** For the next month I am dedicating Mother of All Lists to Stand Up to Cancer. Each week I’ll l be sharing persons unique account of the impact Cancer has had on their life. **
This week is totally different. It comes from Tom Bourton who is media volunteer liaison manager for Stand Up To Cancer and Cancer Research UK. His role involves speaking to the breadth of people who’ve had close experiences of cancer. People from all walks of life…
On a daily basis, it’s humbling to have contact with wonderful people who wish for something positive to come from what they’ve experienced. My team works to get them involved in our campaigns – featuring in TV ads, posters, press articles, social media posts and much, much more. This is some of them:
Tarik and his wife Annalesha. Annalesha was diagnosed with breast cancer and sadly passed away just a couple of months ago. I continue to speak to Tarik often, as he’s keen to stay involved with us in Annalesha’s memory. Despite losing Annalesha, he’s so thoughtful about their journey through her diagnosis and treatment. His love for his family comes across so strongly in every conversation that we have and he’s determined to do all he can to raise awareness. It’s a real honour to be so close to the family to help share their story.
Carla has had cancer but also recently lost two friends to the disease. It’s emotional for her each time she speaks about them and she wants to spread the message that more research is desperately needed. It’s our job to support her before, during and after any media she does for us. Carla recently took part in a really physical fundraising challenge for us and carried a keepsake with her friends’ pictures to inspire her when the going got tough.
It’s been five years sinceDavid was diagnosed with testicular cancer and he continues to share his story to spread the word about the need for more research. David takes on everything with the same energy and humour he had throughout his treatment.
Jag and his wife Nikki have been incredible supporters for several years. Their son Amarvir was diagnosed with leukaemia seven years ago and they were told he may only live for 24 hours. One thing they’re really passionate about is raising awareness in the Sikh and Asian communities.
Having been diagnosed with breast cancer in 2014, Helen is determined to do everything she can to raise money for research. Through working together I got to meet her mum and dad too. It’s always such a joy to meet our supporter’s families. A diagnosis affects so many people, not just those who receive it, and to see everyone coming together is incredibly inspiring.
I met Alice many years ago when she supported Race For Life. After that, we kept bumping into each other at running events – she lives near me. In 2015, we ran the London Marathon together and soon we’re running the Birmingham Marathon. Alice says that running is important to her because there have been times when she couldn’t do it. She was diagnosed with cancer in 2003 when she was pregnant with her daughter, Macie – it’s rare to be diagnosed when pregnant. She was then diagnosed again 10 years later.
During a tough year of treatment including surgery, radiotherapy and chemotherapy, she couldn’t run and feared she might not be able to again. “When it’s difficult and I’m struggling, I just think about the fact that I can, and I think about people who haven’t survived who can’t be here and that stops me grumbling.” And for me, Alice stops me grumbling during races – if she can do it, I can too.
I’ve only been able to mention a few of the amazing people that I get to work with, there are so many more.
A lot goes into raising awareness of our work, but we couldn’t do any of it without our media volunteers. It’s wonderful when the stories appear, the films are complete, or we get some results showing the impact of a project – sharing those with the individuals and families I work with is the best part of my job.
If you know of anyone who might be interested in sharing their cancer story to help raise awareness, please fill out our form here. And to support Stand Up To Cancer, please visit Standuptocancer.org.uk
** For the next month I am dedicating Mother of All Lists to Stand Up to Cancer. Each week will be one persons unique account of the impact Cancer has had on their life. **
I first met Deborah aka @bowelbabe at the Stand Up to Cancer Day, where we spent the morning hearing from an oncology professor and visiting Cancer Research lab, before heading to the rebel heroes shoot in the afternoon. We just clicked. I loved her energy. Plus the fact that she is a bit sweary and laughs a lot.
That night I kept thinking, ‘I can’t believe Debs has got cancer’. Her attitude to life and treatment was nothing like I’d seen before. Needless to say I am chuffed to be bits to be able to share a Guest List from her.
I’m a 36 year old Deputy head teacher with stage 4 Bowel cancer. I write a weekly column for the sun and generally do my best to tell Cancer to Fuck off! Here is my Cancer thoughts and advice in a nutshell!
You are never too young, fit, healthy, pretty or ugly to get Cancer.
Get your boxing gloves out. Fight your corner and then some, to get quicker appointments, better options and more opinions.
If something doesn’t feel right – you are normally right. Listen to your body and if you are not comfortable don’t take no for an answer. My diagnosis took 6 months and I regret I didn’t push harder from day 1.
Look at statistics and then park it. They will not change no matter how hard you search!
You will go go into a dark place when someone tells you that you have cancer. It’s acceptable to get totally shit faced, buy loads of shoes and book an expensive holiday.
You will meet wonderful doctors, nurses and medical practitioners.
You will be blown away by their passion to help you even at3am after you vomited all over their shoes.
Be prepared to go insane during hospital stays. Just blame the drugs.
The drugs they give you after operations are an experience in them-self. Make the most of them because you will cry when they remove the magic green button!
Chemo is doable but don’t expect a smooth journey.
You might have side effects that force you into total panic but hopefully you will find humour in them at times! I for example, lose my ability to speak whilst having chemo. Imagine 20 shots of tequila in 1 go. Scary as hell for me, but funny to the observer!
Give yourself a break. Be kind to yourself and know that you will feel tired, sick, weak on certain days but it’s not all the time!
You might get used to having chemo but you will never look forward to it.
Never do chemo on a Whisky hangover. Tried it once – vomited all over myself and everything within site.
State of mind!
It’s a fucking harsh rollercoaster
Cry when you need to cry even if it’s in the middle of a pub, a changing room, walking in a beautiful garden or trying ok Jimmy Choos – yes we are allowed to get emotional over shoes!
Don’t watch the Ballet Giselle, 2 days after being diagnosed. It’s all set in the underworld and you might be thrown into the dark depths of depression hell as a result!
Know that even long timers have dark times.
Talk about how you feel including your darkest fears. You might not want to talk to those closest to you.
Wine, chocolate, shoes and pictures of Tom Hardy will help lift your mood.
State of body:
You will have scars. You will hate them at first. But you will learn to love them.
There is a chance you may just like to show them off at EVERY opportunity, use them as chat up lines or have a weird appetite for half naked photo shoots! Just Roll with it and blame the cancer!
You will be amazed at how fragile our bodies can be.
You will be amazed at how robust our bodies can be.
You will get Fucked off with being jabbed with needles!
You might discover an ability to shit, wee, vomit, sneeze and cough all at the same time!
Food and Drink:
Drink the bloody wine. Then drink some more.
Then have tequila.
And make sure you have champagne in the fridge to celebrate small mile stones or times you just don’t feel like vomiting!
Unless advised against by your doctor, people often over analysis what a glass of wine (or 3!) might do. The reality, is chemo is one of the strongest poisons we use in medicine. The odd glass here and there won’t touch the sides in comparison!
Eat whatever you want. Your body will tell you what feels right. I have days where I want carrots and only carrots, and days (sometimes 3 in a row!) where I’ll have McDonald’s for breakfast, lunch and dinner!
Ignore the advice (mainly from people who haven’t been through chemo) that says only eat green juices, washed down with a pile of kale. Unless of course your body wants it, now is NOT the time to be on the STIRT diet! Yes be healthy but EVERYTHING in moderation!
You will feel sick. Despite perfecting the art of vomiting between cocktails at parties – you should listen to your body. Don’t push yourself too far.
Curries might take you into an exploding arse realm you never knew existed!
You will become a cheap date. Your tastebuds change and expensive wine will be wasted on you!
You will sometimes wonder how you vomit sweetcorn when you ate peas!
Family & Lifestyle:
Your relationships with pretty much everyone will change – some for the better, some for the worst.
I love my husband now more than ever and our marriage is in a good place. 2 years ago we both wanted to kill each other.
Just tell your kids how it is. They are more resilient than you realise and will worry less if they don’t have to fill in the blanks themselves.
Take the help. People are wonderful and want to help. Don’t be embarrassed to be descriptive about the help you need.
Be naughty, have lots of fun and blame the cancer!
** For the next month I am dedicating Mother of All Lists to Stand Up to Cancer. Each week will be one persons unique account of the impact Cancer has had on their life. **
When Stacy AKA @beneath_the_weather reached out to me her story it stopped me in my tracks because it was so relatable. You see, we are both Mum’s to two small kids, which is a challenge in itself. But now Stacy is coping with something far more demanding: she has become husband too. This is her advice to anyone else who finds themselves in the same position:
My life in 2017 in a nutshell – I am a 37 year old fashion academic with two girls Dali (3) and Bay (1), a toy poodle Little Milk and I am a carer to my partner Greg who was diagnosed with stage 4 bowel cancer last year.
He was diagnosed on Bay’s 1st birthday. I had to hear him ask how long he had to live. I let Dali smash up Bay’s cake and eat it off the kitchen floor.
He began chemo on his 40th birthday. There was no cake involved because he felt too sick.
I began a crowd funding campaign Give4greg to raise money for treatment not available on the NHS. I set the initial target as £100,000 and lay in bed the night before the campaign launched thinking about what we could sell in our house if we only raised £200.
The campaign went viral and smashed the target in 48 hours.
Give4Greg has raised over £209,000 in 10 months.
Witnessing the kindness of strangers at this level has intrinsically changed me. I feel kinder, less judgmental, more likely to see the best in people.
When this is a matter of life or death, treatments and drugs being available privately but not through the NHS becomes an ethical question, not just a financial one.
You may not be the one with cancer but your life is also changed forever. All of your relationships will change. A lot of people will talk to you with a tilted head and a squint.
There are moments you aren’t proud of but they are honest feelings –anger, resentment, frustration, self-pity.
I feel like I need a better answer to the question ‘how are you?’ than a vague shrug or nervous laugh.
My mum said that she bought her white Nissan Qashqai because it was ‘a bit different’ so was annoyed when she suddenly started seeing them everywhere. They were always there but she had no reason to notice them. Cancer is the same. It’s literally everywhere but until it smashes into your world, you might not notice it.
The best things people have done for us is make food and send messages. Our friends set up a Whatsapp group to organise who was cooking what. We had home cooked meals delivered every day for four months.
Most people are desperate for you to be positive. I am but I’m not super human. One of the hardest things to deal with is being shut down with blanket positivity when you need to get the hard stuff out.
I started my website Beneath the Weather because I needed somewhere to talk about the hard stuff. It seemed important to offer this space to other people too. I’m not unique in shit things happening in life.
Hard stuff is a complex beast – it can be heart breaking but also funny, uplifting, comforting, encouraging, proactive.
Greg is the super talented one – he has been signed to a professional football club, been a rock star, published poet and fine artist, all in less than 40 years. I’ve always pondered what my talent might be, only ever coming up with making people feel at ease. I don’t think being a good person to chat to at a party is a lucrative career.
I’m the one with major imposter syndrome, who thinks she somehow conned a university into hiring her as a course leader.
I would never have started my own community if Greg didn’t have cancer. It is a strange feeling to become more authentic and confident as a person than you ever have been as the result of your partner becoming gravely ill.
The most important lesson I have learnt as both a carer and a mother – you MUST put yourself at the top of the pile otherwise what you have left for other people is just the dregs of yourself.
I do this in lots of ways – I have massages, I go out every week for dinner with my friends, I buy myself the wine I want instead of the cheapest. Importantly, I am in control of ALL music in my car (I can’t listen to the fucking beauty and the Beast soundtrack 30 times a day).
My advice to other cancer carers – say yes to literally ANY help that is offered. Being a martyr helps no one.
My advice to anyone who knows a cancer carer – Don’t ask ‘let me know if there’s anything I can do for you’.
Having to think of a task is yet another job to add to the already unwieldy to-do list. Rock up with a pie and chocolate, find out what day their bins are collected and pull them out onto the road. Take 3 seconds to send a message to say you are thinking of them. It will mean everything.
Just because you are young you are not immune, I was a happy and healthy mother of two so getting breast cancer at 34 was not part of the plan.
There are lots of different types of breast cancer, I had a 1.2cm hormone responsive tumour which was growing thanks to the estrogen in my body.
It only takes one cell. Cancer starts when one cell splits to make a new one and the DNA isn’t copied correctly. This can cause the faulty cell to split in to more abnormal cells at a fast rate forming a tumour. Sometimes these tumours are benign (non cancerous) as they are not able to invade neighbouring tissues like cancer.
When you have breast cancer you need to get ok with flashing your chest. A lot of people saw and felt my boobs during treatment, all well worth it to save my life but still a bit bloody mortifying.
Chemotherapy can be really freaking awful. My side effects made me feel like I had a cross between the flu and a really bad hangover without any of the fun. There are lots of different types of chemo used to treat different cancers. I only had four lots so they were pretty intense but weirdly my side effects got better and easier to cope with each time.
The worst side effect of chemo for me was insomnia, I didn’t sleep for 5 days straight, not a single wink for 120 hours. Temazepam helped me get through this and within a week I was back to enjoying some well-earned rest. Insomnia is a very common side effect in cancer patients but one sadly few people raise with their doctor.
Problems with sleeping and depression are very closely liked.
Shaving my hair wasn’t nearly as bad as I expected. I turned it from a negative in to a positive by having a brave the shave fundraiser. It was actually very liberating. Waiting for it to grow back after treatment stopped was the annoying bit.
You can ‘cold cap’ to stop your hair falling out. This basically involved freezing your head for hours to stop the blood supply to your scalp and saving your hair follicles. I didn’t fancy this much and as my hair was pretty thin already it wouldn’t have been very effective.
I would have a lot of scans, ultra sound, MRI, CT and Mammogram.
Mammograms are a bit like having your boob sandwiched between a Tupperware box and a metal plate.
I would gain a lot of support from social media. At the start of my treatment I created an Instagram account Cancerwithasmile to connect with other cancer fighters and keep me positive, I got so much encouragement and great feedback from this I started my ‘Cancer with a smile’ blog.
Radiotherapy only takes few minutes but you need to go every day for a several weeks. Its painless at the time but after a couple of weeks your skin gets irritated a bit like sunburn and it makes you tired. It was so much better for me than chemo. Most radio treatment travels through your body. You have and entry point and exit so you don’t leave radioactive!
They give you tiny black dot tattoos to line up the radio machine in the exact same spot every time.
Hormone therapy for breast cancer lasts 5-10 years and actually stops the estrogen in your body which then puts you into early menopause with lots of pretty rubbish side effects.
The support from my husband, friends and family was amazing. I have never felt more loved and cared for. My sister flew home from Australia to help us, my friends looked after my kids, brought me shopping, cleaned my house, walked my dog and kept me company.
It takes a team to fight cancer and I had a lot of good guys on my side.
Some of the people you think will be there for you aren’t but it won’t matter because people you least expect will show up for you.
Children are super resilient. They accept change super quickly and can even offer you support with cuddle and giggles.
Having critical illness cover was the best thing my husband talked me in to.
Before cancer I was so busy all the time trying to be the best mum, best wife and best business owner I could be and it was running me in to the ground. Having cancer has made me focus on what’s important and spend more time on me doing simple things I enjoy like reading and yoga. Oh, and more holidays of course!
Investing in my own wellbeing makes me a happier better person all round.
Getting through such a hard time made me a more positive and confident person. I felt like if I could walk in to the playground with a shaved head I could do just about anything. It taught me to slow down and appreciate the little things.
I actually think having cancer has made me a better person!
**For the next month I am dedicating Mother of All Lists to Stand Up to Cancer. Each week will be an account of one person’s experience of Cancer.**
First up; me. We lost my wonderful Father-in-Law Mike to Cancer. We miss him everyday. But his spirit lives on, particularly in his grandchildren. Bertie reminds me of him in so many ways even though they never got to meet one another. Genes are amazing aren’t they?
I originally wrote this account of his battle with Cancer for the Huffington Post:
Cancer. You can’t escape it.
You may be one of the lucky ones who avoid getting cancer. Unfortunately that means someone you know will almost certainly be diagnosed with some form of the disease at some point.
It’d be easier to bury your head in the sand about it.
Pretend it won’t ever happen to you.
But one way or the other, that choice of blissful ignorance is likely to be taken out of your hands.
We lost my Father-in-Law to cancer six years ago.
He was just 60. We lost my Granny at a similar age a decade before that to cancer too.
I haven’t chosen to write about her.
It was an unconscious decision. Though her death was every bit as devastating, in fact the shock of losing her still catches me sometimes. It’s like my head hasn’t truly accepted she isn’t here. Perhaps because I was younger when it happened? Or that my Dad sheilded me from the reality of her battle? Who knows.
Anyway, this is about my lovely Father-in-Law.
With any passing of someone you love it’s impossible articulate the ramifications.
That fateful phone call.
Watching your husband receiving the news that his father has cancer.
The immediate mix of emotions: fearing the worst, but hoping for the best.
From there the cancer happened slowly. Even in a relatively aggressive form.
You go to bed that night as you always did. But wake up with that unconscious innate knowledge that something isn’t as it was.
And then you remember.
But still life carries on.
The first time you see the person that’s been diagnosed they seem, well, the same. They don’t look like they have cancer. They look like the same person.
There’s always a reason to stay positive.
A milestone to look forward to.
A person with a positive story you can to cling on to.
And of course the potential of a breakthrough thanks to the wonderful research and work that campaigns like Cancer Research UK’s Stand Up To Cancer funds.
They both have traits of their Grandad, even though they never got to meet him.
And so cancer seems OK.
The effects are more a sum of lots of small parts than anything sudden, big or frightening.
A loss of appetite here.
A persistent cough there.
A secret wince.
A frailer hug.
But then before you know it, it’s taken hold.
The brave faces are harder to maintain.
Plans bought forward.
Each moment more pertinent.
Goals shrunk. Priorities shifted.
No sky-dives or epic trip. Bucket list ideals go out the window. It’s about comfort. Laughter. Enjoying that favourite meal. Opening that special bottle of wine.
All the while without anyone having admitted that things have changed. If you love someone you ‘just know’.
Those last days of someone’s life aren’t something you can easily describe.
Triplets. That is next level isn’t it? Three new babies all at once!!! Going from a family a family of 3 (they already had a 4 year old henry) to a family of 6.
This is also the second time I’ve ever had a Dad brave enough to write. So thank you @daddy_to_triplets_girls– high-fives all round:
The day we found out I stood at work shaking having been told an hour earlier we were having triplets.
At the scan Mumma C and I laughed. Then cried. Then I had to sit down for a while as the nurses hugged us.
Ironically my Mumma C had been really sick once we had the positive result I mean really sick (as in pull over on the M25 and throw up out the window sick). We thought it may be twins after looking on the net. We even joked there could be more in there……
As the time ticked by and the poppy seed’s turned into sunflower seeds and then Peanut’s and then grapes. The scans came thick and fast. We hit key milestones, 12 weeks then 20 weeks then it was Christmas and we started thinking blimey maybe THIS IS ACTUALLY GOING TO HAPPEN.
Every time we believed it would happen the doctors kept us grounded and focused on the fact that the risks were so high.
Then we found out it was 3 girls, 3 girls ….. 3 girls, I have no sisters, nieces…
What are we going to do? Boys are cool, boys like football and I like football. Boys like mud and I like mud.
But what do girls like? Dancing I can’t dance, apart from when I’ve had a few beers at a wedding.
At 24 weeks the girls hit the crucial milestone which meant they could technically survive if they were born and we announced we were having triplets to our friends (our family knew early on).
The hardest part was the questions from people. We didn’t really know what we should do we just had to wing it and get on with it but we couldn’t do that until the little babies arrived!
We hit the 30’s week and could see the light at the end of the tunnel. We finally got a date 6th of April. As my wife grew from a slim 30 something women to a triple baby carrier we knew in our hearts that it now really was going to happen.
The BIG day
The birth. As we drove to the hospital we both were on top form. The day was finally here, we had the music on the radio and were in good spirits.
That was the first moment we had The Special Treatment: our own big room, we were called ‘The Triplet Parents’ by the nurses and doctors and it was all very good fun.
Then the reality started to kick in. Now I know I am the man in this and I don’t go through the physical pain but I was scared, so so scared.
I was scared my wife wouldn’t wake up.
I was scared one of the babies wouldn’t survive.
And, even though we had a baby previously. I really had no idea what to expect.
Then it was time for my little family to go from 3 to 6 (7 if you include Reggie the beagle).
The room was filled with at least 20 people: 3 doctors, 3 resuscitators, midwives, the anaesthetist, plus many more, that alone was completely daunting.
Mumma C was laying on a bed and when I asked when they were going to perform the cut she said they already had, despite thinking I would want to see the babies leave the belly I couldn’t handle it.
Within a matter of seconds they pulled Annabella out lifted her up for us to see and put her straight into a towel and incubator.
1 minute later Florence was out.
1 minute later Lottie all the same drill.
Within 3 minutes we had 3 children,
I held my wife’s hand and we cried and cuddled. I have never been so proud of anyone in all my entire life. She even beat me to the joke of ‘you wait 3 years for a baby and 3 turn up’ the whole theatre was in hysterics, that’s her to a tee.
It was amazing seeing them all there, the months of worry and uncertainty and here they were just laying so beautiful.
When you have triplets they take them at 34 weeks latest so your told to expect 1 – 2 months in hospital (we spent 3).
Mumma C was poorly after the birth I won’t go into detail but she had a negative allergic reaction. she ended up in hospital for 10 days.
That was incredibly difficult. I was caught in the impossible position of who needs me most my wife or my kids.
The important thing is we got through it as a family.
The girls reached more milestones: breathing unaided, taking all the milk, maintaining body temp and weight and once Mumma C was back to full strength she was able to go home.
As a man, and before the triplet, when the word routine was mentioned I would switch off.
But one of the doctors told me to learn the feeding routine or your basically fucked and boy was he right.
10am feed and change triplet 1
10.30am feed and change triplet 2
11am feed and change triplet 3
Repeat every 4 hours and under no circumstances change this.
It’s a military operation which goes well most of the time.
As a family we decided we were going to ‘get out and amongst it’ rather than let it stope us living our lives
We take them to the seaside, to Costa, to Centre Parcs. We go to farms and zoo’s and all the other things normal people do, I think subconsciously it maybe because I don’t want Henry to miss out and I love our family time.
Is it a nightmare?
Yes of course.
We get through a minimum of 20 nappies a day not including unscheduled poo explosions d 12 bottles on a constant cleaning sterilising cycle, 5 bottles of gripe water a week, 4 tins of premature milk a week, 3 bottles of Colief, a box of gaviscon etc etc.
Whatever way you look at it having 3 babies doesn’t really work.
There are very few buggy’s to choose from.
You can only really hold and feed one at a time each
Women only have two nipples etc.
So you have to think on your feet: one cot will do to start with. We put a rolled up towel to divide the cot into three parts and off you go…
At the start of the journey we knew nothing about what we needed and what we may need, this was one of the reasons why I started my Instagram so I could help others by advising what is useful and what is just not needed in my opinion, 11 weeks in and I still have no idea,
Beg, borrow and steal everything you can, people have been hugely generous to us and we have accepted everything to try out and see what works and what doesn’t.
Donate what you don’t want and need to other people or the preemie stuff back to the hospital, but just don’t expect your house to be clear and don’t worry about it, I know I joke but I seriously don’t care anymore.
I speak on Instagram to other triplet families. We share our wisdom as the reality is that only people who have had triplets know what its like to have triplets.
Even then its different for everyone; some have better financial situations, some husbands work away, some have large and close family networks, some have other kids as well so whilst you can share you are still very alone in a way.
And then you’ve got your other children:Henry is the sweetest and most gorgeous little boy. I had to be persuaded to have children , but he came along and it opened my eyes . I have loved every second.
The hardest juggling act is keeping his life as close to how it was before as possible.
Henry loves the girls. He loves getting hands on and feeding them so I would say involve your other child as much as possible. But also find the much needed time for them as well. Going out on your bike and chucking stones in the river is therapeutic for you as well as them.
Keeping up your standards. People said to me, don’t worry about the housework and the grass and the shopping.
In my opinion, yes do worry, your home is your castle.
I don’t mean spend your life on your hands and knee’s cleaning the corners of the shed floor but do run the hoover round and cut the grass once a week even if it’s at 9 pm, it does make you feel better and like your winning.
It is very hard, of course things get missed and things aren’t as clean as they were but just try!
Same with going out and looking and feeling good, we all go down the shops in our PJ’s now and then but keep trying to dress and eat well – we have spag Bol 4 times a week but hey at least it’s a proper meal and all it takes is a slow cooker!
Do it for yourself, not for anyone else that may pop round!
The future. Who knows what it holds for any of us, what I do know is however much money we have or where we live or where we work we will have 4 amazing kids and that in itself is enough.
Being a parent to any amount of children is so tough at times, they push you and your relationship to the line but we must stick together and embrace what we have, carry on being as silly as we can and having fun.
Ridiculously I want another child as I don’t think I can handle never going through the whole pregnancy thing again but then again I would say that …..
Ahhh the dreaded red book. Every experience I have had with it tells me there is something amiss with my boys. But what if its more than that?
Sally White (aka Wife of a Wig Wearer) talks about her experience of having a child that fails to thrive but that doesn’t yet have a medical diagnosis.
You HATE the Little Red Book with a passion
When my son was born (on the eleventh of September weighing 7.7- my own ‘disaster’ baby) two and a half years ago, he toppled out without so much as a wince. He was three pounds lighter than his brother but his little dot on the graph was there on ‘average’.
A tongue tie, weeks of hand expressing and a lot of heart ache later, he was down to the 9th percentile. Every two weeks I would shunt him to the health visitor clinic where we would weigh him and I would phone my mum and celebrate any weight gain or silently walk home and reflect on all the ways I had caused a weight loss in my skinnyrib babe. No one came up with a plan. No one offered any advice. I just kept on slogging. And tracking. And watching him fall down the percentiles. Fail. Fail. Fail. Fuck you, red book.
You’ve Waded Through the Treacle That is the NHS.
Getting an appointment on the NHS is akin to assembly Ikea furniture with no allen key. GP-Referral- Waiting List- Initial Appointment- Referral- Waiting List- Next step agreed- New waiting list.. I am bright, my husband is super clever, I have time and a support network and free minutes on my landline and I don’t let the public school boy wanker consultants put me off and I still find the whole system exasperating. I’ve been patronised, perved on, dismissed, and put on hold countless times.
I heart heart heart the NHS but it is, at times, woefully inefficient.
You Can’t Watch Mr Tumble. You don’t know if the problem is long-term, genetic, hormonal or even, in dark tired nights, fatal.
You cannot bear to watch anything about children with life-long conditions. The whole future is white noise. You can’t picture a future. Not yet.
You Avoid Things. Playdates. Decisions. Google. I couldn’t face meeting up with friends who had kids the same age. Alex didn’t sit up until 25 months. He still can’t really talk at 30 months. He’s a tiddler. I watch him with his peers and want to weep. I feel an ugly sense of envy towards all the parents of healthy children.
But I love that other kids don’t notice his stumbly, incoherent ways: other children don’t give a fuck about differences.
You Often Think You’re Pregnant.
You wake up feeling sick. You’re packing on the pounds. You cry a lot. Then you remember that having the tightening knot of somethingsnotright anxiety is barely an aphrodisiac and, odds on, you’re not with child. You’re just filled with fear and comfort food.
Paperwork Ahoy. You have a family calendar that has a BBQ for you, a badminton game for husbo, a mufty day for the five year old and dermatology, audiology, speech therapy, physio and dietician for your sickly one. You’ve probably kept all those appointments in your head. You’ve organised cover at work. Your mum’s coming up for the Thursday appointment. Your husband can prob do the one at 4pm. You’ll have to take both kids to the Tuesday one. Ugh!
How is this your life!? Then there’s the daily slog of meds, vitamins, supplements and creams.
Your Kids Think Waiting Rooms Are Soft Play Centres
Even when you factor in the extortionate parking fees (hoard those £1 coins!), a trip up the local A&E can be quite the day out. I remember fondly watching my two children knee-deep in toys and joy in the children’s wing waiting room. Proud moment.
Alex pure struts through the corridors of the NNUH: this is his turf, his second home. Love/hate that.
You Notice Change
I literally kissed someone who said ‘cor, he’s grown’. I beam when he learns a new word or smacks his brother or builds a marble run. I didn’t notice the leaps and bounds and easy-coming progress that my older boy made but having Alex struggle from each milestone to the next forces me to revel in each stumbling step.
You Hope For and Dread a Diagnosis
All the years of appointments, phone calls, long sobbing gulping weeping phone calls to your mum, divisive difficult conversations with your ‘it’s all fine, don’t worry’ husband, snapping at your robust other child, awful damaging trains of thought, finally culminate in a diagnosis. An underactive thyroid. 5ml of meds each day. Done.
Marginal relief then bring on the RAGE that this wasn’t picked up: ‘What could I have done differently? Why wasn’t this spotted? Who is to BLAME?’. And the worst, worst, question: ‘Is that all? Is this a sign of something else? Has it done permanent damage? Can I relax now?’ Is this finally the end of my little, little boy’s medical mystery? Oh please let it be so.