23. Embracing Change

There is a prayer that I said many times in my childhood, due to going to a convent school, that has appeared back in my life, now our children go to catholic school.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference”

I honestly don’t know what I think about religion or God or any of that stuff, and I am not going to go into it here! However I like the message in this prayer, and it is pertinent to me and my situation right now.

After a 2.5 week wait for my scan results, I had decided that no news was good news and my scan would be clear. I was wrong. My scan showed a dodgy lymph node near my pancreas that needs investigating.

I was warned this would happen. Things would show up and need to be tested. As a result everyone seems confident that it will be nothing as it is not in a ‘cancer spread path’ and I am not to worry. (Although I have been told not to worry about a lot of things recently, all of which have happened, so it is hard not too)

So ‘Grant me the serenity to accept what I cannot change‘ is going round in my head.

Luckily for me this weeks ‘don’t worry’ news was nicely cancelled out by a fantastic night of fundraising for Bowel Cancer UK organised by some wonderful friends. Firmly sitting within the ‘change the things I can’ side or the prayer. Doing something to raise money for cancer. As research really does make a difference.

It reminds me of my earlier ‘it takes a village’ blog post. How when women come together, amazing things happen. Around £700 has been raised, and boxes are still being collected so it could be more! Amazing! Helen x 2, Vicky, Lu, Georgina, and Suzanne; thank you ladies for organising something that was really good fun, while being for a good cause.

So on with my cancer journey I go. This time to the Hammersmith hospital for a endoscopic ultrasound and biopsy, that hopefully I will be fast asleep for throughout! Let’s hope it says all is ok.

In the meantime plan and look forward to Christmas. Our first in our current home. Here’s to a bit too much food and wine. To singing carols and watching nativity plays. To putting up our Xmas trees and stressing about the lights. To log burning fires, warming stews and mulled wine. Let’s not forget lots of chocolate and cheesy movies. All spent with family and friends. Here’s to ending 2017 on a high. It’s been a rough one, but also a good one, full of love, laughter and living.

XXXX

22. It’s been emotional!  

Who knows how any of us will react when we hit one of life’s road blocks. All we know is none of us is going to sail through life without at least a couple of bumps in the road. As I finish my chemo cycle, which right now has left me feeling pretty 💩, and await my scan 🤞🤞🤞, I am thinking of all the things that I have come to appreciate through this whole Cancer crap…..

Life isn’t perfect, but that doesn’t mean it isn’t wonderful

Life can be tough at times, but so am I and so are you

You don’t have to be perfect to be strong and happy

You are stronger than you realise you are

Be the reason someone smiles; be kind

I long for my relationship with Cancer to end, but the lyrics of Hotel California by The Eagles, ring in my ears.

Last thing I remember, I was Running for the door, I had to find the passage back to the place I was before. ‘Relax’ said the night man, We are programmed to receive. You can check out any time you like, But you can never leave!’

This is because I have 5 years ahead of me of scans, scares and hope, to get to the amazing finish line of NED. No Evidence of Disease. That is the end point we all hope for and sadly and heartbreakingly, not all, are able to get to. 

Over the next five years, if all goes to plan, I will get 6 monthly scans for the first two years, then yearly after that, alongside yearly colonoscopy’s till I reach the 5 year mark. If all doesn’t go to plan, then I will just have to deal with that if it happens. 

I saw the below the other day on Pinterest and, I have to admit, I like a little bit of star sign fluff. I am Sagittarius, it made me chuckle. I think I am definitely optimistic, but not necessarily indifferent! I think cancer has made me a bit soft, I keep telling everyone that I love them! 😂

This is because this year has been life changing. It has taken away and given, in the most bizarre, heartbreaking and amazing way. It has been raw and dark and painful and scary. However it has also been a year of love and honesty and strength and hope. That is why the lyrics ‘You can check out any time you like, But you can never leave!’ Ring in my ears so clearly, for the reasons below. 

  1. Cancer doesn’t just go away. It goes into remission, and you have to wait and see if it awakens. It doesn’t let u just check out and walk away. 
  2. Cancer changes you. Like anything major that happens in life, it leaves its mark, both good and bad. You can’t go back to what and where you were before it all started. 

So with all the above rocking around in my head, I take all of the strength that I have found within myself, take a deep breadth and step into the next stage….. 



21. Over it ?!?

I have a cold, when you are on chemo this feels like u have been hit by a bus. Maybe I finally realise what ‘man flu’ is like 🤧😷🤒🤣.

The hardest thing I have found with having cancer is the mental battle I have had to fight with myself. I tell myself…..Get out of bed. Smile and be a happy mummy around the boys. Don’t feel sorry for yourself, it’s not that bad. Get a grip.

However, right now, feeling like crap. I am just really BORED OF MYSELF and totally over it. I am over feeling ‘meh’. I am over blood tests, 100s of tablets, diarrhoea, nausea, peeling skin, sore feet, tiredness. I am tired, all the time 🙄🙄 💤…….. And you all maybe ‘over’ this blog 😂

I think I am feeling this way because I am hoping that this is all going to end soon. That a potential finish line is in sight. Of course it will always be with me. Many scans and tests and scares will be coming my way. However, the ‘no treatment for a while’ horizon is so close!

It makes me think about how many people, right now, are thinking, feeling, hoping the same things as me. How many people are  reaching their 5 year clear mark. How many people are facing devastating news and huge setbacks.

This is because 1 in 2 of us, yes 1 in 2, will get cancer in our lifetime! It’s a depressing figure. As a result it is the second biggest killer in the UK.

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However, more and more people are surviving cancer and living with cancer. This is because of the amount of research that is done in regards to cancer. Cancer gets a lot of attention due to its common appearance in our lives, no one is not touched by it. As a result lots of fundraising happens for it. Not all diseases are that fortunate.

One thing we have learnt, through research, is how we can look after our bodies to help ourselves in preventing cancer.

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Sadly it is not a way to avoid it all together. I am not overweight, do not eat a lot of red meat, am relatively active. However I could reduce my alcohol intake and I did used to smoke 🤔. So these learnings have helped and do help.

If we focus on my cancer, bowel cancer, you can see how much a difference clinical trials and research does make.

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Having been affected by cancer and learning how individual it is, how every case seems to be different, that it maybe a lazy cell growth or the devil itself, has taught me that they may never be a cure. However it has also taught me that the money people give and raise for this horribly common disease, really does make a difference.

It makes a difference to me, as it gives me hope. It has enabled  me to have my treatment at home. It has meant I can live, love and laugh for hopefully a while yet. It tells me to get a grip and stop being ‘over it’, because I am, so far, responding to treatment and doing really well.

So thank you for all the marathons that are run, the cakes that are baked, the beards that are grown, the multitude of challenges undertaken, the money given. It really does make a difference. It really is driving change.

Look after yourselves as best you can XX

 

 

20. Hairy armpits anyone? 

Sam asked me the other day why it is ok that daddy has hairy armpits and hairy legs   and I have to shave mine. 

I was a bit stumped how to answer this. In the quick moment that passed, I said “I liked to do it because it makes me feel nice. Women don’t have to do it, and not all do, but I like to.” He was happy with this response, thank god, and ran off to have some hot chocolate with his partner in crime, Oliver. 

It got me thinking, how we choose to present ourselves to the world reflects who we are on the inside. E.g I like a rule, and don’t like to stand out too much, one of the physical manifestations of this is, I shave my armpits! Cancer can be so cruel that it can physically really effect you. Meaning you loose the ability to manage this! I was so lucky that I didn’t loose my hair, or loose / gain weight etc… I could still feel like me, and the reflection in the mirror didn’t change. I Could match how my outside self looks with my inside self. It would have been so much tougher if this has not been the case. A reality for so many cancer patients. 

With this in mind, and as the end of my treatment comes ever closer (well the end of Capceptabine chemo anyway!) I am thinking about how Bowel Cancer a.k.a SID THE SOD, has changed me on the inside.


Surprisingly it has given as many positives as negatives. Let’s get the negatives out the way. Cancer is a killer, it is different for everyone, so no control or clarity on how to treat it. It is something they never tell you that you are cured from. It brings uncertainty, fear, sadness. For the lucky cancer patients, years of follow ups and treatment and possible reoccurrence, and for the unlucky cancer patients, the loss of life. 

Quickly moving on to the positives. It makes you love life. It makes the sun shine brighter, the air smell fresher, the humdrum of the everyday, magical. It makes you hug everyone more often, get in contact with everyone you love, and tell them you love them. It makes you smile and laugh and appreciate your life. It makes you grateful and thankful for the life you have lived, and focus on how to be a nicer, kinder, better person if you get to stay around. 

So SID THE SOD literally took out a lot of my insides, but he didn’t take anything I can’t live without and his presence, I hope, has made me a kinder, more patient person who is more appreciative and thankful. 

SID, I wish u hadn’t come along, but I think, you have probably done me some good. So to move forward, I will keep a few quotes in my mind to see where it takes me…. maybe to hairy armpits 🤣


19. 1 in 19

1 in 19 women and 1 in 14 men will get bowel cancer in their lifetime. I am one of them. 

Over half of bowel cancer cases are diagnosed at a late stage in England, Scotland and Northern Ireland.

This is a pretty depressing statistics, when you are 1 of the 19, and when early stage detection is curable and later stage, often, is not. As a result of this BOWEL CANCER UK have launched a #getpersonal campaign to help address this issue. 

“Through the Get Personal campaign we are determined to make real change happen for people diagnosed with advanced bowel cancer” 

Bowel Cancer UK

It makes me think of my journey. How easy and simple it has been for me, because I had personalised care. I have my sister Vicky, my personal guardian angel, more accurately, my personal warrior. 

Vicky has been by my side, all the way, navigating the system, that I had no understanding of. Getting me the right people at the right time and quickly. Having cancer is shit. Your cancer being bowel cancer, when your sister is the manager of The Polyposis Registry at St Mark’s, is bloody lucky!

  1. Who else knows you should ignore your GP, and tells you to go to a specialist so your cancer is identified at stage 3, not stage 4 (advanced) 
  2. Vicky knew who she wanted to be my radiographer and my surgeon. Who else gets such amazing reassurance about who is looking after them? 
  3. Who else has a Vicky in their hospital meetings to question and check things you don’t understand, or are too numb and in shock to think to ask?
  4. Who else has a person, who understands the treatment path chosen for you, and can reassure you it is the right one? 
  5. Who else has a sister who nurses you back to health in the hospital, and when you are back at home. Making sure you feel safe when you are feeling your most vulnerable? 

I tell you who else does this. Specialist Nurses. This is why we need more of them, this is why the #getpersonal campaign by BOWEL CANCER UK is so important! There are simply not enough of them.

I know this because I see how much Vicky  cares for all her patients in The Polyposis Registry, I see how heartbroken she gets, when one of her patients becomes unwell. 

NHS staff want to give personal care, and work very long hours to do the best they can in a system that is complicated and under immense financial pressure. Vicky often works on her days off and also raises money for her department in her ‘spare time’, along with her team, to get more money for better patient care… while having 3 children and me to look after too! No wonder she gets stressed!

How lucky I am to have my own guardian angel and personal warrior. Thank you Vicky 😘 

As a result, I think  #getpersonal is an amazing campaign, that I will support however I can. Thanks BOWEL CANCER UK for driving another great initiative forward x

18. Just Kiss them & Be Kind 

I am sitting on my couch with Oliver. We have Tom and Jerry (or if you are my boys… Jerry and the mouse 😂😂) on TV. I am wearing a dress that is the same fabric of my couch (see below 🤣) and I am feeling pretty rough. I have a bad tummy today and lots of cramping and nausea to go with it. Sigh. But only 1 round left to go!!!! (Hopefully… scan dependant !) 

I also had a not too successful school run this morning. Where I lost my temper at Sam,  he kept arguing with me till I screamed (yes one above shouting !!) DO AS U ARE TOLD AND DO NOT ANSWER ME BACK… which made him cry and me feel like the worst mother. But then again ……

When you have cancer, everyone is constantly supporting you. Whereas it’s tough being a parent. There is a lot of  judgement and you feel you are constantly being told how you should / could be doing better.

(Applicable to dads too….)

Within all this grrrrrrr, something wonderful happened 4 days ago, that makes me feel all lovely and warm and glow inside. My Nephew, Oscar, was born 😍


(Missing is mummy to Oscar… just given birth and funnily enough was happy to get dressed in peace while we all gushed over Oscar..)

Holding him for the first time, in all his wrinkly, perfect, newborn gorgeousness, reminded me, that they days can be (sooooooooo) long (don’t even get me started on the nights!) and the years far too short. That it was 4.5 and nearly 7 years since my babies were this small. That while it does seem a while ago, it also seems like yesterday. That my babies are actually boys, and only on loan to me for such a short time.


All of the above has put me into a reflective mood about parenting.

Firstly, what is the most important thing I need to try and get through to my children as their parent? I hope I get them to understand how important it is to be kind, loving, honest and true, so that these things will come to them too. 

And that they need to try there best, and try again when they fail. So that they can be happy and deal with what life brings their way. 

 

Secondly, for us parents. Why are we all doubting ourselves so much? We are all, just simply, trying our best, to bring up our children to be their best. We need a little less judgment and opinion and a little more kindness. As it is not what we say, but what we do, that is how our children will learn. 

So sorry Sam that mummy screamed, I should have kept it at stern 😂.

To my brother and sister in law, who will be inundated with advice and opinions about what is best for Oscar….if in any doubt, follow what mum said to me when both mine were born… Just kiss them and be kind. 😘

 

Spike Milligan 

17. Missing a beat

Before Sam arrived and life changed as we knew it, I had a miscarriage at 12 weeks. I started to bleed and experience a lot of pain. They scanned me, and told me they were very sorry but there was no heartbeat and I was starting to miscarry. 

The doctor told me that we were not to worry, that it was very common and normal. I told him, not common or normal to me. To me, it was a lost baby, one that was already much loved and wanted. 


I fell pregnant with Sam, before the due date of baby 1. This means that I have conflicting feelings about the miscarriage. It’s a loss, but at the same time, I wouldn’t have Sam and Oliver if that pregnancy had resulted in a baby. So it was also not meant to be. Our family is Damian, myself, Sam and Oliver, and is just as it should be. 

Sad things happen. At the time of these events, it is very raw. Panic, fear, sadness, can seem all consuming. 


As I start round 7, I find that the rawness of how I felt back in April is a memory now. I have moved on from shock and fear and moved into resilience and acceptance. 

I mentioned chunking in a previous blog, and it’s importance has been highlighted again, as I review how my feelings, and my outlook, has changed from the beginning of all this, to now. 

In 6 weeks, chemo will be over and it will be scan time. I need to focus on getting the chemo done with, rather than let scanxiety ( made that word up!!) start to build within me. It is bubbling away inside me and I need to keep a lid on it. 

I can’t let my mind start to mull over the fact that I won’t be deemed cancer free for 5 years, and at any time, it could rear it’s horrible head, as an uglier, more evil  METASTATIC cancer. Even the word is horrible isn’t it! So I need to keep it in nice manageable chunks to keep me calm. 

I also need to keep, at the front of my mind, how cancer has made me make the most of now. 

(Like dancing the night away at Damo’s 40th party on Friday…) 

Oliver starting school this week has also reminded me of this, and taught me something too.  My heart missed a beat as I walked away from him knowing that now he had a little world I was not in control of, or central in. 


 

He was so excited about his next step of growing into a big boy. He didn’t stop to think it may be scary or overwhelming. I need to use a bit of Oliver joy, and take the next step in my cancer journey with as much hope and positivity as my little boy showed on his first day at school. 

It reminded me that while I may be old I need to look at things, sometimes, like a child does. With awareness but without judgement.


 

Life can be really scary and hard at times. However if we  break it down into manageable steps and try and approach life with as much positivity as we can scrape together, I think we will be amazed at what we can get through and what we can achieve.

X

 

16. In sickness and in health

I met my husband 15 years ago this Christmas, quite randomly, in Brixton academy. 

Today is our 8th wedding anniversary.

We have done so much together, and as it was a random hook up, we have met so many wonderful people through each other and also lived across the world from our native homes.  (Damian more than me, it has to be said, but no one I know loves London more than him!). Being together has given us more than each other, it has made both our lives richer. Lucky we met! 

The vow, in sickness and in health, has been tested this year. He has been right by my side through this whole crappy cancer diagnosis. 

  • He has washed me when I couldn’t wash myself. It made me sob my heart out that he had to do it. He held my hand while I cried and the shower washed over me and told me it was ok, although it so wasn’t.
  • He has slept by my side, not leaving me alone, while I was scared and vulnerable in the hospital. 
  • He has held me while I cry, sob, am grumpy and afraid. 
  • He has made me laugh when I needed it. 
  • He has been both mummy and daddy when mummy has not been feeling very well.
  • He has not shown his heart was breaking too, even though I knew it was.

Quite frankly he has nailed it! 

It is tough to be the carer, everyone worries about me, and he has to be the calm, happy, coping one. It’s tough. He has done amazingly x

Thank u Damian for loving me in sickness and in health. I really hope I get to grow old with you xx (although sam and Oliver would say we already are old 😂😂

From this ….

To this ❤️💙💙 

One day we will get a family shot where we are all smiling, or looking normal at least 😂😂


…. so close with this one.. until Sam’s last minute glasses moment!! 

15. You will, always be here, won’t you mummy?

That was the question my son, Sam, asked me at 2am this morning. He woke up thirsty and wanted a drink. Normally he would get it himself, but we are away in Rye, and he was disoriented. He is more clingy to me these days. There is worry in his voice when he doesn’t know where I am. He cuddles me and grips my hand. Wants to sit next to me, or on me, as often as he can. (Oliver blissfully unaware. It’s wonderful!)


Yes Sam, mummy will always be with you, was my answer. 

Physically I may not, but my love for him, will be. So I didn’t feel it was a lie. (It is important to point out here, I don’t find it hard to answer because I may die of cancer, but because no one knows for certain, do they?) 

Cancer makes you realise your need to live in the present. In some ways, cancer is a gift to make you live. To appreciate. To build memories. To tell the people you love, that you love them. 

41,000 children lose a parent every year in the U.K. It’s a staggering and heart breaking number. It’s been on my mind this week, with the 20 year anniversary of Diana’s death. The impact it had on her sons lives. How they miss her still. How irreplaceable a parent is. 

I am 38 and I have needed my mum more than ever this year. I needed her as a child, obviously, but I have needed her as an adult too. When I became a mother, it was my mum that watched out for me. Would come to my house and see the washing overflowing, or notice I was a exhausted and send me to bed while she cared for my baby, and so much more. When I went back to work, she has looked after the boys one day a week for me, despite working full time as a nurse herself. So they were in childcare one day less and I could feel less guilt. My mother is a constant, positive, calming, loving presence in my life. Not having a mum, even at 38 is unthinkable! 


(Mum and I, 3 days before I got diagnosed with cancer, celebrating Mother’s Day)

When Sam was 11 weeks old, Damian lost his dad. It was an unbearable time for Damian. A newborn child in the U.K. and a dying father in Australia. He was literally torn in two. Losing his father when he became a father, has left a massive hole for Damian. He talks about all the questions he would have asked his dad about being a dad. Of the positive and loving presence he would have been for our boys. Of the wish he has, that Grandad Ian could have held them both, just once. 


(Damo with his sister Melissa, mum and  dad, as a teenager!) 

We never know when a loved one may no longer be with us, or how long any of us have (terror attacks remind us all of that far to often.) What we do know, for certain,  is how much people mean to us. We shouldn’t let the daily grind mean we don’t make memories. See those you love as often as you can. Tell them you love them.

As Winnie the Pooh said ……

 

14. 3 score years and 10. 

One night, years ago, I was lying in bed with my husband (then boyfriend) in our Sydney pad (that we rented… oh how I wished we owned it 😂) and we had a conversation that went like this:

Me: Damian, I can’t get to sleep

Damian: try

Me: (ignoring Damo) I can’t get to sleep because I am worried about how much I am worrying.  

Damian: hysterical laughter! Which made me giggle too. When calm he answers me and gives me a cuddle ‘only u magoo (what he calls me) would say that, and it has to be the most ridiculous thing you have ever said to me.’

He then rolled over and went to sleep…. 

I am a person that likes a good worry. I am always fine when it comes down to it but I like a good worry beforehand. But I never worried about my health. I just worried about the silly everyday stuff.

I also love a good quote, which, if you have been reading my blog, you would know. I have two favourite people I like to get quotes from. Winnie the Pooh, and Mark Twain. 

Mark Twain was a wise fellow. He even has a quote that sums up the above story well.

I have spent my life worrying about things that never happened and now something has happened I have spent little time worrying about it! This is because when you are in the eye of a storm you just get on with it. 

I know that I am not going to change my personality, I am still going to worry about things. However this shitty cancer has shown me I am pretty strong when I need to be, and that is a really nice thing to have learned about myself. 

It has also taught me something else. I have learned from this cancer that it is a personal battle, and this has lead me to realise what a lovely little bubble I live in, and that I should be doing more for others. What legacy will I leave for the boys? What good will I leave behind? What have I given back for my life? Right now, to be honest, not a lot. 

So it’s time now, to focus on beyond my own little world and  focus on the bigger world and see, what, in my own small way, I can do to make it a better place. We can’t all rely on ‘3 score years and 10’ as my grandad used to say. We need to make the most of now. We need to leave a positive imprint. 

I learned this as over the past 5 months, since my cancer diagnosis, so much has happened around the world. There is drought and famine in Africa, Venezuela is on the brink of civil war, Syria and the refugee crisis continues, there is cholera and starvation in Yemen. Korea and the USA are at nuclear loggerheads, and then 4 European terror attacks… sadly I could go on…the world is a mess! Compared to far too many people, I am cruising along quite nicely, even with cancer!

So that is what I am going to fill my head with through round 6. Instead of worrying about the small stuff. What am I going to do to make sure I leave a positive imprint. 

So roll on round 6… I am ready for u. This is because in the big scheme of things, I am still ok, lucky and happy, even on chemo, and so many people (too many) are going through unimaginable hardship and heartbreak.

I will leave you with my favourite Mark Twain quotes that I think are pretty cool. The last one I tried to read to my boys the other day and they were like ‘what u on mummy 😂😂😂😂 ‘