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! 

Edit

Advertisements

The Panic

I’ve realised a lot of this blog has been dedicated to my rollercoaster style mental health issues.
Here’s another one (sorry).
The past few weeks have thrown another volcano of bad news, anxiety and fear at me and I have to tell you, I did not handle it well at all.
Firstly, I heard the sad news that a lady I liked very much, passed away from metastatic breast cancer. She was a bit of a hero of mine. She dealt with her primary diagnosis with such style, bravery and a resolute attitude that cancer would not get in the way of her doing things that made her happy.
When I was diagnosed, she offered me advice and support. She sent me little care packages that cheered me up and talked me through some of the parts of treatment and surgery I was most frightened of. I’ll be eternally grateful for the compassion and understanding she shared with me.

image

Alisa. She was brilliant.

Secondly, I had a couple of pretty awful appointments with the gynaecology/fertility team and I’m no further forward on the ‘will I ever be able to have a baby’ question. I did however, get a pretty stern talking to about my weight. The weight I gained during treatment and haven’t been able to lose because of the combination of tamoxifen, zoladex, gabapentin and antidepressants I’ve been taking since I was diagnosed (my love of cakes might have contributed a little too). I need to lose 2 stone before I can have my ovaries removed to reduce my risk of developing ovarian cancer. ‘Need to’. No suggestions as to how! My problem I guess. So now I’m not only nervous about the cancer side of things, I feel ashamed that I’ve allowed my weight to escalate to this level. Cue, lots of hiding in my room, having unexpected bouts of sobbing.

image

Looking happier than I felt.

I also got my letter confirming my pre op assessment and my mastectomy surgery. I don’t know why this got to me so much. I’ve known about it for a few weeks but reading it on that weird beige NHS paper just hurtled me 2 years into my past and the crippling fear of what I’m about to go through grabbed me and shook me by the shoulders.
After the epic screw up with my antidepressants, I’m still waiting for my body to catch up and get back onto an even-ish keel.
The grand finale of stress happened last Tuesday morning. I got up, got showered, dressed and set up for work. I hadn’t driven for more than a few minutes and I began to feel frightened, this was quickly followed by an inability to get a breath. My hands started shaking and I felt out of control. I pulled my car over and had a giant sob/wheeze attack. This was too much for me to style out at work so I turned the car around and went home. I saw my doctor again and he insisted I take a few weeks off to ‘regroup’. I’m not a fan of being off but had to admit, I needed it.
So, in summary, life has been hard. My wonderful, amazing fiance knows that I react to stress by needing a project and agreed to help me completely redecorate our bedroom. I want it to look really different than it did during my treatment. When I get out of hospital, I want a lovely, cosy place to recover. To get ready to move on. Be well. Get happy.
Fuck cancer!

image

Going to need entertainment!


image

A very cosy bed

The Cancerversary

OK, so backtracking again. Where were we? Oh yeah, so I’d just found out I was a mutant….

I’d also just had my 1st cancerversary (1 year since my diagnosis) and was finding my lack of normality a bit upsetting. Surely after a whole year, I’d be completely back to my old self and cancer would be a hazy memory (like most of my 2003)? Sadly, it turns out that this life changing event actually changed my life and it’d take more than buying a new diary to get over it.

I’m reading back through my diary to remind myself of what was going on during this time and what strikes me most is how desperately lost I felt. I’m also amazed by the lack of external support there was for me. I went to my doctor, looking for help and was simply referred to the Macmillan website. How utterly unhelpful! I was depressed, angry, anxious and afraid. The very last thing I needed was to be made to feel like a pest by a GP who couldn’t even feign interest in my shitty situation.

Luckily, I persevered and found help in the form of counselling and a moving forward course. I also got on top of my pain and anxiety with the right medication.

I also changed doctor.

Regardless of your situation, if you ask for help, you should not be shrugged off. Don’t let a crappy doctor make you feel insignificant.
If I’ve learned anything from this experience, it’s this:
You are responsible for your own well-being. Never be afraid to pursue it!

image

The depression

This is a bit of a tricky subject to talk about but in the interest of giving an accurate account of my cancer experience, I feel I should. So…. Let’s talk a bit about depression and anxiety.

image

I’ve dealt with depression and anxiety several times in my adult life. My first experience was after graduation. I had utterly invested myself in my last year of uni and ate, breathed and slept Clothing Design & Manufacture (BSc). Once I’d achieved my dream of getting a 1st Class honours degree, I expected to be thrilled. Well, I was, for about a week. Then the reality of being out of the institution of learning and having to find a job hit me like a tone of bricks. That was when I first experienced a panic attack and bouts of hopelessness, insomnia and anxiety. This lasted around a year or so and after some counselling and finding the right medication, I was set on the right track. I don’t mean to trivialise it, it wasn’t as easy as that but I’m just setting up the background of my previous brush with mental health issues.

Fast forward a few (ahem… maybe more than a few) years and I find myself at the end of active cancer treatment. I should be elated it’s over but instead, I’m right back in that familiar and wholly unwelcome void of panic, fear and overwhelming sadness.

I sometimes think cancer treatment was the easy part. It was very regimented and I always had one drama or another to keep myself occupied. I had one job: to get to the end of treatment.
Once I was there, I didn’t really know what was going to happen next.

I was surrounded by unbelievably positive people who were all fit to burst with excitement for me and all I wanted to do was hide under my duvet and cry.

There’s a lot of talk on the forums about how to move on but I just didn’t feel I could. I decided I needed to talk to my doctor.
He prescribed me with some antidepressants and booked me in for a ‘chat’ with a psychologist.
I’m still undecided in the whole counselling thing. Mine was a bit of a softly spoken, head tilter. I felt immediately awkward in her company and spent my entire first session looking at my hands and giving weird, disjointed, fear filled answers.
She asked me to list my main fears, that’s quite an extensive list but the main ones were:
1. Fear of cancer spreading and becoming incurable and leading to my dying.
2. Fear of recurrence and having to go through primary treatment again.
3. Fear that Steph will not be able to cope with how much I’ve changed and leave me.
4. Fear of never being able to have a family.
5. Fear of my Mum and Sister facing a cancer diagnosis.
6. Fear of any of my chemo buddies getting ill again.

How do you begin to deal with these fears when they the odds haven’t exactly worked in your favour to date?

Being ill has defined me for such a long time, I was genuinely frightened of joining the real world again.
I knew I’d have to find a job eventually, start going on nights out with my friends, do the weekly shop without my Mum taking me.
I was angry at myself for allowing these trivial things worry me but felt as though I was no longer capable of controlling my reactions.

So how am I doing now?
This is a question I’m asked a lot and one that’s usually met with a bit of a white lie as a reply. “Fine thanks” or “not too bad” are the go-to answers. Mostly because ‘how are you’ isn’t usually meant as a question with any depth. It’s meant as a social greeting and the polite thing to do is give a positive response.

The real answer to that question is long and involved. It requires a cup of tea and a piece of cake at the very least.

Its starts by explaining that, like everyone, I have good and bad days. It’s not all doom and gloom. I enjoy seeing my friends, going for walks, watching tv. Every day stuff!
I also have some unexplainably awful days. Sometimes it’s the grief I feel at what’s happened and how much I’ve lost. Other times, I’m overcome with anger. I’ve nicknamed this ‘the why me’s’. Seriously though, why me??!!. I had a good life, I’m well educated, I’m caring, I work hard and I never punch anyone, even when I really want to!

I suppose the idea of an existence based on karma isn’t how life works. It’d be nice though wouldn’t it?

My advice for anyone who has a depressed/anxious loved one:

1. Don’t expect them to ‘cheer up’. They are not just sad.

image

2. Ask them to talk to you and don’t try to make them see the bright side. Just allow them the chance to talk things through (or just do the hiccuping cry thing). If they don’t want to talk or cry, just be there with them. It does help.

image

3. Try not to be offended if they get angry or upset. Remember, this is a chemical imbalance and is sometimes impossible to control.

image

So, the moving on and getting better bit. That’s a tough one. I’ve continued to go to counselling, I also talk to people in the Maggie’s Centre, I keep taking my medication and every day, try to remind myself why I went through all of this. I have a lot to live for and people I love dearly.
I am trying to develop the patience and strength to adapt to this new way of life and not beat myself (or anyone else) up during the tough days.

I hope this hasn’t made any of you feel bad. I am an expert at being ‘Fine thanks’ and, until now, didn’t feel ready to speak out about the link between my physical and mental health. I’m glad I did.

Hey! I think I just moved on a tiny bit xxx