Getting used to living with itI think I’m feeling frustrated mainly due to the headaches and tinnitus. Every morning I wake up and they’re still there! The stabbing pain is a bit unnerving and the tinnitus winds me up. It’s worse when lying down, but tablets take care of that at night. I’m also on medication for my headaches, but don’t like to take it too often as still want to function! We met with the neurosurgeon again who outlined the situation and how they will be monitoring it, as where it is located is associated with more risks when/if they operate.
I have had more ophthalmological appointments and all good there, the optic nerve has not been comprised so my vision is fine (give or take a bit of blurry vision). I also have an appointment next week with a neuro-oncologist in London to talk about radiotherapy as treatment to stop growth. However we’re not sure if this is the right way forward. Apparently you only get one shot at radiation to the brain, so it’s possibly better to save it for if they operate as it may be needed then as they wouldn’t be able to remove all of the tumour via surgery.
Please don’t grow!In any case, my next MRI scan will be in May/June and it will show if there has been any growth. It is quite scary knowing that there is something in there and the pain is a constant reminder. However, whether it’s naive to hope so or not, I’m hoping that if it’s been there this many years growing slowly, could it not grow at all? I’m a bit nervous (aka very scared) of a craniotomy which could be an option in future. However, with ‘watch and wait’ it feels a bit like a game of ‘will they won’t they’ with regards to brain surgery. The uncertainty of what the future holds can be a lot to get your head around.
I am also expecting an appointment with the neurologist to manage the symptoms, which they now do agree may be related to the tumour. If I can be pain free and function as normal as can be in between the future monitoring scans, that would be great. Not too much to ask is it?
Brilliant supportThis month, I was fortunate enough to visit a Brain Tumour Support meeting with a lovely friend who also has a brain tumour. She gave both Little C and I a lift and introduced us to the group. I found it very beneficial to talk through things with others. We all may have very different situations and backgrounds, but one thing in common. It was a breath of fresh air and the support worker Claire is fantastic. So now there’s two angels on board – Claire from Brain Tumour Support and Jodie from Brainstrust! Little C had a great time, there was a pool table there and biscuits. Plus, a ready made audience for her adorable songs and chitter chatter.
Flowers make me smileThe whole world is on Coronavirus alert right now and everyone is making sure that they are taking care of themselves and their families. This is even more important for those with a weakened immune system or the elderly. I’m really surprised how people have been panic-buying and taking all the soap (and loo roll). It was a pleasure this week to help someone whose family are vulnerable by giving them some hand-sanitizer. Having a young daughter and also being a festival fan, the stash we have at home has proved invaluable right now. It was lovely when she said thank you by bringing the most gorgeous flowers from her garden round together with some yummy chocolates! Simple, kind gestures rock.
Fundraising funDid you know that March is #braintumourawarenessmonth? I started my justgiving page for brainstrust back in January, but hadn’t as then held any specific events. So, in March, I organised two charity events (brainstrust ‘Teafest’) in Warwick – a Charity Family Afternoon at Chase Meadow Community Centre and a cake sale at the Rock Choir rehearsal at Newburgh Primary School. I cannot thank everyone enough (too many to name) for their help and support in making these possible! People who helped out on the day, people who made stuff, donated, baked, came along etc. I was lucky too to have had some good publicity, including articles in the Warwick Courier, Leamington Observer and Coventry Telegraph. If you can’t have good news in times like these, when can you?
I’ll be there – Rock Choir fundraising event 11th March 2020Many years ago, I was a member of Farnham and Guildford Rock Choir. When I got in touch with them about help with fundraising, I was pleased to be invited to Rock Choir Warwick’s rehearsal their rehearsal in Warwick. It was such a buzz being there and meeting all of the members and their enigmatic leader Rachel Button.
Some had made cakes and biscuits, and I served teas, coffees and cakes in the break. There was also a raffle and I sold some hand-knitted goodies too. It was a great pleasure to listen to their singing (see my Facebook page to hear a wonderful version of Jess Glynne’s I’ll be there). The harmonies were a joy and the words were so appropriate. I got quite emotional when they performed ‘Don’t you worry ’bout a thing’ by Incognito as this has always been a firm favourite on my motivational playlists! I might have shed a tear when sharing my story. Even though I have always been comfortable with an audience, this time it was a little different as it’s not fictional or about someone/something else!
Thanks to the amazing generosity of the members of Rock Choir Warwick, we raised £212.74 at this event!
Community spirit – Chase Meadow Charity Family Afternoon 12th March 2020
Ever since we moved to Warwick, we know we made the right move. Every single day I can clearly see what a wonderful community we live in. This was proved even more at the Charity Family Afternoon that I held at Chase Meadow Community Centre, the second of the ‘Teafest’ events for brainstrust this week. My fiance Carl and daughter Little C were on hand to help out too. Little C even had the title of ‘chief helper’ and did a great job in encouraging people to buy things with a smile on her face.
Volunteers Louise and Sandra at Chase Meadow Community Cafe opened up for the afternoon to serve teas, coffees and homemade bakes for brainstrust. Ele from Arty Splats Warwickshire provided bubbles, messy play and songs for the little ones to enjoy. And I had a stall selling more cake (you can never have enough cake), raffle tickets, hand-knitted goodies, home-made marmalade, chocolate and lucky dip presents from Chase Meadow Crafts. Everyone had a brilliant time and the kids enjoyed having extra playtime and treats.
Prizes galore!There were many raffle prizes won, including a glamping holiday voucher at Winchcombe Farm which one lucky winner received! The children loved the charity ‘playdate’ and the adults seemed to really be enjoying the cake and general buzz. Thanks to the community of Chase Meadow, this event raised £250.10. I am absolutely astounded and proud!
That warm and fuzzy feelingIt has been absolute joy to have focused this few months on fundraising. As I said before, I wanted to start raising money for brainstrust to say a personal thank you and also to help them support others on their journeys. You never know when you may need the help of a charity to help physically, mentally and emotionally. They do amazing things and are helping many families right now. Everyone who has donated, both on the events and to my JustGiving Page should be very proud. You are changing lives.
The total amount raised is now a whopping £642.84!(£212.74 Rock Choir event, £250.10 Chase Meadow event plus £180 from individual donations). I am so grateful to everyone that has supported my fundraising for brainstrust. Thank You. You can track my fundraising through my JustGiving page.
What fundraising events would you like to see next? Have you got a brain tumour and want to talk? Any words of wisdom? Join in the conversation by using the comments box below or via our Facebook, Twitter and Instagram pages.