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Coronavirus reports – Part 8: “Going into hospital was an extra layer of stress and anxiety”

by Keyan Milanian | Analysis

18 December 2020

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Jan on a walk with her family
Jan on a walk with her family

We caught up with people living with cancer across the country, to find out how the coronavirus pandemic has been affecting them and their families.

Jan: “It has been a roller coaster journey”

Jan was diagnosed with breast cancer in March 2020, at the height of the confusion of COVID-19. “I spotted an indentation on Sunday 1 March when I was going to bed. I Googled a few sites and it was clear what it was straight away. First thing the next day I booked a GP appointment for that evening and then I went to work.”

After being referred, Jan had a 10 day wait for an appointment with a consultant, which Jan describes as “a horribly anxious time”.

Jan was diagnosed with invasive breast cancer and had surgery to remove the tumour within a week.

Jan during her chemotherapy treatment.

Jan during her chemotherapy treatment.

“I had to go in for the operation on my own, and the anaesthetist said that I would still be in the theatre when I woke up, so that they didn’t have to move me between rooms,” says Jan. “I had a wide local excision with reduction and reconstruction and was relieved to hear afterwards that there were clear margins, so I did not have to go back.”

Jan’s surgery was done privately, but the chemotherapy following her surgery was done on the NHS. “This started six weeks after surgery. Before that started, I did not have much contact with the team because of COVID-19 – they were not able to check the wound. Initially I could not see the physio either, but then I was allowed to meet them, to make sure that I could do the exercises correctly at home.

“I did get through it all, but I do worry about what would have happened if I had found the lump one or two weeks later – I don’t know if I would have had the same treatment.”

Jan has completed her radiotherapy but is still having Herceptin, with the next round scheduled for Christmas Eve. “I have another year of monthly chemical menopause injections, and have started 10 years of hormone therapy treatment too – I am on aromatase inhibitors for 5 years, then tamoxifen for a further 5 years.

“I feel grateful to have been operated and put on chemo so quickly,” says Jan. “The whole experience has been a shock  and I am so grateful for research. ”

Jan highlights the importance of friendships in these difficult times, “I am an ex-regular Army Officer of 13 years. I had very similar timelines to my friend Charly who is also ex-Army and was also diagnosed with breast cancer this year. Her friendship has been so special at this time and we are in touch all the time.”

Toyin: “COVID and the restrictions have made things more difficult this year” 

Toyin was diagnosed with triple negative breast cancer the week before her 28th birthday.

“I was feeling my breast, as you do, and felt that a lump was just there. It was quite evident, but I’d never noticed it until then.”

The following day, Toyin went to her GP to get it looked at. The GP advised that because she’s young and has no history of cancer in her family it was likely to be a benign breast tumour and nothing too sinister, but referred her to a breast clinic a week later.

Toyin during her treatment

Toyin was diagnosed with triple negative breast cancer when she was 27.

Toyin had a similar experience at the clinic, with the doctor only briefly touching on cancer, “it was not the majority of the conversation”.

A week later, Toyin was called back to the clinic where she was met by the same doctor. It was then, in June 2020, that Toyin received a full diagnosis. “I really wasn’t worried about the appointment, so it was a real shock to be told I had breast cancer.”

Before starting treatment, Toyin went through a round of IVF to freeze some of her eggs, so that she’ll have the chance to have children in the future. “They managed to get 14 eggs, which was really good.”

By mid-July, Toyin had already started her chemotherapy. “COVID-19 and the restrictions have made things more difficult this year,” Toyin adds. “The saddest thing is not being able to have my mum and sister to attend chemotherapy or appointments with me. They wanted to support me and I wanted their support.

“I had chemotherapy in a “chemo bus”, which was in the hospital car park. My mum came with me, but she wasn’t allowed in. She was outside in the car park, and I could see her walking around and she was upset, and that was hard. My twin sister wanted to be there too, so it was really isolating that she could not be.”

After a few weeks of chemotherapy, Toyin could feel the lump shrinking.

“The most severe side effect I felt was itchiness on the soles of my feet and I had hyper pigmentation on my face. I had all of my energy and was even able to go out for meals and continue working.”

Toyin only stopped working in October 2020 when she started her next 4 cycles of chemotherapy, which were a more aggressive cocktail of drugs. “The fatigue of everything this year has hit me. It’s beyond comprehension and it will take some time to get over.”

Toyin set up a You Tube channel shortly after her diagnosis. “I’m a very shy person, but also very bubbly and I think a lot of people need to know about breast cancer.”

She wanted to do something outside of her comfort zone and to get the message across that cancer does not have to be a negative experience and it’s not all about death. She is keen for people to see the positive side of her journey and to connect with others who are going through a similar journey.

“The main message I want to get across is that even though I’ve been diagnosed with cancer, I believe overall it’s mind over matter and I want people to know this and keep positive. If you get diagnosed, there is nothing you can do about it but get on with it and try to maintain a positive outlook.”

Matt: “The care and attention I received from the NHS staff was amazing” 

Matt, who is 55, from London, was diagnosed with bowel cancer in May.

Matt in hospital during his treatment.

Matt in hospital during his treatment.

“I was probably fitter than I had ever been in the last 25 years,” says Matt. “But in mid-April, I started having stomach problems and losing weight.

By mid-May, Matt had lost over 10 kg, and his family insisted he visited the hospital. The first time he visited the medical team thought it might be COVID related but with no improvement three weeks later he visited A&E again . “The medical team sprang into action – taking blood samples, chest X-rays and monitoring my blood pressure, all things COVID related. That was until a third doctor suggested an MRI scan and further bloods to look for other clues.”

Matt was advised to stay in hospital overnight to prepare for a colonoscopy.

“I was woken by a doctor at 1:30am to tell me the results of the MRI. He was of the view it could be cancer but could not tell me much more,” he says. “At this time, visitors were not allowed, I didn’t want to phone my wife Stef at this time of the night, so I sat up alone.”

After running through the procedure with a surgeon, Matt was taken into the operating theatre. “I counted 15 people in attendance, and I hoped this was because COVID-19 meant an operation proved exciting, rather than the seriousness of the case. After almost 5 hours, and the discovery and removal of the tumour, the operation was complete.”

Matt stayed a further 11 days in hospital, spending time in intensive care before he was moved onto a main ward. “Hospitals were strange and lonely places during this period as no visitors were allowed, but the care and attention I received from the NHS staff was amazing.”
When Matt was finally discharged, he was taken down to the entrance of the hospital in a wheelchair to see his family. He hadn’t seen any of them in 12 days. “The shock for them was palpable, especially as this was almost exactly a year to the day since I lost my sister Harriette to cancer.

“Over the last 3 months I have begun my recuperation and rehabilitation, with the love and help of my family, and it’s going extremely well.”

Matt was given the ‘all clear’ in July and won’t require any further treatment. “When friends and family have asked me how I feel about my experience and brush with mortality, the answer is I feel incredibly lucky. I am extremely thankful to the doctor who insisted on the MRI that spotted the tumour, and to the skills of the brilliant surgeon and his team.”

Hayley: “It feels like I am just waiting and waiting” 

Hayley, from Ossett, was diagnosed with bowel cancer when she was just 34 years old, and shortly after she given birth to her daughter Avy-Rae. 

Hayley has Lynch syndrome – a hereditary genetic condition that increases her risk of bowel cancer – and was being monitored. “As part of that, I had a colonoscopy in August 2019. It was the first one I had ever had and they found something straightaway. I was fast tracked and diagnosed in September 2019.”  

Hayley wearing a mask during her treatment

Hayley was diagnosed with bowel cancer in September 2019.

She started on a course of chemotherapy and radiotherapy in October, which she finished in November. But her treatment didn’t end there.  

After scans showed that the tumour had shrunk in size, Hayley underwent surgery that included a full hysterectomy. “I was also given a colostomy and fitted with a stoma, which was due to be reversed in June.”  

Following her surgery, Hayley underwent a further 4 months of chemotherapy, just as the first lockdown began in the UK. “They did ask me whether I wanted to carry on and I said yes. It was a strange time and it was not nice not to have anyone with me. I had side effects like losing feeling in my hand and it was harder to speak to staff. They were all amazing, but it was difficult and I was glad to finish.”  

Due to the disruptions to healthcare services as a result of the pandemic, Haley’s stoma reversal was suspended. “My experience is that the communication has not been good. I did get an appointment in August and saw my consultant, but I have had to chase appointments and I just wanted to hear more about next steps.”  

Hayley describes the difficulty of having a young baby while dealing with the pain and discomfort of having a stoma. “I need certain procedures to happen to see if it can be reversed and it feels like I have just been waiting and waiting. I have just heard it could happen in the next four to six weeks and I really hope it will.” 

Keyan Milanian and Tom Bourton who work in our media volunteer liaison team at Cancer Research UK

Thanks to Jan, Toyin, Matt and Hayley for sharing their experiences with our Media Volunteer Liaison team.

If you would like to share your story with us, please visit our website. And if you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.