Author: Debbie C
In December 2011, at the ripe old age of 43 and three quarters, I was diagnosed with Grade 3, HER2 + / ER/PR -, Invasive Ductal Carcinoma, or as I named it "The Git".
I often found myself sitting downstairs, scared witless and wide awake at stupid o'clock so decided to write my feelings down, I realised that writing about my experience of breast cancer from diagnosis through treatment really helped me deal with all the crap that is thrown at you. I also found that people enjoyed (odd word, but you know what I mean) reading my blog. It answered questions for family and friends, questions they were too scared to ask. It also allowed my family in Oz and NZ to keep abreast (pun intended) with what was happening to their Pommie Cuz. I had never written a blog before, I love reading and talking and found this was a perfect combination. I published it under www.makingthebreastofit.blogspot.co.uk. Below is the second entry which deals with the initial aftermath, rounds of tests etc.
Even Eeyore's Cloud has a Silver Lining
The week that followed confirmation of my diagnosis and the realisation I had to wait for yet more test results, was, by far, the lowest point on this roller coaster ride we are clinging onto for dear life. Both Alan and I left the hospital feeling as though we'd been hit by one of Dad's coaches (plug plug lol). I spent the following week convinced "The Git" was attached to every major organ and all my bones. Every ache and pain I felt was "The Git" infecting another part of me. I had trouble sitting up straight, my rib cage felt uncomfortable and enormous. I googled what organ was under there (not paying attention during my Biology lessons in 1981 was proving to be a big mistake!) and discovered it was my liver - well, that was it - I had cancer of the liver too! I was a goner. Alan (and everyone else) spent the week telling me I was wrong, that it hadn't travelled. Every time someone said this to me I would be thinking "how on earth can you possibly know".
During the week I visited my chiropractor, Fiona Fingers (a nickname given to her by my friend, Alison's family - and a very apt one - her fingers should be on prescription from the NHS!) I've been seeing Fiona for about 2 years now after I started losing my balance and suffering crippling neck and shoulder pain. She had put all my neck, back, shoulder, hip and heel (ha ha have just read that back and I sound like I was destined for the knackers yard 2 years ago...) problems down to a whiplash injury I'd received in a minor car accident almost 20 years ago. The vertebrae high in my neck (C2 & C3 if you want to get technical) were inflamed and trapping the stuff that needs to flow easily (see how technical I can be?). It took a good few months but finally she got it under control and I was now only having to visit every 6-8 weeks (if needed) and at times of stress.......! Anyway, again I go off at a tangent, I told Fiona about my BC diagnosis and my fears that "The Git" was everywhere. She explained that the liver is the organ which absorbs all our negative feelings ie. grief and anger, and that it was no wonder mine was "playing up". She worked on that area and also explained that if you have bone cancer, this makes the bones weaker. Now, considering she had been using "high level adjustments" (by that I mean she had made virtually every bone in my body crick, crack and pop on every visit) for the previous two years, she was pretty certain she would have broken one of my bones by now. I left there feeling a little calmer than when I had arrived, see I told you she was wonderful.
Things were moving fast now that my cancer had been named and shamed. I'd had my CT scan after leaving my Consultants office on the Thursday afternoon and we had to be back at the hospital at 11.30 the following morning for my PET scan. You are injected with a radioactive dye that takes approximately three hours to travel round your body. So after I'd subjected my arm to another needle (and the poor nurse doing the injection was subjected to some inane chatter about the pigeons on his roof not being very fat - I was in panic mode so don't ask!), we left the hospital and went into town to do some more Christmas shopping, have a bit of lunch and generally lose three hours. I was a bit worried that I might set off the shop alarms with my radioactive blood, but the trip passed without me having to roll my body over the barcode readers - life's just no fun anymore... My scan was booked for 2.30 so we checked-in and sat in the waiting room. I wish they'd make these places a bit more interesting. I'm getting fed up reading posters of a nurse saying "it's ok to ask if I've washed my hands" I wonder if anyone ever does this - I know I don't. Mind you, quite often I want to follow women out of the Ladies and ask them why they didn't bother washing their hands afterwards - but I like the shape and position of my nose, so I just mutter "skanky" under my breath as they leave.
The PET scan is a bit like an MRI minus the claustrophobia. I had to lie on my back whilst the machine's "brain" s-l-o-w-l-y travelled the full length of my body from skull to toes taking pictures of my bones. It takes approximately 20-25 minutes and you have to lay quite still. The nurse kindly played a CD of Christmas Carols for me.....
On Thursday, 8th December we made our way back to the hospital. I spent the 10 minute journey not speaking a word to Alan, just praying in my head over and over again "please God just in the breast, please God just in the breast". I made all kind of promises to God if He would let me get good news that morning. I think the most challenging and selfless one I made was to promise to stop losing my rag with the kids when they get on my last nerve, argue, leave their crap all over the floor, argue, forget to bring their washing down, argue, leave their stuff on the kitchen counter instead of putting it in the dishwasher, oh the list goes on. This was a big one but I was prepared to make sacrifices!!
We got to the hospital an hour early, now, if you know me in real life (RL - another acronym for you to learn), you will know I am absolutely terrible at being on time and I am NEVER early. Debbie, my best friend of over 30 years gave up eons ago and admitted that, for a long time now, if we have to be somewhere at, say 7pm - she will tell me 6.30 so we stand a good chance at least being on time! I always try and cram 20 minutes of stuff into 5 and then am totally dumbfounded when I arrive late. So, for us to arrive an HOUR early at the hospital was all down to Alan - who hates being late.
We sat in that blasted waiting room, me shaking, taking huge breaths and sighing constantly - neither of us talking very much. Each swish of the door we tensed, waiting for my name to be called. When it finally was - ONE HOUR after my actual appointment time I very reluctantly I got up and walked through the doors - I swear I heard the whole waiting room give a huge sigh of relief that the rather large raincloud had left the room.
The set up in my wonderful Consultant's office was the same as previous weeks, he sat behind his desk, I sat to the side, Alan sat opposite him and the BCNs perched on their edge of their chairs ready to catch me if I passed out, looked like I was going to be sick or - more probable, made a run for it! I was staring at him, willing him to give me good news. Alan's derriere wasn't even in the chair when he said "I'll come straight to it.....", (cue sharp intake of breath from us) "Well Deborah, your CT scan is clear and so are your PET scans" - OMG!!!! I nearly slid onto the floor with relief and I think Alan collapsed into his chair. Finally, we had some good news, maybe it was the prayers - not just mine, so many people had said I was in theirs that week, maybe it was the fact I wore a different top at this appointment or maybe it was just pure luck - I like to think it was a bit of all three. At this point I would like to say that I did remember to say a huge Thank you to the heavens as we drove out of the hospital gates.
A lot of what my Consultant went on to tell me went right over my head that day, I just wanted to phone everyone to put them out of their misery, cancel the loan I had taken out for the luxury walnut coffin with the plush satin lining and a little pillow (sorry, sorry I couldn't resist that one - you are all so blooming easy to shock - its too easy sometimes....). I really don't know who was more pleased that morning; Casper, the nurses or us! The meeting immediately took on a whole new, upbeat feeling. Now the fighting talk began, my raincloud had turned into a rainbow, the sun was shining again and I suddenly felt like Christmas was back on (I'll just ignore the large debt that comes with it lol). Whereas I had been told at my initial appointment that the first thing they would do would be take me in and perform a mastectomy with chemo and rads to follow. Now he was asking me to consider having treatment the opposite way round. They were going to discuss little ole me at the weekly team meeting the following day and he was going to see if they agreed with him to start with a Sentinel Node Op (SNB - remove some lymph glands from under my arm to see if the cancer has spread there), followed by 8 cycles (24 weeks) of chemo/Herceptin with a mastectomy and rads after that. The Herceptin would then continue 3 weekly for another few months. All in all we were looking at about a year of treatment and operations - I say "we" but obviously it will be me sitting there having "good" poison pumped into my body for the next four months. However, I say "we" because Alan has never made me feel that I am on my own fighting this. Yes, there are times I feel alone but that's a different feeling altogether. He has been there every step of the way, every appointment good and bad, supporting me, comforting me, holding me and taking the pee out of me when I get too over indulgent. It's a cliche, I know, but he has been my rock and I will never be able to thank him enough for as long as I live.
A very different Debbie left the hospital that day. This one had found her sense of humour and her fighting spirit - I really must clear out my handbag more often! This Debbie does not want to speak to anyone who isn't on the Positive Thinking Bus - and is quite happy to let that be known to anyone who needs telling (whereas, Old Debbie would have worried about hurting their feelings). Don't worry, Old Debbie will return but not until this evil, invasive, destructive piece of crap has been beaten, removed, pulverised and sent packing once and for all!
I hope this post has not been too depressing. I feel it's important for anyone reading this who might be unfortunate enough to be fighting the same battle to realise that ALL your feelings, reactions and ways of dealing with it are NORMAL. There is no "right" way to handle this, just go with what feels right for you. Some people wouldn't have written a blog, some people will only tell those closest to them or on a need to know basis, some will tell anyone and everyone - well, that's the right way for them and I wish them all the love, luck and positivity in the world. However, I am a gas-bag - I will speak to people at the bus stop until they get on a bus, any bus - sometimes I suspect they get on the wrong bus just to get away from me - but that is me. This blog will be "warts n all", there is no point in glossing it all over - that won't help me or anyone else going through it. It is my dearest wish that it makes you laugh your socks off, I certainly sit here with an inane grin on my face whilst typing it so I hope it at least makes you smile. If it makes you cry, then I am so sorry but I hope it's just a one tissue, "there for the grace of God go I...." cry, because you ARE allowed to feel like that and not feel guilty. Nine out of ten lumps/masses are nothing or a cyst (painful but treatable), I was just unlucky enough to be the one in ten.
Well my sister in Geordie land is waiting for an update so I had better sign off now. No doubt she has a pocketful of witty comments prepared to keep me grounded - and I love her for that.
My next post will be covering the Sentinel Node op and my first dose of Herceptin - as you have probably realised by now I loathe needles, veins, blood eugh - makes me want to up-chuck - so I might have to get that post ghost written!!!
As always, Onwards and Upwards!