Posts Tagged ‘The Christie’

Please say hello and welcome to Eli!

Breast Cancer Focus Group Logo AW

 

Eli the elephant is the new logo for the Secondary Breast Cancer focus group at The Christie hospital in Manchester, a group which I’m proud to be part of.

The Pledge

The Secondary Breast Cancer focus group at The Christie was formed following the launch of the Secondary Breast Cancer pledge in March 2014, a national initiative aimed at improving standards of care for people diagnosed with secondary breast cancer.

I’m lucky enough to get treated at a hospital where I have access to a clinical nurse specialist (or Breast Care Nurse), along with many other support services. However for many living with Secondary Breast Cancer, this isn’t the case.

Many patients don’t have access to a clinical nurse specialist or are living with unnecessary pain because they haven’t been referred for palliative care. The Pledge aims to ensure that all patients with secondary breast cancer get the highest possible standards of care.

The focus group

When I joined the focus group earlier this year, they were working on a project with Breast Cancer Care, to update information contained in secondary breast cancer resource packs. Ideas and feedback generated by the group, are now being put into practice, and will be incorporated into the resource packs given to patients at diagnosis.

More recently the SBC team at The Christie received funding from Macmillan and Manchester Cancer to hold a series of  “Living with Secondary Breast Cancer” events at The Christie.  At the first “Living with Secondary Breast Cancer” day in July, more than 50 patients and carers attended, with talks from various cancer specialists, along with workshops for both patients and carers.

 

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Secondary cancer can be a lonely and isolating experience for patients and events like this are a lifeline. For as well as allowing patients to gain knowledge and access local support, it enables them to meet others living with the disease.

The next event is taking place on Wednesday the 21st of October and is open to all secondary breast cancer patients at The Christie Hospital in Manchester. If you, or anyone you know, are affected by secondary breast cancer, then please come along. Patients are welcome to bring partners, friends or relatives. For more information or to book a place, please contact:

claire.gaskell@christie.nhs.co.uk or call 0161 446 3996

 

 

Here’s my latest Vita blogpost:

http://www.breastcancercare.org.uk/news/blog/my-graduation

After my last post I worried that I might run out of things to talk about. However, cancer is a sneaky and unpredictable disease. Whenever I relax and start thinking about a cancer-free future, the bitch comes back and bites me on the bum.

On 7 May, exactly two years after discovering the first lump, I found out I have cancer again.

Big Crocheted Boob at Manchester Art Gallery

Big Crocheted Boob at Manchester Art Gallery

Last Monday I had a CT scan to determine the size and spread of the disease, and on Wednesday a follow-up appointment to discuss the plan of attack.

Last week I cleared the decks and indulged myself in some major distraction techniques in preparation for bad news. I saw some weird art, tramped over hill and dale and did everything I could to de-stress.

A yoga, massage and meditation binge, in the days leading up to my appointment, really helped. I went to morning meditation on Vesak (Buddha’s birthday), believing that it might nudge the gods in my favour. However, this wasn’t to be.

On Wednesday afternoon I found out that the cancer has spread to my lungs. This means I have secondaries or metastases.

I’m now officially stage 4.

Finding the key

As is the norm with these appointments, it didn’t go as planned. I’d gone expecting a date for surgery. I was really hoping they’d chop off my reconstructed breast, the site of one of the new tumours, but because of the small lesions on my lungs, I’m going straight to chemotherapy.

I’m surprised at how calmly I took the news, but this was probably because the consultant didn’t do the apologetic ‘side-head’ manoeuvre usually associated with breaking bad news. It also helped that he didn’t use the words secondary, metastatic or stage 4. He described the small lesions on my lungs as a puzzle that needs fixing. In his words: ‘We just need to find the key to unlock the puzzle.’ Once we find the key, he hopes that things will ‘settle down’. I burst out laughing when he said this. I’ve never been so underwhelmed by such devastating news.

Breaking bad news

The past few days have all seemed a bit unreal, and it’s only now I’ve begun to tell people that it’s starting to sink in.

Whether you’re a cancer newbie or a career patient like me, the words ‘secondary cancer’ are infected with terror. It was only when I started telling friends that it really hit me.

Breaking bad news can be quite traumatic and I’ve learned from previous experience that it’s easier to wait until you have all the facts before telling everyone. You end up trying to comfort and reassure everybody else that you’ll be OK when you’re the one that needs comforting. This time I only told immediate family and a few close friends until I had more information. Telling fewer people definitely helped soften the blow.

I thought it might help if I read up on the new direction my cancer has taken. However, I just ended up frightening myself so I’ve stopped Googling for now. I am burying my head in the sand, but I would like to enjoy my last few days of freedom before the rollercoaster of cancer treatment begins again.

Treatment

I had all my previous treatment in Scotland where I’m originally from. However, this time I’ve decided to stay in Manchester and I have my first appointment at The Christie in a few days’ time.

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My new home

I feel like I’ve reached a turning point and I think it will be a positive move having my cancer tackled by a different team of experts. It’s the biggest cancer centre in Europe, so being treated there means that I might have the opportunity to take part in trials not available to me in Scotland. It’s also within stumbling distance of my house, so it’s handy for emergencies.

There are many questions that have come to light since my recent diagnosis. I wonder if mistakes were made during my first round of treatment and whether I should have questioned things I wasn’t happy about. Hindsight is a wonderful thing but I can’t change what’s passed. I feel like I’m running out of lives so I’m not taking any chances this time round.

Being vigilant

The nipple tattoo I chatted about in my last post seems so trivial now. However, it was this, along with my lymphatic drainage routine, which led me to discover these new lumps. I discovered a tiny pea-sized lump on my reconstructed breast, right next to my nipple tattoo. The other lump is under my arm, in among scar tissue. I have an area of cording (hardened lymph vessels) in my axilla, but I discovered a new lump in this area, so I went to my GP to get this checked.

I’ve been incredibly unlucky, but I can’t stress highly enough that if something doesn’t feel right, you must get it checked by your GP or breast care team. Get to know your lumps and bumps and trust your own judgement. I delayed going to the doctor because I’d been given the all clear a few months earlier. I’ve been right every time.

Cancer is everywhere

Since my recent diagnosis I feel like a magnet for all things cancer related. I’m convinced there’s someone walking 10 paces ahead of me pasting up Macmillan posters. They are everywhere. People with cancer seem to be following me around too. A woman sat next to me in my Pilates class who had just had a mastectomy. The following day, I ended up sandwiched between two women at the eyebrow salon exchanging cancer-fighting tips. On both occasions I was feeling a bit fragile and I didn’t have the courage to say: ‘I have cancer too!’ Sometimes you’re just not in the mood for tumour talk.

Fun

Regardless of the crappy news I had this week, life goes on and this weekend I’m off to a wedding on Colonsay (in the Hebrides) with a 1920s theme. A friend pointed out that if they’d offered me a double mastectomy I’d be the perfect flapper girl – extreme fancy dress?! It’ll probably be my last social event for some time so I’m really looking forward to letting my hair down before treatment begins and it all falls out.

This weeks’ news means that my blog will take on a dramatic new direction. By the time I write my next post I will have started chemotherapy. I’ve dug out my wig Stevie. I might even get a Scouse Brow. I’m still in good health and I’m determined not to let cancer take over my life.

I hope I can share some tumour-fighting tips with you as I jump on the cancer carousel again.