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We Are Undefeatable: Living and parenting with a long-term health condition

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According to the We Are Undefeatable campaign, one in four people in England is living with a long-term health condition. Tania Sparkes is one of them, as she lives with complications caused by having had bile duct cancer. Like many people, she has to balance her health needs and regular visits to hospital with being a mum to Serena, her teenage daughter.

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Tania Sparkes, who lives with the impact of having had bile duct cancer and supports the We Are Undefeatable campaign.

In the interview below, Tania explains how her health has impacted on family life. After two years of investigation, she was eventually told she had cancer. Following surgery and chemotherapy, Tania was told no cancer is present, still she needs to regularly visit three different hospitals.

Tania makes no secret of having bad days and says anyone in a similar position should be open about it. Even so, she and Serena are big supporters of the We Are Undefeatable campaign (you can find out more about it here).

The campaign has the backing of 15 leading health and care charities plus support from Sport England and National Lottery funding. It’s aim is to encourage those with long-term health conditions to stay active.

It’s not about climbing mountains or taking up jujitsu. It’s about keeping active anyway you can, and that can be a challenge for many people with health issues. Tania has some fun and creative ways of keeping active and she even gets her daughter involved. Here’s her story.

I’ve seen that you are living bile duct cancer, I just wondered if you’d able to explain a bit how that impacts on your life?

“Well, I would like to start with a positive. I think it’s definitely given me a positive outlook on life. I try not to worry about things that I wanted to get done previously, but it’s had a hugely detrimental effect on my life. It just stopped basically.

“I’ve lost a lot of time if that makes sense. I’ve spent a lot of time in hospital. I lost my job, and I very nearly lost the house, so it has had a big impact on my life practically. I feel like I’ve had this for so long now that I can’t remember what things were like prior. 

“I think about trying to find a new way of living if that makes sense? It’s building a new life around what I’m able to do instead of what I’m not able to do.”

Tania explains she underwent “mammoth” nine hour surgery that left her with a “massive” scar. It also left her with fatigue and chronic pain but she remains upbeat.

“I’m grateful for the surgery because there’s a lot of people that can’t have it. It’s the only potential cure there is, so I have to be grateful.”

I know you’re still receiving treatment, but I’m not clear as to whether the cancer has been dealt with completely?

“I had the surgery then had eight cycles of tumour chemotherapy and that’s all they did. I’m not currently on any cancer treatment, I’m on tumour treatment to try and manage that at the moment. There is no evidence of disease, so touch wood, that’s very good.”

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Got it, you still have to attend regular check-ups?

“Oh yes. I go to scans regularly and I’m under the care of three different hospitals. So that’s complicated in itself,”

Tania goes into great detail explaining how she receives treatment at the Christie Hospital in Manchester, which is one of the largest cancer treatment centres in Europe. The surgery took place at a different hospital while she attends a further hospital because the treatment means she gets regular infections. It sounds mind bogglingly complicated and I’m staggered at how Tania balances this need for constant care and check-ups with looking after her daughter.

“I find it’s really difficult not to live your life through hospital appointments. You have to try and find a meaning or a positive step for you. Otherwise you’re institutionalised very quickly. What I’m currently attempting to do is not focus solely on hospitals.”

Even so, Tania makes a remark that at first leaves me shocked. She says she is receiving palliative care.

“I’m still under supported care at Christie Hospital, it’s supportive and palliative care, because it’s where they do the symptom management, but it’s interesting because when anyone hears ‘palliative care’, they think of end of life.”

I would’ve thought that!

“I did too. When I got a letter telling me I was having palliative care, I nearly had a heart attack! I thought ‘is the doctor not telling me something?’ It’s just supportive care, they’re experts in dealing with pain caused by cancer.”

This brings me nicely on to the We Are Undefeatable campaign you are involved in. It’s a campaign to encourage people with a long-term health condition to be active but how are you involved and what are the campaign’s aims in your own words?

“We Are undefeatable has been a hugely positive thing for me and my daughter. It’s turning something negative into a positive.

“It’s not about preaching to people. When you’re exhausted and fatigued it’s different to tiredness. With fatigue, your body hurts and you could fall asleep anywhere.

“We Are Undefeatable recognises these barriers exist and that not all exercise fits everybody. It’s about doing what works for you.

“We Are Undefeatable campaign recognises how important it is for your mind. That is the real benefit I’ve found with it. It’s about encouraging people to do things that you don’t even figure being exercise.

“A simple example is going for a walk. My chemist used to drop my medication off for me. It’s only at the end of my road, and just making myself go to the chemist instead of having medication dropped off, no matter how slowly, you’re getting outside. I think that’s what the campaign is really about.”

I understand one of the ways you keep active is to dance around the kitchen with your daughter?

“Yes, it’s been really nice doing things with Serena because she sees some of the old me. Prior to this I was never ill, I was constantly busy, I was working full-time, we were out and about. This was a huge change.

“I’m silly at times, and that’s fun, I’m like a giant child. So we do a dance routine in the kitchen, the Wii is another brilliant one”

Tania explains that she and Serena play tennis using the Wii and when she has to, she will sit down to play. Nonetheless, she plays to win.

“My child is particularly competitive and so am I. So yes, when they get older, you really want to win over them!” 

It turns out Tania and Serena went away on an activity break. This gave her a chance to try different activities and Tania found it motivating.

“We went away to a Centre Parcs type place and did the badminton, tennis, water slides, skiing and so on. It’s just about moving, and I found it so nice to have those moments with Serena.

“She’s seen me be very ill and it’s really nice to see me not be. I feel very strongly that if you do stuff with your children or if you have them, it motivates you a little bit more as well, or may push you a little bit.

This is a further aspect of the We Are Undefeatable campaign isn’t it, because it’s not just about improving your physical health is it, it’s as much about your self-esteem and mental health?

“Yes, that’s huge, that’s one of the main aims.”

Tania said that after having chemotherapy she experienced depression and was given anti-depressants. A friend paid a visit and persuaded her to go for a walk and that simple act had a huge impact, as Tania explains.

“I found how much it really improved my mind, my mental state. It’s good to exercise, it has be a blast that helps. When I dance with Serena and being silly and we’re laughing and joking, and that lifts your mood. I think personally for me that having a strong mind is very important.”

I was going to ask how your condition has impacted on family life. It must have been significant?

“That to me has been the hardest thing in the world. You try and protect your children from everything and because she does only have me and I am just her full parent. Oh, it has been horrendous.”

Tania goes on to explain how it took two years to get a diagnosis. At first there was a suspicion she had issues with her gall bladder. Serena didn’t know her mum might have a serious health condition but that all changed when there was a complication during a minor medical procedure.

“This had the biggest impact on Serena. I’d been able to keep it quiet up until that point. I told her I had to stay in overnight she was fine with that, but they perforated my bile duct.

“I woke up afterwards and was screaming, I’ve never felt pain like it. That caused an infection around my heart that, in turn, caused massive problems. I was in hospital for nearly a month. I know Marina had nightmares about it.”

Tania had to contend with various issues but eventually got a cancer diagnosis.

“After the surgery I said to Serena ‘now they think it’s cancer.’ She was around 12 at this time. It’s a difficult age because you can’t hide it can you? I found it really difficult to know what to do or say for the best.

“To not have answers about your health, then to tell her it wasn’t cancer, and then tell her it was. It changed every time I went into hospital. We lost a lot of time together and that is the biggest impact.

“I did get her to go to counselling eventually. Again, it’s just trying to get her to talk to somebody. She’s been on this journey with me and I think it’s almost harder for people around the person who has the health condition because they feel powerless. It’s awful, so it’s trying to keep doing things that are positive and spending as much time with her now as I can.

“It’s really about trying to be honest and try to focus on the positives. That’s another reason why the We Are Undefeatable campaign is great, really great for Serena. It’s something productive, it’s something that can inspire others. It’s been such a positive thing, I thought honestly it’s brilliant, it really has. Very pleased to be involved with it.”

One final question, is there any particular message or anything you’d like to get across to readers?

“I would like to say that anyone with a long-term health condition, it’s okay to have down days and bad days.”

More information about the We Are Undefeatable campaign can be found on its website. You will also find the campaign on Instagram and Twitter. Tania also pointed out that anyone wanting information about bile duct cancer may wish to contact the charity AMMF.

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