Edit: I have made an edit under the ‘new diagnosis’ section of this post. Here I am discussing a condition I was only diagnosed with a few hours before writing this post. While I have had over four years to become an expert in ‘my’ cancer I am by no means an expert in this new diagnosis…in fact I know nothing about it! In coming weeks I will do research as I always do but, meanwhile please be patient. I hope I do not offend anyone with any misinformation which, I assure you, is unintentional and I will always amend the information I share as required. I am so grateful for the insight I have gained today from people living with this condition for many years. You incredible humans! Thank you!
There is mixed and detailed news in this update. Some good news, some ‘bad’. Some is about my cancer and some is about a new condition I’ve been diagnosed with.
I’m just breathing through it all, as I always do, with no panic or drama…one day at a time.
After all – I ain’t dead yet mother fuckers!
So, after months of abdominal pain and sickness through December and January and extreme weight loss, I finally started second line chemotherapy in late January (having stopped my immunotherapy trial on New Year’s Eve 2019).
My sickness stopped when I started chemotherapy but the abdominal pain continued and eating remained a struggle. Increasing abdominal swelling indicated new tumour growth or ascites (the abnormal buildup of fluid in the abdomen – also my ‘most feared nemesis’ as treatment is abdominal drains which are very painful for me due to all of the internal abdo scaring I have from multiple organ removal…)
So we scheduled an unplanned scan which I had last Friday.
My concern had not been that I had new tumour growth, however. I was concerned that I had colitis which is a known and recognised side affect of immunotherapy. This was what my instinct was telling me and, as we all know, my instinct is always bang on!
So I wasn’t surprised today to receive the results that this is the case, I do have colitis.
Not only do I have stage four cancer… I now have an auto immune disease too! Seriously!
And yet, I see this as ‘good news’. While many people diagnosed with colitis would think it’s ‘the worse news ever’ it is considerably better than the oncologist’s concern of ‘multiple bowel tumours’. Which would have potentially stopped my treatment and caused me to die considerably sooner than I’d planned or hoped for. In these situations (and all situations perhaps) it’s about your perspective!
Colitis is ‘potentially curable’ (edit*). How amazing to hear that magic word when living with ‘incurable’ cancer!
Treatment, however, is aggressive and my 2mg steroids will be increased to 50mg (the dose is calculated by hour weight…usually roughly 1mg per kg of weight)! This will be reduced slowly over a one month period. Meanwhile I’ll be buzzing with energy and roid rage but at least I’ll be eating and my pain will be reducing!
*EDIT: My colitis is caused by an autoimmune response. It was caused by 16 months of immunotherapy. Immunotherapy is a new and emerging cause of colitis as it is a relatively new drug type and cancer treatment.
When we say ‘potentially curable’ what we mean is that we hope that the aggressive steroid treatment will resolve the issue and I will have a very long (or, ideally, permanent) remission from symptoms.
In some cases there are future flare ups which need managed with similar aggressive steroid treatment.
In some, other, cases a low dose of steroids is required life long.
As ever, I will cross each bridge as I get to it…one day at a time…I never future fear! There is no point…especially when living with stage four cancer! (And now colitis!)
Meanwhile I am focusing on the pure joy that this is, at the very least, treatable and not cancer!
So that’s what’s happening in my bowel. But what about the rest of my body?
Well it was mixed news.
Let’s start with the bad and finish with the good…
My lung tumours (all in my right lung) have grown. Some quite significantly. And there are a couple of new little ones there too.
However!…because my last scan was in December and I had a huge gap before chemo starting in late January where I got very ill my team think things were actually getting worse before I started chemo and we didn’t know because I didn’t have a scan.
So, while it looks, on paper, like these tumours have grown since starting chemo they may have actually grown before chemo and shrunk since but we don’t know as I didn’t have a scan. The good thing is my cancer markers are dropping! So chemo is doing something!
Now… new news… I have a new tumour in my liver. This is the first time my liver has been involved. BUT (don’t you love a but!) it turns out that this was there in December and I wasn’t told about it (something I am considerably unhappy about!). It hasn’t grown since December and it also isn’t causing me any symptoms. So let’s not stress about it before we need to!
Now the good news…yes there is some!…the cancer in my lymph nodes has shrunk. Hurray! And the tumour by my kidney and in my lower right abdo have remained stable!
So…because my cancer markers are dropping (good sign) they are keeping me on chemo for three more doses and I will have another scan after my 6th dose (end May/start June).
I will start my high dose steroids this week and we will sort out the (literally) shitty colitis!
SOME IRONIC NEWS
After not being able to fly for two years due to a hole in my lung, this scan showed that the hole has healed and I can fly…you know, now all the planes are grounded and I’m massively immunocompromised. I can but laugh at this!… and dream of (and plan) lots of future adventures!
A PARTING THOUGHT…
I am not stressed, worried or anxious by any of this news at all.
Firstly, it showed me that my instincts remain bang on… I have said it was colitis since December and repeatedly told I don’t. I am reminded that I know my body, always.
Secondly, Colitis is curable. Isn’t that wonderful!
My lung tumours don’t cause me any symptoms.
My liver one, for some reason, isn’t causing me any anxiety (or symptoms)… so I’m trusting that.
My markers are dropping and many of my other tumours reduced in size or remained stable.
“I’m Scottish” . Which basically means I’m badass and hardy as fuck, love to swear, can handle my alcohol, can withstand the cold, love to blether (talk lots) and chase little creatures over the hills right? #haggis #culturalstereotypes 😉🤣 . In truth I DO love to swear and I have proven to be a bit of a badass 😉 but I definitely can’t handle my alcohol 🤣 in fact I haven’t drunk a drop since I was diagnosed over four years ago…but before that I LOVED a mojito…despite being a complete lightweight! . Oh and I do LOVE to talk!…I don’t care if you are an old friend, an acquaintance or a complete stranger…I can and will have a blether with you about anything! A gift I inherited from my Glaswegian Dad. . I was born in Glasgow as the 3rd ‘Wood’ daughter to a loving Mum & Dad. My Dad had a milk business at the time & my birth certificate states ‘milkman’ under father’s occupation – which is somewhat amusing when you are the only blonde & short member of your family 🤣 also I was quite the surprise as my mum had been sterilised! . When I was about 18 months old we moved to Guernsey, one of the Channel Islands between France and England, to be closer to my maternal grandparents. My grandad was a Guernsey boy!* . I spent 10 wonderful childhood years there with my family, swimming in the sea for spider crabs, enjoying long sea cliff walks and bike rides, picnics in the sun and water fights in the garden. . To this day my favourite place is on a beach, in the sea or on a boat (the bigger the waves the better!) . My parents love to host parties and many of my childhood memories involve our house filled with either mine or my sister’s friends – Halloween parties were always the best! . I had a mixed education on Guernsey. I stared at a montessori nursery, then a state school and then a private all girl’s school. . 3 days before my 12 birthday we moved back to Scotland, this time to Dunkeld – one of the most magical places in the world. It was here I found my love of trees. . But, in truth, the move was a shock to my system. Overnight I went from a carefree child to, for the first time in my life, feeling like I had to ‘fit in’ and finding that I didn’t! . My accent was different. The way I dressed was different. And, now in a co-ed school system I had boys to deal with too! . I spent a lot of my school years being bullied and judging and doubting myself. I began to push down the free spirited girl who had loved to run through the sea. The only time she emerged was when I was alone in the woods. . This self judging and hiding continued through my university education in Dundee and even into my working career. . In fact, I’d say it was only in recent years, through deep spiritual work and personal development, that I’ve finally allowed my true self to shine through with all of my innate ‘Scottish’ passion. . I’m proud to be Scottish but I’m also proud , and grateful, to have a piece of Guernsey in me too for it was there that my authentic self was grown and my love of nature and all things wild formed. . *My much loved grandparents both died in 2015, after moving to Scotland with us and sharing many happy memories together. They have a bench and a tree in Quarrymill Woodland Park in Perth where I sit and chat with them. The bench has their names ‘Peter and Esme Sauvary’ inscribed one it. If you are passing have a seat and say hi 🥰🙌🏻💚
“I am a yoga teacher (ashtanga, pre and post natal, baby and children’s)”
I’ve ‘done’ yoga since I was a teenager.
But back then I wasn’t so interested in how it affected my mind (let alone my spirit). Instead I was focused on how it affected my body.
I would watch the teacher bend and twist and want to be able to do what they could do. I would spend the whole class in deep comparison to their ability and deep judgment of, what I deemed, to be my failing.
I attended classes during my degree, my PhD and my working career. All in a bid to find stillness but always resulting in a sense of lacking.
I would look at the other women in the class. Their designer yoga clothes; their ‘perfectly’ toned bodies; the way they could bend and shift shapes…and instead of surrendering to the way yoga made me feel…the way it could calm my mind…I would feel inadequate.
I always knew there was more to it than that. I could sense that yoga could offer me something nothing else could and yet, along with long distance running and weight training, I used yoga as another way of punishing myself, of proving to myself that I wasn’t enough.
Then, in 2016, following major ‘cancer debunking’ surgery, during which I had multiple organs removed, my mental (and physical) health took a massive dip and I realised it was time to face my demons concerning my body.
I decided then was the right time to train to be a yoga teacher. Crazy I know!…but maybe not…
I wanted to learn everything I could about the human body and its innate capability for healing and it’s physical potential.
Of course, training to become a yoga teacher following major, crippling surgery is no easy task and only one training school I approached was willing to accept me as a student.
12 weeks after my operation I walked into a yoga teacher training course with one of my sisters ready, as I could be, to learn how to teach yoga.
Nothing could have prepared me for what happened.
Firstly the class was filled with beautiful dancers, experienced yogis and athletes. I had to release all of my notions for comparison, finding myself hardly able to walk, let alone bend and twist.
I became gentle on myself, offering self compassion, love, patience and understanding where I had once only found self loathing and judgment.
When I couldn’t do the postures, I focused my learning on the meditations, the breathwork and the yoga philosophies.
While I gave my body the space and time to heal physically, I fed my mind and spirit with all the aspects of yoga I hadn’t given myself permission to engage with before.
Through this I discovered that yoga isn’t about how my version of the pose looks – it’s about how it makes me feel.
During that year of training I made a commitment to myself that in my own practice and in my yoga classes there would be no room for comparison, for self doubt or for judgment. There would be no pressure to look a certain way; to dress a certain way or, indeed, to behave a certain way.
There would only be space for self love; patience and acceptance of what our bodies are capable of right now.
Since then I’ve done further yoga training. I’ve trained as a pre and post natal and baby yoga teacher; I’ve also trained as a children’s yoga teacher and I’ve done courses specifically studying breathwork, meditation, yoga nidra and yoga philosophy.
Through it all I’ve learnt one fundamental fact…yoga doesn’t care if you wear designer clothes, it doesn’t care what size you are, how you look, if you can touch your toes or bind your hands, it doesn’t even care if you have a yoga mat.
Because yoga doesn’t happen on your mat. Yoga isn’t found in the poses. Yoga is found in how you live your life in the moments when you aren’t on your mat.
Yoga is found in the kindness you share, in the connections you make and the joy you feel living in the present moment.
It took me over 30 years to discover what true yoga is and now I have, it’s the the greatest gift I’ve ever given myself.
It’s why I never post pictures of myself on social media in complicated yoga poses. Not because I can’t do them, but because I refuse to perpetuate the westernised notion that yoga is appearance based.
If you are punishing yourself with any type of exercise dear one please stop and know that you are perfect, just where you are.
There is nothing I love more than teaching a yoga class or running a yoga retreat and seeing the realisation and self acceptance in the face of one of my clients when they release attachment to their poses looking a certain way or their body behaving a certain way. This is true yoga and it’s the most beautiful thing in the world.
“I’m married to my best friend Ewan. We have 2 cats & 1 dog & a bright yellow VW campervan that brings me immense joy!” . I met Ewan in July 2008 while I was doing my PhD at the University of Dundee. . I’d applied for a part time IT job to help fund my studies, which was ridiculous because I knew NOTHING about anything remotely IT related. . By some miracle (I think they were desperate) I got the job on the condition I had some training. Ewan was my trainer 🤣 Although he will tell you I spent the whole session looking at Facebook and not listening…as if I would?! 😉 . I thought he was gay & he thought I was (quote) ‘an arrogant bitch’ 🤣🙈 . It wasn’t until 6 months later when Ewan started bringing me gluten free biscuits, left over from his training courses, to my help desk in the library that I agreed to a date. Food, undoubtedly, remains the key to my heart! 🥰 . Our first date was on 15.01.09 in Glenshee. I’d told Ewan I wanted to see snow & so he kept driving until he found some! Fuck, I am a bit of a bitch maybe 🙈 . My fav memory with Ewan is my first bday together. I had told him that, as a child, I was upset (jealous) that my Dad had fireworks on his bday every year (his bday is 5th November) & I didn’t. Ewan remembered this & on my bday drove me into the middle of nowhere, told me to get out the car & he went into the boot – I thought he was going to kill & bury me! Turns out he had bought fireworks! 🥰 . We moved in together in August 2009 & got out first cat Merlin (black) 2 months later. . In April 2012 we bought our house. . We got married in a Scottish castle on 12.12.13. . Fizzy (tortie cat) joined us in 2016 & Ozzy (dog) in 2018. . Along the way we’ve also acquired 3 nephews and 1 niece that fill us both with immense joy & laughter! . The rest, as they say, is history. . Oh, & last year I medically retired (late stage cancer perk – there has to be some right?!) and fulfilled my dream of buying a VW Campervan called Wini! . My ideal day with Ewan involves adventure, food, nature, driving in Wini & lots of laughter! . One more thing, we both LOVE fancy dress…and Ewan, in particular, loves wigs a worrying amount 🤣 .
If you are new to my page then this is me summed up in one picture. . “I like pretty things and the word FUCK”
. Other things you may want to know… . I’m married to my best friend Ewan. We have two cats and one dog and a bright yellow VW campervan that brings me immense joy! . I’m Scottish. . I’m trained in yoga (ashtanga, pre and post natal, baby and children’s) . And, as of next Saturday, I’ll be a certified shaman… . And I used to be a PhD researcher working for the NHS and Scottish Government… which is a bit different from the kind of research and work I do now 🙈🤣 . I’ve also written some books that you can buy on amazon and from all good book stores. . I’m currently writing my third book right now! . I LOVE being outside with trees or in the sea… any time or day of the year! . I prefer a deep conversation to small talk… always! . I will go to the cinema or theatre to see anything! (except Star Trek! I had to add that incase my aforementioned best friend/hubby reads this… but, as a side note, I LOVE Star Wars… I’m born on Star Wars day don’t you know!) . Also… I‘m living with cancer… stage four ‘terminal’ ovarian cancer… for four years… since I was 30. It’s no big deal most of the time… but some of the time it’s a great big massive scary deal!… but it definitely doesn’t define me… but it does make me use my favourite word a lot more often…#anyexcuse #aintdeadyetmotherfuckers . If you have any questions please ask 🥰
Lets just take a moment to pause in silent contemplation and fucking appreciation for food and eating! . I went weeks without being able to eat recently. . Actually, let’s be honest, it was nearly 2 months!
. Daily vomiting and excruciating pain…as I lost kg after kg I thought I’d never be able to enjoy food again. . I was so weak and the chemo being injected into my veins to reduce the cancer to help me eat again was making me weaker… . This can’t be it? I thought. This can’t be what ‘quality over quantity’ has come to. Because this is bullshit. . But then magic happened. Just as suddenly as I’d stopped being able to eat I was once again able to eat again. . And man am I eating! . I am eating every fucking thing in sight! . I am cooking delicious meals, savouring ingredients, sitting in ceremonial gratitude with each and every meal…I have never savoured flavours, textures and the sweet joy of eating in the way I am now. . The gift of eating. The gift of food on my plate. The gift of it entering my body, of it feeding me (physically, emotionally and spiritually!), nourishing me, supporting my healing, my energy, my life…it is a beautiful treasure that I took for granted for many years. . In fact, let’s be honest, I have used food to punish myself in the past. . When I was weight training (pre cancer) I was on a strict diet of ‘can’ts’ and ‘shouldn’ts’ but this didn’t change after my diagnosis… not really… it just had a different guise… no sugar, no meat, no gluten, soy or dairy (ok the last three are allergies so I don’t really have a choice) … but, undoubtedly, often food came with the restriction of ‘no joy!’ . Well… no more!
. I plan to celebrate every fucking meal for the beautiful life giving gift it is, in Devine celebration and gratitude for how lucky I am to have food to eat and to be able to eat it! . I see the joy now, and the magic and I an filled with gratitude for every morsel of food that passes my lips and feeds my body. . Thank you. Thank you. Thank you for the wonderful gift of eating! . Each meal I’ve eaten in recent weeks has been a deep and profound appreciation for the everyday, like I’ve never eaten before. It’s wonderful!
People keep asking me if I am anxious about getting the coronavirus.
It seems a logical question… after all I don’t have a spleen so I am immunocompromised every single day for life… I’m also currently on chemotherapy which suppresses my immune system even further making it almost non existent. I also have multiple lung tumours from my stage four ovarian cancer and yet my answer to this question may surprise you.
Because my answer is no.
▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲
Every day for the past four years I’ve lived with a terminal condition. I face death every single day. Coronavirus does not change that for me. It doesn’t make my fear, or likeliness, of death more prominent… it’s prominent enough!
Since having my spleen removed 3.5 years ago I’ve been immunocompromised meaning that seasonal flu, mumps, measles, chicken pox and many other ‘every day’ conditions could kill me. Spending my life in fear of this isn’t going to do me any favours… or save my life for that matter …instead I chose to be proactive with common sense and good hygiene. It’s literally all I can do!
I’ve worked in infection control and have a good understanding of how to wash my hands correctly and practice effective measures to limit the spread of pathogens. I do this anyway. Not just when there is a virus risk.
▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲
Do you know what worries me more?
THE PANIC BUYING I’m witnessing of food, toilet roll, antibacterial gel and medical supplies.
Many immunocompromised people (myself included) can’t buy antibacterial gel they need every day of their lives because people have stock piled. Don’t even get me started on the disgusting humans who are selling it for ridiculous prices on eBay. Isn’t it sad that this outbreak is showing us some of the worst traits of human society.
Can someone please explain what this stock piling of toilet paper all about?!
THE FEAR in society.
Driving change based on fear never works. Change should be driven by information and education. Empowering people with information on how to practice effective hand cleanliness and take appropriate hygiene measures is much more effective. So is educating people on how viruses spread by using easy to understand resources – again, not by using fear.
▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲ ▲
So what do I do to avoid the fear and the threat of viruses today, in the future and for the past four years?
I wash my hands using the recommend guidelines.
I don’t touch door handles or taps. I use tissue or my elbow.
I use a neti pot to clean my sinuses every day – sometimes twice a day.
I use an ear thermometer to check my temperature every day.
I avoid unwell people (where possible) by asking loved ones not to spend time with me if they, or their children, are unwell… I’m very strict on this and my loved ones are very accommodating!
I use antibacterial gel (only when hand washing isn’t an option).
I don’t share drinks, food, cutlery, bottles etc ever.
I keep my immune system as strong as possible with a good diet, exercise, meditation and supplements – all proven to help!…yes the meditation too!
I don’t stress or worry about getting unwell because stress is proven to lower the immune system so, in fact, the more you worry about getting a virus the more at risk you make yourself!
Beyond that… I just get on with my life knowing that I am doing everything I can to keep myself safe.
That’s all any of us can do: take responsibility for our own hygiene (and the hygiene of those in our care) and avoid seeing people if we are unwell.
Stress, fear, anxiety and worry aren’t going to protect us.
But education and good hygiene are.
Wash your hands.
Self isolate if you aren’t well.
And don’t add to the drama by panic buying! Please!
This weekend I traveled to Northern Ireland with Ewan to be with my ‘cancer bestie’ Carol who is now in a hospice living out her days with late stage ovarian cancer.
It was an honour to sit with someone in both life and in death. When we shy away from our true emotions, from vulnerability or from the permission to be authentic, we shy away from truly living, loving and connecting.
By sitting with our emotions, in all their glorious realness (however hard that may be), we enable magic to unfold.
I gave myself permission to sit with the discomfort and pain of loss, of grief, of sadness and, in doing so, to feel the true beauty and warmth of love, connection and kindness.
I truly believe that, when done right, death can be as beautiful as life…I’m just trying to find out what ‘when done right’ looks like…
In each moment we have the opportunity to gift those around us with love, connection and the opportunity to express their needs, hopes and fears.
I’ve come to realise that in the final moments of a life, this is the gift the living can give the dying and also that the dying can give the living.
There is nothing more precious, in any moment, or any interaction, than truly connecting and sitting with the reality of the other person’s heart.
When I arrived at the hospice I got straight in Carol’s bed with her and we had a fantastic 3 hour blether.
I will not fear death. I will look her in the eye and know that she holds as much compassion, connection and love as life does…if not more.
On my last night I recorded a very special podcast with Carol, while she lay in her hospice bed.
Afterwards I had to say goodbye to her knowing that I will never see her again.
It was one of the hardest things I’ve ever done.
You see, Carol is dying from stage three ovarian cancer and, while we (of course!) don’t know the date she (or any of us) will die, because she lives in Northern Ireland and I live in Scotland I know I won’t be able to make the trip again…especially while I am receiving chemotherapy for the same disease myself.
As I drove away, my heart broken, I reflected on how often I take for granted that I will see someone again. You see, while I know I won’t see Carol again, I never know I ‘will’ see anyone else in my life again. I reflected on myself saying goodbye in a rush, dashing away, not always lingering to hear my loved ones words, to hold them a little longer, to entwine our fingers, to kiss their cheek, to hold them close for just one more second…
…all the things I did with Carol as I fought back the inevitable, love filled, tears from cascading down my cheeks as soon as I left the room…
We never know what tomorrow holds. Cherish your loved ones today. This is what Carol taught me.
Above all, she taught me that, in the end, all that matters is love. Life really is that simple.
Please have a listen to our conversation and share it with others…I promise Carol will help you to live a more meaningful and loved filled life through her words.
If you are lost, scared, stressed, anxious, curious about life and death or if you just wonder if there is more to life than what you’ve previously been told…then this is the conversation for you xxx
Carol wanted to take the opportunity to record an episode for my podcast to help others by breaking down some of the stigma and fear around death, dying and end of life care.
But don’t for a second think that this episode is sad or depressing. Carol, in typical Northern Irish style will have you laughing and reflecting as she shares her insights into life and love and what really matters most.
What makes this episode so special is it is not only rare to get access to this personal insight into end of life care but it rarer still that the interviewer is friends with and dearly loves and cares for the interviewee.
However, what makes this episode even more unique is that I am also living with the same disease as Carol and know that, one day, I too will be lying in a hospice bed receiving similar end of life care that she is receiving now.
For the past four years Carol and I have developed an unshakable bond through our shared disease as we have supported one another through the highs and lows of living with late stage cancer with tears, laughter and very dark sense of humour.
I struggle to imagine a world without her in it and I will be forever grateful to all she has guided and supported me through. I am so grateful to Carol that she has gifted you all this beautiful insight into her life and her death. May her words lift your spirit and guide you on with a heart filled with love.
I know that my world will always be brighter because Carol was in it.