My name is Danielle Howard. I am 38, a single mum of a 9 year old daughter, Eliza and I have a Glioblastoma (grade 4 cancer) which at the moment is incurable. It is inevitable that it will grow back. It is aggressive when it does.

Look up the statistics - they are too scary for me to write here.

Background:

In April 2023 I started to have symptoms I initially thought were panic attacks, and was misdiagnosed with anxiety. I couldn’t concentrate properly or find my words. I have since been told this was Aphasia related to the tumour in my left frontal lobe.  Eventually I went to A&E with weakness down my right side  and they dismissed me again saying I needed to take antidepressants. This went on from April to 15th June 2023 when I paid privately for an MRI. My symptoms by this time were significant and I had had to stop work. When I got the results I was told by my GP it was a “Cyst that has been slow growing but has now got large enough that it could account for my symptoms - non-cancerous growth. Referred to St George’s hospital.” The size of the cyst was so big it had shifted the midline of my brain. Finally I was diagnosed with a brain tumour alongside the cyst. The only question was – what type of brain tumour?

I had surgery on 29th June 2023 to debulk the tumour and remove the majority. On 14th August molecular testing confirmed I had a glioblastoma grade 4 – the most aggressive forms of brain cancer. So, in September 2023 I embarked on a gruelling regime of 6 weeks of radiotherapy and chemo pills and then 6 months of just the chemo pills.  Since April  2024 I have been chemo free. I returned to work end of November 2023. There were certain aspects of my job that I initially struggled with but I think overall I have done well to come back in the same role.

On 28th February 2025 it was confirmed my tumour had started regrowing.  I have a further surgery scheduled for 8th April 2025, will be offered 10 sessions of radiotherapy and 12 months of chemo . My daughter Eliza is worried about how tired I will be with 12 months of chemo but she is not worried about the surgery at all because of how well I did before. So that’s good. And makes me feel more positive.

This time the main tumour is growing against my motor cortex so would affect my dexterity and motor skills down the right side if they tried to remove it.

They will do molecular testing at the same time which will tell me how aggressive the tumour cells are and whether the tumour has become chemo-resistant.

My oncologist believes this will put me in a stronger position for the radio and chemo to be more effective.

I understand this is possibly my last chance to have surgery and to have a positive outcome.

Main aims: this money will only be used should I not be in a position to return to work OR left for my daughter, Eliza.

I love being an Audiology Team Lead at Frimley Park Hospital- it is one of my proudest achievements (apart from being Eliza’s mum). I am concerned that eventually I will not be able to go back to work in the same capacity. This has not happened yet and hopefully will not happen for a while but I am preparing myself for that eventuality. I am worried that each surgery will affect my ability to do my job.

At the moment, I think everything the NHS are doing for me is enough and want to thank them for it. If some research-based experimental treatment becomes available then I may use the money for that. But only if the evidence is good that it is likely to work. I want to spend the time I have left close to my daughter.

Obviously, I keep hoping as time goes on for a cure for Glioblastoma.

This is why I am asking for your donations. 

Thank you.

Danielle and Eliza

Update:

I am now just short of 6 weeks on from the surgery and spent a week and a half at St George’s Hospital and then just over a week at Frimley Park Hospital.

When I woke up from the surgery I was paralysed down my right side. On Saturday (5 days later) I was worried I was going to be paralysed forever. I was starting to feel numb which I had not experienced before.

On Sunday evening I moved my right thumb for the first time and 24 hours after I could lift my hand and arm above my head. I have had a battle to regain my independence even now I am not fully independent and I am so lucky to have my mum with me ❤️

I had focal seizures for 2 days and have been diagnosed with epilepsy until they increased my anti-seizure medication.

My oncologist showed me my post-surgery MRI scan to explain why I had ended up with right-sided paralysis. He suggested it could be a mini-stroke or some restricted blood flow thing that caused my right-sided paralysis.

They are going to delay the 10 sessions of radiotherapy whilst my brain heals because it could cause more swelling and stop any improvement. The radiotherapy could be delayed indefinitely. The next MRI scan will be in a months time and will see the oncologist. Then he will let me know about the plan for 6-12 months of chemotherapy.

He said that debulking the cyst and tumour through the surgery has been the right thing to do and St George’s did a good job although they need to do a further scan which will give him more information.

I still am not moving my right foot so that is taking some time to come back and I was warned that it may not come back which is a bit of a worry. I just have to remember how far I have come in just under a month. I have to currently think about everything - every process - nothing is automatic. I miss this but will always remember this time and appreciate how far I have come and how for people who have permanent paralysis or use a wheelchair full time I now empathise with you. Everything is so much more difficult - the pavements uneven, getting dressed, carrying any hot drinks, getting in the shower, people parking on the pavement etc. Hopefully I will carry on improving but some people are not in the same position as me.

I said at the moment I feel like I can handle anything 😁 after everything I have been through I feel 6-12 months of chemotherapy will be a breeze.

I am feeling tired - it is surprising how quickly my body has changed but I was strong going into the surgery and walked into the surgery and now I struggle to do more than 500 steps!

I am so grateful for all your supportive messages 🙏 they help a lot 😍🥹