I can’t believe my last post was so long ago. Sorry! Well, I’ll get the rubbish news out the way first. The lesion on my liver is definitely cancer. Fuck. The multidisciplinary team meeting agreed that this was the case … Continue reading
I’d like to dedicate this post to my Gran, who passed away in December. I have a lifetime of beautiful memories with her and I consider myself extremely lucky to come from a line of strong, intelligent and generous women. We all share many traits and, apart from the forgetfulness, I’m thankful for them all. I hope she is at peace and reunited with my Grandad.
If you’ve been following my progress from the beginning, you may remember that I’ve had terrible luck trying to have my left breast (the original offender) reconstructed. I lost my first couple of implants during chemo due to infection. They then tried to use an expander implant. This is designed to be filled slowly with saline which keeps the skin stretched and prepares it for an implant to eventually be inserted.
Unfortunately this didn’t work out for me as I’d had so much infected skin cut away during previous surgery coupled with radiotherapy damage (a build up of scar tissue and loss of ‘elasticity’). This left very few options for me, all of which were invasive and painful and I needed time to recover. I was given a soft prosthesis (think boob shaped cushion and you’re not too far off the mark) to wear until I was well enough to try one of them. I don’t think anyone would ever have imagined just how long that would take.
In April of last year I found out that my breast cancer had spread into my spine, right hip and leg. This put my reconstruction plans on the back burner as I need to start treatment and have surgery to put a gamma nail in my femur to prevent further damage. I struggled to do simple things like; get in and out of a car, my bed and the bath, walking up and down stairs and kneeling/crouching. I had to have extra bannisters, grab rails and other additions fitted to help me around around the house. I needed to ‘learn’ how to walk again and depended on crutches even to walk a few feet. Life was (and sometimes still is) very hard. The worst part of it all was the pain. I had to work with the pain management, palliative care and physiotherapy teams for months to help me get it under control. I’m now taking 600mg of oxycontin a day combined with a cocktail of gabapentin, diclofenac and, paracetamol and monthly bone strengthening injections. There are times when even this doesn’t help and I need a 60mg ‘breakthrough’ of fast acting oxycodone. This has been my saviour and is the only way I have of living anything resembling a normal life.
That was all I wanted. Normality. I’d been using the prosthesis for over two years and I despised it. It was uncomfortable, it didn’t look or feel natural and it reminded me every day of everything I’d come through. I was prepared to go through whatever it took for one more shot at having a reconstruction operation. I knew there was going to be pain but, I knew I could cope with pain. I actually can’t really remember what it’s like living without it.
So, on December 5th, I went into hospital and had a Lattisimus Dorsi (LD) flap reconstruction. You can read more about it here: http://www.macmillan.org.uk/information-and-support/treating/surgery/types-of-breast-reconstruction/using-tissue-from-your-back.html
For the first few weeks everything seemed to go really well. My pain was really well managed, I was able to get up and around without too many problems. The swelling was beginning to go down and I could see what the finished result was going to look like and I was thrilled. Around the 20th of December I started to feel a bit under the weather. This gradually progressed over the next week but I just assumed it was a sickness bug as there were no external signs of infection. However, a few days later, I noticed my surgical wound started to get a bit red. By the 29th, it had become hot and sore and I felt terrible. I called my lovely district nurse who rushed along to see me. I knew by the look on her face I should be worried. A few phone calls later and I was packing my ‘Oh Shit’ bag and I was on my way to the Western General in Edinburgh (my local hospital ward was closing down for the new year holiday).
I was admitted and given a side room on the cancer ward. It was apparent that this infection was very bad and I needed immediate treatment. Between my back and my new reconstruction, they removed almost 400mls of infected fluid then set me up with course after course of IV antibiotics and fluids. By early evening on the 31st the surgeon visited me and broke the dreadful news that the antibiotics hadn’t worked and I was first on the next morning’s list for emergency surgery.
New year’s eve is my husband’s birthday and it was devastating not being able to spend the evening with him. I made him promise me that he would go out and have fun but he didn’t want to go anywhere without me. We compromised by getting a few people (including one our best friends, my mum and step dad) to go to our house and have some drinks, play some games and basically try to take their minds off of what was going on. It’s times like this that remind how difficult all of this is for them.
I was so ill going in for this operation, I didn’t have much time to worry about it. That happened after I woke up. There were some complications removing the intubation tubes from my throat. This made my stats drop very suddenly and I had to spend the next 24 hours in the high dependency unit, in a tangle of monitors, wires and cannulas that wouldn’t let me move. I was in a ward with 2 other people who were seriously ill. The woman next to me didn’t wake up during my entire stay. I was only reassured that she was still alive by the sounds of her occasional laboured breathing and the constant beeping of her monitor which was out of sync with my own. The woman across from me threw up more than I knew was physically possible! I was frightened for us all and tried to cry as quietly as I could in a bid to be left alone long enough to try to fall asleep. All of my belongings were in my room on the cancer ward so I had nothing to keep my mind off the situation I was in. I felt like I’d gone through so much for absolutely nothing. I was so angry at myself. I’d chosen to go through the previous surgery therefore I must have been to blame for the outcome. It’s still taking me a while to try to stop thinking that way.
I was allowed to go home on January 4th and felt such a mixture of emotions. On one hand, I was delighted to be back to my husband and close to my family. On the other, I was so sad to have missed out on all the festivities and I just couldn’t move past the trauma of what had just happened to me.
Now, more than 2 weeks have passed. I feel a lot better physically and I’ve had a new (much more realistic and comfortable) prosthesis fitted. Steph and I have made a new year’s resolution to do at least one nice thing every month. Hopefully that will help with the psychological aspect.
I’ve also resolved to update my blog a lot more and to include you in the fun parts of my life, of which I intend there to be many!
Thanks for making it through this blog, it’s been a hard one to write, I hope it’s been worth it to read. I’ll leave you all with my very belated wishes for a very happy, healthy New Year.
Fill it with nice things!
Hooray! We got married! This post is dedicated to the love of my life, my best friend, my husband, Steph. Steph and I have never really liked the idea of a traditional church and hotel reception style of wedding. Mostly … Continue reading
I’ve been dabbling with the intro to a new blog for weeks now and not getting very far at all.
Mostly it’s because I didn’t have anything I particularly wanted to say.
I’ve been feeling very up and down both health wise and emotionally. I’m taking steps to kick start those new year’s resolutions, namely losing some weight, getting stronger and trying to address some of the after effects that cancer so kindly bestowed upon me.
The reason I have chosen to pick up my pad and pen (Ok, my phone) and write a little is that it is World Cancer Day today and as I see it I have two options:
1. Hide under my duvet, stay away from social media, watch and read nothing which mentions ‘the C word’ (which is almost fricking impossible by the way!)
2. Face it head on. Acknowledge that life has been pretty rubbish since cancer came-a-knocking and, raise a little awareness and/or cash for Cancer Research in the process.
No.2 it is then.
I still live in a world where cancer surrounds me every day. This can mean a lot of things, for example, I can hear about a lady who was diagnosed in her 30’s and, 40 years later, is still here to tell the tale.
On the other hand, it can be hearing from a friend that her primary breast cancer has spread into her bones, liver and lungs and she is now termed ‘incurable’.
The word rollercoaster is often used to describe this type of experience. I see it more like being bipolar. The exhilaration of good news, positive test results, happy smiles from oncologists and surgeons are indescribably wonderful. The world seems better and a bit of the old you is released. However, this feeling of glee can be cut down in an instant. It can be bad news, unclear results, a series of headaches or joint pains that have you convinced the cancer has made it’s new home in other parts of your body and that your life must be on a downward spiral. The isolation, anger and fear can leap at you from nowhere and within minutes, turn you into a tearful, panicking mess.
When I have conversations with people about their understanding of cancer (I’m talking about breast cancer here as that is my specialist subject), I find myself coming back to two stark realisations:
1. People seem very breast aware. I’m not sure how much more ‘awareness’ we need? Check your breasts regularly. If you feel something that is unusual for you, get it checked out!!
We’re off to a great start. Keep it up. *claps hands*
2. People are very unaware of secondary cancer. Once cells from your original cancer find a way into your lymphatic system or blood stream they will then cling onto other areas of your body, commonly your bones, liver, lungs and brain. Once detected, these tumours can be treated but never cured.
Much more money goes into awareness raising than into researching treatments for secondaries. This has to change! If we could find a way to prevent or successfully treat metastatic cancer, it would change cancer from a deadly disease to a chronic illness.
So, my plea on this day is to reach out to someone you know who’s been affected by cancer. Do not tilt your head in sympathy. Do not try to make them see the bright side. Instead, be real. Acknowledge the situation and listen. A simple, honest act of kindness and empathy will go further than you realise!
Also, if you can, donate to a cause which is looking for new treatments and a cure.
I’ll be donating here: http://www.cancerresearchuk.org/support-us/donate/world-cancer-day
If you’re out and about and want to make a quick donation of £3, text WECAN to 70200
Let’s make secondary cancer a thing of the past!
My experience with cancer is far from over. I still have several operations in my future and at least another 8 years of hormone therapy to go. I’ve come this far though. Might as well keep going!
Thanks to everyone who has supported me, reads my blogs and puts up with my regular rants. I love you all! Xx