Back in 2023 when my brain tumour was first discovered, the neurosurgeon I saw said they weren’t sure what type of tumour it was, but best guess was a non-cancerous tumour called a meningioma. The medical team all agreed that it was unusual, not showing up on the scans the way they would expect, but not growing at the rate they would normally see in cancer.
Sadly, it turned out not to be a meningioma at all, but a rare grade 3 cancerous tumour called an oligodendroglioma. They told us this a week after surgery once the results of testing were back.
It is classed as an incurable cancer, but treatment should buy me another 10-15 good years. Without treatment, I’d have a couple of deteriorating years at best, but this type of tumour is known to respond very well to intensive radiotherapy followed by chemotherapy. So I’ll endure the horrible side effects and try to come out of the other side with as much grace as I can muster.
The surgery was ten hours and left me with some brain damage that translates into physical disabilities. I was completely paralysed down my left hand side initially and couldn’t even change position in the bed without assistance. I can now walk short distances with a stick, but need a wheelchair for anything lengthy. I’ve surrendered my driving licence until I’m through this and certified safe to drive, but on the plus side, we have a disabled parking badge which has been such a lifeline.
Radiotherapy to the brain is a delicate operation that has to be accurate to fractions of a millimetre, so you cannot move during treatment and have your head locked down to the treatment table in a custom made mask. The mask fitting is done a couple of weeks before treatment starts, you have a scan while wearing it then the oncology team set up a completely custom programme to target the remaining bits of tumour. They know they will get some healthy brain tissue as well, but the brain has the capacity to recover and the cancer cells shouldn’t. Out of all the cells in the body, brain cells are just about the slowest to regenerate, so it could be a year or more before there is any obvious improvement.
My radiotherapy began in the middle of July. 33 daily sessions of radiotherapy, Mon-Fri for six and a half weeks. This was at the cancer centre in Edinburgh (Western General) so it was a 5am start on a Monday to drive up and stay in Edinburgh 4 nights and drive back home on a Friday. It was tough being away from home during that, but we had some truly heartwarming help from friends – looking after the cat, clearing a forest of weeds and giving the house a good clean.
The first few weeks were incredibly hard – I had not reacted well to the mask fitting and had to have a mild sedative to help me cope at first. But I persevered and the team were incredibly kind, patient and encouraging and with their help, I got through it. However, as well as the left sided weakness, the treatment added loss of sensation all down the right hand side of my body! From scalding my tongue to stubbing my toes, I’m having to constantly risk assess my environment! Whether that will improve is an unknown, but again, it will be very slow, so I just have to be patient.
I brought the mask home and originally planned to destroy it, but towards the end of treatment my feelings began to change and instead of destroying it, I am planning on transforming it into something beautiful instead. I have some ideas involving felting and embroidery, but don’t have spare energy just now, so shall let ideas percolate until I’m ready.
We then had four weeks downtime at home and got to celebrate Adrian’s big birthday. I managed to organise a very small gathering of special people at his favourite cafe. He was thoroughly spoiled with cake and presents so he was a very happy bunny.
Chemotherapy started at the end of September and is every six weeks. The cycle starts with intravenous drugs and oral tablets at hospital followed by 10 days of tablets at home. For the first four days, they also pep you up with steroids and anti-sickness drugs and give you a list of foods to avoid as they might cause a dangerous reaction. You won’t feel like eating anyway as everything tastes wrong and gives you heartburn and indigestion. To help you cope with this toxic cocktail, your GP will open the special laxatives minibar to help you find a counter remedy to the inevitable constipation. It’s miserable and exhausting and feels like it will never end.
You also have a bonus packet of emergency anti-sickness pills and if you should need emergency treatment, you have a bright orange fast pass through A&E as you are at high risk of sepsis if a germ so much as flutters its eyelashes at you!
So I’m in the middle of cycle two at the moment and my next cycle should start on 22nd December just in time to take all the pleasure out of festive eating – heigh ho! Unsurprisingly, we’re having a very quiet Christmas this year and won’t be socialising much.
Through all of this, gratitude is my life raft. Remembering just how much I have to be thankful for keeps it all in perspective. My family have been amazing, my friends are awesome and Adrian is my absolute anchor and soulmate and he is just the best support I could ever wish for.
I’m grateful I have the full use of my hands, my most precious creative tools, and crochet has been a really good physical therapy to get things working properly. (I recently finished this jumper and have started on another – details on Ravelry.)
I know I’m not the only one on this journey and I send all my love to you if you are affected by cancer in any way.
Glenda xxx
You are very brave Glenda
I know you are quite a bit younger than me but we are both on a cancer journey tho yours seems a lot more drastic than mine
Take great care my friend sending big hugs x
I didn’t know Evie, I’m so sorry to learn that you’re going through this too. Sending you a massive hug, xx
Oh Glenda, what an awful journey you’ve had to embark on. I’m so glad that you have Adrian , good friends and family to help you through this process. May the future be kind to you and time will hopefully be the bringer of better health. Thinking of you, take care.
Sally
Thank you Sally xx
I am in awe of your resilience and you are simply incredible! I will always remember your warmth and your wonderful creativity, when we visited you – a good few years ago now. It was when Adrian had the forge in the outside garage / workshop, and my husband spent ages talking with him and watching him work. For me, I loved looking at your incredible pieces in your home.
I hope your recovery continues positively and that you will soon be able to share a large glass of something nice and strong, with Linda!
Aw, thanks Vicky, I’m looking forward to better times ahead.
Hi Glenda, it’s so good to hear from you even though it’s horrible news, I was so looking forward to calling in at your studio this year as we were on holiday in Sandhead, I used to come to your classes when you had Graphicus at Etherley, so I’m afraid I blame you for my love of card making and also the amount of products and money spent on them !!!!! 😱😁😁😁 my husband blames you for that bit.
I really hope things progress quickly for you and I know Christmas is going to be a no show this year but with lots of love and prayers sent your way, and the care from Adrian we can look forward to good news from you next year.
Sending all our love and best wishes
Sorry to miss you Sharon, but do get in touch if you’re up here on holiday again.
What an ordeal, Glenda. Your courage is inspiring and I can only wish that the treatment is not too punishing and that time passes a bit more quickly for you during this difficult phase.
Thanks Linda, with winter well and truly here now, it feels like I’m hibernating and that’s fine with me! I can enjoy all the cosy things – books, jigsaws, games and crochet! I’ll get back to painting at some point too. xx
Dear Glenda- I’m so sorry that you’re going through such a dreadful time. But how wonderful to still have your creative tools to sustain you- and your lovely Adrian too of course! A positive attitude and daily gratitude will surely help too, and I feel sure with good friends surrounding you the future will be brighter. I hope you’re feeling the love ! 😊. Get well soon lovely lady.
Thanks Janet, I am definitely feeling the love from so many people, it’s keeping me going for sure! xx
I am so very, very sorry to hear this Glenda and send all love to yourself and Adrian – I just know what an awful time you’re having. The only thing I can say is that the treatment does get over and while it’s ongoing just tell yourself that it’s killing those wretched cancer cells, I know that helped me.
Make something beautiful from your mask, you’re the best person to do that – try to remember it’s great role in your life…
I wish you all the strength in the time ahead and send all my love and best wishes. xxx
Thank you Barbara, I’m definitely grateful to the mask and will enjoy the process of transforming it. xx
oh Glenda. Just so much to cope with but sometimes we are stronger than we ever imagine we can be ….. as you are being now. Sending love to you x
I thi k of you both often. Your liveliness, graciousness and kindness impacted my life from the moment I met you both. Holding you in love as you move through to health again. ❤️
Hi Glenda – thank you for your email and I’m so sorry to hear your news.
I know some of what you are going through, as I have had several lymphoma, for which I had both radiotherapy and chemotherapy. I also had a moulded plastic mask to wear, as the first lymphoma was behind my left eye. Mine is vivid green and, like you, I plan to transform it at some stage. For my other lymphoma which were in various parts of my body I had chemotherapy as one was very close to my lymph gland, but mine was intravenous five days a week for 14 weeks, so I can empathise with the nausea and not being able to eat and the massive lack of energy. The PET scan I had some weeks after showed that all the lymphoma had been eradicated, but there is always a chance that others will appear, so I have three-monthly blood tests, followed by consultations to keep a check on things. It has taken me two years to get back some strength and energy but, apart from still tiring quite quickly, I feel more myself now and some days are better than others.
Good that you are able to use your hands for crochet and that is the one thing that I can do in abundance. Other crafts have taken a back seat for the time being, apart from the odd hand-made special card for family members.
May you continue to recover well ……and sending healing vibes your way.
Love Chris xx
You will be forever in my heart for inviting me to visit you and beautiful Scotland. You made me feel so welcome and cared for. I would repay you in good health and an easy road to recovery if that was even possible. Good people deserve good things. Sending my love and a round of applause for your bravery and positively. 😘
Crochet on!
sending you tons of love Glenda xxx
My husband went through a cancer journey so I know how hard it can be. The treatment can be awful but in the end well worth while. Keep fighting, all the very best.
I can’t begin to imagine how I would react to your situation. I think your positivity and resilience is amazing and I wish you all the very best for your continuing journey through your treatment. Please know we are thinking of you and will keep you in our thoughts and prayers.
I am so sorry to hear this Glenda, stuart and I are sending you all our love and best wishes to find the strength I know is inside you to get through this difficult road ahead.
Glenda, lots of love to you both at this horrible time. So pleased to hear that you’re able to crochet, that will be helping enormously with it all. Just keep pushing forwards and know that everyone who’s met you and been influenced by your skills and talents are rooting for you. And you will make something beautiful out of that mask when you’re up to it. xx
Warrior with a smile and positivity. Love you loads. X
Hello Glenda, You are one strong lady, I can only imagine how life changing and hard life is for you. It’s wonderful that you are feeling inspired creatively, I love your jumper😊. I also am on a cancer journey so have a little understanding about changes and not really having choices, I lost all my hair so I’m completely bald now due to the chemo therapy. I am sending you lots and lots of hugs and hope you get to feel better very soon. I am also an artist and having the use of your hands is a blessing, I hope your creating brings you joy as it is great therapy. Xx
Oh Glenda you are so brave I could not have coped with the mask.
I am glad you have the use of your hands and your jumper is wonderful love the colours.
I am sure you have the strength to cope with everything and you will be in my prayers.
You are such a talented lady and I bet the mask will be fabulous when you get around to it.
I wish you a happy Christmas God bless you and your family xx🙏🙏
Hi Glenda, I am so sorry you are going through such pain and being so uncomfortable. I wish you better times ahead, so glad Adrian and friends are there for you..
hello Glenda
I am so sorry that you are having to go through all this but can tell that you have a very positive approach. I went through surgery and radiotherapy five years ago for a mouth cancer which was at stage 3 and had spread to lymph nodes. I also had to endure the tight head mask torture. It all seems very primitive doesn’t it. I have ended up being on permanent PEG feeding as I can’t swallow and quite severe speech problems but this is nothing in comparison to what you are going through. I hope your chemotherapy is not too onerous and that you start to feel much better.. Onwards and upwards. Sue xxx