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 post op effects

On Thursday, I was ‘released’ from hospital. I’d been in for 4 days and by then I felt very anxious to get home. Like I would walk in the door and magically start to feel better… That didn’t happen. What did happen, was a big dose of the reality of what I’ve just gone through. In my last post, I mentioned ‘the operation’ but didn’t go into details of what that entailed.
I had a prophylactic (risk reducing) mastectomy with immediate reconstruction. The mastectomy was done horizontally through the middle of my breast. As my cancer was ductal in origin, it was decided that the surgery would remove my nipple completely (this can be reconstructed at a later date if I choose to) as this would be the highest risk area for a new primary tumour. Once all of the breast tissue was removed, an implant was placed in under the chest muscle and then stitched into place using a synthetic stratice. A drain was inserted under the wound which allows excess fluid, tissue and blood to be pulled away from the wound site by a small vacuum to decrease the chance of any post op complications.

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A diagram of how the implant and starting work

This is the same surgery I had on my ‘bad’ side just after diagnosis but unfortunately, the chemo meant my ability to heal was seriously compromised and, after several attempts to save it, my implant had to be removed. Couple this with the damage caused by radiotherapy and you’re left with one seriously knackered boob. The next option for me is to have this reconstructed using donor skin, tissue and blood vessels from another part of my body, most likely my back. This is the next conversation I’ll be having with my surgeon once he’s happy I’m healing from this operation. I might give us both a bit of a rest for a few weeks before I start hounding him to put another date in his diary though.
So, physically that is what I’ve been through. Mentally, it’s been even tougher. On the days running up to the operation, I suffered from a couple of extremely frightening panic attacks. The fear and uncertainty of more surgery as well as the flood of bad memories was consuming. I try to be a generally positive person but the truth is, this is an awful thing to go through. It’s extremely painful and limiting and, having been through it previously, no amount of being told “you’ll be fine” did anything to lessen that fear. Actually, it just kind of annoyed me. I understand it’s in our nature to try to make people feel better, but sometimes it’s more helpful to just acknowledge that it’s a shit situation and offer to listen. If in doubt, ask. I’ll never be offended by someone showing an interest. If that interest is followed up with cake: even better!
The recovery from this operation is likely to take several months. At the moment, I’m taking lots of painkillers and resting as much as possible. The physical trauma means that my body is working extra hard to mend itself so I’m very tired and sleeping lots. This is good because I’m not very good at doing nothing. I’ve already pushed myself a bit further than I really should and been told off for it by a few friends and by my infuriatingly always bloody right, mum.
Mum, I’m listening to you. If you need me, I’ll be on my couch, doing NOTHING. Well, maybe eating that cake I mentioned.

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A cake made by my lovely friend, Leigh

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.

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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.

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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!

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Going to need entertainment!


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A very cosy bed

The Mutants

During radiotherapy, I was asked to go and have a chat with the genetic counselling department at the Western General in Edinburgh. I had heard of other ladies going but expected they would tell me I wasn’t eligible for testing due to my limited family history of cancer. I had found out a few months earlier that my Mum’s cousin (on my Grandfather’s side) had been treated for breast cancer in her early 30’s but that was all I knew of.
However, due to my age, the severity of my diagnosis and her age at diagnosis, I was offered the test.

There are a few known genetic alterations that can seriously impact the risk of developing breast and ovarian cancer. The most well known, at the moment, are the BRCA1 and BRCA2 gene alterations. You’re probably thinking ‘is that what Angelina Jolie has?’  I’m assuming this because I’ve been asked this question at least 200 times. Yes it is. I’m glad she has used her BRCA1 diagnosis to raise awareness but it’s important to note that she hasn’t had cancer. She has the genetic mutation and has used this knowledge to allow her the opportunity to take preventative measures.

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I was called back in around 3 weeks later and told that I had tested positive for the BRCA2 gene alteration. I’ll be honest, it was another blow to find this out but I was almost relieved to find out my cancer had developed, not because of something I’d done wrong, but because of my dodgy, inherited genes.

As soon as I received the news, my Mum, Sister and Gran were all invited to be tested. My Gran tested negative but unfortunately Mum and Irana tested positive. Our family are really being pushed to their limits with this cancer crap!
It was a really tough time for us all. I felt guilty (despite knowing I couldn’t have done anything to change it). Not only was it directly affecting my life, it had now weasled it’s way into the lives of the people I love most.

Having the BRCA2 diagnosis has the following main implications:

1. Women who have the gene change have up to an 85% chance of developing breast cancer in their lifetime.

2. They also have up to a 30% chance of developing ovarian cancer.

The diagram below breaks down risk by age too.

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I think this really brings home the amplified risk having this gene change, particularly with regards to breast cancer.

Having this knowledge is frightening. It’s like knowing you’re probably going to get hit by a car but expected to continue crossing the road.
The bonus of knowing this, however, is that you are now in a position to take measures to reduce your risk.

Having a bilateral prophylactic mastectomy has been shown to reduce the risk of breast cancer by at least 95 percent in women who have the BRCA1/2 mutation

Having a bilateral prophylactic salpingo-oopherectomy has been shown to reduce the risk of ovarian cancer by approximately 90 percent and the risk of breast cancer by approximately 50 percent in women at very high risk of developing these diseases.

Not bad odds!

So, another mastectomy is in my immediate future, followed by a reconstruction of my ‘bad’ side. The oopherectomy isn’t offered to women under the age of 35 so I’ll need to wait another year for that. My mum and sister have already had their oopherectomy (and are both healing nicely)
Irana is having her double mastectomy with immediate reconstruction soon.

I personally think that the risk of developing cancer vs the risk reduction from surgery makes it a no brainer. I won’t lie, having the surgery is painful and the healing time is long, but this is a decision that could potentially extend my life to that of a ‘normal’ person. I want that. I want it for me, for Steph, for my family and friends.
If that means being a menopausal, hot flushing, scarred, silicon boobed crazy lady, that’s the price I’ll pay.

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The crazy lady ramblings

I mentioned in my last post that I’ve been reading the ups and downs I felt emotionally during my treatment and I feel I should share a little bit of that madness with you.

Please be aware, this is intended as a bit of fun. I appreciate every single bit of support I’ve been given and hope I don’t cause anyone any offence. There’s liberal use of some of my favourite swear words too.
You’ve been warned.

One barely legible page in my diary is headed

THINGS NOT TO SAY TO A CANCER PATIENT!!!!!!! (I obviously meant business)

I then go on to list a bunch of stuff with my angry lady, never to be said out loud, replies.
Oh God…

1. “Keep your chin up”
You keep your own chin up. You are the most negative, moany person I’ve ever met. I have cancer for fucksake. If I want to feel sorry for myself, I fucking will!

2. “You’ve got to stay strong”
What exactly does this mean?? Have I missed something vital about my treatment?? Should I be down the gym, pumping weights? Idiots.

3. “It’s all about staying positive”
Actually, it’s all about life saving surgery followed by 6 months of intensive, poisonous chemo, followed by radiotherapy and then more surgery. It seems weird that at no point, have any of the trained and experienced medical staff given me information on the importance of motherfucking positivity!
I DO understand that wallowing in self pity will not help but… I’m not! I never have! Offering me this nugget of useless information is patronising. You might as well remind me to pee, breathe or talk English.
If you can’t think of an original thing to say, say nothing.

Note from present day me: wow! I was raging here. And by the way, saying nothing isn’t preferable. I hugely appreciated that people would come to see me or call me and not know the right thing to say. There’s really no right thing. I appreciate the presence of everyone who was there whether they had amazing insights or just sat and watched Netflix with me.
If you really want to know what to say to someone with cancer, say this:

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Ok, back to the past me, who I suspect was missing several of her marbles by this point.

4. “You have to keep active”
3 months ago I had MAJOR surgery. Since then, I’ve had chemo. Both of these are extremely limiting. Despite this, I manage to shower, dress, do physio exercises, walk the dog, clean the house, shop, cook…. I’m doing pretty fucking fantastically in terms of activity. So again, thanks for the advice but why are you offering it to me? Do you not think I’m doing enough? What would you suggest? A marathon, going to the gym 5 times a week? Perhaps a nice zumba class where I can jump around and burst my stitches?
Answers on a postcard. I can use them to light my fire.

Eeek!! Aggressive. I’m frightened of chemo Deanna.
I actually did get some cool post cards and cards. I liked them. I read them loads of times when I needed a bit of cheering up.

On with the scribbles…

5. “You have to fight this!”
How?? With my fists or a gun?? Did I mention the IVF, sugery, chemo, radiotherapy & more surgery? Is that not fighting? Or should I take up fencing too?

6. “You’ll kick cancer’s ass”
Yes, me and my cancer cells. In a ring. Gloves on. Ding ding.
Moron.

7. “Have you tried eating more kale/broccoli/honey/your villages first born children?. I read about it in Chat/The Sun/written on the back of a public toilet door.”
If ANY of these things had any scientific merit, it would be a part of your treatment plan. I’m sure these things are actually pretty beneficial for overall health (with maybe the exception of eating babies) but they are not a miraculous cure. And don’t even get me started on so called superfoods. Twats! Do you believe everything you’re told or just the things that make you spend money on pointless crap?

I saw this and it made me laugh:

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I then went on to write a whole page about how hungry I was…. Weird.

I was the moron. Thank you a for not binning me as a friend. I owe you!
I found this and thought it was pretty apt given I’m a cancerian who had cancer.

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And, the last one, which still does my head in

8. “What caused your cancer?, is it because you ate processed food/because your weight has gone up and down/you didn’t pray enough/you once tucked your mobile phone into your bra strap/because you like mushrooms?”
I have cancer for the same reason as most people.

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I tested positive for the BRCA 2 gene alteration so my chances were alway massively increased but I refuse to be guilted into believing that I somehow ’caused ‘ it.

I personally believe people need to attach blame to cancer. It makes them feel removed from it and therefore, safer.

Do what you can to avoid it. Don’t cook yourself in the sun, don’t smoke, exercise, eat well, drink in moderation. Other than that, chill out. Enjoy life and maybe cross the road if you see me and I’m muttering to myself and scribbling in a journal!

The last chance saloon

Shortly after the festivities were over, the tree was put away and life (for most people) went back to normal, my wound opened up again. Aaaaaarrrrggghhhhhh!!! I was inconsolable with a lot of ‘why me?’ and ‘this is so unfair!’ being sobbed (not as brave as you though huh?). I went back to see the surgeon and knew by the look on his face what he was about to say. “We need to operate again. Soon”. I had started to feel like my body was separate to me, to be handed over and fixed like an old car that really should be scrapped. I listened as he explained this would be the last time they’d be able to try to save my reconstruction and if this didn’t work, it would have to be removed completely. That in itself isn’t such a big deal, its more that it leaves me with fewer (and far more invasive) options if I wanted to try for another reconstruction further down the road.
Before I knew it, I was back on the ward. I was on first name terms with most of the nurses, surgeons & anaesthetists by this point so they made it as pleasant as possible. I was in a pretty bad state emotionally and my chemo buddies, particularly Lindsay were the only ones I could really speak to about how I felt. My well meaning friends and family kept reminding me to ‘stay positive’, ‘keep fighting’, ‘stay strong’ and ‘beat this thing’. I didn’t feel like doing any of those things. I felt like switching myself off, not to be awoken until this nightmare was over.

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Lindsay and the girls would message me loads and let me vent and rage and say ridiculous things that I didn’t really mean without any judgment or upset. I thank God for those women. They saved me. A lot.

I woke up from surgery in agony and knew something was different but I couldn’t move enough to see. I had to wait for the surgeon to come and see me to find out what he’d done. He told me that the damage to the strattice (the mesh part that held my implant in place that attached to my chest muscle) was severely damaged and needed to be completely replaced and my implant had been substituted with an expander (a temporary implant with a metal port which could be filled with saline over a period of time.) This would eventually be replaced by a permanent implant if I healed well enough.
I felt disappointed that I would need further surgery and under tremendous pressure to heal well as he wouldn’t be able to keep trying if my body kept rejecting everything he tried.
I was able to go home that evening but the pain in my chest was insane. The next week was spent doing nothing but popping pain killers, eating high protein food to try and help the healing and having nightmares about what would happen next!

I was seriously behind schedule with chemo and really wanted to get started again so I could get it over with!

Stay with me here… Things are about to get better!

My next trip to see the surgeon was great. He was really pleased with how well I’d healed and gave me the OK to get on with my next chemo. Hooray! Well, hooray is a weird thing to say about having chemo but you know what I mean… My surgery limbo was over and it was time for my first Tax (docitaxel) chemo.

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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