In Sickness and in Health

 It’s the most common form of cancer in the uk with one in seven women affected…Seven may be a lucky number for some, but not so lucky for my cousin Jo Spickett, age 49, from Wath upon Dearne who was diagnosed with stage 2 breast cancer a year ago, just days before her marriage to husband, Steve. Jo shared her thoughts with Northern Life at the time, and almost a year on, here’s an honest, heart-breaking and humorous insight into how she’s continuing to kick cancer’s arse!

“There was no lump. I’d got a line. Not like a crease. It was a tinted line.”

It was in July last year that Jo noticed the tinted line on her right breast. In preparation for the big day, Jo had been dieting and losing weight, so initially, thought the change in breast may be due to that, especially when her private health assessment in the previous May showed nothing untoward despite her having a breast examination, Jo couldn’t shake the niggling feeling that something just wasn’t right, and made another appointment. ‘This is sinister,’ were the consultant’s chilling words, prior to her going for a mammogram.

“I knew what was coming,” says Jo. “I’m a worst-case scenario person and anything better is okay. Steve’s the opposite. He was trying to keep us both positive.” They didn’t even wait for the biopsy, immediately booking Jo in for an MRI scan, believing it to be one mass, and organised surgery for September. With two days to go before her wedding day, Jo received a call with her lymph node biopsy results – it was news she’d been dreading. The results from her MRI revealed numerous fluffy tumours – “they actually said the scan lit up like a Christmas tree,” Jo chuckles.“My breast was full of them -none of which had shown up on the mammogram or ultrasounds.” “It wasn’t the beginning we were planning,” sighs Jo. “It’s been really tough because Steve’s had to cope emotionally with it too, it’s the hardest thing we’ve ever done.”

The cancer had spread into her lymph nodes. Within the blink of an eye, Jo’s treatment changed, and with just over a week to go before the big day, she was having biopsies instead of brunches. “My original prognosis was Stage 2 Hormone Positive breast cancer, which means my hormones drive the cancer, but even at the start they were confident that it was treatable.”

“It was surreal, looking back it doesn’t feel like my wedding day. I enjoyed it but not as much as if this wasn’t going on at the same time.” When first diagnosed Jo hit social media to encourage women to check their boobs. Alongside her appeal was a quote:

The Devil whispered in my ear, “You’re not strong enough to withstand the storm,” Today I whispered in the Devil’s ear. “I am the storm.”

“That was sent to me by a friend who had been through breast cancer, I found it really helpful, especially on dark days,” says Jo. “Of course, you have days where you question everything but I didn’t say anything because I knew Steve wasn’t coping well at the time.” Shortly, after walking down the aisle, Jo was walking down a hospital corridor ready to begin her six month stint of chemo, then a mastectomy to follow, with radiotherapy after surgery…

“When I had that first six months of chemo we stayed at home, we didn’t really do anything because of the infection risk. My cousin, Dawn and her husband, Woody made a point of coming down at the weekend, and that was so important for Steve as well because they’d go out for an hour and Dawn would sit with me so Steve got a break because it is just relentless, it’s 24/7.”

Jo’s job as a Team Leader on Distance Learning has proven to be a great distraction, and despite her gruelling year has found solace in keeping her mind busy. “I couldn’t have had time off sick,” says Jo, “altogether I’ve had around 30 days off. Work gets me through, I find focusing on something else a real help. It was something I had actual control over.”

“I could cry if it was someone else, I’d be heartbroken but when it’s you – you need to ‘crack on.”

“I also have a fabulous breast care nurse called Alison, she was ringing me every week, while I was at work, asking how I was. I told her that I had an amazing support network around me and that I didn’t need her time, so to give it to someone who does. She rings me once a month now and we have a bit of a natter. She rang me 10 minutes after I got my results for my lymph nodes and I burst into tears. I’d not cried all the way through, I could cry if it was someone else, I’d be heartbroken but when it’s you – you need to ‘crack on.’”

Just days after saying ‘I do’, Jo was beginning her first chemo session, the first of many. “I was so disappointed; they said my first chemo was 55-60% effective which wasn’t ideal. It did reduce the size of the tumour but it wasn’t as effective as we’d hoped. So, I had my lymph nodes removed and I’m glad because it could have come back. “The last three rounds of chemo made me really poorly – constipation, diarrhoea, sickness and complete lack of energy.”

“I was losing nearly two stone each cycle (every three weeks).”

After a gruelling week Jo would eventually begin to muster up the energy to get in the bath, with Steve on hand to help her bathe and wash her hair. “I couldn’t eat. Every time food touched my tongue I’d begin vomiting,” says Jo. “I was losing nearly two stone each cycle (every three weeks). I’d put it back on as soon as I could eat. I was living on strawberry milkshake in an attempt to keep something down. Steve felt like he was watching his wife waste away in front of him. “Steve is terrible with medical stuff, he said he wouldn’t be able to do it if it was him – but you can’t go sulk in a corner, can you?

“It gets harder. My first two were fine. The first couple of days I felt off colour and tired, my second one was for four days and I felt a bit more off colour, and then my third one, that’s when I ended up in hospital, not being able to eat – extreme constipation, and then diarrhoea.”

After a tough four-day stint in hospital she’d had enough. “I decided that I wasn’t having anymore chemo,” says Jo, “then, when you start feeling better you think, of course I’m going to continue, I need it, but in the middle of the cycle you feel like you are dying. That’s the worse thing knowing you’re going to have another and it’s going to be worse. The physical side is shit but it is really the mental side that’s the toughest.”

If spending your honeymoon being pumped full of chemo, throwing up, and being constantly exhausted wasn’t enough to make her ‘lose her marbles’, this time she was told she’d have to lose her boob. Jo’s consultant, Dr Mahsoudi informed her she’d lose her right breast and was offered a reconstruction. “I didn’t find it painful or traumatic,” says Jo. “I hated my boobs anyway, so I looked at this as a bonus. I asked, ‘can I pay to have the other one done?’ and they said, ‘that will be done as well!’

“They don’t realise the impact they have, they do it every day. He saved my life.”

“On my left side I’m having a reduction and uplift. One is bigger than the other. It’s not like a boob job; it’s making the best of what they can. “Dr Mahsoudi, well, he’s just amazing,” beams Jo. “He makes you feel like the only patient he’s got. He laid out all the options for the operation. They don’t realise the impact they have, they do it every day. He saved my life.” The options offered to Jo was an implant or a flap operation -where they remove tissue from the stomach or back to form a new breast.

“When I came to the end of my chemo, I went through all my options and realised you have to keep going back to have liposuction, because when they form the new breast up to 50% will dissolve naturally so you have to keep returning. It can take up to four times and I just didn’t have the energy for it. “The MDT (multidisciplinary team) suggested an implant as close to the size I am now.  It looks amazing, but at first it felt awful – every time I took a step I could feel it, it was like it was just stuck on. I felt like Mr Potatohead!” She jokes.

“I’m so lopsided at the minute, but if I’ve got a bra on you can’t tell. My normal boob on the left-hand side is bigger, but when I take my bra off – it’s nearly on the floor, and my other one doesn’t move!” She laughs. “I feel totally deformed but then I remember that the cancer is gone and that’s the main thing. By the time I’m 50 I’ll have two new boobs,” she grins.

“I’ve got a lot of difficulty in my arm at the minute – it’s a bit crap to be honest,”

Whipping out Jo’s lymph nodes was necessary to prevent the cancer spreading, but by eliminating the culprit, it means she’s at high risk of developing lymphedema, which causes swelling in her right arm due to having no lymph nodes to drain fluid.

“I’ve got a lot of difficulty in my arm at the minute – it’s a bit crap to be honest,” says Jo. “I don’t think you realise how much it messes up your body. Even though I’ve gone through the menopause, I’m still having hot flushes, and I’m on medication for 10 years to suppress any other cancer in my body.”

The medication serves to help prevent the cancer from returning by lowering the levels of oestrogen – as it’s the oestrogen that feeds her type of cancer. Osteoporosis is also common in HER2 (human epidermal growth factor receptor 2 ) sufferers, so Jo receives regular isphosphonate infusions to help protect her bones and decrease her chances of bone cancer– “but that’s given me arthritis in my hands and hips!” She laughs.

“It’s amazing how many people are scared to book an appointment. One of my friends said they booked it and cancelled it because they’re so terrified that there’ll be something there, but that’s the point!” With her treatment due to finish in March next year, Jo has another 11 sessions to go. “It was still in my lymph nodes after chemo, chemo will have got rid of some of it but they don’t know how far it was at the start and it was obviously on the move. There’s no obvious signs of cancer, but there could be cells elsewhere…

“I’ve got anti-sickness medication, this one is not as bad with the side effects so I won’t lose my hair – all I experience with this is tiredness and feeling sick – I can cope with that,” she shrugs. “It’s a different type of chemo. It’s bonded inside another fluid so it doesn’t touch as many healthy cells – the other one just kills everything which is why it makes you so poorly, but this one doesn’t release it unless it finds something that shouldn’t be there. It will travel around my body and if it finds a cancer cell it will eliminate it.

“We’ve decided we’re both retiring at 55. We fancy living in France for a couple of years. We’ll probably want to be home when the grandkids come along. Who knows?”

And if that wasn’t enough she will also be on a daily course of radiation therapy for the next few weeks. “I’m having that on my neck and on my right side where my breast is, in case there are any cancer cells that may have travelled to my chest wall. “Because my cancer has a habit of coming back you are always mindful that even though I’m on this treatment and it’s very effective there’s always that chance… so, I’m constantly at Steve, ‘Let’s do this, let’s do that.’ The poor bloke’s tired out and keeps saying, ‘Jo, I can’t keep up with you!’ I’ll joke about it and say I might not be here in five years!

“We live every minute now. We’re never in, that’s why I’m knackered. I can’t keep up with everything, inbetween my treatments and booking holidays – because I don’t know if it will come back. It’s one of them that has a nasty habit of returning… We’ve decided we’re both retiring at 55. We fancy living in France for a couple of years. We’ll probably want to be home when the grandkids come along. Who knows? The world is our oyster! We want an adventure; we want to buy a camper. Cancer didn’t break us up, but the motor home may very well do!” laughs Jo.

She may have been one in seven, but to me, she’s one in a million.

NorthernLife Sept/Oct 22