt weak and I just can’t seem to get going. The other day I came to a small incline in the road and my heart dropped. I was instantly transported back to memories of Richmond Hill during my treatment when I would be forced to stop 3 to 4 times before managing to get to the top whilst on my way to visit my brother.
I haven’t felt this bad for a long time and this is the second time I’ve been to see a doctor recently about fatigue. I gave myself two weeks to feel better and after that I said that I would go and see a doctor so on Monday I did just that.
I saw a wonderful Doctor called Dr Winton who examined the usual glands and did some weird tapping thing on my body….I’m never quite sure what the point of this is but he seemed to know what he was doing. He scared me a bit when he listened to my chest and asking “did any of your blood clot break off and get into your lung?”. I replied with a cautionary “noooo….why?”.
Ha! Maybe don’t ask that question when you’ve not been listening to my chest for the past 5 minutes with a concerned look on your face.
The doc said he thought all was fine and that I was probably just worn out but took bloods anyway. I just got the results back and all is fine and dandy. The usual fears of blood test results will never go away. You may have heard a massive sigh of relief wherever you are in the world after the voice at the other end of the phone simply replies “yep…all normal” and with that brief answer life goes on.
My reason for sharing this is just to say it is definitely better to be safe than sorry so please get yourself checked out if you don’t ever feel right. Some people call this being a hypochondriac but I call it being safe. After all it was getting checked out early that saved my life from bowel cancer. I also want to tell those of you who have been ill that despite all my escapades I also get tired so don’t feel that you are alone. I now need rest more than I ever have done before. Rest is key after going through such treatment and operations.
Although this trip has been wonderful for my mind I think my body might be getting a bit worn out now. It’s been good to rest.
So I’ve been lucky enough to have had a wonderful base in Wellington whilst I recover. I don’t think Ruth’s remote control or couch have ever seen so much action! I’ve watched an entire season of Game of Thrones! Love it!
Wellington is such a cool little city to recuperate in.
The other night Ruth and I went to the botanical gardens with a picnic and watched a free concert in amongst the beautiful gardens.
I’ve also been spending time down at the harbour side with a cups of green tea and a good book about mindfulness called The Power of Now which was bought for me by my friend Jane from Cancer Research UK. It’s very good and has got some great techniques for coping with anxiety.
I also loved just sitting and watching people face their fear and jumping from the diving platform at the harbour. It was hilarious seeing big Maori muscle men debating whether to jump or not as a little girl, who couldn’t have been more than 10 came along, walked past them and immediately made the jump. How’s that for fearless!
We went to the Embassy Theatre last night to see the final Hobbit film which was amazing! I couldn’t quite believe I was watching the final film where it all started. This is where they had the premier of the first film, the Fellowship of the Ring back in 2001. All the names of the cast are engrained on the chairs that they sat in at the premier. I sat two seats away from Liv Tyler’s chair but sadly she had been replaced with a big hairy guy that night. Not quite my type!:)
So I’m finally starting to feel better and and I can now feel my strength coming back. As well as lots rest I’ve been eating and drinking lots of juices, healthy foods and making sure I take my supplements.
I’m hoping to set off again next week before Ruth realises that the only thing I’ve done to help make dinner so far is taking on the role of ‘supervisor’. I think she may have figured this out already though.
A huge thank you to Ruth for putting up with me over the past couple of weeks. I am eternally grateful to her for her generosity. She has been so kind. Thank you to beautiful Wellington as well for being a wonderful place just to be.
South Island, I’m coming back for you very very soon.
Truthful health update
As I write this I am sitting in a little cafe in Wellington trying to find a comfortable position where my arms don’t feel like they are going to fall off. After my skydive I ate something which didn’t agree with me and spent all of New Years night in the toilet of the place I was staying in Cardrona in the South Island. Not to go into too much details but come the morning I was void of any moisture I had left in my body.
As a result I have been left pretty wiped out and rather than recover in a hostel I drove back with my friends Ruth and Ozen to Wellington to sort myself out.
I also underestimated just how busy it would be at this time of year in the South Island. The only part of my trip that was ever really planned was when I started my trip volunteering with Raleigh international in Costa Rica. Everything else I’ve just figured out along the way which includes accommodation and excursions.
I found myself in a position in Queenstown and Wanaka where I couldn’t find a single hostel to stay in. Everywhere was booked up. I’ve never experienced this before but it made me realise that I may need to plan my time in NZ a wee bit better than I have in other countries.
So I’m back in wonderful Welly staying at lovely Ruth’s place and renergising with healthy green veggies and juices. I think the whole one kidney and half a bowel thing might affect me a wee bit more than others when it comes to this sort of thing. In Buenos Aries I ended up in hospital after another bout of food poisoning (culprit-fish) after passing out on the toilet. Dehydration seems to be the thing that affects me more than anything else.
Although I know that my body has just taken a beaten from sickness and diarrhoea my thoughts still turn to my nemesis. I question why I feel this way and I start to feel every twinge in my stomach area wondering what it is. I hate this feeling as I begin to feel like a fraud. How quickly I crumble when I don’t feel well. Fortunately I realise what I’m doing and do something about it. In this case and in most cases come to think of it…I turn to writing.
I’ve gotten up on my tired bum and come to a little coffee shop on Cuba street in Wellington and started to write. It always makes me feel better and I find I can think more clearly in amongst the hustle and bustle of a cafe. When I read it back it seems like someone else has written it and like most people I seem to be able to advise others better than I can advise myself. It is because I wrote it down that I know what I want to say to this person; Just rest, Listen to your body, Eat well, drink lots and whatever you do don’t worry about it as this will exhaust you even more.
I’m often very hard on my body. I believe that if I’m cancer free theI should be able to do anything. Unfortunately it doesn’t quite work like that. Not for me and I’m sure not for anyone else.
The truth is I’ve been feeling more and more tired for a while now. In Sydney I went to hospital to get checked out as I struggled to even get up of the couch. They did the usual tests and all was well. Although I was at home for a short while before I left for Oz it wasn’t the relaxing time I wanted as I was all over the country for weddings, christenings and seeing friends and family. It was more exhausting than travelling.
Anyhoo, I wasn’t going to disclose any of this as I didn’t want it sound like I was moaning but a friend suggested that you guys might like to know how I’m really feeling.
I became frustrated when reading cancer survivor books when I was ill because they made it sound like life was worry free after cancer. I’ve never felt like that. I still worry, I still get tired and I still have to reassure myself that all is well. I never wanted 101 Things To When You Survive to portray anything but the truth when it came to my blog.
So here it is…. I feel a bit rubbish at the moment. The good news is this is not the first time I’ve felt like this on this trip. Any long term traveller will tell you that sometimes searching for a clean pair of pants at the bottom of a bag gets a bit tiring!:) Add a bout of food poisoning and you’re about ready to jump on the next plane home.
I was about to write ‘moan over’ to finish this off but it’s not a moan. I think it just sometimes good to remind ourselves that we need to listen to our bodies more and that being tired doesn’t mean you’ve got cancer but it’s always good to get checked out anyway! After writing this I have once again convinced myself of this fact.
Truth update over. I’m off back to the couch!:)
4 year all clear and the Atlantic Ocean
The results are in and it has now been four years since I was diagnosed with bowel cancer and I’m still cancer free! Boom!
Many of you will know what it’s like to go for those monthly and yearly check ups. I compare these check ups to standing on a fence where one side leads to the bottom of a very deep canyon and the other side leads to a little table with a pen and a piece of paper with a heading that simply says ‘things to do’.
I’m now off the fence and sitting at that very table with pen in hand and adding something to that list. That thing is to sail across the Atlantic Ocean in 2015! Yikes!
That lovely woman in the picture is the person who has gotten me into this madness!:) Her name is Kirsty and she contacted me a while ago to see if she could help me do some sailing. Kirsty lost her mum to cancer 3 years ago and found my website through our beautiful mutual friend Lisa who I used to work with.
It turns out that Lisa and Kirsty are part of a crew to sail across the Atlantic next year in the Transatlantic Race from the US to the UK and they asked if I would like to join them.
After weeks of emails and Skype conversations I got to meet Kirsty on Sunday before I caught train back to my folks house. Kirsty and I connected immediately in emails and it was lovely to also do the same in person.
I’ve never really sailed before and the organiser is slightly concerned that 2.5 weeks at sea may not be for me.
We had a chat on the phone the other day and he expressed his concern that I need to be sure what I’m letting myself in for. He said that he didn’t want it to be just another ‘notch on my bedpost’ and that I would need to do it for the right reasons.
I have many reasons for wanting to do this. The main one is that I want to prove to myself that I can do it because if I do complete this then it is yet another challenge where I can tell myself and others living with serious illness that anything is possible.
The second reason is that it is to raise money for a wonderful cause. The Ellen MacArthur cancer trust takes young people aged 8-24 out sailing to help them rebuild their confidence on their way to recovery from cancer. Much like the hole in the wall gang it also aims to bring young people who have had similar experiences together in a fun and safe environment where their troubles can be left behind for a few days.
The third reason is that I want to experience what it feels like in the middle of the Atlantic Ocean when I take over my shift at 3 o’clock in morning. What does the air smell like, how bright do those beautiful stars shine, how do the waves sound when you are so far away from land? I want to find out these things more than anything now.
In my former life I was a Crime Investigator for the metropolitan police. When there I set up an initiative called Project Scarlet and as a result my pals called me Captain Scarlet. The boat I’ll be sailing in is called the Scarlet Oyster! Surely another sign that I should do this…no?!:)
The next few weeks are now going to be spent hopping on and off different boats so I can get some sailing experience before I leave for Australia next month.
It will also give me the opportunity to see if I have the sea legs for a 2.5 week race or not. With a name like Trout surely I’ll be an expert!:)
So with the 4 year all clear in the bag and permission received from my doctors! It’s full sail ahead!
I’m feeling eternally grateful to still be here and to even contemplate a future let alone one which involves such an epic challenge such as this. For those of you who are not well at the moment, you’re time with that pen and paper is coming so get thinking about your list now!