Monday 16th November 2015

This week with the Paris Massacre I was reminded just how fragile life is.  Feel so sad for all the people affected.  And again I feel so lucky to just be dealing with having cancer.  There is always something worse!  With the plane bombing in Egypt a few weeks before I was so happy to have my sister home safely.  She must have been flying over France when it all happened. Just so awful.

But for me it’s been a busy week!

My blog has reached over 20,000 views! Amazing, thank you all. If my experience can help just one person then it’s all worth it! Keep sharing!

Many people ask how I am – because that’s what people do – it’s kind and thoughtful and I appreciate that. I am fine but, to be honest, I feel awful, pretty much most of the time – it’s like having a chronic illness! Yes, I’m back at work, yes I’m trying to do normal stuff, yes, I’m still smiling and it’s great that I ‘look’ better, but what would be the other option? Except for the new hair! It’s driving me mad – so curly that I can’t do anything with it now and I just want it to grow fast. If I had a blue rinse I’d look like the queen!

So the way I cope is to keep my mind in a good place and hope that will be enough to get my body through this! I am a firm believer in the ‘mind over matter’ thing and keeping busy helps my mind. I am also trying to eat healthy and exercise to help my body. Thank you to everyone helping me!

But at the moment I hurt all the time in varying degrees – usually worse at the end of the day or when I’m just resting or sitting around, but especially if I’ve had a busy day – the general painful aches are from the drugs to keep the cancer away. I have extra aches after each Herceptin which last about a week and a half. I have pain from the new boob – the numbness from the nerves repairing is slowly coming back which I think is making this worse – I still can’t relieve an itch though – such a weird sensation! It is uncomfortable and there is not one second of the day that I don’t feel like I have a heavy balloon literally stapled to my chest – with real staples! I am so glad I had a ‘B’ cup and nothing heavier!

Simple everyday tasks now hurt like putting a seatbelt on, driving, picking up anything of any weight, opening a jar, gardening, ironing, vacuuming, opening a door – anything that puts strain on my right arm and across my chest. I am getting much better at using my left arm now and everyone helps me -Phil drives a lot, the kids carry my shopping for me without asking now, I get doors opened for me lots and most of all I am getting better at asking for help! I still can’t use my left hand for the mouse on the computer though! so tricky.

Also thank you to Rayner for my quick swimming lesson in the jacuzzi – so funny! I have changed my swimming stroke so I don’t stretch my chest muscle too much and it’s loads better, plus I can swim super fast now! Swimming and walking is about all I can manage at the moment exercise wise, but it’s something and exercising releases good endorphins! That’s what I keep telling myself anyway. I hope to get back to yoga soon but the stretching has been too much lately.

Unfortunately to top it off I also have additional pain from the implant in my stomach to shut down my ovaries – this is like a bad period pain but for longer! So I think that’s mostly a whole body of pain isn’t it? Have I moaned enough yet???

…. and then on top of that I have all the menopausal symptoms super concentrated. Extreme tiredness but also being unable to sleep, drippy nose and sore eyes (Herceptin does this), feeling nauseous a lot – not sure what is causing this but this is mostly of an evening so ok. And that’s only mentioning all the physical stuff – don’t even get me onto the emotional and mental side of cancer. Wouldn’t wish this all on my worse enemy!

On the positive I am hopefully cancer free or getting there! This makes it all worth it but it’s still pretty grim. So I am coping, just getting on with it and trying not to moan and just dealing with my new way of life and how I feel for the foreseeable future – it will improve I am sure but I can’t see that far ahead yet. I just thought I’d try and explain what it’s really like so for those of you that want to know what I mean when I say ‘I’m fine thank you’ can understand a little.

And of course I have some super duper pain killers if I get desperate! Just can’t do anything else if I take them!!!

So, what have I been up to? I have had my 3rd muga scan – this is scan of my heart which is needed because a side effect of Herceptin is that it can damage the heart and it’s ability to pump blood effectively. I had my first muga before my treatment started to set a gauge for comparison and now every 3 months I have them to monitor my heart throughout my treatment. This scan takes a moving image of my heart beating using nuclear imaging. It’s pretty cool! The lovely staff showed me this time. I wasn’t allowed to take any pictures as I’m not really allowed to see – security and all that! We had fun changing the colours on the pictures too! As this scan uses Gamma rays they changed the colour to green like the Incredible hulk! Brightened my day!

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So for this scan I first have to have a cannula fitted in my good arm – this is quite an ordeal now in itself and this time was no exception as they hit a nerve – very painful – so it had to be removed and we found a nice vein in my hand! All good! This is used to inject a small amount of radioactive tracer into my bloodstream. I have to wait half an hour to give it time to spread around my body – I must glow in the dark pretty good at this point! Then I get wired up with lots of stickers that they attached cables to and get plugged in. Then I have a little rest on the scanner – it takes about 15/20 minutes and it’s quite relaxing really – I get a blanket! I have to try and stay calm so they get a good reading – no chatting as I get too excited!!! Ha ha! So the special gamma camera takes lots of pictures of my heart beating. The technicians are checking that my left ventricle is pumping the blood out properly – it looks a bit like fireworks coming out of my heart in the pictures. A percentage of the amount of blood pumped out of my left ventricle during each heartbeat is worked out – mine has to stay over 60% for me to be able to have my Herceptin – if it dropped then they would delay my treatment to give my heart time to heal and then I’d restart again – a normal reading for the average person is between 55%-65% so I am spot on!

image I have these stickers put on around my body and then wires attached and plugged in! I went swimming later that day and I still had one left that we’d forgotten to remove – a lady in the changing room pointed it out! Quite funny!

I’ve also had another Zoladex injection in my stomach which is shutting down my ovaries. Painful! Got to have these for at least a year as they won’t be able to remove my ovaries until I’ve finished the Herceptin, but could be for 3 years.

On Saturday my mum came to visit.  It was a rainy day so we just chilled and ate cake.  Sometimes you need a day just to eat cake and chat.  I love my mum – she is the one person who really really understands what I’ve been going through this year.  But I also really understand what she’s been through too with her own battle with breast cancer.  I think this has helped us both.  She is amazingly strong and I am sure I get my strength and determination from her! Thank you mum – you are an inspiration x

But the best thing I’ve done was on Sunday! We went as a family to the East Coast Tattoo Convention in Clacton for a couple of hours. We have been researching designs and tattooists for the decoration of my new boob. Not sure how we’re going to fund this venture yet but we’ll deal with that at the time – it’s something I feel I NEED to do.

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Got lots of info and saw lots of different styles. Hardly anyone had experience of mastectomy tattoos though – definitely a gap in the market here! But I’ve got a year or more to decide.

Found some beautiful butterflies on the taxidermy stand too.

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…. and Nathan got a burger so he was happy….

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So this week, bloods tomorrow for Herceptin number 8 on Wednesday. Next Monday we meet with Dr Chakravorty for a checkup. It’s quite nice to know that nothing more should be on the agenda until next summer. I just need to keep healthy and bubble along with the Herceptin and various scans and drugs. Simple I hope.

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