I had my latest CT scans done 2 weeks ago. Today I got the results. 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
Hello everyone! I’m so sorry about my lack of communication since my operation which was, unbelievably, 10 weeks ago! So, let’s back up to the surgery and we’ll work our way forward to where we’re at now. I had the … Continue reading
First of all, I’d like to thank everyone who took the time to comment on my last blog post. I had a few days to think through all of my options, measure out the pros and cons, allowing me to reach a decision that I felt, all round, the most comfortable with.
Then I got a call from my surgeon saying we had to go with the other option. *sigh*
After my meeting on Monday, he went off to consult with his (wee surgeon pal) colleagues. While they were reviewing my scans, they discovered I have a hairline fracture in my right hip. That puts to bed any thoughts of delaying surgery until after the wedding. In fact, it puts me on the orthopaedic trauma list, and means I’ll be getting the operation tomorrow.
I’m currently packing my ‘oh fuck!’ bag and waiting on a call telling me where I’m going.
So, I expect this is going to be pretty shit. I expect I’m going to need a fair bit of help when I get home. I also expect we’ll deal with it, the way we do everything that’s thrown at us. With chocolate. I mean, together!
See you on the other side xx
Today was the day, 2 months after my secondary breast cancer diagnosis, that I was meant to have all the answers. I thought I’d go in, sit down and be told “right, this is the action plan….” and I’d walk out the door feeling relieved.
When is life ever like that? Never.
What actually happened was that I went in and told that my story is a complicated one (no shit!).
I have cancer in the base of my spine, my hip and femur. The femur is the part that physically could use getting looked at first. The particular area where there’s most ‘activity’ is at the top of the bone, before the knobbly bit (excuse my complex medical jargon) and is the most likely part to fracture or break. The idea would be to drill through the top of the bone, insert a metal rod and put a few screws in down the length of my thigh. Nice right? Doesn’t sound utterly terrifying at all!
Looks a bit like this
Now, the complicated bit. From most of the tests I’ve had, it would seem most of my pain is actually coming from the area in my back. So, if I had this surgery first, I’d have post surgery pain (a lot of it) as well as my existing level of pain. There are other negatives too. Surgery comes with all kinds of risks, namely infection and blood clots. Add into the mix that we are getting married in August after a long haul flight and that risk is even higher.
With so many problems, maybe it’s time to look at option 2? That is, blast the area in my back with radiotherapy and try to address the pain in that area first. Once that’s done, we head off, get married and once I’m home, I have the surgery and radiotherapy in my leg.
Seems like a fairly straightforward decision? Well, except for the fact that if I don’t get this surgery, I’m very likely going to break that bone. It could be as simple as banging it against a table or falling over my dog (he LOVES getting in the way). I can’t even begin to imagine the pain involved with breaking my femur. It makes me feel pretty sick thinking about it.
The decision isn’t so easy now…
It may have crossed your mind while reading this that the wedding shouldn’t be given as high a priority as my health. At this point though, the wedding is of higher priority to me. I have loved Steph for almost ten years and planned on getting married for over two. This illness is not going away and is not getting better. I would rather lose my entire leg than be denied the opportunity to marry him. This wedding is happening! It’s what we both have to get us through the difficulties that have been and are still in the pipeline. I want whatever happens next to happen as his wife and with him my husband.
So, the next step forward is for the surgeon to go off and consult with his wee surgeon friends and my oncologist and get them to take votes/draw straws on what they think they should do.
I should find out in a day or two. Any opinions are welcome. Maybe we should do a tally and send it to the surgeon to enable his decision making process.
Every one for option 1, raise your hands?
Two years ago, I finished active cancer treatment. I was bald, battered and burned but I was thrilled. I was NED (no evidence of disease) which is as close to being ‘cured’ as it gets. I was still suffering all of the after effects of cancer treatment but things were looking up. I had an exciting future to look forward to.
Today, I’m lying in bed, trying to stay perfectly still. Any small movement causes a searing pain. It’s as if my leg is being twisted off.
I am feeling thoroughly sorry for myself.
From the meeting I had with my oncologist on Tuesday, I’ve learned that the cancer is in the base of my spine, the top of my right leg as well as my hip. This means I’ll need surgery. Something to strengthen my bones enough to be able to start treatment. This means more waiting. We all know how I feel about that…
The next stage will be seeing an orthopaedic surgeon and getting a date for the operation. After that, I’ll need to recover enough to start radiotherapy and the bone strengthening infusions.
I’m the meantime, I have to deal with the pain and the knowledge that the cancer is continuing to grow, unchecked and untreated. I’ve been reassured that the waiting time won’t have any major impact on the damage the cancer is doing to my body. Weirdly, that doesn’t make me feel much better.
The absolute fucker of this whole situation is the complete lack of control. I can’t write lists or fill in dates in my diary. I can’t prepare for what’s about to happen in any way and that is just plain old terrifying. I like to be in control in a crisis.
That’s enough of my moaning for one blog post.
Here’s a few nice things that have happened over the past month or so…
1. Holiday to Gran Canaria. If you’re going to be in pain, it might as well be in the sunshine!
2. Long weekend away to celebrate My mum and Step Dad’s 60th birthdays.
3. My amazing friend Kath wrote a book. An actual, published, buy a copy, book. We went to the launch party. I got her autograph! If you, or anyone you know, suffers from Crohn’s disease, you must buy a copy (or 2) right now! Go to: http://https://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165
So, good things are still happening in amongst all the shit. As well as this, I’m still seeing friends, going out for nice food (not great for my diet but I’ll get back on track with that later) and planning the wedding. These are the parts of life that make the pain worthwhile. And they really are.