I’m still here!

This evening I saw an old school friend in Tesco (very unlike me as I tend to avoid going to public places as much as I can but Rob was at work and the kids were hungry!), she told me how well I was looking, asked about my treatment and was shocked that my chemo was a year ago and that I’m still in pain. So, I thought as you’d stayed and supported me this last year, it was only fair that I update you.

Obviously quite a lot has happened in the last four months so forgive me if I jump about; you probably know by now, this is my speciality.

Firstly, my annual mammogram in August was normal. I still have pain in my breast and on my scar from the lymph nodes under my arm. It’s so tight and feels bruised. My boob still has a tiny bit of the blue dye left on it and is now lumpy from scar tissue underneath. I’m very lucky I still have my boob and my surgeon was amazing. If it wasn’t for the fading tan from the radiotherapy, the tiny tattoo dot constantly reminding me and me pointing out my nice neat scar around my nipple, you may not even notice I’ve had surgery. When I raise my arm I now have an indented line going from 7 o’ clock to my nipple, that was never there before but, as I always say, I’m one of the lucky ones.

Right that’s enough about my boob and if all my work colleagues could remove the image of my nipple from your mind, that would be great – haha who am I kidding, I’ve shown most of you!

My hip/buttock/back/calf pain. Yep it’s still there, 11 months later. I’ve had X-rays, CT scan, MRI of lower back, pelvis and last week while spine.

I am currently taking two slow release opioids in the morning and three at night. Another three tablets for the nerve endings, two blood pressure tablets, one statin, letrozole (anti-cancer drug), some tablet for my bones and of course my insulin injections (6 a day). Think that’s it, good job B12 injections are only every 10 weeks!

I still have to have help every day to get dressed. I’m gutted my flip-flops are going to have to be put away, socks and boots are a complete no no. I struggle cooking, standing for longer than around 10 minutes makes me cry but sometimes sitting hurts too. I’m in constant pain, every day about a 6/10 but then it does go up to a 10 most days. I have to use my stick when walking outside; at home and School I use walls and tables to get about (that’s touching them not climbing!)

I sweat buckets at just doing the smallest movements. Luckily I have a handy fan on my desk! During the night it’s awful, I have to get up and ‘dry’ myself at least three times a night. When I’m asleep I’ve started getting involuntary movements with my hands, arms and legs. I have no control over them and they move about as if all the bones have disintegrated. My hands start spinning. It is really scary. I’ve nearly fallen out of bed a few times but it stops seconds after it’s woken me up.

I am suffering from severe fatigue. Not tiredness, it’s so much more. I drive with one eye closed at a time, I feel like there are weights on my eye lids, I physically can’t stay awake. Everything is a struggle but I have to keep going for the kiddies. They’ve already suffered so much.

My hair has a lovely curl about it. I can’t do anything with it so I moose it and put an Alice band in. When it’s wet it is like pubes on my head and when the moose has dried out, I’m more like Susan Boyle or the Governess off The Chase!

I really hate the way I look. I used to always match my eyeliner to an item of clothing I would wear but my eyes are constantly streaming so I can’t wear makeup. I feel so frumpy. I’m surrounded by beautiful people, all of whom I love dearly and would be shocked to read this I think.

As you have probably realised, I’ve gone back to work. I was really anxious to start with. Everyone was so excited for my return, I was worried I’d disappoint. My work have been amazing, I am incredibly honoured to work with such wonderful people. When I think about them I have tears in my eyes, they truely have been amazing every step of the way and they are continuing to be.

It has really helped me going back. I’d started just staying in bed all day, feeling sorry for myself which is so unlike me. I’ve put myself down for a few nights out too. I’m already getting a bit anxious because of my appearance but I know everyone will make it ok.

Oh my last MRI. Dr phoned Saturday to say results are back, it’s not cancer but can I come in Monday. I have a large bulging disc at T8/9 and L5 is pinching on S1 root. I think.

My dr sent me to hospital the other week, short version, I ended up having head CT. First thing when results came in, there’s no evidence of cancer. Every time I have a test, the first thing they are looking for, without me even saying anything, is cancer. I am therefore convinced it will come back. Maybe not right now but it will. No one can tell me it won’t.

Rob has been amazing too. Poor man had surgery himself last month. I came home from work, supposed to be looking after him. I fell asleep and woke up to the smell of dinner, ops! When I think I can’t love that man anymore, a new day arrives. I absolutely adore him. Cheesy I know but got to be said!

Ops maybe not leave it so long, I’m starting to realise why they used to call me ‘mumbles ‘ at my old work!