Dear BB Followers,
Let me start by saying this post is not a pity party and that is why I still find it so hard to tell people when I have my scans and then the inevitable results…
When I’m riding high and I’m feeling good I want to tell you all and shout it from the rooftops as that is bloody fantastic!! But when the bad news or not so good news comes this is when I really do not want to tell you and I don’t want to be your brain tumour relation or friend. I quite frankly do not want to be the bearer of bad news, and I do not want to be the conversation stopper. Notice how a lot of this is “I” Yep this condition sure makes you insular- a topic one of my favourite bloggers spoke about recently too. You cannot help saying “I” but of course there is no way to describe something that is happening to you without saying it.
Tuesday 18th November was results day. 10 days prior to this I had my 6 monthly MRI scan and that part all went as usual. On Tuesday however it didn’t quite go as I had thought it would. We started with a great appointment and I really do respect my Neuro Oncologist. He is a great guy and he is always very approachable and I have never felt rushed in fact I think we spent around 1hr 40 minutes together which when you have a caseload of patients, that is a huge amount of time (especially when you think about all the crap the NHS gets- I think the NHS is glorious and in my experience I do not know what I would do without it).
So cutting to the scans- basically they were inconclusive. My Neuro Oncologist then said before discussing anything that he would like to review the scans for himself. My stomach dropped and I can honestly say it was one of the worst 15-20 minutes of my life as I sat there with him, Mum, Carl and I. When he gave us the news that there has been growth, I felt flawed and annoyed that my body has let me down (again!) but that wasn’t all…
Bastard Bertie has grown at the front of the cavity. It’s not even the 5% that was left (the exceptionally naughty and difficult to remove part!!) It is essentially and quite possibly a part that was already resected. It is still the front left hand lobe and it’s not broken away from the cavity (the good news part) but it has still grown within a centimetre and it’s noticeable. We asked the questions and at this point it isn’t thought to be swelling and it is not scar tissue. My Neuro Oncologist was quick to say that it is still considered minimal growth but he was surprised too that it has grown this quickly. Surgical opinion would need to be sought again and that if it’s no to surgery that radiotherapy may need to be the answer this time…and/or possibly together. I will be discussed at the next Multi Disciplinary Team (MDT) meeting and then I will have a repeat scan in 3 months (or possibly sooner) depending on what is decided at the MDT.
As you can imagine initially I felt not great. It feels like being diagnosed all over again and it feels like a setback. I always knew the journey would have twists and turns…but this early in, I have to admit it hurts. I have the wedding next year and the thought of having another surgery and/or starting treatment again before this shocks me to the core BUT I am determined to kick Bertie right in the balls again and I will do ANYTHING to take him down…so all these mixed emotions aside I am determined to win again.
I am still positive, I am still determined and I also know that out of all the bad news that people receive when living with brain tumours, I am still on the good side of bad news. I still feel blessed, I have an amazing partner, family and friends and I have all my BB followers and people I have met through what is the most god awful circumstances…but we have each other too which yes is cold comfort but strength in numbers gets you through and also a little perspective too when I know others who’s suffering is so great right now. I am sending love and blessings to you all.
As you will hopefully appreciate those of you who I messaged to let know there is a blog here tonight…it’s still hard for me to talk to you individually, one by one as I am being very strong but also I am still trying to implement measures to not be on the phone too much as we still do not know but radiation is still key on my list of things to cut down…If you want to speak with me please do via email, whatsapp, letter or carrier pigeon too (insert the cheeky icon face here…I need one of those desperately!!)
I am off to meditation tonight as this is something that I will never quit. I love class and I love the feeling it brings to me. Please do not feel sad…Take comfort in the fact that thinking about how much love surrounds me and how much I love you all is what gets me through…I will blog again soon.
All my love,