Posts Tagged ‘YBCN’

I’m privileged to be part of this video with my friends at the Younger Breast Cancer Network (UK), the online community I belong to. We’d all prefer not to be part of this group, but this wonderful group of women have become my friends. Some are cyber friends, some I know in person and I would be lost without their support.
Please share this post to raise awareness of secondary breast cancer and to support Breakthrough’s campaigns to #demandafairprice for drugs and to #stopwomendying.

You can join the campaign here to #demandafairprice for drugs. And email your MP here to #stopwomendying.

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Here’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/getting-support-counselling-support-groups-mindfulness

I love picking fruit and today I spent a couple of hours picking blackberries. It requires patience and perseverance but it’s incredibly rewarding seeing the fruits of your labour bubbling away on the stove.

One of the reasons I love picking fruit is because it’s one of the only times I switch off. This is something I strive for when I meditate but never quite achieve. When I’m picking blackberries, all I’m focused on is reaching for the next berry. It’s very therapeutic and for a few blissful hours I forget I’ve got this vile disease. Making jam

Switching off is difficult at the best of times, but when you’re going through treatment, worries can be all consuming. Not only are you dealing with the rollercoaster of treatment, but there are often financial, emotional and practical issues to contend with. Anxieties about paying the bills, body image and fears of recurrence are just a few of the things a cancer patient has to face, along with the physical and psychological impact of treatment.

The constant stress of treatment can take its toll, and it’s no surprise that depression and anxiety are common among cancer patients. Mental health has been in the news recently with research showing that between 6 and 13% of cancer patients have clinical depression, compared with 2% of the general population.

Like many cancer patients, I struggled to get any psychological support when I was first diagnosed. A cancer diagnosis wasn’t considered serious enough to warrant an urgent referral and I was told I’d have a 6–12 month wait for counselling. It was only through accessing the support of my local Maggie’s centre that I got the psychological help I needed.

It seems like we have a lot of catching up to do when it comes to looking after the mental health of cancer patients. However, there are many resources you can access to help you cope with the ups and downs of treatment.

Counselling

Asking for help is nothing to be ashamed about. It can be really hard for loved ones to give you the emotional support you need while you’re going through treatment. It’s also really difficult to be completely honest with them. Counselling provides a neutral space for you to talk openly about how you are feeling. It allows you to put aside the brave face that you put on for family and friends.

I’ve had contrasting experiences while being treated under different authorities and every health authority varies in the availability of psychological support for cancer patients. Some hospitals have dedicated psycho-oncology units and your breast care nurse, consultant or GP can refer you. Charities such as Maggie’s and The Haven also offer counselling.

Alternatively you can chat to someone on the Breast Cancer Care or Macmillan helplines. Breast Cancer Care also has a brilliant telephone support service called Someone like me, which matches you with someone who’s been on a similar journey.

Find a support group

There’s no better support than from those in the same boat as you. No one else can comprehend what you’re going through unless they’ve been there themselves. There are breast cancer support groups all over the country. You should be able to find one through your breast care nurse, your local hospital or through Maggie’s, Macmillan or The Haven.

Breast Cancer Care offers practical courses for people at different stages of treatment as well as monthly support groups for those living with secondary breast cancer. For women under 45, their Younger Women Together meet-ups are a great way to make friends and create new support networks.

There are also online support groups such as the Younger Breast Cancer Network (UK) on Facebook and the online Forum at Breast Cancer Care, where you can get support from other women going through treatment.

Meditation and mindfulness

5253I started meditation classes a few months before my primary breast cancer diagnosis in 2012 and this really helped me cope with the trauma of a cancer diagnosis. You don’t have to be a Buddhist to meditate and many places now offer courses in mindful meditation or mindfulness based stress reduction (MBSR).

We spend most of our time in autopilot mode, thinking about the past or the future and paying little attention to what is going on in the present. The busyness of modern life and the technologies we surround ourselves with encourage us to be even less mindful. Mindfulness encourages you to be in the here and now using techniques such as meditation, yoga and focusing on breathing. It enables you to be more engaged with your feelings and emotions so that you are better able to manage them.

And it really works. Meditation can reduce anxiety and stress, as well as helping to control problems like pain and high blood pressure.

You don’t have to sit and meditate to be mindful. Mindfulness can be incorporated into your everyday life. Everyday activities such as baking a cake, going for a walk or even reading a book can all be mindful.

There are many avenues to explore if you’re interested in learning some mindful meditation techniques. The Be Mindful website has a list of courses all over the UK as well as online courses. Your local hospital or cancer support centre might run courses. If you just want to dip your toe in the water there are some great podcasts on the Mental Health Foundation website and at the University of Oxford Mindfulness Centre.

Picking blackberries and meditation aren’t for everyone and you might find other things work better for you. When I’m feeling well I like to keep myself active. Walking and yoga are the things that help me feel stronger both physically and mentally. On bad days I find getting lost in a book or watching a film are really great distraction techniques. I hope you find something that works for you.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

My latest Vita post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/being-patient-starting-clinical-trial

Since my last post, I’ve been a busy bee. I celebrated my second cancerversary on 1 June, I made it to my friend’s wedding on Colonsay as well as celebrating the first of many 40th birthdays.

All this fun has been a good distraction, as I’m still stuck in cancer limbo. I’ve had lots of hospital appointments but I’ve not yet started treatment. There was some deliberation over whether I should have surgery or chemotherapy first. I’ve also been offered the chance to take part in a drug trial, which I’ve since agreed to, and this has delayed things even further.

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Trials

Agreeing to go on a trial is a completely personal choice and not the right option for everyone. However, I did my research and sought the opinions of friends and family before coming to a decision. I also spoke to others who have taken part in trials and thanks to the Younger Breast Cancer Network, I even managed to chat to a few women who’ve been on the same trial.

The trial I’m taking part in is double-blind, which means that neither I nor my healthcare team will know if I’m getting the trial drug or a placebo. In case you’re wondering whether I’m completely mad, I will still be having chemotherapy. The trial drug AZD5363 (or placebo) will be given in combination with paclitaxel, a drug I’m sure many of you are familiar with.

The trial regime involves weekly cycles of paclitaxel along with twice weekly doses of the trial drug. I’ve heard that paclitaxel is more manageable than other regimes (I previously had FEC) although I’m keeping an open mind. Potential side effects include diarrhoea, hair loss, peripheral neuropathy (numbness in fingers and toes), mouth ulcers, nausea and vomiting, aching joints and muscles, itchy rash, fatigue, and anaemia along with the risk of infections. The side effects of the trial drug are similar. I can’t wait.

There are risks and benefits of taking part in a trial. On a double-blind trial there’s a chance you might end up in the placebo group and there are risks involved in taking a drug which has only been tested on a limited number of people. However, you are really closely monitored. For the first week I’ll be in hospital nearly every day, having every bodily function sampled and analysed. I will also have scans every 12 weeks to determine whether the treatment has been effective. The continual monitoring is one of the main benefits of being on a trial, and one of the reasons why trial patients often do well, even when they’re in the placebo group.

Being patient

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One of the main disadvantages of being on a trial is that it takes forever to get started, as blood samples and scans all have to be verified by the drug company. Waiting for treatment to begin is incredibly stressful and I’ve reached the point where I’m desperate to start. It’s horrible knowing that there are renegade cells floating around your body and nothing is being done about it.

Last week I finally had a date confirmed. If they delay it again, I’m parking myself in outpatients until they inject me with something toxic.

The most important thing to know about a trial is that you can opt out at any time. The drug company want results, but they don’t want to put people’s lives at risk. I’m not getting paid, although this treatment will potentially extend my life and the lives of many other women with breast cancer.

Cancer buddies

Although I’ve been off work since my last recurrence in October, cancer keeps me busy. Aside from all the hospital appointments, I have a hectic cancer social life. I love my non-cancer friends and I hope for their sake that they stay non-cancer friends.

However, I’ve gained a whole new group of cancer-buddies in the last two years. There are the women I met at the Maggie’s Centre; at support groups such as Moving Forward and the Macmillan Hope course; and through Breast Cancer Care’s Younger Women Together. More recently I’ve found online groups, such as the Younger Breast Cancer Network, a great way to chat to other young women with secondary breast cancer.

No one else can comprehend what it feels like or understand the emotions you go through unless they’ve been through it themselves. There are things I talk about with my cancer buddies that I would never talk about with immediate family and friends. Menopausal symptoms, infertility, living with the fear of recurrence and worries about dying are all subjects that your cancer buddies will understand, but that you might not feel able to discuss with your loved ones.

Cancer is a devastating disease but one thing it can’t take is your ability to laugh. I met some cancer buddies for coffee last week and during our catch-up, one of the girls delivered some bad news. Said friend was laughing as she gave us the news, so our reaction was to laugh along with her. A man, ear wigging on the table behind, looked appalled at our reaction. Perhaps he thought we should be sobbing into our green tea or that we didn’t look sad enough. I felt like walking up to his table to comfort and reassure him that ‘It will be OK.’

The future

Friends who’ve seen me since my recent diagnosis seem surprised that I look so well. I should have explained in my last post that although I have stage 4 breast cancer, the metastases on my lungs are very small and hopefully they will stay that way. I am fit and healthy and aside from a little fatigue, I have no symptoms.

People are also curious about my prognosis and this is a question I’ve been asked by the benefits office among others. I find this question really upsetting and the answer is that I don’t know. There may come a time when I do want to find out, but at the moment I’m viewing my disease as a chronic condition. It’s something that I’ll probably always have. However, I’m not going to let it take over my life. People can and do lead full and productive lives with stage 4 cancer. There’s life in me yet and I have no intention of leaving this planet anytime soon.

My perspective might completely change when I start chemotherapy next week and assume the role of patient once again. This means that there might be some chemo grumbles in my next post.

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.