Up for the challenge (in more ways than one)

It’s been a while since I blogged about the tumour. Mainly, because there has been nothing new really to report. Also, because our world has gone coronavirus crazy and we have been in lockdown. As the parent of a super-active 4 year old, that has meant that I have been kept super busy since the end of March, that’s for sure! So for the last 3 months there have been lots of challenges related to that funny boney mass in my head. Living with a brain tumour during coronavirus / Covid-19 is a new one for everyone. Up for the challenge that coronavirus restrictions have bought upon us? Go on then.

University Hospital Coventry Main Entrance

MRI Scans in times of corona

My 6 month monitoring scan was due in June (since my last scans in November and December of last year). I was really worried whether it would take place or not due to hospital appointments getting cancelled and postponed left, right and centre. However, as it comes under the important category, it did go ahead. I’ve had to go to the hospital a few times since lockdown started, and UHCW have been super prepared each time. Temperature checks, hand sanitizers, one-way systems, they have it all covered. Their staff are friendly and have made me feel at ease.

I was glad that my MRI took place in Coventry rather than Rugby as I prefer their machine (less scary). I wasn’t pleased to discover that wearing a facemask under the headcage was mandatory. That definitely bought an added layer of claustrophobia! Deep breathing techniques were needed to quell any panic attacks.

What’s happening?

The scan has been reviewed by my 2nd opinion hospital, who have described it as ‘largely stable’. They also suggest to continue discussions of radiotherapy to prevent growth. I have a telephone appointment with my main neurosurgeon next Wednesday, so it will be interesting to hear what he has to say also. Obviously I am pleased to read the word ‘stable’ but am not quite sure what ‘largely’ stable is defined as.

I’d prefer it to mean completely stable, but I guess it is a reminder that it may well grow and to be prepared for that. I am anxious and worried abut that ‘largely’ tag though. In the meantime, it looks like it’s fine to continue monitoring as is though. Hopefully my understanding of that won’t change when I speak to my neurosurgeon next week, fingers crossed! As I mentioned before, living with a brain tumour is definitely a journey into the unknown! (Yes, we have watched Frozen 2 far too many times.) Good job I’m one of those generally positive people!

The pain game

I have got used to living with my headache pain, yet it doesn’t get any easier. I have had constant headaches every day since sometime last year. The stabbing pain in the back of my head greets me daily and the tinnitus bothers me. When I’ve been sleeping, and my head is tipped back, it all feels a bit crazy and uncomfortable. My head even felt like a beanbag the other day! My eyes are dry and blurry but I use eye drops several times a day.

The swelling of my eye has gone down though since I took the couple of courses of steroids earlier in 2020. But, my symptoms won’t magically disappear so I just have to get used to it. Take my painkillers when I need to and just accept it is part of my head. I don’t like to vocalise it all the time, as it is boring really to other people but sometimes it is a struggle. I wish the funny head would go away but looks like I have it for the long-run. Mostly, I wish I didn’t have to cope with it, but it could be a lot worse I guess. I did have a neurologist appointment booked for August to discuss best ways of managing my symptoms. Unfortunately I think this, unlike the MRI scan and eye appointments which have gone ahead, fall under the ‘non-urgent’ category. So, cancelled with no sign yet of a rescheduled appointment. We shall see! 

Holding out for our favourite hero: Brainstrust

Face-to-face meetups have been cancelled, so it has fantastic to have a weekly ‘virtual brew’ with Brainstrust staff and other brain tumour patients via Zoom. It has been so nice hearing how everyone’s been getting on and also sharing how we feel. If you have any questions or worries, they all put different spins on things. It definitely helps you think through things logically! It’s nice to see some friendly faces and also have a little bit of ‘me’ time to look forward to with people that truly understand. Spoiler alert. It may not always be tea in my mug on a Friday afternoon (but I can’t actually have an alcoholic drink in the evening due to my medication so don’t hold that against me!). Even though I am a zoom introvert, everyone is put at ease and really made to feel part of the Brainstrust family.

30 miles in 30 days – Run, Row or Ride (in our case, walk, scoot or ride!)

As you know, I am super-keen on fundraising for Brainstrust – both to raise vital funds to support their work but also to raise awareness of the charity in general. I was pleased to discover that they had a challenge set up for June called run, row or ride. It involves travelling 30 miles however you like in 30 days. I thought it was a perfect excuse to get out for our ‘daily exercise’ and give me and Little C a challenge to do. Well, I’m pleased to say that Little C and I SMASHED our target and travelled 42 miles in total.

We’ve enjoyed walking, scooting and riding our bicycles together in our local area. We have  spotted butterflies, fed ducks and explored castles along the way. It’s been a nice, healthy way to spend time with the little one during lockdown and also raise money for charity. We have raised £200 to date for the Run, Row, Ride challenge which bumps the grand total of money raised for Brainstrust to £883! If you wish to donate, please do visit my JustGiving pages ‘Em’s Fundraising for Brainstrust’ to find out more.

What’s next?

As mentioned earlier, I have the phone appointment with the neurosurgeon next week so we can form a plan for the next 6-12 months. I have eye appointments lined up for the Autumn, and in the meantime it’s just a case of just keep plodding along. We have the summer holidays coming up, it is the last one before Little C starts primary school so we will be making the most of it! Big C and I continue to think about planning our wedding. I plan to find some employment too when the little one goes to school. Hopefully, the job market won’t be too patchy – we will see.

I am also keen to do some more fundraising similar to Spring’s fundraising events. I have lots and lots of hats, gloves and toys to sell. Unfortunately, an indoors charity event isn’t looking very likely right now due to that pesky virus. I may have to set up a stall outdoors in our local area or look at selling on facebook and ebay. We can do this though! I have put some pictures below of some of the wonderful things I have to sell, if you are interested, please do get in touch with me. So lots of things to keep us occupied and our minds on positivity. Most of all, I am looking forward to a summer full of fun, family and friendship!

Thanks for reading!

If you got this far, thank you for bearing with me whilst I spill my thoughts! Sharing is caring as my little one says. If you would like to donate to Brainstrust, check out my JustGiving pages. You can also visit the Brainstrust website to find out more about their work and also get help if you or someone you know if suffering from a brain tumour. In the meantime, stay safe and speak soon. If you’d like to say hello, do leave a comment below or join the conversation on our Facebook, Twitter and Instagram pages.

5 thoughts on “Up for the challenge (in more ways than one)”

  1. Just heard you on the radio… wishing you all the best in the fight with your “funny head”. Stay as positive as you are !!! Sending a hug from a breast cancer survivor 🙂 Julie Holmes

  2. Thank you for sharing your personal story. I have a 3 year old and it has been hard enough being at home with her during lockdown, let alone adding a brain tumor on top of it. I hope your follow up appointments went well and look after yourself x

  3. Well done on smashing your target! I can’t even begin to imagine what it is like to deal with this going on even during normal times so to deal with it during a pandemic must be so difficult. I admire you and your bravery and hope you get your appointments soon x

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