Us against the world…

I’ve ummed and ahhed about writing this blog because it’s to do with my youngest daughter and normally, my blogs are about me and living with cancer. I guess this does overlap somewhat.

I first knew something was different with D when she started to refuse to wear her shoes, socks, knickers, leggings when she was about 5 yrs old. I don’t know how much money I spent on trying to find items of clothing she was happy with but it was a lot! I tried seam free and even cut the labels out. Once we found something she liked, we stuck to buying the same brand every time. She’s the same now but it’s not as easy. She’ll currently only wear Tesco leggings and Next underwear. So we’ve stocked up. She outgrew her school shoes but wanted the exact same pair which meant ordering online from Clarke’s. She also recently got new glasses – yep, you guessed it, she chose the exact same frames.

It’s who she is and how she rolls. She knows what she likes.

Daisy has huge anxiety and can have a meltdown most mornings before school. She hits herself, shouts, cries and says she hates life and wants to die. We’ve just been refused help from one organisation because she does all of this at home and not at school – she masks whilst she’s there and they only go into the school setting?! Ridiculous huh but sadly not an isolated case.

She’s slightly behind academically and struggles socially. She appears slightly younger than her peers and this is becoming more apparent the older they get.

She’s a perfectionist. She’s kind. She’s sensitive. She’s tries her hardest.

After a typical day at school, she is pretty wiped out and spends most of the evening ‘decompressing’ in her room. Sometimes she won’t speak to me for a good couple of hours.

She often shouts at me (during a meltdown) that I don’t understand how it feels. And I don’t. I have no idea and it really upsets me. I wish, more than anything, I could take it away.

In January, we had our first appointment with a paediatrician to assess Daisy for an autism diagnosis. We’d been waiting a long time! The doctor saw tendencies during the appointment and we’ve now been referred for the next assessment – the only trouble is, there’s at least a 2 yr wait!! That’ll be about 8 years before anyone has taken me seriously.

Two more years of us, me, D and her sister, living and dealing with the meltdowns, walking on eggshells, butting heads with the school and fighting her corner. Having to explain her behaviours to people, adults, you’d think would understand. Having to watch her try with friendship groups but still being left out. It breaks my heart.

But I’ll tell you what’s really upsetting me just now and I can’t shake it. The fact that I’m going to die and leave all three of my children. I won’t be here to guide them, hug them, tell them things will be ok. I might not see them get married or have children of their own. Things taken for granted.

But its a little different where D is concerned. As her mum, it feels like I’m the only one who has her back. I won’t be here to fight her corner, to guide her through life and the tough times it will undoubtedly throw her way. I won’t be here to explain to people why she’s the way she is. Why she can say things she doesn’t mean. Why she sometimes comes across as rude – something I’ve been told a lot lately! She’s not rude, she just sees things very black and white and says what she thinks – her brain doesn’t process things like a neurotypical persons would.

I can normally box up the whole ‘dying’ thing but just lately I’ve found it really hard to ignore it. I feel frustrated. Sad. Angry. Why us? Why? Why? Why? I’m off to see my counsellor at the hospice this week to talk things through. To try and close the box again.

I did explain to the doctor that I ‘might not’ be here in 2 years – I’m aware that it sounds dramatic but it’s true. She said she couldn’t promise anything. So I guess it’s us against the world, just like always.

Life feels so unfair sometimes.

Tired….still

I never know whether to blog when I’m struggling. I don’t want to come across as a miserable cow but at the same time, it’s important to keep it realistic. Not only am I living with my cancer and all the medicines I have to take to keep me alive, I’m also living with all the crap normal life throws at you.

Every so often I struggle. We call them waves of emotion and you generally have to learn to ride them. They pass. Usually.

This dip I’m having has lasted a while. Pretty much since I got out of hospital if I’m honest. I’ve been trying to ignore it but it’s a bit of a whopper.

I just can’t find my spark. I’m fighting the urge to just hide away at home everyday. I have no desire to do anything – even walking the dog is annoying me! I don’t particularly want to see anyone. The things I am doing, I’m literally forcing myself to do.

The new meds aren’t helping. I’ve been weaning off the steroids for the past four weeks. I’ve put weight on and got the typical steroid ‘moon’ face – it doesn’t do a great deal for your confidence.

I haven’t been sleeping very well. Either wide awake in the early hours or disturbed sleep due to aches and pain.

The painkillers I’m on can affect your mood too so I’m kinda up against it. I hate taking all these pills.

Then there’s normal life.

My Daughter has autistic traits and although we haven’t had a formal diagnosis yet, we are on the waiting list to see someone. It’ll take 2 years before we’re seen! Until then, I’m left to deal with everything alone. Her meltdowns have ramped up since going back to school in September and quite frankly, I dread the mornings. Sometimes you just have to look at her wrong. Most of the time it’s her hair that sets her off. It has to be perfect. Flat. Exactly the same both sides. Not greasy. Not bumpy. I can stand and do her hair 5-6 times in a morning trying to get it just so. This morning it was her hair, her school skirt and her shirt! When she’s in a meltdown, she smacks herself in the face/head, scratches her self, hits walls, screams and shouts that she wants to die and that she’s going to kill herself. It’s really not fun. It’s exhausting. And all before 8.15am.

It takes a good 6 hours for her to ‘come down’. That’s the whole school day. It takes me just as long.

It also effects my other Daughter. She said it’s like walking on egg shells in the mornings. Not a nice atmosphere at all.

There’s little respite. Sometimes she goes to her Dads but, I can still find myself dealing with her from afar.

I just wonder sometimes what I’ve done. Why I can’t get people to understand that I’m tired. That I need help, support. That I take an awful lot of meds just to stay alive and that they come with their own list of side effects.

I like to think I’m a pretty tough cookie but actually I have my limits.

I’m just tired of trying to get up this hill alone.

Xx

Not feeling it.

I’m not feeling it. I’m very, very tired.

Since getting home from our travels last week, I have felt myself sinking a little lower than I’d like. These dips come and go and to be fair, I haven’t had one for a while.

I’ve questioned why? But there doesn’t have to be any reason. Life is enough sometimes. I get frustrated at myself because I feel like I shouldn’t really moan, even more so when there’s nothing substantial to blame.

I think it’s possibly the past few weeks. Being admitted to hospital wasn’t part of my summer holiday plan and now having to rely on taking Morphine and gabapentin has really thrown me. I’m not a pill taker. If I take paracetamol, you know I’m feeling rough! The hospice nurses have been great and have called me every week since, to check I’m ok. I’m seeing the oncologist next Friday (the 13th but we’ll ignore that!) and I’m going to ask what the long term plan is and if I can possibly look at coming off the tablets or if this is how it’s going to be now.

I’ve also got a numbness in my right hand side. It’s mostly affecting my face but is also going down my leg. The brain mri I had whilst in hospital came back clear so not sure what might be causing it. Another question for the onc next week.

We had a fab week away. We visited family in Cornwall which was lovely. I got to see my niece and nephews and spent some quality time with them. The kids had a fab time and we ate far too many pasties! Then we went to Butlins in Minehead. The main reason was to split the journey home – Cornwall is so far away! It was a great weekend and more memories were banked. But, I was glad to get home. I just really wanted to sleep in my own bed on my own (I’d shared with Daisy all week).

I’ve had a relatively ‘easy’ week. I needed to rest and just have some time to myself so I have been sensible for a change. But it’s boring. I like to be busy. I like to go to the gym. I’m going to try and get back to my classes next week although I’m already feeling slightly defeated – I already know it’s going to be tough after being away for so long. I can but try though.

Next week is busy….. Bone juice appointment on Monday. Zoladex on Tuesday. Oncologist on Friday.

It’s all good fun isn’t it xx

July!

I think I blinked and missed July! So much has happened over the past four weeks!

This month is always a little manic, what with end of the school year events – sports day, residential trips, non uniform days – everyday had something going on.

It’s also my birthday month. I was 41 this year and feel incredibly lucky to have seen another birthday. My celebrations lasted a week – starting on the 13th and ending on the 20th due to Daisy being away with school. Over the week we had a family meal, I went out for a curry with my friend Rob, dinner at the Marchmont with Gracie and her boyfriends family, a spa day and finally, out for birthday drinks in Watford.

The spa day was amazing! Gracie had bought me a cancer specific treatment day at the Sequoia Spa at The Grove, which consisted of a back, neck and scalp massage and a facial. I felt like a new woman and, without even realising, I really needed that day. It was lovely to spend the time with Gracie, just chilling together and having a giggle. I didn’t want to leave!

July also saw me doing a few media interviews too.

Macmillan had asked me to do some radio interviews about their new campaign ‘Milestone Moments’. They’re encouraging people to ‘celebrate’ reaching milestones and I felt that it was important to get a ‘lifers’ perspective on this.

I will never be celebrating an ‘all clear’ milestone but I do mark my cancerversary (the day I was diagnosed) every year. For my first cancerversary I went to The Grove for afternoon tea. For my second, I took my children for afternoon tea on a London bus (there’s a bit of a trend going on!), my third saw us going out for dinner with my two best friends and all the kids and my fourth was spent learning how to decorate cakes with fondant icing.

My fifth (this year), was slightly different. I went to see Hamilton with Gracie and although we had an amazing day, it was more a day of reflection.

When I was first diagnosed, I did some interviews for Breast Cancer Now that coincided with the advert I was in. During the filming I said that I really just hoped to last for 5 years. The children would be that much older and more able to process what’s going on. I never imagined back then that I’d still be here now – when you’re given an incurable diagnosis, you immediately assume that death is imminent. Now I don’t wish for time, I wake up, take each day as it comes and see where it takes me.

The feedback I’ve had from the radio interviews has been great so I’m happy that I was able to tell it from a ‘lifers’ point of view as we sometimes get over looked.

I took part in a charity ‘naked’ calendar on the 21st. A lady I follow on Twitter, Bowel Cancer Baller, has bowel cancer and wanted to raise money for Bowel Cancer UK and Maggies Cambridge. It was waaaaay out of my comfort zone but it was exhilarating!!! I’d never met any of the other women taking part but nothing quite makes making friends easier than getting your kit off with them!! The calendar will be out in September sometime.

I’ve also done a photo shoot for Asda magazine. I’ll be one of four people featured in the October ‘tickled pink’ edition. We were at a house in Peckham, London and after having our make up done, we had both individual and group photos taken. We stopped for lunch then spent a good hour being interviewed together. It was a fantastic day.

This week has been pretty awesome too!

Four years ago, we filmed for ITV’s Text Santa and during filming Julie Walters came to the house. She’s an ambassador for Macmillan and they were one of the charities being featured that year. To say we were all a little star struck is an understatement!! Since meeting Julie, she has asked after us twice every year and sent us beautiful hampers at Christmas.

A few months ago, I got an email from my contact at Macmillan to say that Julie wanted to meet us for a catch up. I was pretty gobsmacked to be honest but, after finding a gap in her schedule, Julie came round on Tuesday afternoon.

She drove the 4 hour round trip, stopped at the M&S garage up the road to buy cookies and chocolate for the kids and a beautiful orchid for me, and literally had us in stitches the whole 3 hours she was here. I don’t think I’ve met a lovelier person! Before she left, she gave me her contact details so I think it’s safe to say that we’re friends for life!

All in all, July has been pretty crazy and it’s fair to say that I’m pretty exhausted. I wouldn’t have it any other way though – busy is good!

I’d like to dedicate this blog to my YBCN friends who have died this month, in particular, the very lovely Bonnie Fox ❤️

Then and now

Four years ago, a year after I was diagnosed and life had taken a few stumbles, I wrote this article for the Daily Mirror https://www.mirror.co.uk/news/real-life-stories/single-mum-terminal-breast-cancer-5942662#ICID=sharebar_facebook

It popped up on my Facebook memories yesterday and after reading it, I realised how different it would be if I had to write it again now. Lots has changed.

I wouldn’t wish I wasn’t ill. I don’t know what I ‘believe’ but I do know that things happen for a reason. My life now is so different to what it was before and in a weird way, I actually prefer it. I have more zest for life, have experienced some amazing things and made many, many friends. I’m honestly living my best life right now!

If you’d told me then that I would still be here 5 years later, I would never have believed you. I never take it for granted though because I know I’m one of the ‘lucky’ ones.. Weirdly, I don’t want to put a limit on years anymore. I would just like to be here forever. Failing that…as long as possible.

I never finished the journal. It took an awful lot of strength that I just couldn’t find at the time. It’s not really relevant now as the children are much older and their quirky ways have changed somewhat.

Life has really levelled out. Living with cancer has become part of the norm and I don’t really give it much thought. I still have the routine doctor/hospital appointments but even they have become part of the woodwork.

I no longer feel guilty about the way certain things happened – I had to do what was right for me at the time. I’m choosy with my friends too. Hindsight is a wonderful thing!

I still struggle with tiredness/fatigue and that won’t ever change but it’s just about learning to manage it….I don’t obviously 🤣 I just crack on and do what I have to do then hit the stumbling blocks and have to have a few days rest. It’s so frustrating!

Being a single mum and living with cancer can still be tough at times, mostly due to tiredness but also because you have to deal with everything else that ‘Normal’ life throws your way as well! I wouldn’t change it though and seeing my children grow into the strong, beautiful, polite, well rounded beings they are is reward enough.

Having a cancer diagnosis really makes you take a look at life. It changes you. At first, everything becomes kind of urgent. And then it settles. I’d like to think I’m in a much better place compared to 4 years ago. Its all a bit old hat now!!

Expect nothing – appreciate everything

Xx

What a weekend!

If you have read my previous blog, you’ll know that Thursday 2nd of May was my 5th cancerversary. I have been living with stage 4, metastatic breast cancer for 5 whole years. It’s quite a milestone.

This weekend, I have ‘celebrated’ in style!

Thursday saw me heading into London with my oldest Daughter, Gracie, to watch ‘Hamilton’ at the Victoria Palace Theatre. It was AMAZING!! I mean, REALLY amazing!! If you get the chance, you HAVE to go!!

Friday night I was at the O2 with a fellow ‘lifer’, Dunise, to see Take That. It was the first time I’ve seen them live and they didn’t disappoint. They were fab! It really took me back to my youth – both school days and nights spent dancing on the bar in Jumping Jacks having an in house competition between the guys in there and us from Hotshots. Never Forget was always the last song of the night and the whole bar would join in with the chorus.

Saturday night was 80’s night at Watford Colosseum. We’ve been going since 2015 and haven’t missed one yet! It’s a good excuse to dust off my tutu and leg warmers and dance the night away. I may have got a little bit tipsy but a little (or lot!) of what you fancy does you good 🤣🤣

Sunday I took my son, Louis, to his last football match of the season. I had the night before hair, a ‘skew with’ head and pink stained eyelids from my 80’s inspired make up but I made it!! I did keep my dark glasses on though 🤣 I had a restful afternoon in the cinema watching Long Shot which was hilarious.

Monday was slower paced. My brother popped in for a cuppa with his family and then I went to the cinema with Becca again – this time we saw Tolkien. I have an unlimited card so go quite a lot. It’s nice to immerse yourself in a film and forget the real world for a while.

So, I have had a fab few days. But, I’m not gonna lie – I’m absolutely shattered! I may have had a granny nap this afternoon 🤣

The next few days will be rest days. Catching up with myself. Nothing new and just a part of my life these days. We often use the ‘spoon theory’ to explain what it’s like living with a chronic illness that can leave you fatigued after doing the smallest activity. One day out usually takes a good couple of days to recover so you can imagine what 4 days has done!

Not moaning though. I’d much rather be busy and am lucky that I can still get on and live my best life. One day that will all change so until then…..

5 years..

5 years!! 5 bloody years!!

It’s madness isn’t it?!

For the past couple of weeks, I’ve had flashbacks of the week that led up to my diagnosis. I remember what I did on what day – even down to the films I watched at home, my brother visiting, and eating the chocolates that he bought round (never too ill for chocolate!).

I remember being signed off from work because I kept bleeding heavily. I went to the doctors so many times between January and April that year but they just gave me mefenamic acid tablets to stop what they thought were heavy periods.

I drove myself to the breast clinic on the Monday of that week. Being told by the doctor that I was basically a hypochondriac and that she’d told me, not quite 6 months before, that I was too young to get breast cancer.

I went to my GP on the Tuesday and he sent me to my local A&E for a platelet transfusion only to be told by doctors there, that they don’t give them out willy nilly!! They were rough and, due to the lack of platelets, when they cannulated me (unnecessarily I should say), my blood went everywhere. It was up my arm, down my leg and over my shoes. Then they sent me home.

My mum took me back to the GP on the Wednesday. She promised to get me seen by a gynaecologist as quick as possible. She also told me that should I start to bleed heavily from any orifice, I was to call for an ambulance. I didn’t think much of it.

Until Friday morning. The 2nd of May 2014.

I was at home, getting the girls ready for school when I started haemorrhaging from my lady bits. I couldn’t get off the toilet. It was pumping out of me. I rang my mum and then I rang an ambulance. I’m not sure how I stayed so calm but I think it was for the girls. Daisy’s dad came and took her to school. Gracie didn’t go but instead followed the ambulance up the M1 (to a different hospital thankfully) with my mum.

The only thing I don’t have, is any sense of time that morning. I have no idea how long it took the ambulance to come – it felt like forever! No idea that I was in the back of it for quite some time before they drove off. No idea how long I was in A&E before I got a bed on a ward.

Until 6pm. That was the time I was told by the same doctor I had seen only a few days before, that I did indeed have breast cancer.

From that moment, time was everything. I didn’t sleep much that night, instead I sat in the corridor talking to one of the nurses. They gave me sleeping pills after that.

The rest, as they say, is history.

When you’re first diagnosed with incurable cancer , you just assume you’re going to die. Your mind goes into overdrive and there’s an urgency to make memories, to get affairs into order, make a will and plan your funeral.

You find a ‘new normal’ – the same but different way of life. You learn to live with never ending hospital appointments, scanxiety, medication side effects, fatigue, pain and depression.

But, as time goes on, I know I’m lucky.

I’ve lost many friends to this disease. Some diagnosed before me, some after. There aren’t any rules where cancer is concerned. Some of my friends have had progression, had to start chemo again, have surgery. I can’t help but feel a little guilty.

I feel incredibly lucky to have been stable for as long as I have. I don’t know what I’m doing but long may it last.

5 years ago I was given 6 months to live. Isn’t life crazy.

Xx