GUEST BLOG BY THE INSPIRATIONAL ALEXA
“I like this picture because of me and the world around me. I look at the picture and do not care about my funny hair, my long arms and huge hands, my grin, my funny trousers. I see my friend taking the picture on a warmish day, I can hear her laughing and I feel safe.”
I am Alexa. I relocated from Germany to London, my favourite city, in June 2012. In 2014 I was diagnosed with breast cancer. I had a mastectomy, followed by 6 cycles of chemotherapy and 3 weeks of radiotherapy, all at the Royal Free Hospital in Hampstead, near to my new home in Chalk Farm. For at least the next 5 years I am on Tamoxifen.
My friends and family wanted me to return to Germany for treatment but I decided not to. I could not stand the thought of living in a guest room while I was ill and feeling down. I wanted to be surrounded by all the things I love, including my new life in London. For every chemo cycle one family member or friend came over to help out for a few days and after they flew back home I had help from friends and colleagues from London. They brought me cooked food, laughter and distraction. It was in this time that I realised that some colleagues turned into real friends.
From Facebook and 52 Lives I came across your Facebook page and bought one of the 101 Things-Hoodies. Please find attached 2 pictures where I wear it:
The first picture was taken by my friend Birgit. I go to see her and her family in Felixstowe, Suffolk regularly. I went there and because the weather was quite nice I wanted to see the port of Felixstowe. The best place to see it and have a good overview is from the Fort Felixstowe.
I like this picture because of me and the world around me. I look at the picture and do not care about my funny hair, my long arms and huge hands, my grin, my funny trousers. I see my friend taking the picture on a warmish day, I can hear her laughing and I feel safe (It´s maybe because of the walls surrounding the fort).
I also like to look at the other people/strangers in the picture. The girl in the right corner seems to thing “What is that crazy lady doing?”. And other visitors do not notice me at all, they just do what they were coming for, to visit the fort.
Sometimes it is such a good feeling that, although my life changed and shifted so much during the last 15 months, the world has not changed much and people keep on doing their things without knowing me or my story.
In the second one you can not see the logo well but I am getting something I always wanted to get, a tattoo. I never knew what design to get and where on my body to put it but when I was diagnosed with cancer I knew it before I started treatment. It is a “C” around my ankle, starting as a black dark letter, turning into a bird swarm.
One of the birds is red symbolising a hot spot in my pelvis, doctors found in a full body scan after my diagnosis which could be a metastasis. I always loved birds. So I hope to turn something really scary and horrible into something beautiful.
SURPRISING THE AMAZING OLIVER
Jaime and I surprised a little boy at his School so we could drop off a whole load of kindness courtesy of Winsley School in Bath.
Oliver is 6 years old and has been donating his super duper bone marrow and T-cells to his sister Evie who has Hodgkins Lymphoma.
As we all know it’s not just the person with cancer who struggles but also those around them.
Oliver has been through so much and has only ever wanted his big sister to be well again.
Oliver is Life no. 2 of the 52 Lives School Kindness Project and the children at Winsley School made cards, wrote beautiful letters and made video messages telling Oliver just how brave and kind they think he is. They also heard that Oliver liked going to the cinema so used the remainder of their cake sale money to buy cinema tickets for Oliver and his family.
We can confirm that Oliver is every bit the legend we thought he was and it was so lovely to see his reaction to receiving such kind gifts. His little screech at receiving the cinema voucher was especially awesome!:)
To see the video Winsley school made for Oliver and also see Oliver’s reaction when we surprised him at his school click here; – Winsley School’s message for Oliver
Turn off the news people, the world is filled with kind and wonderful people!
THE BEST JOB IN THE WORLD
Last week I started what I believe to be possibly the best job on the entire planet.
I am now the Director of Kindness (I wanted Captain Kindness) for the charity 52 Lives where I am running an initiative called the School Kindness Project.
Each week I attend a different primary school in the country and using a fun interactive workshop, I talk to children about the personal and social benefits of being kind. The aim is to empower them by helping them to see that things that they do and choices they make, even as children, have the power to make a difference in someone’s life.
This is reinforced during the workshops as we share a story about a child in need of help and the children work together to do something kind for that child.
The idea is to encourage children to be kinder in their daily lives.
There is actually a real science about kindness whereby being kind releases a whole host of feel good chemicals in the brain which makes us feel good. Best of all though, being kind benefits others even more.
It’s also the most contagious thing in the entire world so when you are kind, you also encourage others to be kind which improves relationships, strengthens communities and makes this world a far better place to live in.
What better way than to spread kindness than by educating our future generations about its benefits.
I have now delivered the workshop to three schools and the feedback has been incredible. Taking kindness into schools has been a dream of founder Jaime for years now. Jaime set up 52 Lives a few years ago with the aim of spreading kindness and changing a life each week of the year.
Last Monday I headed up to Leicester to visit an amazing school called Barley Croft.
We chatted about kindness and thought up different ways we can be kind on a daily basis before the kids came up with ideas of how to help a little called Tegan. Tegan is 9 years old and has recently been diagnosed with the same cancer I had when I was 7.
The kids at Barley Croft made Tegan cards and friendship bracelets, wrote letters, sent supportive video messages and even sang Tegan a song.
The children were absolutely buzzing from helping someone in need which was the most incredible sight to see.
Winsley school in Bath have already decided to make 52 Lives their chosen charity of the year and have devoted the year to doing kind deeds and helping change the lives of 52 people in need. The kids also used their cake sale money to buy our life of the week, Oliver, some cinema tickets. Amazing!
I have given a lot of talks in my life now but I can safely say that these have been my most favourite. It is incredible to see the joy that both children and teachers get out of helping others.
If you know a primary school who you think might benefit from a kindness workshop then please get in touch gang. We’d love to hear from you and it’s totally free for schools!
If you also know of any children that are in need of some kindness then please also let us know about them.
Click here for more details and to also follow the 52 Lives school kindness blog.
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.
RALEIGH ALUMNI GLOBAL CONFERENCE
“Never underestimate the impact you can have as an individual. The ripples of your actions will spread further than you can ever imagine”.
This was my closing message when addressing the Raleigh International Global Alumni conference last weekend.
Speakers from all around the world attended the event to inspire positive social change and action. Raleigh was thing no.3 on my list and without doubt one of the most rewarding and fulfilling experiences of my life. I was extremely honoured to be the closing speaker at this wonderful event and very proud to be a Raleigh Alumni.
Definitely one for your list!
Through all of my experiences – with cancer, with my list and with my two years of travelling, the biggest lesson I have learned is that life is not about the places I’ve been, and my happiness does not come from ticking things off a list. It’s about people, and love and kindness. My greatest sense of fulfilment has come from people – volunteering, working alongside good people, doing things to help others and , above all, sharing life with those you love.
So get out there gang, and do some good. It is the best self-help medicine there is.
A VERY SAD WEEK
It is with great sadness that I write this post to let you all know that both Rowena and Ali sadly passed away this week. They were two of the most incredible and inspiring people I have ever had the privilege of knowing.
They were given just a short time to live when first diagnosed but both have lived years longer than doctors predicted. In that time they showed us all that a terminal diagnosis doesn’t have to be the end of life but can be the start of a new life.
Ali and her incredible family have fundraised tirelessly for cancer research and she was the inspiration in setting up a Team 101 at this years Ascot Relay for Life.
Rowena inspired thousands of people with her television documentary about life with terminal cancer and her laugh and positive energy infected everyone who had the honour of meeting her.
I had been visiting Rowena in her hospice these past two months and it has broken my heart to see her in such pain. The only comfort we can take from their loss is knowing that they are now free from any pain and suffering.
Our love and thoughts are with the families of these amazing girls who will stay in our hearts forever.
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!
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.
AN INTERVIEW WITH MY SURVIVAL STORY
A wonderfully produced video and interview about 101 Things To Do When You Survive from the inspiring guys at My Survival Story.
MY SURVIVAL STORY
Earlier this year I was interviewed by two very inspiring people from Switzerland.
Martin, a fellow cancer survivor and his fiancé Katarina are on a global mission to seek out other cancer survivors and share their stories as a way of inspiring others. They’ve called this project My Survival Story.
I am incredibly honoured to be part of this project and we would love to know what you think of this video. If you know anyone who may benefit from hearing about my experiences with cancer and PTSD then please feel free to pass this on.
You can follow their incredible journey and see more videos here :-
Good luck guys. I absolutely love what you are doing.
Click to watch video
NIGHT AT THE MUSEUM
Get ready to squeeze a little something extra onto your lists gang.
When my friend Fifi first asked me if I wanted to spend the night at the Science museum in London I thought she was having a bit of laugh.
It turns out she wasn’t joking at all and we both got the chance to live out a childhood dream, and spend the night in an actual museum.
The Science museum in London has now started opening its doors at night in an incredible all night long science extravaganza called Astronights.
Astronights starts at 7pm and ends at 09:30 the following morning and is packed with workshops, exclusive access to galleries, a three course meal, an Imax movie showing, breakfast and best of all…. setting up camp and sleeping between the exhibits and displays in the world famous London Science museum! Both Astronights and the Science museum in general cater for those with disabilities so this is suitable for the everyone.
Have a look at the website for more details and see below for the 101 experience –
THE 101 EXPERIENCE
Our night started with a cheeky free drink before being allocated an area of the museum to sleep in. With around 200 people there, everyone is split into groups and given an exhibition area to sleep in. Fifi and I, like kids in a candy shop were almost too excited but being responsible grown ups, we opted for the display nearest the toilet and the water station.
We laid our sleeping bags underneath a display monitor in the space section on the second floor. Amazingly, a lovely girl called Megan, who I met when I was in Nicaragua was there with her boyfriend and had set up camp right next to us. The world really is a small place after all.
We then took part in two interactive and educational workshops which were amazing, followed by the worst three course meal you could ever imagine. Great service but very bad food which was the only downside of what was an amazing night. With free reign to explore different parts of the museum we got to choose which workshops and displays we visited.
We decorated bags, checked out some other hands on work shops but my favourite part by far was a torchlight exhibition led by two actors who played inventor Thomas Eddison and the first woman to fly solo across the atlantic, Amelia Earhart. This was incredible and the actors were amazing. If you go, definitely check out this part of the night.
At a half past midnight we all grabbed our (price included) popcorn and drinks and sat back for a private showing of the new Star Wars film on the enormous Imax screen which was mind blowing. This ended at around 3:30am and then it was a compulsory few hours sleep before breakfast and access to the morning De Vinci exhibition.
Despite the evening meal, this was an incredible experience.The staff were absolutely incredible and really made this experience what it was. It’s not cheap at £180 but keep your eyes peeled for deals near the time of the event and you should be able to get cheaper tickets.
It’s fair to say it was an exhausting but incredible night. Learning whilst having fun. Best combo ever!
The best part of all though was spending this time with my gorgeous friend Fiona. She is probably the loveliest person you could ever hope to meet and one of the very first supporters of 101 Things To Do When You Survive. Fifi had a cake sale to help raise money for me when I was still in the planning stages and I will be forever grateful to her.
A huge thank you to Fifi for this amazing night at the Science Museum but most of all for all her support and friendship over the years.
I hope you guys get to do this one day.