World Cancer Day – Unite in the fight against cancer

This is a shout out to all those who stand with me in my fight. 

I started this blog as a way to process my thoughts and feelings surrounding my cancer diagnosis and treatment.  I thought it would also be a good way to keep family and friends updated and maybe help others along the way.  It has done so much more than that. Having cancer can be incredibly isolating and by writing this blog and via Instagram, I have connected with others both locally and abroad.  Some of these people I may never meet but they can make the difference between a bad day and a good day. I remember when I was first diagnosed, I had so many questions for the bowel cancer nurse specialist at the hospital but lots of her answers were, ‘I’ll have to find out, it’s not often we have someone your age (ie with children)’ yet a few days after I posted my first blog post, a friend of a friend saw it on Facebook and asked if she could pass on my number to her friend who had also just been diagnosed with bowel cancer... and she’s also in Durham!  I can’t speak for her but for me, meeting her (my bowel cancer buddy!) has been a lifeline and I know if I have a random question or worry, she’s there just a message away, to reassure, advise or make me smile about our mutual experiences of the cancer world.  I am clearly not alone in this; new research from Macmillan Cancer Support shows that 1 in 4 women with cancer use social media networks to connect with other cancer sufferers for support and advice. I spoke to the Mirror about my experiences with social media which you can read here. It’s amazing how a positive comment or message can help us feel stronger and less isolated.

Today is World Cancer Day, a day to unite in the fight against cancer. I am incredibly lucky and hugely grateful that I have such a large network of family and friends around me. They support me and the boys in so many ways, whether it’s dropping off meals, or cake, driving me to appointments or helping choose a wig, I appreciate every gesture, large or small.  My brothers, sister, nephews and nieces even wrote and recorded a song for me to play during chemo! I have received parcels of gifts from old friends and friends from an online support group who I haven’t even met in person.  Some days, when it all gets too much and I’m exhausted and feel like giving up, knowing that so many people care, are thinking of me and hoping I will be ok is incredibly motivating.

I know that I’m not going through this alone, my family and friends are hurting too and yet they put that pain aside in order to be strong for me; keep me buoyed up and smiling. It must be hard to know what to say and do sometimes… cancer is such a huge thing and difficult to talk about, I know I find it difficult myself. I asked a couple of friends if they would like to write something about their thoughts and feelings on having a friend with cancer. This is what they wrote…

 ‘When you told me you had cancer, I cried. I was sat on my stairs. I cried for you I cried for your boys, I cried for me.

This was not in our plans! Our friendship was borne out of motherhood, sleep deprivation, cloth nappies, babywearing, breastfeeding, noisy playdates, silly social media memes, camping adventures, cuppas and cake. Our lives complex and busy as working mothers meant late night messaging of parenting advice, validation and encouragement. Had we have met earlier, I am sure it would have included boozy gigs and lazy beaches...

This was most definitely not in the plan. I was floored and then angry and then I wanted to fix stuff and help you. Powerless and confused and angry, I set about thinking what I would want. What I knew was that this was going to be tough and your choices were harsh.

My mind wandered to your funeral and my funeral, what the fuck... these are not things I wanted to think about. Adulting! Internet research was scary and I wanted to be emotionally strong for you. I watched a Macmillan video about supporting friends through chemo and made a decision that our friendship need not change... memes, rainbows and tea. I could help by continuing the normal. The plan was more noisy playdates - our children adore each other. Occasionally we get to drink got tea and finish whole sentences and laugh. Muddling through motherhood. 

One thing we have always been was honest and raw. Your family and friends surrounded you and ashamed as I am I was a little jealous at times. This was our time, I am practical… a fixer, a counsellor. I am embarrassed to say I felt a little redundant and totally out of control. This is ridiculous of course, but you asked for honesty. Historically, I am guarded in female friendships… I had let my guard down with you and felt really vulnerable. Silly.

Your diagnosis and treatment has made me re-evaluate my lifestyle, relationships and plans. It’s made me explore what it means to have friendships and how important a mum’s village or tribe is. When I have seen you exhausted and in pain, I have felt that pain too. My heart aches and my mind races, I don't want to confront the reality that you might not get better. I want us to make the most of every moment but also loaf about ignoring each other, whilst the kids trash the house and giggle. When I am in the gym if I need to summon passion or motivation I often think of you. I know...me... in the gym - who would have thought it! The way you have faced this and other life challenges is inspirational. It has made me really appreciate my health and my body.

Motivation and perspective, Memes, tea and rainbows! It has taken me months to write this. My throat tightens as I find the words. Your friend Xx’

‘When Laura asked me to write a little something for her blog I was humbled but also kind of panicked. What should I say, what if I say the wrong thing, what if I sound like it’s all about me? What if I say something that’ll upset people? After all Laura’s going through, should what I think or feel even matter?

I decided to follow Laura’s example, she’s been honest and open about her experiences in her blog and I’m going to try and do the same. So here’s my take on what cancer is like from a friends point of view. I apologise in advance Laura!

Me and Laura have been friends since we were two, we met at Nursery, went to primary and comprehensive school together and over the years our friendship has always been there as we’ve gone about our lives doing different things.
We used to see each other for a proper chat every few months and would always say ‘we should do this more!’ It’s ironic that a cancer diagnosis is what it took for us to hang out more, but I’m so glad for the time we spend together. (It doesn’t matter if its trips to hospitals, tea and friendship bracelets, dying bedsheets in the snow or cuddles when the after effects of the first round of chemo were a bit too much)

I could see Laura hadn’t been right for a while. She had other issues going on her life and thought she was just stressed. So when she voiced concerns that it could be cancer I was part of the ‘don’t be daft’ school of thought, it can’t be anything serious.
Then she got the diagnosis and I was shocked. She did look unwell, she’d lost so much weight but I thought, hey, don’t worry, you’re young, active, don’t smoke, eat healthy- if both if my grandparents had cancer and recovered you’re gonna be just fine! The majority of people are cured right?
Laura’s weight loss and symptoms had been going on for a while at this point, I was trying not to think about how important it is to catch this early.

So after hearing that ground shaking news, I literally can’t believe it. This can’t be happening. How can this even happen? We used to party when we were younger but to be fair I was way worse than her! Its unfair. She’s a good person, a single mum with two boys, this sucks royally. I’m angry. I’m furious. She hadn’t got the right help from her doctor, she’s been Mis advised and let down by various health professionals. I get home and rant and rave. Then I’m worried, selfishly perhaps. Hang on, she’s the same age as me, similar lifestyles, we both have kids. This could so easily be me.

And later, after starting to process this news the dark thoughts and worst case scenarios keep creeping into my mind.
I think about what if it spreads, what if it’s terminal, and she hasn’t long left. God, how do you even start to deal with that? And then, what it I get cancer too? Is that mad? I start to think that maybe my health issues might be a symptom of something more sinister. After all if can happen to her it can happen to me.

How to talk to someone with cancer. I’ll be honest, I felt a bit uncomfortable, and this is with someone I’ve known nearly all my life. Cancer becomes a thing, an elephant in the room. I was worried about saying the wrong thing, I didn’t want to upset Laura by asking too many questions or by not asking any questions!

I sometimes find it hard to keep positive. Laura’s illness would play on my mind.
I’ve had nights where I can’t sleep for thinking and worrying. Worrying about Laura, her boys, her family, thinking how they are going to cope if one day she isn’t here. It’s Scary, having this hanging over you.

This journey has not been an easy one for Laura. There’s been many emergency trips to hospital, there was a while where every time we’d hang out was at a hospital, either recovering from surgery, having radiotherapy, getting a portacath fitted. It easy to see how quickly cancer can become all absorbing, in your thoughts, every moment. My friend with cancer, rather than my mate Laura. This was once a week for me and it was hard enough to see her having to do it, for Laura it’s every day. The way Laura is dealing with all of this is nothing short of awe inspiring. Her rainbow warrior spirit and fighting attitude is truly amazing.

when I introduced you to mocha frappacinos!

’m trying to make every moment count, in all aspects of my life. What Laura’s going through has definitely made me realise how fortunate I am. I give my daughter extra big, long cuddles, trying not to imagine that one day I might not be here to do so. I try not to be too grumpy about the mess around the house and spend valuable time with the ones I love rather than cleaning!
I Cherish the time me and Laura spend together. It’s especially important to me now. I don’t want to get all dark and melancholy but those negative thoughts are always there in the back of my mind.
I feel guilt that I’m okay. I worry, I love stronger and try to show it, it’s a jumble of feelings.

I have to add in here that Laura is an amazing person, she’s Intelligent, loving and kind.
Be grateful and thankful for who you are and what you have.

So what is cancer like from the position of a friend? There’s guilt, worry, fear and sorrow but there’s also love, courage, strength, kindness, admiration and faith.
I’m focusing on the latter.’

Thank you so much to my lovely friends for sharing. The common theme is that it’s hard to know what to say or do and both said they sometimes felt uncomfortable but neither showed it, not that it would have mattered. It really doesn’t. And it doesn’t matter what you say or do, just being there is the important thing.

So here’s to everyone who has baked a cake, cooked a meal, made cups of tea, brought groceries, drove to appointments, wrote words of encouragement, sent gifts to make us smile, bought a wig, mowed the lawn, talked nonsense, entertained, hugged, smiled, and laughed. Thank you for joining my fight <3

If you’d like to help fund research and awareness, please consider donating to Cancer Research UK, Bowel Cancer UK or Macmillan CancerSupport.

The New Normal

Most people think of cancer as a journey. I did too.  I even wrote it in the tag line for this blog (should maybe change that!). Most journeys have a beginning, middle and an end. Although the order may change, most cancer journeys involve similar treatments of radiotherapy, chemotherapy and/or operations to remove tumours. My journey was to be radiotherapy to shrink the tumour so it could be removed, followed by chemotherapy to mop up any residual cancer cells lurking about.  Then I would be ‘cured’ and the journey would come to an end, right?  Life, having been in suspended animation of a cancer patient, would then go back to normal. So way back in March last year when I was told this, I did the sums and worked out that all going to plan, this hell would be over in 12 months. That’s not so long, I thought to myself, I can totally deal with this. I can be strong, I can fight it, because however horrific the treatment is, however sick I feel, however much pain I am in, I can get through it because it will all be over in a year. I will get better. Life will go back to normal.  I will plan that trip to New York with my good friend to have something to look forward to ‘when I’m better’...

But what happens when the journey has no end? When there is no coming out the other side? No return to normal? When stage 1 becomes stage 4 and there is no ‘cure’.  No getting better. Then what?

The last few months, since the scans in September that confirmed the lung metastases had grown, I have been panicked by this idea of there being no end in sight, or not one I am happy with or willing to accept anyway.  Definitely more so than when I was first diagnosed because then there was a plan and an end.  The future is now so uncertain, and I’m finding it very hard to get my head around the uncertainty. The only thing that’s certain is that it will involve ongoing treatment of some form or another but even what that will entail is totally up in the air.  I liked having a plan and ‘We can try this and that, if that and this doesn’t work’ is not quite so reassuring. 

I’m seeing a counsellor from St. Cuthbert’s Hospice in Durham (you should check out all the great work that they do) and after explaining all these fears to her she said, ‘You have cancer, but you are still you’, it was a huge revelation.  Of course I am, I know that, but it’s so very easy to get caught up in the medical circus and the mind set of, ‘when I’m better…’ that you forget about who you are. I am still me. Wow! And then she added, 'You just need to find your new normal'.

And that same day I realised I had been putting off going back to work. For a number of reasons, mainly that I’m exhausted but also it’s a daunting prospect having been off for so long (I was on maternity leave when I was diagnosed so it has been a year and a half) and so much easier to maintain the status quo. On the other hand, I loved my job and got a huge sense of achievement from doing it.  I have begun to think that the lack of routine is unsettling, and returning to work will hopefully bring about some much needed sense of security, routine and that word, normality. Seeing colleagues (friends!) who know me best in work mode will be liberating. No need to talk about babies or cancer, if I don’t want to! I can return to work as me, the same as the day I left, and return home at the end of the day with something that is ‘just for me’ too, regaining my sense of self.

Who wouldn't want to go back to hanging out on a saltmarsh...

...and water sampling!

So whilst everyone is trying to keep to New Year’s resolutions and counting down the days until dry January ends, I am finding our new normal.  Starting with going back to work…

And any tips on how to speak to adults about important work-related issues, when your brain is fried from chemotherapy (yes, chemo-brain is a thing!) would be much appreciated!

To drink or not to drink...

Last Thursday I had an appointment with my oncologist to decide on the next step.  We agreed chemotherapy would be the best option; well actually the only other option is to do nothing – not really an option. So I start on Monday.

The drugs that will be poisoning me are Irinotecan and fluorouracil, if that means anything to you at all. Probably not, why would it? But yeah they are poison so kill off the good cells as well as the bad resulting in some nasty side effects. Most are rare but the common ones are nausea, fatigue, hair loss, and lowered immunity.  This last one may well cause me some problems.  If you read my last post then you know I was in hospital with an infected abscess on the primary tumour and had an operation to drain it.  Now I was reliably informed that the only way to get rid of this infection for good was to remove the tumour but since that couldn’t happen there is a risk it will return.  Lowered immunity obviously increases this risk and my oncologist is concerned enough that he is giving me a lower dose the first session so it’s not such a huge attack on my system and has prescribed antibiotics for the first month when the chances of low immunity are highest.

The necessary evil

So upon hearing this, good patient that I am, I went home and googled ‘how to increase immunity’ and basically the top tips are…

“Number one: eat a balanced diet with lots of fruit and vegetables (yup already do that one); number 2: drink lots of water (hmm mostly do this one already as well) and number three: Get lots of sleep (ha! This one isn’t going to happen, not in my house!)”,

And then it hit me, a distant piece of knowledge from the recesses of my morphine addled mind.  I got straight on the phone to text my good friend Ellie, ‘I’m going to need a pint or two of Cleo’s favourite tipple’. Ellie replied, more than happy to oblige my request; Cleo is 5 months old and her favourite tipple is currently available on tap and free anyway. Well it might cost me some cake (to fuel mama).

Beautiful Cleo who's lovingly shared her milk with me

My milkshake brings all the boys to the yard...

I’m sure that the more conservative of you may be shocked by the suggestion to drink human breast milk but I don’t find it strange at all, in fact it’s a lot less strange than drinking cow udder milk, and it potentially has benefits to adults as well as babies. Babies are born with little immunity so breast milk is high in immunoglobulins which fight infection.  Most mother's I know will have squirted breastmilk into a child's eye infected with conjuctivitis at some point due to it's magical antibacterial properties! Ancient Egyptians added it to honey and used it as a medicine and ointment. And whilst this may not be beneficial to the average adult, it makes sense that it could increase the immunity of someone who's immunosuppressed.

The other huge plus for cancer patients, which I discovered upon googling, 'breast milk and immunity', is that there is some research suggesting that a component from breastmilk, HAMLET (Human Alpha-lactalbumin Made LEthal to Tumor cells) induces cell death in cancer cells, whilst leaving normal cells unaffected. HAMLET is a protein-lipid complex formed when the protein alpha-lactalbumin from human breast milk changes structure by binding to oleic acid (the majority of fatty acid in breast milk) in vitro. Experimenting on mice, scientists have shown HAMLET to reduce the tumours of 40 cancers, including bowel cancer, and are now carrying out clinical trials in both bowel cancer and bladder cancer patients.  Now, I have trawled the internet looking for information telling me that alpha-lactalbumin in its cancer-busting form is found naturally occurring in breast milk and therefore readily available by drinking it, but unfortunately I couldn’t find any.  The human body is an amazing thing though, and it wouldn’t surprise me if it had the ability to provide the perfect conditions whereby the reaction to form the  HAMLET complex takes place if it was required.

Anyway, even if drinking the stuff doesn’t kill cancer cells it may well provide me with a useful top up of infection-fighting bad boys! So if it keeps me out of hospital and still able to have chemo, I’m more than happy to drink a few glasses a day… and it really doesn’t taste that bad, especially in milkshake!

Chemo-ready

The last month or so has been a bit of a rollercoaster ride (and I’m not keen on rollercoasters) to say the least.  Following my scans at the end of August I was told I wouldn’t be having an operation to remove the tumour as the metastases on my lungs had changed so palliative chemotherapy was the most sensible next step to take.  This was a huge blow as you can imagine, secondary tumours are a lot trickier to deal with apparently, although I’m still not that clear as to why. Still I was determined to fight and get going with chemo as soon as possible. A few days later however, I was blue-lighted to A&E with suspected sepsis.  This changed everything as chemotherapy can’t be given if there is infection and the only way to get rid of the infection (caused by an abscess on the tumour) is to remove the tumour – and suddenly the operation was back on the cards!  When previously all I wanted was to get the damn thing out of me, now I was panicking about my lungs and wanting to get on with chemotherapy and the operation would delay this by 6-8 weeks.

That tumour will be removed one day

The hospital stay ended up being a gruelling two and a half weeks whilst they got the infection under control and got me ready for surgery.  Prior to going under, the surgeon explained the procedure to me.  They planned to remove the tumour and abscess and whilst there give me a colonoscopy and reverse my ileostomy.  Fine, ok, all good, I headed into theatre and the next thing I know is I’m in the recovery suite in absolute agony.  After a few moments of coming round I realised I still had the ileostomy and my heart sank.  I figured something had gone wrong; turns out after all that, all they could do was drain the abscess as removing the tumour would be too risky because it’s still too close to my pelvic bone. So it’s STILL bloody there and chemotherapy has been delayed by 3 weeks faffing time, plus another 3 or 4 weeks whilst I recover from the operation. I seriously feel like nothing can ever just go to plan. I'm totally determined it will be removed one day!

Some positives from my hospital stay: 1. People bring you rainbow cake and more chocolate than you could ever eat, 2. People teach you how to make old school friendship bracelets to while away the time, 3. Nope, I can’t think of a third.

Big hugs & bracelets

Anyway, moving on from that fiasco, last week I had a portacath (I know, I had to google too) inserted which is one step closer to being chemo-ready.  This was simultaneously one of the coolest and one of the most uncomfortable things to ever happen to me.  A portacath is a line to administer drugs directly into a vein, reducing the need for catheters which over time cause weakening of the veins, and my veins seem to refuse to have them in anyway. It’s a small plastic disc that sits completely under the skin in the chest, with a plastic tube that travels up and into to the vein, which joins the vena cava and down into the heart. That’s really cool, right?  Max reckons I’m some kind of robot now… I prefer bionic woman but robot will do I suppose.  Either way, this and the fact I took him to the Lego Ninjago Movie, means in his eyes I’m so much cooler now than I was a few days ago! Getting it there was not so cool.  It was inserted under local anaesthetic using x-ray to guide the radiographer.  I didn’t feel any pain but wow was it uncomfortable and weird.  It’s so so strange to have someone prodding and poking at your chest in such a forceful way it knocks the wind out of you. Then I could actually feel the tube travelling around inside my chest.  I was really panicky and shaky throughout (a nurse had to press down on my leg for the whole hour as it was shaking so much) but I did manage to take a sneaky pic of the X-ray afterwards though! I now have a scar on my chest and a small bump under the skin. Once the wound heals though, there shouldn't be much to see and because the port is completely covered (protected) by the skin, it's safe from being pulled at by little hands.

Bionic woman!

Scars are cool (Photo: Becky Williams,

www.beckywilliamsnewborns.co.uk)

Scanxiety; Sun, Sea, Sand; and a Swim

I haven’t posted here in a while.  I have been recovering from the ileostomy op I had 8 weeks ago (I will allow the delights of being an ostomy newbie a post all to themselves), and getting on with radiotherapy, which was completed on the 30^th of June.

End of Treatment Bell

So radiotherapy is over.  I rang that bell and the first milestone on the road to recovery has been reached.  Congratulations! Yay! Go me! It felt great for a few days but then the side effects (severe abdominal cramps and nausea, which, when they hit, send me to bed with a hot water bottle and a bottle of liquid morphine) and the scanxiety kicked in. “Scanxiety?” I hear you ask… Yes it is a real word apparently, at least in the world of cancer patients and survivors, and presumably any patient whose treatment involves scans and the potential for less than good news.  Scanxiety is, as you would expect, the sense of uneasiness whilst waiting for the results from scans.  I have to wait 6-8 weeks, whilst the radiotherapy is still working its magic, before having scans that will show us if it has worked to shrink the tumour.  I say ‘if’ because there is always the possibility it hasn’t worked.  There is also the possibility that it has spread elsewhere in the meantime, or that the nodules on my lungs that were ‘indeterminate’ have grown and are now very much ‘determinate’.  I’m usually a pretty positive person, but I have to say I have been a little on edge trying not to imagine the worst. 

 

Sun, sea & eating sand

Anyway as a result I have been a bit lethargic and uninspired; but last Saturday I returned home from an unusually sunny family holiday, feeling refreshed and energised by sea swimming, sandcastle building and wildlife spotting! So energised in fact, I have signed up to do the Great Scottish Swim on August the 26^th.  In a moment of madness, I rationalised that training will keep me occupied and motivated in the coming weeks thus minimising said scanxiety, with the added bonus of raising money for a worthy cause! That’s the idea anyway; it could all go horribly wrong resulting in my having to be rescued, half-drowned from the middle of a freezing loch.  I used to be a fairly big swimmer, visiting the pool weekly plus donning a wetsuit for a wild swim at every opportunity, and have done the Great Swim in Windermere in the past.  However I haven’t been swimming, not counting taking the children for a splash about, for well over a year now; plus I can’t get through the day without morphine, so I think swimming half a mile presents a fairly decent challenge.  I had probably better get some training in!

Just one of the many...

I am going to be fundraising for Bowel Cancer UK.  A pretty obvious choice, I’m sure you’ll agree.  They do an amazing job supporting research into bowel cancer as well as campaigning for early diagnosis.  Their Never Too Young campaign, which aims to improve clinical practice and policy in the diagnosis and treatment of younger sufferers, particularly resonates with me due to the issues I had getting a diagnosis. I really hate asking people for money (so don’t make me!) but if you did fancy supporting me please check out my Just Giving page and donate (if you like) or share it with your friends and family (if you like). Either way thank you very very much!!

Great Scottish Swim - Loch Lomond