Only 6 more sessions of radiotherapy to go! I am feeling so much better than I thought I would be at this point. When I had radiotherapy 6 years ago, (wow! Has it really been that long!) at this point in treatment I was on crazy pain meds, struggling to sleep and unable to walk the 3 flights of stairs to the flat we lived in.
Excluding my rock chick inspired hair do and feeling super tired, overall I’d say I am doing really well. I have managed to do some form of exercise everyday which is definitely having a positive impact. As I have said previously, radiotherapy is cumulative and it is highly likely that I’ll be hit with fatigue at some point, but for now I’m embracing what I can do and aiming to enjoy as much as I can.
It’s weird being back at the Edinburgh Cancer Centre for daily visits. All the staff are super kind and it’s a great excuse to pop in to Maggie’s which is literally a home away from home whilst stuck in hospital. They are so welcoming and the centre itself is a huge contrast to the clinical setting of medical appointments.
One of the hardest aspects of being at the hospital is meeting all the other patients who are on their own ‘cancer journey’ – so cliche but true. It is a humble reminder that no matter how hard I think I have it, unfortunately there is always someone who has it worse.
On Monday I have my planning meeting for chemotherapy. I don’t know if I previously mentioned that this is part of a Cancer Research UK trial. I am very passionate (aka – total geek) about the work of CRUK so I’m not ashamed to admit that I’m very proud that my very unwelcome cellular demons are finally proving to be of some use!
6 weeks ago I was preparing for my third craniotomy. Tonight I am preparing for the first of day of radiotherapy.
It has been a busy fortnight. The Funny Boy returned to work so I’m getting used to flying solo again. I continue to visit @maggiescentres to help prepare for the upcoming weeks and months, and I have started wig ‘shopping’ which is proving to be a surreal experience and really testing my decision making skills. I am hoping I’ll find something I like this week.
Over the last few days I have been blown away by family, friends and colleagues who have shown me their support. From a surprise crew of runners from my hockey club at Park Run on Saturday to lovely hampers in the post and a ‘Radiotherapy Advent’ of treats to open everyday of treatment – I am a very lucky girl ❤️
I’m sorry for the slow response but I will reply to everyone. I want to say thank you and let you know your kind words of encouragement mean so much!
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!
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