‘My mam is dying of a brain tumour in the middle of a pandemic’

The daughter of a mum dying from terminal cancer has opened up about how the coronavirus pandemic has made their their grief and distress even worse.

Wendy Kowalski, from Llansamlet, was diagnosed with grade four glioblastoma in February 2017. It is the most aggressive kind of cancer that begins within the brain.

It was discovered after Mrs Kowalski experienced numbness in her hand.

Her daughter, Natasha explained: “It started when my Mam noticed she was having trouble gripping things with her right hand. She was struggling to peg the washing out due to a lack of sensation.

“She saw the doctor on the Friday before February half term. He thought it was probably carpel tunnel syndrome but arranged an appointment the following week for additional tests.

“Then, on the Monday, I was dropping my son Alfie off at her house, as she was due to look after him while I went to work, and I as I was about to leave, her right thumb started twitching uncontrollably.”

Wendy Kowalski was diagnosed with a grade 4 glioblastoma (GBM) in February 2017, after she experienced numbness in her hand
(Image: Kowalski family)

Natasha immediately rang her father Stephen, a paramedic for the Welsh Ambulance Service, who was on duty at the time.

When she noticed that the right side of her mother’s face had dropped and she was slurring her words, she hung up and dialled 999.

Natasha said: “I started panicking but the emergency services call handler was amazing, talking me through what to do for someone who was having a stroke.

“Before I knew it, two ambulances turned up. One of them was my father, who had heard the call.

“Mam was taken to Morriston Hospital A&E, whilst I tried to find someone to have Alfie so I could go with her. When I got to the hospital about an hour later, she seemed fine. She was sitting up in bed talking and her face was no longer drooping. It was such a relief.”

The doctors decided to perform a CT scan to rule out a stroke before allowing Mrs Kowalski, aged 57, to go home.

Devastatingly, the scan revealed a mass in her left parietal lobe.

Natasha said: “As soon as the doctor came in and closed the cubicle curtain behind him, I knew it wasn’t going to be good news.

“It was really horrible to hear but somehow, Mam managed to stay positive. Her attitude has always been that this is something she will beat. She even named the tumour ‘Roger the Lodger’ to try and make it sound less intimidating!”

Miss Kowalski was given an MRI scan and then transferred to University Hospital of Wales in Cardiff, to discuss the next steps with a neurosurgeon.

On March 1, 2017, she underwent an eight-hour awake craniotomy to debulk the tumour and a sample of tissue was taken to determine her tumour-type.

Natasha said: “Before the surgery, we’d all been Googling to find out more about brain tumours and we were dreading the biopsy revealing that it was a glioblastoma (GBM), as that particular diagnosis comes with such a poor prognosis.

“Mam and Dad went to get results and that was when our nightmare became a reality.

“Finding out she had a GBM, which has an average survival time of just 12 to 18 months, was devastating.”

Following surgery, Mrs Kowalski, who has surpassed her life expectancy, underwent six weeks of radiotherapy at Singleton Hospital in Swansea.

She was then put on a course of oral chemotherapy, which was taken at home. Unfortunately, she was not able to return to her job in the civil service within the department of work and pensions.

Natasha said: “She is no longer able to drive and has to rely a lot on other people. It’s been tough for her to adjust. She used to be so independent.

“Her treatment has also left her with some long-term side effects, including focal seizures, twitching and problems with her speech and movement. It’s extremely frustrating for her.

“Mam has been scanned regularly and up until spring 2020, things remained stable. In May last year they unfortunately detected some regrowth, which was too small to operate on, so they put her back on chemotherapy.”

Wendy Kowalski pictured in hospital with her grandson Alfie
(Image: Kowalski family)

Mrs Kowalski is now on PCV triple therapy, which is a combination of procarbazine, CCNU (lomustine) and vincristine.

Procarbazine and lomustine are given in capsule form, while vincristine is given via a drip during a hospital appointment.

Natasha, 29, explained how the coronavirus lockdown had compounded problems for her mum.

“Mam’s latest scan showed that the tumour has shrunk marginally but she is on a high-dose of chemo and there is a limit to how much more treatment she can have. The side effects are extreme fatigue and a severe loss of appetite,” she added.

“She has been told to shield and hasn’t left the house since November, due to the pandemic, and it’s really difficult for her being cooped up all of the time. Personally, I have also struggled a lot and worry about her constantly. At first, we told my son Alfie that his nanny had a bad head but since the tumour came back and he is now nine years old, we’ve explained more about the seriousness of her illness.

“My mum is basically locked up in the house. That’s the hardest part. Pre lockdown she was able to go to Tesco or for a walk around Fendrod Lake, but now she can’t do those things.

“We can be in the same room together, but stay two metres apart. When my son was back and forth to school I was making sure that he was showered and got him disinfected before he went near my mum.

“I am going back and forth work too. We are living in the same house but staying in different rooms which is difficult.”

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Mrs Kowalski was given her dose of the coronavirus vaccine yesterday, something which has come as a relief for Natasha.

She said: “It does make me relieved, but from her stand point, it’s what she has been waiting for. She has struggled being cooped up in the house.

“For me, the whole situation still does not feel like it is actually happening. You hear about it affecting other people and you hear about it on TV programmes but you don’t think it’s going to happen to your family.

“I have sort of become numb to it. I am aware it’s happening but not accepting it’s happening.”

Determined to make a difference in her mum’s honour, Natasha is taking on the  10,000 Steps a Day in February challenge  to raise vital funds for Brain Tumour Research.

Steps can be completed however and with whoever participants like, ensuring they follow Covid-19 safety guidelines.

Natasha Kowalski with her partner Adam Williams and her son Alfie
(Image: Kowalski family)

Natasha said: “I’m doing this for my mam and everyone else who has been touched by brain tumours. In September last year I raised £700 by taking part in the charity’s Walk of Hope and I was inspired to continue fundraising for this important cause.

“When I originally signed up, I was still working in the office next to a lake, so I was planning to clock up the steps on my lunchbreaks. Now I’m working from home and juggling home-schooling, it’s not going to be so easy but I’m determined to reach my target every day and to raise vital funds to help find a cure for brain tumours. I’m hoping Alfie will join me on some of the walks too.”

Matthew Price, community development manager at Brain Tumour Research, said: “We were so sorry to learn about Wendy’s diagnosis and wish her all the very best with her ongoing treatment. Our thoughts are with her, Natasha and the whole family.

“We thank Natasha sincerely for signing up to take part in our challenge and will be with her every step of the way, helping to get us closer to a cure. Wendy’s story reminds us that brain tumours are indiscriminate; they can affect anyone at any age. We are determined to continue in our mission to find a cure for this terrible disease, to help prevent families like the Kowalskis from dealing with this devastating diagnosis.”

To donate to Brain Tumour Research via Natasha’s fundraising page, click here.

WalesOnline – Swansea