Posts Tagged ‘Breast Cancer’

CAP or CRAP

Posted: August 15, 2014 in Round Three
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In breast cancer world you have to get used to a whole new language. People talk in medical jargon and abbreviations. I’m still catching up. The drug I’m on now is called ‘CAPECITABINE’ or XELODA. Breast cancer ladies call it ‘CAP’. Because of the effect it has had on me for the last two weeks I’m going to refer to it in this post as ‘CRAP’. There is a happy ending to this post so please keep on reading.

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Yes I’ve used this one before but it’s so apt. Thanks Mr Shrigley!

I’ve just completed my first cycle of CRAP. I’m on a 3 week cycle of this drug which means I take the pills every day for 14 days, followed by a recovery week.

When my consultant started me on this drug 3 weeks ago he said I should tolerate it quite well. They always understate the side-effects when they start you on a new drug. I understand why they do this because the placebo effect can happen. If they tell you that you’re going to feel really sick then the chances are you will, however nothing could prepare me for the severity of side-effects that this drug provoked.

The nausea, diarrhoea and fatigue that started earlier last week got progressively worse. This was combined with excruciating stomach cramps and blistered feet. I spent most of last weekend hunched over the toilet. It wasn’t pleasant. I couldn’t eat without my stomach going into spasm and I lost around 4kg in weight.

I felt so unwell on Friday that I ended up calling the hospital hotline, but was was redirected to my GP. If you’re not exhibiting signs of a neutropenic infection (i.e. a temperature), you’re not considered ill enough to be admitted to hospital. Apart from the tummy troubles, I was tachycardic (my heart was racing) and my blood pressure was very low. My GP, who could see how poorly I was, called the hospital herself to confirm she could send me home. Capecitabine can affect the way your heart works, so I was frightened that something was seriously wrong.

I was reluctantly sent home and mum came down from Scotland to look after me. You’re never to old to need your mum, even at my age. Mum tried to encourage me to eat but the only thing I could stomach was lemonade. I didn’t eat a proper meal until Wednesday.

It’s now Thursday and this is the first day I’ve felt normal in over a week. I’ve got my appetite back. I managed a walk and I was quite excited about the fact that I didn’t have a bowel movement for over 24 hours. It’s the little things that matter.

Today I saw my consultant. He’s lowered the dose to make the side-effects more tolerable and given me an extra week off to recover.

The good news is that it was all worth it. Not only have my tumour markers come down but the lump under my arm has shrunk!!! My consultant said that with this drug, the side-effects are an indicator that the drug is working, so all that time on the toilet was worth it.

I’ve had a really shitty two weeks but I’m happy that things are finally going my way. I’m one step closer to remission.

I wanted to finish the year on a high and although I don’t feel like champagne & fireworks just yet, I might have a wee sigh to mark the end of my 2012.

Cancer can get to f**k

Last week I received the pathology report from my operation and it was mostly good news.

The cancer was an aggressive Grade 3 and although my 60mm tumour hadn’t shrunk, they assured me many of the cancer cells had died. It was an inside job, the FEC feckin worked.

Even better news is that they have removed all of the remaining cancer and I have clear margins, probably the best Xmas present I’ll ever have. If cancer is the Death Star, the margins are the energy shields of healthy tissue around the tumour and mine were fully activated. Although the margins were only 3mm in places, the consultant reminded me that cancer cells can’t jump, further verification that the cancer hasn’t spread. The Force is still strong.

The Grade 3 worried me however I’ve since learned that Stages and Grades are completely different. The Stage describes the size and spread of the cancer, whilst the Grading refers to the speed at which the cancer cells are growing. The Grade can only be determined once the tumour is removed. My diagnosis, back in June, of Stage 2B Breast Cancer, meant that the tumour was large, but hadn’t spread. The aggressive Grade 3, means that it had the potential to make its way towards my lymphatic and vascular systems although thankfully it hadn’t. I’m not completely convinced, but perhaps it’s time I start believing the results.

I used to eat, sleep and breathe cancer, but since the operation I no longer think about cancer all the time. Now the cancer has gone and it’s been replaced with new worries. Will it come back and how can I be sure that every last cancer cell has been removed?

These concerns will be answered in the New Year when I have the double whammy of radiotherapy and Tamoxifen to look forward to. It’s a belt and braces approach. What hasn’t been nuked by chemotherapy and surgery will most certainly be annihilated by radiotherapy. Radiotherapy is final reassurance that the cancer is gone and Tamoxifen will ensure the bitch don’t come back. As my mate Jenny succinctly put it “Cancer can get to f**k!!”

My annus horribilis

This year has been a surreal journey from diagnosis, through chemotherapy to surgery and my brain is still trying to compute the ride. I’ve lost 6 months of my life and it will probably be another 6 months before my life returns to some kind of normality. I feel a massive weight has been lifted since having the cancer removed, however the euphoria I’ve felt since the operation has turned into quiet relief as I know it could have been so much worse.

Having cancer is the worst thing that’s ever happened to me and although not something I wish to repeat, it’s definitely been memorable and almost certainly life changing. Staring death in the face brings everything back to zero and gives you a new appreciation for life. It’s strengthened family ties, reinforced existing friendships and encouraged new ones to flourish. I joke about it, but cancer really does bring people together.

Anyway, enough sentimentality I just want to say a BIG THANKYOU to everyone who has been there for me this year and to everyone who has taken the time to follow my blog. Here’s to a Cancer free Christmas…maybe there’s a song in that 😉 Merry Xmas everybody!!

I had some GOOD NEWS yesterday. After waiting nearly two weeks, for the results from my MRI scan, I finally got the call yesterday to say “there’s been no progression of your tumour”. I was hoping for something a little more concrete like “it’s shrunk by 75%” or “we made a mistake”, but apparently “no progression” is classed as a good response, so I’m slightly relieved in a deflated kind of way.

This means I can no longer use the original title for this post, that classic cancer-chemo anthem by The Verve  “The Drugs Don’t work”. I’m rather peeved that I’ve had to scrap it but never say never, there’s always the funeral.

The past two weeks have been pretty awful for me and everyone around me. Call it a mental volcano. I thought the diagnosis was the worst thing I would go through, but this has been a millions times worse. In my mind there has been no reduction in the size of the lump, and this worry, like the cancer has spread. My consultant tried to allay my fears before the MRI scan by reassuring me that it felt smaller, however nothing would convince me until I had the results. Hence the relief when the breast care nurse called yesterday to tell me “there’s been no progression”.  The only thing I can compare it to is the anti-climax you feel on finishing university, only without the p**s up & gap year to look forward to.

Over the last few weeks, I’ve taken out my mental torment on those closest to me. Usually this would be my parents, however they were on holiday, so the unfortunate victim was my lovely friend Lou, who suffered my grouchiness & short temper for a whole 10 days. Luckily Lou understood that my foul mood which culminated in an E-bay tantrum had absolutely nothing to do with my inability to process a refund, which incidentally is really difficult. It was more to do with the simple fact that I don’t want to die.

Next time someone comes to visit I will try to make sure there are no life-altering diagnosis waiting in the wings. One thing I did learn from this little drama is that you can’t send jewellery to Australia, so if anyone wants some dolphin jewellery I’m practically giving it away on E-bay. Apparently dolphins aren’t cool anymore. There’s also a unicorn-necklace up for grabs: don’t ask, it was an impulse buy.

When you’re waiting for the results of a scan that could determine the rest of your life, it’s hard not to let your head go to darker places.  Thoughts of tumours growing and spreading mean I’ve been thinking about death a lot recently. Death is something that healthy people don’t particularly like talking about. We all float along thinking we’re immortal until someone like me goes and gets cancer. The reality I face is that I could die before my time. Hopefully I have another 30+ years in me, however I also have to consider that my future is finite.

Most people’s response when talking about death is ‘don’t be silly’ or ‘don’t talk like that’ or ‘that’s not going to happen to you’. This makes it really difficult to chat about death openly with family and friends. Understandably they don’t want to consider the possibility of my early demise. For this reason the only place I feel I can talk openly about death is at the Maggie’s centre. Most at Maggie’s are patients, survivors, carers or people who have lost someone to cancer, so death and loss are easy topics of conversation. Maggie’s is perfectly situated right next to the Oncology unit at Ninewells hospital and it’s the place people go to either commiserate or celebrate their diagnosis. There’s no holding back there, and there’s always someone to give you a hug if you’re having a bad day.

I’ve recently been reading about Death Cafes, a  movement originating in Switzerland which is now gaining popularity throughout Europe and the US. Death Cafes are places where people can meet and chat openly about death & dying. Let’s face it, we are really rubbish at talking about death in this country and few of us have religion or the death rituals it provides, so Death Cafes are filling a massive void. Bernard Crettaz, who conceived the first Cafe Mortel in Switzerland, said that when death was ‘liberated from the tyranny of silence’, people were ‘born in authenticity’. In other words: talking about and accepting death, enables you to live and gain more meaning from life.

Death is a subject we should all get more comfortable with talking about. You can’t hide from it and it’s something we all have in common: WE ARE ALL GOING TO DIE!

All this talk of death will hopefully be resolved in a few months time when I’ll be given the figures. With breast cancer, oncologists use a tool called the Nottingham Prognostic Indicator (NPI) to determine prognosis following treatment and surgery. They look at the size, stage and spread of the cancer to estimate how long you will live. In a few months time I will be given a magic number which will effectively predict my chances of surviving for the next 5-10 years. I can’t wait.

Anyway enough talk about death. For the first time since my diagnosis I can safely say that ‘the lump’ actually feels smaller. I’ve got four cycles of chemotherapy under my belt now. I used to dread it, but now I know it’s working, I’m looking forward to the next one. Number five is on Friday and only one more to go after that. The end is in sight.

A few folk have asked me how I found my lump. The answer is I didn’t, someone else did, for which I’ll be eternally grateful. My GP was more surprised than I was when I was diagnosed with Breast Cancer. Like most women I get lumpy breasts so she assumed the lump was hormonal.

I rarely check my breasts, if at all and I know many of you don’t know how to do it, so I’ve attached some useful links for you to have a go:

http://www.letsfcancer.com/get-educated/

http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/being-breast-aware/changes-look-feel

Hope this is useful for you!

The title for this post was something my friend Jenny said to me in a text & it pretty much sums up how I feel at the moment. Brian perfectly illustrates my current head-space in this clip from Spaced:

Brian and Art

Apparently I’m doing really well, at least so everyone keeps telling me.

Body

Physically I feel really good at the moment & I’m getting myself all geared up for chemo round 4 this Friday. I’m fasting today & like a marathon runner I’m hydrating before the event. I’m seriously contemplating wearing my Camelbak for the next week as I get so thirsty after chemotherapy that I need a constant supply of water. I’ve gone past caring what I look like, so a watering-hole attached to my derrière will only add to my ridiculous appearance.

A guy who works in the village shop asked if I was feeling okay when he noticed I was wearing a beanie on a sunny day. He was so nice I didn’t have the heart to say: “actually I’ve got cancer & I’m completely bald!” so I just said: ” yeah i’ve got a cold”. Nothing like cancer to stop a conversation.

I spent part of last weekend in Edinburgh catching up with friends and doing the festival thing. This was my first venture out into the big wide world since my diagnosis and I had a great time, although it was tainted. Does my wig look convincing and will people notice my PICC line? It was all just a bit too weird. I have many happy memories of going to the festival in my previous life so I found it difficult to relax.

On a lighter note, if you are going to the festival, I can totally recommend Nick Helm (mental, angry, hilarious but definitely don’t sit in the front row) and The Boy with Tape on his Face (silent but very clever & funny)!

Brain

Mentally I’m really struggling at the moment. The prospect of major surgery and uncertainty about whether the chemo is working have weighed on my mind for the last few weeks. The possibility that the chemotherapy might not be working didn’t concern me until the surgeon planted the seeds of doubt over a  month ago.

This might come as a shock to most of you, as it did to me, however chemotherapy doesn’t work for everyone. Everybody responds differently to the cocktail of drugs given during chemotherapy. If the FEC drug regime doesn’t work it’s likely they will bring my surgery forward. Changing to a different drug regime at this stage is too risky and will waste too much time.

I have to wait until next week, when I have another MRI scan, to confirm if the tumour is responding to the chemotherapy. I’m really worried because the lump in my breast doesn’t feel any smaller, so I have a meeting a with my consultant tomorrow to discuss some of my concerns.

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There’s so much they don’t tell you when you’re first diagnosed with cancer. I realise now why they don’t. If they told you everything at once you’d probably just find the nearest bridge and jump. I have hormone receptive breast cancer and I’m pre-menopausal so there’s a 1 in 4 chance that my cancer will return. Not great odds.

This is the first time since my diagnosis that I’ve started to feel really angry. I just want my old life back: F**K CANCER by the way.