By Natalie Wilkinson Edwards
The last time I interviewed Veronika Guardi was about her life as a fashion designer and the values she holds as a brand owner. We had built the foundations of a good working relationship until suddenly, Veronika disappeared. I knew something wasn’t right. Veronika was one of the warmest and most conscientious people I’d worked with to date. Several weeks went by, so I contacted her one last time. The response I got was not at all what I expected.
‘I’m sorry I haven’t been in touch, I have been diagnosed with bladder cancer - I would still love to work with you, let me come back to you.”
This isn’t something you expect to hear from a 33-year-old woman in the prime of her life, with 2 young children in tow. Then again, when do we ever expect this news?
A while later, Veronika reached out to me and explained her desire to get the story of her diagnosis out there. She was confident and in no way indulgent, nor playing the victim in this. The message was clear; Veronika wants this article to raise awareness and give readers the strength to fight to be seen and heard. It is important to note that Veronika started by telling me this cancer could have been diagnosed nearly two years ago. Had she not been pushed to be seen, eventually by a private consultant, it is more than likely I wouldn’t be writing this article at all.
After giving birth to her youngest son nearly two years ago, Veronika was consistently diagnosed with urinary tract infections (UTIs). After countless visits to the GP, she was prescribed numerous courses of antibiotics to treat the ‘infection’. Eventually, managing the discomfort and pain became too much and the decision was made to contact a private consultant who arranged an immediate cystoscopy, which is the most, if not the only efficient way of detecting bladder cancer. The cystoscopy showed a huge growth in Veronika’s bladder, which she could plainly see whilst being examined.
Her consultant was lost for words, yet reassured Veronika that she was far too young for it to be cancer and that it would hopefully just be debris that they would remove. The next stage involved ‘transurethral resection of bladder tumour’ surgery (TURBT), a non-invasive day operation to remove any debris/cancer etc in the bladder. This surgery proved challenging. Veronika explained that the consultant attempted to scrape the growth away, however, it seemed to be ‘never ending’ - meaning he had to stop scraping before damaging the wall of the bladder itself.
Follow-up scans showed that the tumour had grown so much that it had enlarged Veronika’s bladder significantly, which explained the level of pain she was in. The scans and biopsy reports from the surgery showed that at the time, Veronika had an aggressive form of stage 3 bladder cancer, which was muscle invasive, meaning it was dangerous and could spread to the surrounding areas. Time was crucial.
The time between meeting her consultant for the first time and being diagnosed, was two just two weeks. The consultant made it clear that despite Veronika being young, female and in no way the usual stereotype for this illness, there were clear markers that should not have been ignored. The private hospital in Norwich had done all it could at this stage. Veronika’s case had to be moved to an NHS hospital to receive radical surgery to remove her bladder. Initially, Veronika was offered preventative chemotherapy, which she declined and went straight for surgery. She explained to me this decision was made using her intuition; a really strong gut feeling. It later transpired that this was the right course of action to take as the type of cancer Veronika has does not respond to chemotherapy; nobody could have known at this stage as it was impossible to predict.
On October 1st, Veronika underwent life-changing surgery to treat the cancer, known as a ‘radical cystectomy'. It took over 9 hours, involving a hysterectomy (removal of uterus and cervix), reconstruction of illegal conduit urinary diversion (more simply known as a stoma) and full removal of 43 lymph nodes. During this procedure, a ‘Da Vinci’ robot was used, however eventually resulted in the need for open surgery due to the sheer size of the tumour.
Veronika’s determination to find humour throughout the darkness never fails to astound me. During recovery, Veronika shared a ward with 5 other women, all of whom were 70 years plus. She explained that one night at 3 am, one of these lovely ladies, right next to her, felt the need to go tap dancing and started trying to get out of bed when the nurses weren’t watching. Veronika found herself showing YouTube videos on her phone of famous tap dancers in the early hours to comfort her ward mate, not dissimilar to consoling a toddler when having a tantrum. She described feeling very different to the other patients, her age was such a dividing factor and recalls how her young son found it very difficult to visit her in the hospital, seeing his beautiful mother in a ward not meant for someone so young. He said, “everyone is too wrinkly,” and promptly decided it was best to go home.
I asked Veronika if the hysterectomy would push her body into early menopause. The surgeon decided to keep two ovaries to avoid this. Veronika explains that dealing with cancer and adjusting to a stoma is quite demanding, let alone dealing with menopause aged 33, so she is exceptionally grateful for that decision. Largely, Veronika has recovered brilliantly from the surgery and in my opinion, looks fantastic. During our video call, she joked about how her hair is shorter, and how she looked tired. I could see a beautiful, determined and impossibly strong woman, with big hair, a heart and smile. Sadly only a few days after our interview Veronika and her husband received the unthinkable news that shortly after the surgery, the cancer was back in other parts of her body. It was aggressive and incurable. In other words; terminal stage 4 metastatic bladder cancer. Yet still, we see a woman, raising her children and running a business. Veronika says her work has been a creative form of therapy. Designing, finding fabrics and keeping her dream alive have kept her feet on the ground and an outlet for the overwhelming emotions that come with this news.
She had been diagnosed with Urinary Tract Squamous Cell Carcinoma (UTSCC). Unlike Transitional Cell Carcinoma (TCC), which 95% of bladder cancer patients have and it’s fairly easy to treat. Veronika fell into the rare 5% of people with bladder cancer which does not respond to chemotherapy, has a high rate of reoccurrence, and is extremely aggressive. Still, out of hope for anything that would slow down the current rapid spreading in her body, Veronika recently went through one cycle of chemotherapy. She explained it made her feel terrible and made her think about the quality of life over quantity. Veronika was offered to take part in a brand new immunotherapy trial at UCL, which she understands it’s not going to cure her cancer, however if it’s successful - it may prolong and provide her a with good quality of life in the meantime. She is currently having an infusion once a month amongst many other radiotherapies and appointments to keep her as comfortable as possible.
She went on to say, calmly and directly,
“My children are so young. They are so little, I cannot just leave them. I have to find a way for my parents. For my children. For my husband. To keep going for as long as I can.”
When I asked Veronika how she felt towards the NHS, she resolved that she didn’t feel personally discriminated against. She simply feels such frustration that her situation could have been avoided.
“So many things are irreversible. The stoma, and the hysterectomy, all at 33 years old. People are very proud of needing a stoma and understandably so. But a stoma is very difficult to accept emotionally. It all could have been avoided. It takes time to adjust to.”
It is important to note that Veronika is hugely supportive of the NHS. The pressures they are facing had a direct result on her care, which is in part responsible for the misdiagnosis she has experienced. Veronika mentions she felt that the NHS are unable to treat patients holistically as individuals. They looked at her age, gender, and location and didn’t consider that this type of cancer could be an issue. As a result, there was no aftercare following on from her supposed UTIs. The message Veronika wants to get out here is, do not wait for someone to call you back. The NHS simply does not have time. Call them. Chase them. Listen to your body. Do not sit on the sidelines.
During our surreal, yet poignant conversations, Veronika and I have reflected on why we wait until devastating news hits for us to make a change and evaluate our lives. It seems nothing short of tragic, that we so easily slip back into old patterns as the news fades into the past. This news has left Veronika with only one option; to focus on the present. She is fiercely determined to live life to the fullest, creating milestones to meet such as her son’s second birthday in February. Which she did- hurrah! (Happy 2nd Birthday Francis.) The next milestone is Veronika’s own 34th birthday in April.
The determination radiates from Veronika whenever I speak to her, it is something to behold. Veronika recalls the moment in ‘Love Actually,’ when Emma Thompson’s character discovers her husband is having an affair, cries, wipes her tears and puts on a brave face to take her child to play the part of ‘lobster’ in the Christmas Concert. In reality, one morning at 9 am, Veronika was speaking with palliative care consultants about her end-of-life care arrangements and pain management. By the afternoon, she was keeping the promise to her son that she would watch him in his nativity play.
“I am not even thinking about myself here, it is 110% for them. I do not like to play the victim - that is not an example I want to set for my 6-year-old. He tells me, ‘Don’t get give up, Mummy!’ There are no flies on him.” He measures my temperature every day, he knows what mummy is going through, however, we haven’t shared any prognosis with him just yet. It’s the toughest conversation to have if at all so we want to make sure the time is right.”
When I spoke with Veronika last, she explained that she had attempted to write a letter to her children. “I wanted to write to them, letters for them to remember me by. I just couldn’t breathe.” Motherhood does not stop for cancer until there is no other choice. Veronika’s unwavering optimism and gratitude dumbfounds me. “It might sound awful, but in some ways, cancer has made my life better,” she explains. The level of support and love, not just from close friends and family has been incredible. More than this, Veronika explains the diagnosis is a ‘sharp slap’ that has forced her to review her perspective of life.
This time last year, Veronika wasn’t making time to eat, or sleep or spend enough time with her children. Cancer has shifted Veronika’s life for the better as she had lost the focal point of what was important, whilst spinning too many plates.
Now, in her own words, Veronika says she has ‘time to look up and breathe'.
She is enjoying the little things in life, focusing on doing what she truly loves and taking every day as it comes.
She continues to make beautiful new clothes for her own fashion label GUARDI, even with a terminal diagnosis. Veronika is donating the profits she makes to a local cancer charity and being proactive in every way she can.
Veronika’s brand called GUARDI can be found here https://www.guardiworld.com
@guardiworld
Veronika’s chosen charity is The Big C
@bigccharity
Veronika’s personal blog