The last chemo

This was a weird old day. This had been the point I wanted to get to so badly but now that it was here, I didn’t know how to feel.

I got loads of encouraging messages from my friends and family but was also struck by how many of them thought that this marked the end of my illness and would now expect me to get on with getting back to normal. That was so far from reality. To begin with, I still had a whole set of side effects to deal with as well as 20 rounds of radiotherapy and at least one more surgery that I knew of. It felt pretty far from being over.

However, not to be all doom and gloom, I did feel it was a huge achievement and decided to acknowledge the day by making a little chemo graduation certificate and had all my amazing nurses sign it for me.

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So, off I trotted, full of steroids, ready to clean the planet, stay awake for 48 hours and chat the ears off anyone who’d listen to me.
The only thing notable was, by this point, I’d gained 20lbs. Holy F#@k! Obviously, it was entirely the fault of the steroids and nothing to do with all the cake eating and living in my bed I’d been doing!

I went through all the usual side effects, had major highs and some really crushing lows. I won’t bore you with all of my diary ramblings but it’s fair to say I sounded insane at that point. Poor Steph could not put a toe out of line without facing my literary wrath (or ‘crazy lady scribbles’ as I’ve renamed them)

Once I felt like the worst of the side effects were gone, my wonderful friends took me out for my chemo graduation party. They gave me gifts, balloons, flowers, a sash, champagne and cake (yeah, I ate a lot of cake…) It was a lovely gesture and I felt so lucky to have so much support around me.

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Chemo, unfortunately, is the gift that keeps on giving. I’ve developed peripheral neuropathy (nerve damage) in my hands and feet, joint pain, fatigue and muscle deterioration. My compromised immune system meant that any infections have been really tough to shake off. I was almost hospitalized after getting bit by a midge (little, flying, blood sucking, Scottish beastie)

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I’ve also had a load of collapsed veins,extreme bruising and nosebleeds all as a result of all of the treatment. Thanks for the memories chemo. It’s been…. interesting.

My advice to you if you’re coming to the end of chemo:
It’s really important to remember after treatment that your body has had an absolute battering and to look after yourself as well as you can. You still have to live your life but maybe give yourself a bit of a break too.

You’ve earned it!

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The Young Women Together

Throughout my treatment I’ve had lots of help from various organisations. First and foremost the YBCN (Younger breast cancer network) on Facebook has been amazing. There are now in the region of 1300 members and I have become one of the moderators for the Scottish subgroup.
They have various subgroups that you can join depending on your diagnosis, stage of life or interests.

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Through this page, I also met my chemo buddies and I don’t know how I would have gotten through some of the tougher parts of treatment without them.

To find out more, go to: https://m.facebook.com/profile.php?id=366958090056071

The other place I got loads of support was from Breast Cancer Care. They do a ‘younger women together’ forum which I attended just before my final chemo. It’s a weekend long residential held in Edinburgh (and other locations in the UK) and has talks, workshops, breakaway groups and more tea and biscuits than the human body can handle.
Luckily, Lindsay came too so we already had each other and it made me less frightened to go. We were at the same stage of treatment and decided to be brave and go wigless.
We were most definitely the baldest people there and had a good giggle about that.

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We had such a good time and got to meet loads of other young women who were going through the same experience as us. We discussed surgery and reconstruction options, menopause, relationships, nutrition and lots of other topics that we found really useful and helpful.
For the first time in months we got dressed up for dinner and even had a few drinks. It did us both the world of good and we left with big smiles on our faces the next day.

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For more information, go to: http://www.breastcancercare.org.uk/

The 2nd Tax

After the awful time I had with my first docitaxel, my oncologist decided to reduce my dose by 10% for this one. She said if I really can’t cope with it, I’d have to get moved on to a weekly regime of a similar drug called Taxol. I really didn’t fancy having to get a cannula in my absolutely rubbish veins every week so I quickly decided that wasn’t happening!

This time got off to a shaky start as the nurse was having a really tough time getting my cannula in. She got the senior nurse who had a couple of goes and then went and got the phlebotomist (the professional blood getter-outer) to have ‘one more try’. Luckily, after 2 more tries, she managed to find a working vein and I was good to go. I was really glad as, if she hadn’t managed, I would have needed another surgical procedure to insert a Portocath or a Hickman line (ports that drugs can be fed into and blood can be drawn from) and that would have delayed chemo again.

Also, before each chemo they weigh you so they can make up exactly the right amount of chemo and this time, I’d gained 5lbs. In 3 weeks! And 2 of those weeks I could barely eat! Raging. Apparently the steroids can do this. Before I was diagnosed, I assumed that chemo made people skinny. Well, that’s a big fat (pun intended) lie.
Cancer is a dick.

The pharmacist came in with an enormous bag of drugs for me to help with all the side effects from the last one with the hope that taking them earlier would make them less severe.

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The chemo itself was fine but it was an exhausting day after all the cannula nonsense. I went home and fell asleep before dinner time and didn’t wake up until the next morning.

Unfortunately, the side effects were just as crappy but this time I was armed with all the right drugs so I coped with it better. The pain in my back was insane and my muscles started to spasm so I immediately jumped to the conclusion that the cancer had spread. This thought goes through my mind at least once a day. I can’t have a headache or a sore big toe without worrying that it’s something sinister. I talked to my oncologist about my fears and she promised that, at the end of chemo, she’d send me for a bone scan to put my mind at rest. She must have dealt with a lot of freak-out prone patients in the past!

This time I had a few shiny new side effects including, losing my eyebrows and lashes, the inside of my nose peeling away and giving me more nosebleeds, and getting very sore fingernails. They felt loose and like they might fall off. Luckily that didn’t happen to me but it did to Lindsay. I wonder if my dark nail polish experiment worked?

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I was starting to feel pretty grumpy by this point and was fed up of people trying to be positive around me. If I heard “yay! Only one more to go” one more time, I might have lost it! I compared it to knowing you were about to get hit by a bus and didn’t feel like yay-ing that.

I was becoming a miserable patient but kept being told I was brave and inspirational and a load of other super positive terms so I felt like I couldn’t burst anyone’s bubble and say how I really felt. I must admit, if it was one of my friends going through this, I’d have behaved in exactly the same way because it’s in our nature to try to make things better.
My advice now would be: Give them a chance to vent, scream, moan and bitch. It’s really cathartic. There’s no getting around it, this is a shit situation to be in. Acknowledging that is more helpful than you realise. And cake. Take them some cake!

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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 2nd FEC(ing) chemo

Actually, this post isn’t really all about the 2nd chemo as it all went well. My veins were getting a little bit shy so I spent 5 minutes with my hand and forearm dipped in unbelievably hot wate to encourage them to come out and play. This makes getting the cannula in a bit easier. Steph came with me to this one and is when my cover photo was taken.

Like the first time, I felt a bit queasy but the medication they give you really helps. I seemed to escape any serious side effects for the first few days then they kick in: insomnia, sickness, sweats, stomach cramps, fatigue… Like having a hangover, the flu and the first day of your period (sorry guys, don’t run away screaming) all at once.

To add insult to injury, I had to go for a check up with my surgeon 6 days after chemo when I was feeling my worst. At my hospital, everyone sits in the same waiting room until they are called to go into their departments waiting room. I was very used to waiting by this point but feeling so ill, it was much tougher than usual. Luckily, one of the very nice nurses from the breast unit saw me (and presumably realised that I was moments from an embarrassing display) so she took me straight into one of the empty consultation rooms and let me lie down. Not a moment too soon!

The appointment was just a ‘how are you doing’ type of thing. A bit pointless really so I was soon on my way back to my bed to watch Harry Potter and get annoyed at people on Facebook who were ‘dying’ of a cold.

About 10 days later when all of the side effects had passed and I was feeling pretty good, I took myself off to the Maggie’s centre at the Western general hospital in Edinburgh to attend a ‘Look Good, Feel Better’ course. Firstly, I was really excited because this was the first time I’d been out alone, driven my own car and sang along to the radio in over 2 months. It reminded me that I could have my independence back and I felt genuinely happy.

The Look Good, Feel Better charity was set up with the aim of “improving patients self-image and appearance through free group and self-help skincare and make-up workshops that create a sense of support, confidence, and wellbeing”

For more information, go to http://www.lookgoodfeelbetter.co.uk

As with most of my cancer treatment, I felt a bit like the odd one out at the course. I was at least 25 years younger than anyone else there (including the people doing the course) but it was still nice to be doing something for myself so I went along with it. The sweet old lady sitting next to me was hard of hearing and had arthritis in her hands so I had to tell her, quite loudly, what was being said. I also had to take everything out of its packaging and hand them to her. It helped me feel a bit less awkward about being there so I was grateful to be her carer for the afternoon!

I left with an incredible goody bag and felt a lot more like my ‘normal’ self again.

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That weekend, Steph and I drove up to Dalmunzie Castle in Glenshee for a bit of rest (for him more than me!) and to celebrate our 6 year anniversary. It was perfect. We had a lovely meal and stayed in an amazing room with a 4 poster bed and turrets! We went out for a little walk too. It was sunny and frosty and I decided that this cancer treatment nonsense wasn’t all doom and gloom. It was times like these that kept us going.

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The Chemo Buddies

“Misery loves company”

Being diagnosed with breast cancer at 32 is extremely isolating. In the first week I must have heard “but you’re so young” about 100 times. Yes. Yes I know!
Most of the women in the waiting room of the breast unit or in the chemo suite were at least 60. They looked at me like I didn’t belong there and I didn’t feel like I did.
I took to the internet to find out if, as I suspected, I was the only person in the world to be diagnosed at my age. It turns out I wasn’t. Hooray! Well… Not hooray but you know what I mean.
I found a Facebook page called ‘The younger breast cancer network’ . It was specifically set up for people under the age of 45 who’d had a diagnosis. I immediately felt at home there. Girls my age who’d experienced first hand what I had was hugely comforting.
Within the group, there was a subgroup created for people who were starting chemo at the same time as me. We all bonded immediately over our shared experience and talked online every day. We discussed everything. EVERYTHING! Our conversation would range from dealing with side effects to the breakdown of relationships and everything and anything in between (including many hilarious tmi moments).
I can’t explain the love and gratitude I feel towards each and every one of them. We pulled each other through deep sadness, the anxiety of treatment, of waiting on test results and the fear of an uncertain future. At first it was camaraderie, then it became friendship.
I was really lucky that one of the members, Lindsay lived close by. We chatted on Facebook, talked on the phone and eventually met in person at the Younger Women Together forum which was held at the King’s Manor Hotel in Portobello. We became very close and knew everything about each other’s lives. It was fantastic to have such a close bond with someone who was going through everything I was.

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Eventually, as treatment progressed and we got to know each other more, the girls and I decided to set up our own group. We called ourselves ‘The Bionic Beauties’ (because most of us had replacement ‘parts’ by that time). In June 2014, Lindsay and I jumped on a train and made the journey to Solihull to meet the other members for a lovely, emotional, fun weekend.
Seeing everyone was wonderful. We all hugged and then got on with making all the inappropriate jokes we were used to from our Facebook page.
It was fantastic from start to finish, even when the hotels air con broke down and we, a group of menopausal cancer patients, hot flushed our way through the night! Lindsay and I shared a room and took turns coming up with genius ideas to cool the room down. None of them worked but made us giggle through the heatwave.
The next day we set off home after more hugs, a few tears and plans to do it all again soon.
My cancer sisters are hugely responsible for me making it this far and definitely for being able to hold on to my humour and determination.
I love them all.

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