The LD flap flop

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. 

My Grandparents. Weren’t they a gorgeous couple?!

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. 

The least ‘graphic’ image I could find of an expander

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

In hospital feeling nervous but excited to close this chapter of my life

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. 

Flushed and feeling rotten but I need a photo for my blog! 

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! 

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The bump in the road

I had my final FEC chemo at the end of November. I remember feeling unwell much quicker than usual with this one. My neutrophil levels had been much lower than usual at my pre chemo bloods so I expected this one to be tougher.
I had a few visitors in the next few days which cheered me up but I was feeling more tired than ever and small tasks were becoming extremely difficult.
The wound from my mastectomy had never healed very well but at each check up my surgeon didn’t seem particularly worried so I wasn’t.
Well, I wasn’t until I woke up one morning and I realised my top was soaked. I got to the bathroom to assess the situation and I saw that a large section of the wound had opened and A LOT of hot fluid was coming out. I woke Steph up shouting “I’m leaking!!” at him. Poor guy, he’s heard a lot of things from me that he probably didn’t ever think he would (including the all too often asked question “have you seen my boob lying around?”)
So, we made our way to the hospital where several nurses looked at me and my awful wound in horror. I think I saw everyone who was working there that night and it was agreed that I really needed to see my surgeon. They cleaned me up and sent me off to wait on him getting in touch. I was given a course of antibiotics but around 4 days into the course I began to feel really sick and faint. I changed my dressing and realised it looked much worse. It was definitely infected and looked pretty worrying. I phoned the chemo emergency number and was told to make my way to ward 34 at the Vic in Kirkcaldy. By the time I arrived, I was finding it difficult to stand and even speaking was becoming exhausting.
I had bloods and swabs taken and, as my temperature was above 39 degrees, I was admitted and told I needed iv antibiotics straight away. Stephen left for the night and my cannula nightmare began.
First of all, they sent a 12 year old (I guessed) doctor in to insert the cannula. I told her my veins were becoming difficult but she assured me it’d be fine. As she was putting it in, I heard her say “oops”. Probably the last thing you want to hear during any procedure. She then decided it was OK, set up the iv and left the room. Within moments, I knew what her “oops” was about. I could see my arm starting to swell as the fluid from the iv began to filter into my tissue rather than the vein it was intended for. I pressed the call button and a nurse had to quickly get the cannula out and manually push the fluid back out. It took another 3 or 4 attempts to cannulate me and by this point, I was so upset they decided to give me a sedative so I’d get some sleep.

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One of many!

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My crazy fluid hand after a failed cannula attempt

The ward I was on was specifically for cancer patients and it was frightening. Sometimes I could hear screaming and crying. Mostly, I heard nothing. I was in isolation because of my infection (known as neutropenic sepsis) so I rarely saw anyone. The nurses would come in to change my iv every few hours and now and then I would see a doctor. Any time I saw them walking in with the YELLOW TRAY OF DOOM I knew that meant they’d be trying, unsuccessfully, to find another vein and I’d immediately burst into tears and beg them not to. Begging doesn’t get you far in there!

I was unable to eat, had no inclination to drink, people talked in whispers around me and for the first time since I was diagnosed, I thought I might die.
My mum and my sister had flu that week and were not allowed to visit me. I talked to them on the phone but found it really upsetting that I couldn’t just get a cuddle from them. Steph came in as often as he could and was even allowed to take me to the Queen Margaret hospital to see my surgeon rather than sending me in an ambulance. Those few hours of being out of that room were wonderful. I was so thankful for them.
On my second visit to see my surgeon, he looked worried. He told me my reconstruction had been rejected and the tissue was dying around it. He explained that I needed surgery to remove it soon or I wouldn’t get better.
So, a few days (and many more antibiotics) later, I was being prepped for my 2nd operation.

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Getting ready for my 2nd op

This photo sums it all up pretty well. It’s hard to look back on this now because I can easily remember feeling like I might not make it. I kept a positive facade but I made sure I said ‘I Love You’ to everyone before I went under. Just in case.

When I woke up, I felt so relieved. I was told everything had gone well, the infection had been cleared out and I had a shiny new implant to take home just in time for Christmas!

With thoughts of surgery, chemo and infection behind me, Stephen came to take me home. It was wonderful.

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Being home for Christmas: the best present ever!

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Christmas with my family