Since Monday morning I have had the same song from The Greatest Showman stuck on repeat at the back of my mind…
’I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me
It is FUCANCER Friday and what a week it has been. Technically on day 4 post op and I am feeling way better than expected. First, please excuse the following update as I am sure it will be littered with grammatical and spellling errorss however I am not apologising because the fact i am able to write this gives cause for celebration!
So, as the Funny Boy implied everything didn’t go quite as planned – On account of me literally breaking free from a 3 point 60lb brace. According to my surgeon in 20 years he has only seen this achieved 3 times and I’m the first female. Admittedly this is not a title I had hoped for. I was really angry and disappointmed in myself when I found out – I wanted to play by the book and had rehearsed the steps in my mind in the days and hours leading up to the operation but the main thing is that my surgeon is happy if not a little amazed at my brute strength!
The days here are highlighted with visits from family, friends and my number one sidekick Parsnip. So how am I feeling? I can hear a frequent clicking in my head which I’m told is the sound of my skull knitting itself back together. Every time I hear it I have an image of the grannies from the shreddies advert working away in there.
The fantastic news is I can control my left hand side – Overall mobility is good but basic tasks like. Speaking, eating and brushing my teeth are challenging and require more brain power and concerted effort. I have reduced sensation on my left so response to temperature and my ability to grasp is slightly diminished but i am in no way complaining- for a first step I’m already higher than i expected to be. I’m very weak with a lop-sided smile and slurred speech but that will improve. Plus I have an awesome new scar! So initial thoughts from me…. the medical team here deserve the greatest gifts this earth has to offer – I have no idea how I am going to show my appreciation to Mr Liaquat, Sue, the many many, many nurses and all the therapists too. Mr Liaquat (my surgeon) is my new hero and at the next FUCancer event we will be cheering for him and his heroic team!
I feel so incredibly lucky to be alive. The reality is now hitting me – rehab will require the 3 months advised. Speech therapy has begun and I’m working my way through tongue twisters I doubt I could have achieved even before Monday but I am looking forward… Looking forward to going home getting strong.
Thanks for all the amazing messages and huge apologies for the less than coherent replies. Reviewing my sent items proves my brain is not working at its optimum!
This week has been the hardest so far.
I was warned in advance of the side effects associated to the treatment. As per my previous blogs the biggest inconvenience had been the ongoing battle in my bowels. Constipation versus diarrhoea. What would your preference be? Constipation is a welcome relief in comparison to the latter. In addition to this I am learning to accept the change in my body’s appearance. The steroids are causing me to gain weight and the constipation guarantees a bulbous belly. This has caused a few girly tantrums as I moan about turning from Heather into a heifer! However in the grand scheme of things I have bigger fish to fry! What’s more the Funny Boy assures me I am still beautiful. Silly sod!
At the weekend I started suffering from cystitis. Like most unlucky women I have experienced cystitis before. It is a common side effect associated to radiotherapy however on a much more severe scale. Following chemotherapy on Tuesday night I was in a great deal of discomfort and pain which kept me up for the majority of the night. Unfortunately this followed into Wednesday where the pain was beyond inconvenient – it was unbearable. I didn’t want to leave the bathroom, let alone the house. For the first time I found myself not wanting to go to the hospital for my daily treatment. Upon returning home the only relief I found was sitting in a luke warm bath. I spent over two hours in the tub watching movies whilst the Funny Boy brought me cranberry juice and ice lollies (did I say the Funny Boy is my knight in shining armour?) When I eventually brought myself to leave the comfort of the tub I was left with no alternative but to call the Cancer help line. I was in agony. The Johnny Cash song ‘Ring of Fire’ has a whole no meaning to me now. Within 20 minutes of being on the phone I was back in the hospital. With daily visits I am sure you can appreciate the last place I want to go voluntarily is the hospital however I felt a sense of relief upon arrival. Once again I was impressed with the excellent staff who greeted me and assured my complaints were justified. I get the fear I am over reacting sometimes and worry that I am wasting people’s time. However the staff comforted me and within three hours I was discharged with pain killers and antibiotics. This led to a reasonable night sleep – the best I have had in ages. As I write this now I am still in mild discomfort but it is merely an inconvenience opposed to the debilitating pain I was in yesterday. Tomorrow brings the first operation to prepare me for two subsequent doses of brachytherapy. Following a successful series of pre op tests today it looks like I am ready and raring to go!
Yesterday was the first time I felt properly ill. The nature of chemotherapy and the side affects of radiotherapy are gradually having their impact. It is like getting hit by a truck very slowly. My whole body is feeling the effects. My emotions are all over the place too. Trying to plan a wedding is difficult when you find yourself welling up over photos of complete strangers on their special day. However these are all things to be expected and I am nailing this. I am over half way through and as I sit here I still have a smile on my face. The past few weeks have been tough but I have been blessed by great moments shared with my wonderful family and friends. At the weekend I had a long cwtch* with Conor who agreed to my page-boy for the wedding, I brought my sister-in-law to tears by asking her to by my maid of honour and I spent Saturday in the glorious sunshine with my family at the Drymen show. Another highlight this week has been the news of two of my oldest friends welcoming a beautiful baby boy into the world on Tuesday – Jack Harvie – I can’t wait to meet you! What’s more I was I was greeted by a video of Ryan this morning as he stretched his legs and sang a song – hopefully it wasn’t his attempt at Johnny Cash though! Life is beautiful!
So as I approach the last two weeks I would say I am at mile 18 of this marathon. The 18th mile for the Loch Ness Marathon was a monster; steep incline and all uphill but I smashed that and I am going to smash this monster too! #FUCancer
So it is day 9 of treatment and in true marathon-fashion there has been a series of peaks and troughs. I feel a sense of relief having started chemotherapy and radiotherapy. The medication causes a range of side effects mostly affecting my bowels. I can often be heard going into the loo saying ‘Pray for Poop’ which the Funny Boy has found very amusing. Similarly after having my car washed at the weekend I was furious to find the local seagulls had chosen to redecorate the exterior. Not furious at the mess they had made but furious at how easily their bowels were functioning in comparison to mine! For the first time in Conor’s little life I find myself competing with him as he has recently started potty training! So yes, my bowels are not happy and overall I simply feel shattered but race day is here! The start gun has been shot and at mile 5 I have started at a steady pace and I am feeling strong!
Over the past six weeks I have had countless hospital visits involving a range of doctors, nurses, receptionists and more. Although I am becoming more accustomed with the daily ritual of radiotherapy and weekly sessions of chemo I still find myself with butterflies in my stomach as I approach my next appointment. Very little can help with the nerves. Monday night this week i was up until 5.30am analysing my appointment from the day before and trying not to worry about the day ahead. However there is something which makes each day easier and that is the people who are treating me. I have been amazed, and at times overwhelmed, at how personable and genuine the staff are. My initial diagnosis came from a straight talking Irish lady called Hilary. She was a tower of strength during those initial weeks for me and my family! Upon being referred to my Oncologist I was again pleasantly surprised at how patient she was at explaining the treatment and answering the questions posed by me, Iceberg, Buggernuts and Funny Boy. At chemo I was greeted with two lovely ‘Louises’ who not only made sure I was comfortable but took the time to ask me questions about my engagement. Across the road at radiotherapy there are a team of girls who go beyond the ‘how are you?’ to ask about plans for the wedding. At my first review meeting on Monday I met another friendly nurse who allowed me the time to ask a whole host of questions about my treatment. When I finished she took the time to ask the Funny Boy if there was anything he wanted to ask and acknowledged that this situation affects him too. All of the people above have helped me feel like Heather and not just a patient. Unfortunately this has been a stark contrast when I have had to deal with receptionist staff at my GP clinic. Wether it be over the phone or in person I have been continually disappointed at their curt manner. On one occasion at the waiting room I overhead an elderly lady sign in for her appointment. Initially the lady, who was using a walking stick, was kept standing for at least 5 minutes before one of the receptionists left their computer to come to the desk and take her details. The lady was greeted with a ‘Well, you’re 50 minutes early for your appointment!’. The elderly lady looked a little embarrassed and responded with ‘I was worried my bus wouldn’t get me here on time’. I was disgusted when the receptionist replied bluntly with ‘You won’t be seen any sooner. Take a seat.’ My personal grievances with the GP receptionists are somewhat similar – I feel like I am being an imposition whenever I call. When trying to order a repeat prescription, sick line or change of address it has been met with a series of questions in an impatient tone. I appreciate they are busy and I know they cater for a wide community but they need to remember that everyone is individual and for the majority nobody is out to waste their time. People call the GP when they NEED to – not because they want to. Everyone has their own challenges and the difference a smile can make is huge!
As previously discussed the staff beyond my GP clinic have (in my opinion) gone above and beyond the call of duty which has made the power of difference to me and my family. This is a lesson for everyone and something I am increasingly more conscious of. Everyone has their own personal battle – it could be cancer, it could be heartbreak, it could simply be a crap day at work – but sometimes all it takes to improves someone else’s day is a smile!
So my challenge for you today is:
1. I read once that the things you take for granted, someone somewhere is praying for so take the time to ask yourself: What am I thankful for?
2. Smile at a stranger! You could be the reason someone’s day is made that little bit easier, that little bit better!