So… it all went to plan and my recovery has been fabulous!!! Yippeeeeee!!!
I have already posted on the Facebook group page about this amazing new equipment, but for those who don’t follow the Inside My Head Facebook group….this may be a fascinating read!
This probe trial at Imperial is partially funded by Brain Tumour Research Campaign, so it certainly excites me to think with the money we are raising/can raise together, what may come next!
The doctors were really happy with the resection and how my operation went and are more than happy with my speedy recovery! I am hoping that this is a sign of things to come and that my body is more than ready for the fight ahead!
Being completely honest, which I always will be when writing this blog….I am more nervous about this next stage; radiotherapy and chemotherapy! I know, unfortunately SO many people have to go through this kind of treatment, but I have been fortunate enough so far, that other than my seizures and recovering from my 2 operations, I have not really “felt ill” or “looked ill”, yes I have been tired every now again and I have listened to my body telling me this and it has faded reasonably quickly. However, I have been warned that the treatment will more than likely change this, although everyone is an individual, and will therefore react differently. I have been told that the radiotherapy will cause hair loss and tiredness, and the oral chemotherapy tablets may cause sickness. The treatment will be 6 and a half weeks long, Mon-Fri down in London.
As you can probably tell from my photos, my hair is important to me…..I have LOTS of it!! Even when I first found out about my prognosis and the shock of finding out it was terminal…..to me the hair loss was one of my main worries! I know this is pretty shallow in the grand scheme of things, and really should not be at the forefront of my mind…..but as I said, I am a very honest person and the thought of being bald most certainly was right there at the front waving at me! One of the BEST things to have happened to me since writing this blog has been getting to know people who are unfortunately on a similar journey to myself. It is at this point therefore that I simply HAVE to give a special mention to my beautiful, new friend, Charlotte. We are the same age, and have the same prognosis. Charlotte has had her treatment and my lord, she has given me a whole new outlook on losing my hair! To say she rocks a wig is a complete understatement! She looks HOT!!!! Even just receiving a message of support from Charlotte and seeing her photos has made me so much more positive about this next stage for me; and for that, Charlotte, I thank you!!! Getting to know others, just like Charlotte, and the very many other amazingly kind and strong people who have reached out to me since I started sharing my journey, has given me even MORE determination to make a difference!
I have decided I am going to take each radiotherapy session, each day, each week, as it comes. I do not want to rush in and shave all my hair off irrationally. If I lose a lot and having naturally thick hair means that my wig won’t sit as well unless I do shave it all off; then so be it! It’s another test of character for me and I can have the fun of experimenting with different colours/styles that I would never have had the balls to do normally!!! On the plus side for me, my sister is a pretty amazing hairdresser, so I am sure she will sort me out a treat! (Thanks sis!!!😛 )
As for chemotherapy, I have been told that I may feel sick. I think I am in the frame of mind of preparing myself for the worst, whilst hoping for the best! Potentially for these 6.5 weeks I could be absolutely wiped out, shattered, sick, not want to see or even have the energy to see anyone/do anything. Or I could be okay during the beginning until the levels get higher towards the end of the treatment; or the fighting spirit in me so far may not find it as difficult as they are warning…..nobody knows until they do it!
Looking at it from a logistical angle, it is an emotional time. My treatment is in London; the majority of my family live in County Durham. I will miss them ALL an incredible amount and I am struggling to get my head around the fact that I won’t have my niece, Amber and her ridiculous one liners to keep me smiling day after day😛 (get your snapchats at the ready, Amb!)! I am very fortunate in the fact that, everyone wants what is best for me and completely respects my decision, I feel a strong connection with the team at Charing Cross and their innovation and passion inspires me and I do not want to be out of their bubble of positivity, as I still truly believe my frame of mind, added to their passion, is helping me fight Trev! In the grand scheme of things, 6.5 weeks is not that long and I know I will have plenty of visitors. Also on my side is the fact that we have a family base in Hertfordshire; plan being, that this becomes my home for this period of time and, dependant on health, we get the train or we travel by car each day into London. I have the weekends available; so putting my ‘positive head’ on, I am hoping at least at the beginning, I can hop on a train back up to the North East. For once, having my family spread all over the country is a huge benefit!!! I will also be closer to my work colleagues in Portsmouth and will hopefully be able to use it as a time to reunite with those amazing ladies, again, health permitting.
I am trying my hardest not to predict the future at the moment, as there is too much uncertainty surrounding how I will feel, what I will want to do etc. so I need to take each day as it comes and go from there.
I am currently awaiting an appointment from the oncology team at Charing Cross to go and have my mask fitted ready to start my radiotherapy treatment.
If you are like me and had no clue what this meant, please view the Cancer Research UK information video below:
I have been told that the mask takes about 2-3 weeks to be made. I have just sat here and watched the video above with my mum….her first comment; “Wow, well there will be a big bit sticking up in the mask for your nose!!”, DELIGHTFUL MOTHER!!!😛. So my short term plan…make sure I am listening to my body and resting up when I need to, as my body will still be recovering from surgery, but most importantly, make the most of the next few weeks while I am feeling reasonably fine and dandy!