Just before Christmas we recieved the news that the pathology from my recent craniotomy suggests my tumour is a stage 3. As a result on Monday 20th January I’ll be starting radiotherapy for 6 weeks and following this I’ll begin chemotherapy which I’ll be on for up-to a year.
The news knocked the wind out of my sails and left me emotionally exhausted. Thankfully, having allowed time to let the news settle and with the amazing support of my nearest and dearest I am feeling ready to take on the next climb in this marathon called cancer.
The biggest side effects predicted are fatigue, nausea and hair loss.
As always, I’m focusing on the positives: I am strong, I have an incredible team (medically and socially) and I’m prepared to give it all I’ve got. I’m really grateful to everyone who has been in touch to offer support.
A huge part of my coping mechanism is physical activity and I’m delighted to say my oncologist has not only given me the ‘OK’ but encouraged me to keep running. As a result the Funny Boy and I have signed up for RED January (www.redjanuaryformind.co.uk) and I’m now loving Park Run (www.parkrun.org.uk) On that note – if you’d like to join me for a run please get in touch. Always keen for a run buddy and it is a good excuse for brunch after.
Im currently researching wigs. If anyone has any experience and advice – I’d be really grateful for any pointers.
I hope 2020 has been good to you so far and I look forward to see you in the coming weeks and months. BRING IT ON!
As I approach the final two days of treatment I have already began thanking the friendly faces who have been responsible in getting me through this journey:
Thank you to Louise, Louise and all the staff at Ward 1. Chemotherapy is a scary word but the team at Ward 1 have created a calm and welcoming environment making it a friendly place.
To the radiotherapy ladies at LA4 aka Top Team! Susan, Wendy, Laura, Kelsey, Alison and Smaira. Thank you for being so friendly and showing a genuine interest in all aspects of my life. From bowel movements, to engagement plans and the baton relay. Like a true friend you have listened to all my mornings and groanings over the past six weeks and even provided chocolate! I will miss my daily visits!
Huge thank you to Dr Stillie, Dr Zara, Lindsay and Louise for planning and explaining my treatment. Thank you for allowing my front runners to attend the meetings and ask endless questions!
Special thank you to Julie and Emily for calming my nerves and constantly reassuring me. You have made a horrible situation bearable for me and my family. You have such a lovely manner and you really do a fantastic job!
Finally, a heartfelt thanks to Hilary Brown and Graeme Walker. You have been a constant source of advice when needed. I am in awe of the work you do and how you do it. You are superheroes in my eyes!
I feel very lucky to have had the support and expertise of all of the staff mentioned above in addition to staff at Ward 2, 4 and 6. I have been continually overwhelmed at the caring manner in which I have been treated at the Royal Infirmary and Western General. The NHS often receives negative press but I would like to challenge this and say the treatment I have received since diagnosis has been second to none. It has been a very challenging time for me and my family but thanks to the people mentioned we have been filled with optimism. From the bottom of my heart and on behalf of my family – thank you!
The cocktail of pain killers is having an affect on my creative writing skills.
What a week! Unfortunately the cystitis continued into the penultimate week of treatment. Yet again I found myself playing a game of Russian Roulette when going to the toilet. It would be a gamble wether I would escape the porcelain throne pain free or resort to setting up camp whilst the agony in my cramping bladder passed. At the start of this week I spent hours in the bath tub as it was the only source of instant pain relief. The Funny Boy started bringing me my meals whilst I was sat surrounded by bubbles watching endless episodes of Modern Family. It sounds a lot more relaxing than the reality!
It wasn’t until my final session of chemotherapy that I was completely honest about the severity of my cystitis. I wasn’t hiding the pain intentionally. The doctors and nurses had given me ample opportunity to discuss this. I just found it difficult to admit that cystitis was so painful. Also, the symptoms tend to be worse at night and by the time morning came around I always assumed it was getting better. Once again the impeccable staff at the cancer unit at Western General Hospital reassured me that there is always something they can do for the pain and that I just need to be honest. Upon completing chemo on Tuesday I breathed a huge sigh of relief – I feel like I am in the final stretch now.
Friday was challenging. I had my first session of bracytherapy. I had been mentally preparing for this for weeks. I knew what to expect however nothing can help avoid the fear of the unknown. At 7.30am I arrived at the hospital armed with my front runners; Iceberg, Buggernuts and Funny Boy. They did a great job at keeping me calm and distracted whilst I waited for the anaesthetist. The Funny Boy made me a card, Mum showed me wedding dresses and Dad… Well, dad managed to stay awake! I couldn’t get through any of this without them. When it came to say goodbye to them I could see how nervous they were but they all smiled and it was easy to leave knowing when I returned they would be there waiting for me.
Upon returning from surgery and waking up from general anaesthetic I was very uncomfortable and had a great deal of abdominal pain. I had to wait for the results of my CT scan and allow the doctors time to plan treatment before I could be seen. This meant several hours of lying still. I had a catheter and a machine to keep my legs from moving to prevent blood clots. In addition to the pain I found myself feeling very nauseous but also hungry. I felt helpless. As I looked at the clock on the wall I realised it was less than 24 hours until I was due to be meeting for the Queen’s Baton Relay. This was the first time I began to question wether I would be able to run the relay…
…but I was wrong!
I woke up at 7am on Saturday morning and the first thing I did was run through to the living room to put on BBC News showing the Baton Coverage live! I watched Daley Thompson pass the baton to Eilidh Child and turned to my Mum to say:
“I will be carrying that baton today!”
Upon the arrival of the rest of my family I felt like a child at Christmas! I found a new surge in energy levels which have been noticeably lacking over the past few weeks. It was an incredible feeling of anticipation. As the time drew nearer and I got into position to carry the baton I was overwhelmed at the number of friends and family who came out to support me. I was under strict orders to ‘take my time and enjoy every minute!’ which is exactly what I did. As I walked along Duke Street in Leith I took in the smiles and waves of everyone around me. I took a deep breath and remembered why I was nominated to be there. It was an incredible experience which I got to share with so many special people. Even my Nan got to watch it live in Wales!
It is hard to believe that following such a traumatic Friday I could have a Saturday which I will treasure for the rest of my life. I can’t quite believe the difference in a day: Friday was spent lying still biting my lip through the pain followed by Saturday carrying the baton giving a proper FU to Cancer! To say I was overwhelmed would be an understatement. I was on cloud 9! Carrying the baton was always going to be an honour but for me it was more than that. Carrying the baton was a reminder of all the fantastic things I have achieved and I am yet to achieve in my life. Top of my current ‘to do list’ is beat cancer and get married. No biggy! So as I come into the final stretch of my marathon I already feel like a winner surrounded by my Army of supporters on the sidelines. Thank you to everyone for being there! You have no idea what it means to me.
#FUCancer – four days left of treatment to go!
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