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

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The 1st Tax chemo

With my blood results OK’d and my nails polished in a dark shade (apparently it stops your nails from getting damaged from chemo), I was ready to go!

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I always had to have my little red book with me to record all things chemo.

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Docitaxel seems to be the one the chemo nurses are most worried about administering. This one was just one IV bag fed into a cannula. I had tried not to read too much into the side effects as I know every patient is different. When I went in I was told to take the chair nearest the nurses station ‘just in case’. I was also told repeatedly to shout out if I felt anything out of the ordinary. I was getting nervous.
As it was, it went fine. I had no reactions to it and felt completely fine afterwards. The pharmacist came to see me and told me she’d make up my medication bag as, this time, I’d need to take steroids 3 times a day for the first 3 days and I’d also need to give myself a gcsf injection to help boost my white blood cells. Steph had given me all of my IVF injections so this was his job again (I’m far too much of a wimp to do it to myself).

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The steroids made me feel MENTAL! I had loads of energy and couldn’t sleep a wink. My house was cleaned to within an inch of its life and my dog looked like he was going to pass out after a few days of drug fuelled walkies.

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This level of energy didn’t last long though and after about 4 days I was back in bed feeling dreadful. The side effects were completely different this time. There were so many, I’m going to write them in list form (You know I mean business when I list stuff!)
1. Pain: My back, hips, legs, feet & hands started to ache.
2. Dizziness: I became dizzy and faint really often, sometimes even when I was lying down.
3. Worse vision: even trying to read a magazine was difficult as my vision would become blurry and unfocused regularly.
4. Cognitive function: I’d forget what I was talking about or lose words as I was about to say them. My brain felt scrambled and unorganised. I felt like I was losing ‘me’.
5. Nosebleeds: my nose would bleed from time to time but it was constantly blocked with dry blood.
6. Lack of taste: food started to taste either horrible or of nothing.
7. Toothache: all of my teeth ached and I was constantly worried they’d fall out.

Pretty grim yes? It got worse…

About a week after chemo, I called my GP to try to get a home visit. I could barely walk and all of my side effects had gotten to the point that I couldn’t manage them. Unfortunately, as I was still registered at a medical practice where we used to live, (about 3 miles away from our new house) they refused to do a house call and told me I’d have to make my way along to the practice.
Well, that was an interesting experience. Steph had to help me get dressed, put my shoes on and hold me as I, very slowly, made my way downstairs and into the car. When we arrived at the practice, he helped me into the waiting room and I lay down across the chairs. Thankfully there was no one else in there or that could have been a bit embarrassing.
The doctor walked in and saw me there and looked a bit frightened (serves him right for not coming to my house!). He, along with Steph, helped me up and got me into his office where I was deposited on the bed. He took blood and prescribed me with some codeine and amitriptyline to treat my pain and fluconozale and difflam to treat my oral thrush (I know, it sounds yuk. It was!)
With that, we headed home and I was so relieved to get back into bed.

Later that afternoon I had a call from the doctor telling me my blood results were worrying. My neutrophil levels were down at 0.4 (normal, healthy level is between 3 – 6. Anything under 2 is low. Anything under 0.5 is considered at serious risk) and he wanted to admit me to the chemo infection ward. I did the grown up thing and burst into tears and told him I hated that place! My temperature was hovering around the 37 degree mark so after a call to my oncologist, he agreed that I could stay at home unless it went over 37.5. He made me promise I’d go straight in if that happened. Well, it did, and I didn’t. I know, I know…. Pretty stupid but the thought of spending another moment in that ward was too much for me to cope with.
Luckily, my temperature had come down to 37 again by the next morning and the medication I’d been given was all starting to give me a little relief. By the following week I was over the worst of the side effects and I braved going outside for a (very short) walk.
In the next few days, I was up to going out for lunch and got to catch up with my friends.
Speaking of friends, I should mention how amazing mine are.  I constantly received flowers and chocolates in the mail, got picked up and taken out whenever I was up to it and always had company when I wasn’t stuck in bed. They kept me occupied, entertained and allowed me to rant.

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My advice to you, if you are the friend of someone going through cancer treatment is to stay in contact. Don’t stay away because you’re worried about what to say. Say what you’d normally say. They are still the same person. Maybe think of ways to cheer them up, even if that means lying on the sofa with them telling them all the gossip they’ve missed or picking them up their favourite snack. One of my friends would message me with photos of us from our childhood and teenage years and that always made me laugh. Others brought me books & dvds. Just spending time with them was massively appreciated. It doesn’t take much, just let them know that you are thinking of them. Sadly, a few of my friends went AWOL and at a time when I needed them the most, I’ll always feel sad about that.
Luckily, the vast majority of my friends were fantastic and I now feel closer to them than ever.

Love you guys!! Xx

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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

The Chemo (dun dun duuun)

2 years ago if someone said chemotherapy to me, I’d immediately be struck by an image of a dangerously underweight person, hooked up to terrifying machinery. Their frightened face, grey and drawn, in a tiny, dimly lit room with bare walls. People would talk in whispers as a mark of respect to the poor, near death patients.
Luckily, I can tell you that image could not be further from the truth. Phew! *wipes brow*
A few days before chemo, I had blood taken to make sure I was able to have it. I called the unit the day before, answered a load of questions and was told I was ready. I didn’t feel it.
I felt sick in anticipation as my Mum and I made our way to the hospital. The walk from the car park into the chemo ‘suite’ felt like an arctic expedition. My legs were heavy and my scaredy cat brain was telling me to run away as fast as those lead legs would carry me! I stood outside the door, took a deep breath and walked inside.
There were 3 or 4 cheery faced nurses and they all looked thrilled to see me. I meekly walked towards them and unexpectedly, out of my mouth, came the words “Hi, I’m here for my 2:00pm manicure?”. There was a moment of nothing….
Then a burst of laughter *another brow wipe*
One of the nurses took my hand and told me I’d fit in just fine here. She led me to a comfy recliner armchair and told me to get settled and she’d “bring me a wee drink”.
I looked around the room and was amazed at how light, bright and welcoming the room felt. Some patients were alone but happily read books, watched tv or napped. Others had family or friends with them and they chatted and laughed amongst themselves.
Laughing? During chemo? Mental…
I was given my drink and a little cocktail of drugs to help with the upcoming side effects and to help me keep calm during the first cycle. I wish they could have given some to Mum, she looked like she could use it.
I went into a smaller room and had my height, weight, temperature and blood pressure taken. Once that was done it was time to put the cannula in my hand where the chemo drugs would be administered. I think my scaredy brain must have had a word with my veins as there wasn’t one in sight. The next ten minutes were spent trying to coax one of the little guys out (this includes fist pumping like a crazy lady and putting my hand and arm in toasting hot water) After several attempts, the cannula was in, I was hooked up to a portable drip and I walked back through with my new drip pal trundling along beside me.
The chemo I had is called FEC
FEC is a combination of three drugs. It takes its name from the initials of these drugs:

5 fluorouracil (also known as 5FU)
epirubicin
cyclophosphamide.

Before the chemo started, they attach a saline drip to flush through your veins. This was the first time my brave facade dropped. I suddenly became hot, light headed and needed to be sick. Nice one Deanna, I hadn’t even started the chemo yet and I was a mess!
The fantastic nurse knew exactly how to calm me down. She tilted my chair back, told me to take deep breaths and she chatted away about nothing in particular. I calmed down and was ready to get going.

Another nurse appeared with a tray of ENORMOUS syringes and explained that they’d be manually injected direct into my cannula. This was done really slowly to make sure there were no adverse side effects. One of the drugs was bright red and the nurses warned me not to freak out when I went for a pee as it would also be bright red. I quickly got used to the procedure and began to relax. We even got a wee sandwich and a cup of tea. It wasn’t anywhere near as terrifying as I’d thought.
Before I could go home, I was given a giant bag of anti sickness drugs and a double sided A4 list of potential side effects and numbers to call in an emergency.
We said our goodbyes and off we went.
First chemo: done!

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My gorgeous shoes from Denise as a ‘well done for not running away’ gift.