One foot in front of the other

A few months have passed since our last blog, time is moving on, things are changing slowly and it feels like the right time to write again.

We saw Nick's fabulous consultant, Dave a few days ago for the three-monthly check up to review her latest blood tests and have a quick look for lumps and bumps. To quote Dave, Nick's bloods were "hunky dory". He followed this up with, "That's the technical term, stop me if I'm losing you.."! We've missed Dave! Even Nick's stubborn neutrophils are finally back to normal along with everything else. The pain in her hip is greatly reduced and the movement much improved. This has been slow progress but continues to move in the right direction. In short Dave is very happy with her progress but is far from ready to be outright celebratory. One year will be a good landmark, two years is a great landmark, in five years we crack open the champagne. One step at a time. 

I remember last year in the midst of Nick's cancer treatment part of me just couldn't wait for things to go back to normal and part of me thought that 'normal' was the very last thing I wanted to slip back into. The temptation to make big dramatic changes in our lives was overwhelming and yet the desire for no more drama was massive too! When her treatment finished in the autumn the tug of war between these two options was unbearable at times so we chose not to choose, to let the dust settle, hibernate a bit and slowly recover from and reflect on the year that we'd had. Almost eight months on from her stem cell transplant and things are changing here and there, some subtle and incidental, some more deliberate. I realise now that it's all about balance; make some changes, let other things change naturally, enjoy the things that remain comfortingly familiar. Keep moving forward but make time for stillness.

In a couple of weeks Nick will go back to work. She was keen to do this some time ago but her employer wasn't happy for her to work one or two days a week as she felt able despite her GP feeling that she was fit enough to do this. So until she meets with an Occupational Health doctor next week Nick has been making the most of an extended period of (unpaid) sick leave by working hard with a personal trainer to get fit and rebuild the muscle that was lost during the final brutal chemotherapy and the transplant. We also took the opportunity to go abroad for two sunny but windy weeks in Lanzarote where we walked up mountains, swam in the sea and ran in the barren volcanic landscape feeling fit and strong. And today is the 113th day of 2018 so Nick's done 113 press ups....as have a few other people who have joined this madness!

Thankfully the weather seems to be changing too after the wettest of winters which had a snowy sting in its tail. Unfortunately Nick's goal of completing the 10k Run Exmoor in March came to nothing as the village was cut off by deep snow drifts and the event had to be cancelled.

The biggest change we have decided to make is to sell our house. Anyone who has been to our house will realise that this was a huge and in some ways heartbreaking decision. We love where we live, we love our home, our garden and our place in the landscape of Exmoor. We love the owls in the surrounding woods, the view over the moor, our local Roe Deer population, the Red Deer stags roaring in autumn, the rivers where we paddle and swim, our secret places and our pond full of frogs. So why would we move? Well, if cancer does one thing it makes you re-evaluate and consider what is really important in your life. All those things I've just listed are the most important things to us. So in order to enjoy them more we want to reduce our mortgage, eventually work a bit less and get out to play and explore a bit more. So if all goes to plan we'll be leaving Simonsbath in a few weeks and moving to another Exmoor village just a few miles away, excited to find new special places, explore a different side of the moor with new rivers to swim in and to make a new home which we will no doubt come to love just as much as the old one. We've spent months thinking about this and looking at our options but then it all happened scarily quickly so if anyone has any spare cardboard boxes....

As is our way when things get a little crazy at home and we need to escape we've come to Norfolk for a few days before we need to start clearing out some of our accumulated clutter ready for the move. We are looking forward to having less 'stuff' in our lives. I always seem to find time to write a blog when we're here but this time I also found time for a little adventure (unfortunately on my own as Nick had to stay here with the dogs).

Yesterday I went to London to watch the marathon. 40,000 people running 26.2 miles in the searing city heat and another million or so cheering them on, screaming the names of their loved ones, standing on tiptoes to catch a glimpse, desperate for reassurance that their runner knew they were there to support them, knew they were loved, knew that they were inspirational. What it doesn't feel like for the vast majority of runners and spectators is a race. The atmosphere was like a carnival, a nomadic joyous festival of noise and colour snaking its way past London landmarks with pain and delight in equal measure. Right there on the streets were 40,000 personal stories, this the culmination of 40,000 individual journeys, everyone running for a reason close to their hearts but most of these stories only shared by one or two runners and just a handful of people in the crowd. I think the immense emotional energy that reverberated across the city, on the streets, in the packed sweaty tube trains and within the stampeding echoes underground came from these stories although they mostly go unshared. Everyone there knows that everybody else is just barely keeping it together because this is a huge deal. The emotion erupts when a runner spots a loved one in the crowd and weaves through all the pounding legs, fancy dress costumes and waving arms to get to the barrier for a tearful embrace. I witnessed many of these such moments and experienced a few of my own and they were all wonderful. As you probably know our friend Di was running to raise more money for Lymphoma Action (known as the Lymphoma Association until five days ago when they relaunched and re-branded) having also run the Brighton marathon last weekend (wearing the old Lymphoma Association kit!!). So she was 'my' runner, the person I strained my eyes to spot amongst the masses, inching my way to the front of the crowds as other spectators moved away to chase their runner across the city once they'd seen them. I walked six miles during the day and managed to see Di three times, the first time was a very tearful and emotional encounter at Surrey Quays, the next was more fun as I ran alongside her for a few hundred metres near Southwark Park trying to get a decent photo and the third was from the grandstand right at the finish where I was lucky enough to sit with Di's sister Julie in seats kindly given to us by the Lymphoma charity. That final time was pure relief that she'd made it safely to the end after the hottest London marathon ever and sheer pride in her incredible achievements, knowing that our fundraising total that started with Di and me doing the Great North Run last year, had tipped over the £5000 mark just a few hours earlier! Thanks again to all those who kindly donated. 
We then met up at the charity reception where Di got fed and massaged and we were all able to reflect on the day and compare notes - 'Did you see the man on stilts?' 'What about the Stormtrooper?' 'And the firefighters from Grenfell Tower each carrying nearly 60kg of clothing and breathing apparatus...' A lot of fun and a lot of very poignant and moving reminders of why this event has raised almost a billion pounds for charity since it started 37 years ago.
When I got back to Norfolk last night Nick and I wrote to Di and told her how amazing she is, how incredible her and Jon's love and support has been since Nick's diagnosis. She said that compared to what we'd been through this was 'just putting one foot in front of the other'. 

I guess that's all any of us can do. Whatever we are faced with, as long as we keep putting one foot in front of the other we'll get through it, we'll help those around us get through their challenging journeys, we'll find love, we'll make changes both big and small, be inspired by ordinary people doing extraordinary things and we'll stumble across beautiful places that we never knew were there. I remember being taught a Swahili proverb as I learnt to deal with altitude sickness when climbing Mount Kenya - 'Pole, pole ndio mwendo'. Little by little is indeed the proper path. Or, slow, slow is the way to go.

So here's a cool story to finish on, a reminder that moving quickly isn't always better than moving slowly...

A couple of weeks ago there was a knock at the door of Jon and Di's house and when Jon opened the door he was faced with a young couple who asked whether he knew Nicola Friedrich. Puzzled, he replied that he did and asked how he could help them. They had driven to Devon from Applecross in Scotland to deliver a postcard to Nick by hand. They explained that they had visited the Galapagos Islands some time ago and been to a place on the tiny island of Floreana known as Post Office Bay where an old wooden barrel has acted as a post box since the 18th century when whaling boats would deposit and collect mail to be delivered around the world. Now travellers leave mail without a stamp for others to collect and deliver by hand wherever they can. This postcard had been placed in perhaps the world's most unusual post box in June last year (by a friend of my sister) and taken nine months to finally reach its destination. Jon told them why the card had been sent to their address and all about the reasons behind it. He then got the young man to speak to Nick on the phone so that she got to hear the story first hand from him and thank him for bringing this final postcard to add to her collection. We were both overwhelmed by this incredible story, the journey that this single card had taken, carried by strangers across the world from Izzy to Nick. 

The Floating Bear

"It rained and it rained and it rained. Piglet told himself that never in all his life, and he was goodness knows how old - three, was it, or four? - never had he seen so much rain."
                                                                                                                - A.A. Milne

We are stuck at home today having tried to drive to the coast where I was meant to be doing a 10k run. It would've been more like a 10k swim I think but the roads are too flooded to even get there safely so we'll never know! 

On Friday Nick had her three monthly check-up with Dr Dave which is a chance for him to check her bloods, see how she's doing physically and mentally and for us to ask any questions or raise any concerns. Plus we miss Dave so it was nice to see him! The blood results were all normal apart from those pesky neutrophils which are a little low but that's not unusual at this stage because of the medication Nick is taking. The other results show her kidneys are working normally and there's no raised markers for active lymphoma. The fact that her kidneys are in good shape means that it's OK for her to take anti-inflammatories occasionally for arthritic knee pain so that she can run! Nick asked Dave if it was OK to take these before admitting she had already used them several times. Dave said "I love how you always ask permission in retrospect!" He knows her so well by now! Nick's only concerns are that she still has some pain and reduced mobility in her right hip and a small area of discomfort in her thoracic spine. These are both areas where we know there has been damage to the bones caused by the tumours, so the presumption is that this damage is what's causing the pain rather than any new disease. As a precaution Nick had some x-rays taken to check for abnormalities and we should get the results of those quite soon. The good news is that Nick is gaining weight and getting fit. Yesterday she got a PB at Killerton parkrun having run it for the first time a year ago, less than three weeks after her first chemo session. The course was so wet and muddy yesterday that it was an achievement just to stay upright let alone run it quicker than you ever have before! Oh and she ran the 1.7 miles back to Di and Jon's house afterwards. 

Of course she did. Nick loves Killerton, loves the mud, the challenge, all the friendly faces there and of course brunch at Strathculm Lodge afterwards! Last week Emily Wolf Schaffer was visiting us from Houston, Texas and she joined us for the muddy run and for brunch too which was great fun. It was also nice for her to see where all the sixteen postcards she sent had ended up!

In the middle of writing this I was interrupted as we realised that our house was in serious danger of getting flooded. This happened once before a few years ago and since then we have made some alterations to try and make sure it doesn't happen again. This was another reason we decided to turn back this morning; we wanted to be here if the house looked likely to flood! Half our garden was suddenly under water, with a raging torrent swooshing past the back door and at the front water was lapping at the doorstep. All our neighbours were out looking at the streams that had burst their banks and seeing if anyone needed help. We now have sandbags at both doors. Thankfully the water level has  dropped but the rain is still pouring so we're on our guard just in case. Our poor neighbours have water coming up from under their house soaking their carpet! Locally there are road closures, landslides and flooded properties but so far we have been lucky.

So life goes on. The further behind we leave Nick's stem cell transplant and all the treatment, hair loss, worry and uncertainty that came before it, the more normal life starts to feel. I have been back at work for almost two months and that feels good. It feels good that I mostly sleep well now and have the emotional and physical energy to do my job, to care for other people's loved ones rather than just my own. It did feel a little strange to be back at hospital with Nick the other day, seeing Dave, waiting while she went for x-rays, having a little niggle of uncertainty about what might be going on in her body again. It has taken some time to not think about cancer all the time, massively helped by Nick's determination to get fit and strong after being so weakened by the final treatment. Generally when I get home from work I hear that her day has involved swimming 100 lengths at the pool, doing her daily weights session and her exercise DVD and maybe having a short run with Olive. So any frailties in her body are not at the forefront of my mind! Nick's goal is to do a 10k event called Run Exmoor in early March. This trail run takes place close to our home and is a beautiful, hilly, muddy route on the moor. She is trying to persuade Dr Dave to do it too but he was last heard muttering something about 'maybe being on-call that weekend'! Maybe that will be the next time we write a blog...

For the time being we are counting our blessings, relieved that so far our house hasn't flooded and that so far Nick is doing well, getting fitter, getting her hair back and gaining weight. Getting on top of lymphoma wasn't a straight forward process, there was some wrangling about whether it or Nick would come out on top...much like when Pooh launched a brave mission to rescue Piglet in the flood by turning his biggest honey pot into a boat he named The Floating Bear...

"For a little while Pooh and The Floating Bear were uncertain as to which of them was meant to be on top, but after trying one or two different positions they settled down with The Floating Bear underneath and Pooh triumphantly astride it, paddling vigorously with his feet." - A.A. Milne.

The Christmas Special.

I love this time of year, I love the soft milky winter light of a foggy day, crisp blue sky days dazzling diamonds of frost and snow, being up as the sun rises and there to witness it when it sets. Nature's systems and animals slow down or even close down and prepare for the cold dark months ahead before the warmth of spring touches the land and once again re-awakens her.


For me though this year the beginning of winter has been particularly busy. In my head and and in my life. I have found it almost impossible no to spend time thinking what I was up to this time last year. It was in the first days of December that I discovered I had cancer and christmas that I found out it was Lymphoma. Here I am a year later in remission and feeling stronger and stronger. I have started swimming, (even swimming in an icy Exmoor pond!) gently running and I went out on my bike the other day for the first time in ages (which felt wonderful). Life is returning to normal. So the thoughts in my head, whilst they are often busy reflecting on a year ago, they are also busy thinking about the here and now and doing stuff that I love to do and doing stuff that will help me get fit and strong again. The getting fit and strong again is tough, both mentally and physically as it feels like such a long road to get close to where I was 18 months or so ago, but it's certainly a better road to travel than the one I was on last year. 

The other thing that has kept us busy is planning for and hosting visits from friends from far and wide. Over the last few weeks we have had visits from three wonderful friends from America. Each moment and second they were here was special, each moment needed to be breathed in and cherished, each moment was a gift. These were friends that I met at camp over 30 years ago and have kept in touch with ever since, these are friends that I don't see every year but friends whose friendship is as fresh and real as was all those years ago back in the Northwoods of Minnesota. They came to be with us, and as it turned out to celebrate the news of remission, but when we planned the visits months ago we didn't know how I might be. This is the power of friendship and I am so grateful for it and for the wonderful times we had during their stay. In the new year I have some more friends coming over from the States two of whom I haven't seen in many many years and one who it must be 20 years since we were last together. I am so excited to spend time with them and so grateful that they are making the effort to make this trip over....getting to the middle of nowhere isn't easy but it's a great place to be and spend time once you're here. 

Here we are in the darkest days of winter, celebrations light up homes with twinkling lights and candles and maybe that's a bit how I see some of the highlights of my last year. Some pretty dark days, with dark thoughts and dark feelings about the present and the future. But lighting up those days were all the wonderful things that happened, things I have written about many times over the last few months, things I will never forget. And those twinkly lights continue to shine, whether it's brilliant visits from far away friends, or swimming ten more lengths than the last time I was in the pool, or getting on my bike again, swimming in the sea, tasting food properly again, putting on weight, not having pain, walking further across the moor with the dogs, not filming press-ups anymore. (As I write this I have only 3 more days of press-ups to film before I put the project well and truly to bed!) Anyway these are all the twinkling lights of my winter, press-ups is maybe the star on the top of it all, but it has all combined to bring light and colour and warmth to the some pretty dark days, and from now the days begin to draw out and get a little lighter each day... something to truly rejoice in.

We would both like to wish you all light and warmth in the cold, dark days of winter. May there be plenty of blue sky twinkly days, and shimmering foggy days and days when being by the fire is the only thing to do. Mostly a big thank you to you all for being there and reading this and sharing in our journey over the last year. May 2018 bring peace, joy and more stability than the days of 2017 as the earth makes another turn. 

The last word

I often wondered just what it would take for me to be able to keep up with Nick swimming a kilometre in the pool. Over the last few years I could've trained harder, improved my swim technique, listened to Nick when she suggested I do swim 'sets' instead of simply ploughing up and down the pool or across the moorland pond. Turns out all I had to do was to wait for Nick to get cancer, have nine months of chemotherapy topped off with gruelling BEAM chemo and a stem cell transplant losing 15% of her body weight in the process (all muscle as she had no fat to lose!) and bingo! I swam alongside her for a whole kilometre this morning!!! I'll let you draw your own conclusions about my commitment and dedication to training versus Nick's determination and drive to get fit! At least one of us is moving in the right direction!

As Nick said in her post last week we are winding down the blog for the time being but it probably won't be gone for good I don't think. So this will be my last piece for now. It's a funny thing this blog. We slipped into the habit of writing every weekend, taking it in turns to put together a few words about what had been happening, how we'd been feeling and what we had to look forward to. Or to fear. A few people have asked whether it was a chore or a catharsis. The answer is definitely 'both'. Every Thursday or Friday the question would come....'Have you thought about the blog? Do you know what you're going to write about?' This, smugly from whoever wrote last week's blog and the reply, every week....'No! Not a clue!' So, yes it felt like a chore, like homework but once you sat down with a deadline, a blank page and an empty head the words just seemed to come. Or at least the ideas would come, sometimes the words were more of a struggle and we'd often help each other out with that, putting the meat on the bones. While Nick was particularly ill she just couldn't do it but otherwise we have managed to keep to the schedule we accidentally set ourselves. But through those ideas and words that seemingly came from nowhere we were able to process our thoughts, individually and collectively. It was often a time where we really talked together about what had been swimming around in our heads that week so it truly was a beneficial activity for us both and now we have quite a body of work, a legacy of the last year. So it will be both a relief and a wrench to leave the blog behind. It also feels like a regular, tangible connection to a lot of people so I think we'll miss it!

As well as the blog we have so many reminders, mementos of this unexpected year. Nick has a lot, a LOT of new hats and scarves for instance! She has her beautiful, cosy cabin full of lovely things, truly a place to relax and recover in peace. She also has the most amazing postcard collection for which I know she expressed her gratitude in a recent blog but about which I also want to share some fabulous facts....

The idea originally came from a group of very special friends in the US with whom we went on a life-changing canoe trip in northern Minnesota in 2015. They thought it would be fun to send Nick on a virtual road-trip around the states while she was in hospital. I thought we could go bigger than just the USA so opened up the idea to friends and family, hoping Nick might also get a few cards from around the UK and maybe people's overseas holidays. But the word spread and the postcard project took on a life of its own!
In order for it to be a surprise for Nick, our friends Di and Jon kindly allowed us to give out their address for the cards as we'd be living with them for the whole time that Nick was in and out of hospital for the month of her final treatment. Unbeknown to Nick the postcards started arriving at their house in June and continued to arrive until October, totalling around 455 eventually. Four hundred and fifty-five postcards! Bonkers! 

68 different people/families sent cards. Special mention goes to Steph Taylor who sent 23 cards but other distinguished senders include Emily Wolf Schaffer, Amanda Bird and family, Susie Anderson Wilson and Peter Dennett.
37 different countries of the world were represented.
Cards came from 30 different US states and 43 counties in the UK.
Other than the UK and US, France was the winning country with 16 cards.
Minnesota was the top state, not surprising given Nick's connections with that place of lakes and memories, with 35 postcards.
The UK counties with the most cards were Suffolk and East Sussex with 19 each.
There were many, many cards from people we had never met, friends of friends as the idea had been shared and spread. And it is said that social media has a negative impact on 'proper communication'!
Our friend Tracey and I spent a pleasant couple of hours a few weeks ago sorting through all the postcards, tallying facts and figures while Nick teased us for having multiple lists and charts, annoyed us by deliberately switching cards from one pile to another messing up our system and finally left us to it and dozed in her cabin tired from too much meddling! So thank you Tracey for humouring my need to count and record! I did create some graphs and bar charts but I won't bore you with those!
Nick has a great plan for all these postcards. Once we've sorted it out we'll post some pictures so watch this space.

Ever since being given permission to swim by Dr Dave Nick has been keen to get back in the sea. We didn't manage it in Norfolk. We had wetsuits and there were some sunny calm days but we couldn't quite pluck up the courage to take the plunge. Having lost so much weight Nick feels the cold so it was easy to find excuses not to swim! But this week a few people we regularly swim with here on the North Devon coast were planning a night swim as conditions were set to be perfect. Again it would have been so easy to stay at home in front of the fire rather than scraping ice off the windscreen and driving 20 miles on a frosty night to get into the still, black sea. But this time we resisted the lure of cosiness and met with three other hardy souls in a pitch black car park, heaved heavy rucsacs onto our backs and climbed the steep, steep lane to the clifftop path that lead down twisting steps to the hidden little cove. Nick was surprised at how breathless this short climb made her, those lungs have a way to go yet before she feels fit but as soon as we turned downhill she was fine. There was no moon, just stars above us and these were mostly behind clouds by the time we actually got into the water which meant the air temperature rose a tiny bit. We slipped quietly into the silky black icy water but within seconds we were all exclaiming, not because of the cold but because the sea was sparkling with bioluminescence, white flashing diamonds shining in the wake of our hands and feet moving through the water. The conditions were perfect for this; no moon, calm seas and a dark beach hidden from almost all local lights by high cliffs. It was wonderful.
 Nick felt very emotional to be back in the water and we all felt privileged and so thankful to be there with her. Not being able to see each other gave us all time for some quiet reflection. Andrew had sensibly lit a tiny fire on the beach so we could firstly find our way back to our waiting clothes and then sit close to it to share hot drinks from our flasks and a bar of dark chocolate.

Photo courtesy of Andrew Wilson

 As the tide had dropped we were able to make our way back to the car park by traversing the rocks at the top of the beach rather than climbing those steep steps back to the road. This path through the rocks was cut by smugglers hundreds of years ago, steps hewn into the base of the cliffs, up and down weaving secretly from the cove to the bigger beach. As we carefully negotiated these limpet-strewn steps and terraces our torchlight picked out life in the rock pools on either side; pink, green and brown seaweed fronds, scuttling crabs, shrimps with eyes glowing bright white and prehistoric-looking creatures resembling trilobites creeping past us! We didn't spend much time in the sea, we hardly swam really, just bobbed about enjoying the sensation of cold water and gazing at the phosphorescence below us and a few stars above but the whole evening was brilliant and was such a notable step in Nick's recovery, a step away from disease and treatment, a step towards normality, fitness and a reminder of what is important, why it's so good to be alive. And to be thriving not just surviving. Swimming in the sea, swimming in the pool, things are going swimmingly and we are moving forward stroke by stroke, step by step. And for now I'm keeping up!!

Whilst we were away in Norfolk a friend found out that the breast cancer she had beaten three years ago has come back. She shared some fascinating research she had been reading which looked at the healing effects of love in all its forms; love from friends and family, love for friends and family, love between lovers, physical love, feeling love for animals, the natural world, for life. This is how we've reached this point and how we've not only survived this year but mostly thrived throughout it. Love. The last word. Love.

Precious and Precarious Life...

Beginnings and endings, that's what November means to me now. I think this might be a big ending for me as I'm thinking that this will be my last blog for a while because I have a definite sense that I'm moving further and further away from the events of the last year and more importantly I feel I'm heading in a positive direction away from the illness.

The events of the last year started in November 2016. The 28th to be precise was the beginning of it all. On that day I had an MRI scan to look at my hip and spine to try and find the source of the increasing pain I'd been experiencing for several months. Two days later the consultant called late in the evening to tell me that the cause of the pain was in my bones and that it didn't look good. Just before christmas I was told for definite that I had cancer and early January I found out that it was Lymphoma...and so began my year. A year that Rachel and I have documented and shared with you all and a year that has been one of extremes. Often painful and sad, scary and isolating, but also it has been wonderful, full of surprises, love, friendship and hope. Some memorable times and plenty of times I'd rather forget!

So things began for me almost exactly a year ago. When I discovered it was cancer. I remember being frightened and I remember being utterly melancholic. I basically planned my funeral that first evening...music and everything! Then slowly Rachel and I told friends what was happening to us. With this came our blog, a place to explain things as they developed and also to tell our friends how we were coping, and what we were thinking... I turned to doing press-ups with my December Advent challenge and gradually I realised that I didn't need to plan my end just yet because the treatment options, whilst daunting, were very doable. Especially under the brilliant medical care of Dr. Dave and his team and of course the amazing, and couldn't have done it without, Rachel. We settled into our unexpected year and just got on with it with a lot of help from you.

And now we find ourselves at the other end, an altogether different November. As I said I feel I am moving in a good way away from the treatment and the transplant....that was 10 long weeks ago now. Rachel and I are once again in Norfolk walking along the endless sandy beaches, exploring the woods that grow right up against the dunes, marvelling at the winter visiting birds and just feeling so lucky to be here, under these blue skies and to be here healthy. It's a good place to think, spend time with friends and family, to reflect and to heal. There are still reminders; my hair is slowly, oh so slowly growing.....its actually just a soft invisible fuzz! My body still aches all over. I even had a phone call here in Norfolk from one of the research nurses at the hospital where I had my transplant to check on my progress. She called because I was involved in a clinical trial after the transplant for a drug which aims to prevent episodes of bleeding which can be common after a stem cell transplant. So that bought me down to earth for 5 minutes. 

Down to earth, but a different earth than it was last year. I'm so aware that I have been given a gift, the gift of life and I feel I have a responsibility to do more than make the most of this. Do something different, be someone better. This has especially been brought home to me in the last two weeks. Since Rachel wrote her last blog, Ben, who she then mentioned was going through his own 'storm', very sadly died, a young man, a husband, father, a son and brother. Then this week a young work experience student who I had the honour of working with and mentoring died of a complicated illness. A talented young woman with her whole life ahead of her. Life is both precious and precarious. I almost certainly would not be alive today without the treatment I received and when your life gets as close to the edge as mine has over this last year, when it felt more precarious than ever before, it is so important to step back, come to terms with the past and the new look of my future. This, of course will take time and maybe a new direction and path will emerge but I'm certainly not expecting a major epiphany. Every cell in my body is brand new, this is 'the new me' but quite what that means is yet to become clear. My life will never be the same in some respects but at the same time I am aware of the importance of not putting pressure on myself or Rachel to make huge sweeping changes and expect miracles.

In the meantime I really can't thank you enough for coming on this journey with me. It's hard to explain how much your support has meant to me and Rachel over this last year. I don't think I would be exaggerating if I said that I couldn't have done it without you. Just knowing that you were there reading the blog, doing the odd press-up, sending a post card or two, sending messages to make me smile. Writing this reminds me that the single greatest thing about this whole year has been you, and I know that I am so lucky to have such brilliant friends.

I'm going to stop filming my press-ups on the last day of November, the anniversary of when this all started. However I know I'll do ten press-ups every day for the rest of my life, (or for as long as I can!) and in December I am going to do the Advent challenge again, which I'm going to photograph, so if anyone fancies doing this with me, and sharing it on the FB page that would be brilliant... it entails starting with one press up on Dec 1st and finishing with twenty four on Christmas Eve. 

In January I see Dave for my next check-up, to check that I am still in remission so that'll be a good opportunity to check in with you all again.  However in November, a month for remembering and a month of gratitude I am thankful for my health and I am thankful I can sit here a year later and say that tomorrow looks good. 

Expansive vistas

I can hear the waves breaking on the beach. Not because I am outside or because there are massive dramatic stormy waves crashing against the shore. In fact the sea is calm and I am calm too, sitting by the fire with tea and crumpets, but there is a high spring tide so just the other side of the dunes the small waves are breaking on the sand and shingle rhythmically, slowly, reassuringly pulled by the full moon and it's a wonderful sound, the ocean feels so close and so comforting. I have to go see it....

....I'm back. We just had to take the one minute walk across the dunes, past the brightly coloured beach huts, brighter than ever in the flat light of dusk, to look at the waves, look out to sea where a dull mist eerily restricts the view and look west to a hint of red setting sun beyond the peaceful grey sea and to look back to the house glowing with a welcoming orange light. Now I'm back in the warmth of the house with snoring dogs; we're all tired after a day out on the beach that is now covered by that advancing tide.

Earlier today our friend Amanda visited us with her silky-eared beagle Ruby and we walked miles out to the sea's edge at low tide where the beds of mussels were more exposed than I think I've ever seen and a multitude of seabirds took advantage of this ideal spot for a feast of various creatures in the shallow, silty water. At first glance down the vast expanse of sand there appeared to be no sign of life but getting to the shoreline and watching through binoculars revealed so much activity. The birds agitate the muddy seabed with their long-toed feet before plunging their perfectly designed beaks into the water to collect their food. These birds are mostly over-wintering here having flown hundreds or even thousands of miles from their summer breeding grounds so they are understandably keen to eat well when they get the chance. They are also reluctant to be disturbed so even though we had a gang of five dogs with us at the water's edge they were persistent with their feeding and paid little or no attention to us, conserving valuable energy rather than flying away. Gulls, oystercatchers, sandpipers, curlew, ringed plovers, egrets and sanderlings all coming together with a common purpose.

You may have guessed that we are back on the north Norfolk coast, back at Silversands relaxing by the sea. This is our third visit this year and once again it has come at exactly the right time for us. The last two months have been very tough, on the back of the previous nine tough months and so we need this time to recover and reflect and there is no better place to do that than here. We each have our individual recovering to do but we definitely need to recover together. Nick is progressing well physically and managed a two hour walk yesterday, slowly with plenty of pauses to watch birds, have a picnic and of course to do some press ups but this is a huge step. Her body still aches all over and she is painfully stiff and gets out of breath and tired easily but she has both the strength and the motivation to keep going. That's the magic of this place. Being here has always been about long walks and good food and thankfully Nick's appetite is improving, food tastes normal again and she has even enjoyed a small glass of wine or two! Her stomach is still tender and she feels full easily but at least she gets hungry and enjoys her meals now especially after being out in the sea air. Hopefully this trip can also help her turn a corner emotionally, help us both move away from cancer and begin to look forward. I think all this time spent on huge beaches, looking out across the never-ending expanse of sand, up into the biggest of skies and out across the slate grey sea is very cleansing for the mind. I love the muted colours of the east coast in winter, milky sunlight and a dramatic absence of drama in the landscape.There is no interruption, no challenge, no complication in these vistas and that feels like healing to me, to my stirred up mind and I am soaking it up in lungfuls, eyefuls, soulfuls and storing it up to take home with me to keep me safe. 

Like cancer, I thought that stress was something that happened to other people. Who knew? It can get to us all and can be as hard to recognise or diagnose as cancer in its own way but maybe it's even harder to pin down, harder to talk about and harder to understand. Maybe. Luckily I have an amazing GP who recognised the random symptoms I described, helped me understand it and gave me some much needed time off work to recover from it but it's still hard to admit to yourself that this is what is going on and why it has arrived so late to the party! Apparently it's not uncommon to get through what might appear to be the worst of the whole process of dealing with a partner's cancer and then suffer from stress towards the end of the journey when the obvious reaction you might think would be relief and happiness. Stress can be very similar to grief in its manifestation and it has occurred to me that I had maybe prepared myself for grief and so emotionally this was always going to happen. Who knows? So sleepless nights, an almost manic amount of energy coupled with permanent exhaustion, a voracious insatiable appetite, a propensity for tears, a short temper and inability to cope with the slightest problem were the treats awaiting me as Nick came out the other end of this year of trauma and treatment. Cancer makes you feel physically weak, stress makes you feel emotionally weak especially when all your partner needs is your strength (or so you think when you're beating yourself up about every little thing). When someone you love is facing such an incredibly frightening disease it feels pretty pathetic to have struggles of your own but actually realising that this is only to be expected is the biggest hurdle and now I've accepted this it does feel easier to work through it. I have also realised that my recovery is not necessarily directly connected to Nick's recovery. I initially assumed that as she got stronger all my insecurities and anxieties would miraculously melt away but this is certainly not the case.

So yes, we really need this time under big skies, looking out to sea, walking through and over dunes and across big empty beaches, eating good food, running along unfamiliar country lanes and doing lots of nothing much at all. Like those over-wintering seabirds we are keen to eat well after a long arduous journey and we are reluctant to be disturbed, making the most of the chance to stop and rest. Stopping has been the hardest thing for me throughout this whole experience. Every time I've seen my counsellor she's asked whether I've stopped, taken time out for me, to meditate, breathe and turn inwards. And every time the answer has been no. In fact I've started to pre-empt the question and even if I'm telling her that everything has been ok and I've been feeling alright I still have to admit that I haven't stopped. So that is my aim while we're here and hopefully when we return home too. Even my GP prescribed mindful meditation so I have to work on that. I already feel so much better than I did and I'm sure this break away from everything will be a turning point for me, a time to re-evaluate, to stop and reflect on all that has happened and re-set my mind to a new future that will always have cancer in its past but will hopefully be the richer for it. 

The new normal

Dave, my lovely doctor,  said that the further away from all the treatment I get the better I would feel.  Six weeks have gone by now since my stem cell transplant and it's actually quite hard to believe how different I feel compared with just a few weeks ago.

The BEAM chemotherapy really takes everything out of you. It is so noxious that not much can survive it. Hair...gone. Skin on my hands and feet...gone. Fifteen percent of my body weight ...gone. Muscle tone in my arms and legs ...gone.  Sense of taste...gone. Energy...gone. Immune system...gone. All my childhood vaccination protection...gone. Appetite ...gone. 

I must admit that on coming out of hospital I felt really low, low on energy and low in mood. I felt light years away from who I am and how I should be moving and eating and thinking and being. I felt like an empty shell you might find on the beach, all the colours on its smooth surface faded, the edges cracked and chipped, no sign of life inside. It felt like the hill I had to climb in order to get back to how I was before the treatment wasn't a hill at all but a mountain, the unconquerable North face of a mountain. That was a few weeks ago, and it is amazing how different I feel now. Physically I'm feeling better every day, walking a bit further, doing a bit more. I even went swimming this weekend, which felt amazing and exhausting. It is going to be a long time before I'm physically anywhere near where I was before all this but as is so often the case "it's not the getting there, it's the journey!' 

I saw Dave last week and he said that the further on I get from the all the treatment the more 'normal' I will feel. He was particularly talking about the emotional 'normal'. My Lymphoma isn't like some cancers where the doctors can say that it its all gone, that you are cured. However Dave explained that I was in 'Complete Remission.' This means that there are no detectable traces of lymphoma in my body, but that it might come back. The longer you are in remission the less likely it is to return. Usually doctors say that you are 'cured' if you stay in remission for 5 years. 
I had PTCL- NOS. Peripheral T cell Lymphoma (not otherwise specified). This specific lymphoma does have a nasty habit of returning, however Dave assured me that because I responded well to the CHOP and BEAM chemo there is no reason why it should. This is reassuring but emotionally hard to really process and feel at one with. That is what Dave meant by being further away from the treatment, and already he's right. I'm already thinking way less about 'what if it hasn't worked?' or 'what if it comes back?' and more about when will I be fit enough to get on my bike? when will I be able to swim without being completely out of breath? When can I go back to work?

That's pretty much the state of things from a physical perspective: that apparently empty shell lying on the beach is slowly regaining its sheen and there is a stirring of life inside, a new life form, maybe a hermit crab, new cells forming a being inside this old body and before you know it I'll be heading towards the waves! 

The emotional perspective is a whole other 'kettle of fish!' Rachel touched on this last week in her blog, how this last 11 months has made us feel in our own separate ways. I have been really surprised with what I am feeling about what has happened, and how I feel about the next phase of this journey. 

I have had a couple of sessions with a counsellor who specialises in cancer patients and their relatives and even with her guidance I have struggled to really understand what I am feeling but it is definitely something of a sense of loss; despite being determined that it wouldn't, cancer has kind of defined me this last year. I have spent my time in and out of hospital, I became super reliant on all the medical staff that have looked after me, I have grown accustomed to my daily press ups and weekly blog. But this all has to end. I have said goodbye to all the amazing doctors and nurses who have looked after me. I'm going to really miss them as inevitably we have become close during this intense process. I had to have a flu jab the other day and I found myself feeling at home with the prospect of going to the surgery to have an injection, not because I enjoy it but because it felt like going back to 'normal' life after weeks of no contact with hospitals! How weird is that? 

So what next? I feel like there's a big hole where the cancer was, and I need to find a positive way to fill this hole. Apparently this sense of loss is quite common but it's so confusing and all consuming. Turning the clocks back eleven months, all we could dream of was being rid of this disease, but now it's gone we feel somewhat lost at sea, directionless. I want to celebrate this victory but at the same time there's a sadness along with the sense of uncertainty about the future. With time and distance hopefully will come clarity and as Dave said, as I move further away from the treatment the better I will feel physically and emotionally, the more the colour will return to the faded shell and the better 'normal' will feel.