Friday, 11 August 2017

Campaigning Works: A Thank You

A few weeks ago we had the amazing news that Kadcyla has been approved for use on the NHS!

NICE and ROCHE have reached a deal on how much the NHS will pay for Kadcyla. This means that everyone who needs Kadcyla going forward will be prescribed it and everyone who is currently taking the drug can continue to do so.

On 29th December 2016  Breast Cancer Now launched a petition calling on Roche and NICE to come together and reach a decision and find a solution to keep Kadcyla available. 

The petition closed on the 23rd January.

It had 115,898 signatures!

I wrote a blog post regarding Kadcyla here: and I also featured in two local newspapers to try and raise awareness: and Thank you to both the Keighley News and the Craven Herald  for allowing me to do that.

It’s absolutely amazing news that Kadcyla will be available on the NHS. This drug is giving people with secondary breast cancer extra precious months with their families and friends with relatively few side effects.

Thank you to all the ladies like the lovely, Bonnie Fox, who campaigned tirelessly to keep this drug available.

Thank you to Breast Cancer Now for launching the petition and, again, campaigning tirelessly.

Thank you to everyone who wrote to their MP’s and local papers.

Thank you to everyone who signed the petition and shared it on Facebook and Twitter.
Professor Carole Longson, director of the centre for health technology evaluation at Nice, said: "The committee acknowledged the comments received from patients during the consultation on the draft recommendations for trastuzumab emtansine, in particular that 115,000 people had signed a Breast Cancer Now petition urging Nice and the company to ensure that it remains available.

I think the statement above from Professor Carole Longson says it all. This decision was made due to the ‘power of the people’

So thank you so much everyone. This is an incredible result and shows the power of campaigning. 

There is always strength in numbers xx


Tuesday, 18 July 2017

'Recharged' and back on the chemo ward

In  light of my last blog post on my fatigue I thought it was best to give you all a bit of a general health update. 

I recently saw my oncologist to discuss my ongoing side effects due to my past chemotherapy and Herceptin treatments and my on-going hormone treatment.

My fatigue and general aches and pains are not improving – unfortunately there is no magic pill for this. My oncologist thinks this is due to the chemotherapy and reminded me it can take two years to get out of my system. She also thought it could also be my Zoladex injections causing the pain. We discussed the possibility of using different hormone therapy to limit my fatigue and pains but we  both decided that  because Zoladex means there is less  chance of reoccurrence for me I'm going to stick with it – and also who doesn't love a bit of on-going pain!

My oncologist suggested complimentary therapies such as aromatherapy, Reiki etc to help me with the fatigue, aches and pains. I think this is what is suggested when the oncologist has run out of medical options.

I'm happy to give it a go though. I recently had an Oncology massage and that was great. We agreed I would ask at the Cancer Support Yorkshire centre and at The Haven to see what they can offer me and see if this helps before my next appointment. 

We also discussed different bone drug options. I currently take Risedronate (a type of bisphosphonate) once a week to protect my bones from the strong hormone therapy, which is known to cause bone loss. We decided that I'm going to switch drugs to an infusion of Zoledronic acid. This is stronger and has shown, in recent studies, that it not only protects the bones but can also prevent secondaries in the bones.

I'm recharged.

Is ‘recharged’ the opposite of ‘discharged’? No. Probably not. I’m readmitted. I prefer ‘recharged’ though. Feel like I could do with a little recharging after all this cancer treatment.

At Christmas I wrote a blog post about being discharged from Oncology and how it was the best Christmas present ever blah blah blah.

Well after my recent visit to Oncology my Oncologist decided that due to my ongoing side effects of my past and current treatment she wanted me to be readmitted so that I see her on a regular basis approximately every three months.

Some people might think this is a massive step back in my recovery. I did at first too. But now I think I actually prefer this. My GP is a ‘jack of all trades’ so to speak. He doesn’t specialise in cancer. I’m not saying he doesn’t know much about it. (Although he did try to move me to a different drug recently to ‘save his time’ as he could get a nurse to administer it rather than him - but that’s another story) He just doesn’t know as much as my oncologist…or me…probably. 

So I actually feel quite happy that I’m back seeing the lovely Dr R on a more regular basis.

What I wasn’t so happy about was heading back to the chemo ward for the Zoledronic acid infusion me and Dr R had discussed me changing to. 

Why oh why does it HAVE to be on that ward.

So a couple of weeks ago my mum and I  headed to Bradford Royal Infirmary  to have my first infusion of Zoledronic acid. Going forward I am going to have this every six months. As I said above this is to help keep my bones strong as the hormone treatment I currently take is so strong it damages my bones, which can lead to fractures. I already have Osteopenia because of this. New research recently came out that suggested that Zoledronic acid not only helps protect your bones but can also help to prevent secondaries in your bones. The bones are one of the places that secondaries are most likely to occur after breast cancer so this drug has two major benefits for me. I feel I would be a fool not to give it a try.

As with all drugs it has some pretty frightening side effects. The most common side effects are flu-like symptoms and increased pain – I already have lots of pain anyway so I guess that doesn’t matter. 

One of the most severe side effects is Jaw Osteonecrosis. This is where the Zoledronic  acid causes the tissues in the jaw bone to die. Yup you read that right. That’s not going to be pretty is it. Thankfully I’m told that’s quite rare. So I’m going to the dentist every three months and other than that just not thinking about it AT ALL. 

I had to have a blood test before my Zoledronic acid infusion so that meant a two hour wait at the hospital waiting for my bloods to come back. 

I hadn’t seen the BRI since the refurb and my god isn’t it looking phenom! I definitely got cancer at the wrong time hey?! There’s a Costa, M&S food and a nice little outdoor bit. Thankfully the day I was there it was a really hot day so after my blood test mum and I  had a little picnic outside and we both got quite the tan ;-) Who needs a holiday when you can just head over for an infusion at the BRI.

When it was time to go over to the chemo ward I was very nervous. There’s just something about the chemo ward that fills me with fear. I think I always thought that if I went back to the chemo ward it would mean I’d have secondary cancer and well that just doesn’t bare thinking about. 

There was a bit of a wait and then it was my turn to get plugged up to the machine. Literally there was only one chemo nurse left who I recognised from last time. I’ll call her Nurse S. Nurse S is quite young and we always got on really well so it was nice to see a friendly face to put me at ease a little.

I’d had a cannula the day before for a minor operation so my already piss poor veins on my chemo arm where pretty sore and damaged but thankfully Nurse S managed to get the cannula in and got the infusion going. Ever so slightly stingy on the way in – but I think that’s just because my veins are so damaged. I had a juice and a chat with one of the lovely volunteers who I recognised from last time I was there and 20 minutes later the Zoledronic acid had been administered and I was good to go. 

^ Look at that hand. Look how Brown! #BRIvacay

I’m not going to say I felt particularly well after it because that would be lying. I felt pretty awful for probably a good 4 or 5 days. Very, very achy and like I had a bad case of the flu. I thought I’d got used to all this fatigue and aches and pains but I definitely felt I’d had quite a knock. 

But hey it’s only every six months so I’m going to keep going with it for now. I also heard  the first one is the worst one so hopefully next time it won’t be as bad. 

Still got that tan as well! ;-) Silver linings people!! X

** You can find out more information regarding Zoledronic acid here:


Wednesday, 14 June 2017

More than tired

I wrote the below about my cancer-related fatigue a few months ago and it's literally just been sitting in my drafts ready to post on the blog all this time. My fatigue is still pretty much the same so hey at least it's still relevant! I'm not really sure why I haven't posted it – maybe because it's a bit bloody wingey! But it was World cancer Survivor Day last week so maybe now is a good a time as any... 

One of the main side effects of my cancer treatment is chronic fatigue. Its frustrating. It's relentless and it's just not the same as the tiredness a ‘normal’ person feels.

At my age, of just under 30, I'm surrounded by people who are at the point in their lives were they are working every hour there is striving for their perfect career, having babies and looking after their growing families. 

I'm surrounded by people doing all these things and of course they are tired. Exhausted even. But this tiredness just doesn't compare to the chronic fatigue experienced after cancer treatment. 

My Cancer related fatigue (chronic fatigue) is not completely relieved by sleep or rest. So it doesn't matter how much I sleep. I can still wake up just as tired. 

My fatigue levels are often disproportionate to my activity. Meaning if I have a hospital appointment the next day I could feel like I've just ran a marathon. 

It often takes me at least 48 hours to recover from any given activity. If I have two hospital appointments in a week then I'll worry it's too much and I'll be knackered. Therefore there's no way I'm at the point were I could work a full five days a week. 

I have to plan everything I do now and I have to pace myself all the time. On a positive note this means I often prioritise the fun stuff and forget about the dusting.

I’m finding my chronic fatigue increasingly difficult to explain to people. Everyone rally's round you during chemotherapy but once that's done everyone expects you to bounce back and go back to normal. 

So what you're a little tired?

I recently went to the hairdressers. (I know right? I've been dreaming about this for months) I went to a Toni and Guy salon that had a hairdresser specially trained by Macmillan. He asked how I was coping after cancer treatment and I went to my ‘go-to’ response of “Oh I'm just tired all the time mostly”.

“Yeah but everyone's tired hun”. He retorted back. 

*Face palm*

I feel like that is the general consensus when I complain of tiredness. Just a general lack of understanding. Maybe that's my own fault? Maybe I should say “I’m struggling with cancer-related fatigue”. But then I just feel like I sound like a melodramatic arsehole. 

So I'm not sure what to do?

I used to get up at 5am to get the train to work every Monday. I was tired when I got home Monday night. However it didn't take me 48 hours to recover. I was still able to get up the next morning and do it all again. Chronic fatigue is tiredness like I  have never felt before. Maybe I should just stop calling it tiredness altogether?

I guess it's a lack of understanding from the people around you that can make life after cancer treatment a lonely and isolated place. But unfortunately no one gets an oncology medical degree when they, or a friend/relative, gets a cancer diagnosis.

Most people just don't understand what life is like after cancer treatment. 

I feel like everyone expects me to just bounce back grabbing life by the horns now because 'I've been given a second chance at life'. 

I'm trying. 

But sometimes I'm that tired and achy I can barely get up or walk down the stairs. There's many a night that I've stayed in the bath for two hours until Michele gets home from work as I just don't have the energy to get out.

When I  went to the Christmas markets I nearly collapsed before I found a seat. When I went to see a band after my last Herceptin injection it all got too much for me and I  had a panic attack on the train home meaning I had to get off and get a taxi home. I, obviously, don't put that all over social media though so no one knows that.

I don't want to be all woe is me but maybe the lack of understanding and empathy comes about because cancer ‘survivors’, like me, aren't talking about this aspect of cancer treatment. We don't want to winge about being ‘ a bit tired’ when we could be dead. But chronic fatigue is a real struggle for many people recovering from cancer.

And if you're reading this and you have cancer too. Maybe you're also struggling with cancer related fatigue and the people around you just don't ‘get it’. Know that I get it. The girls in my support group they get it. 

I understand how you feel. I understand what it's like to try and recover from cancer in a world where everyone is just a bit ‘tired’. 



18 months after my cancer diagnosis I didn't think I'd be walking on fire…in fact I didn't think I'd ever be walking on fire..

But here we are..

Khaleesi you've got nothing on me love x

- video clip available on my insta ;-)

Monday, 16 January 2017

Keep Kadcyla

Before I start blabbering on about how important this is to me and you get sick of scrolling through the blog post…here's a link to Breast Cancer Now’s petition. PLEASE SIGN IT! It only takes a second…

So what's it all about?

Kadcyla is a drug used for secondary breast cancer that's HER2 positive. NICE provisionally rejected Kadcyla (Trastuzumab emtansine) for routine use on the NHS on 29 December 2016. There is now a month long consultation period ending on 20 January, with Roche and NICE meeting again on 1 February with a view to making a final decision. 

My breast cancer is HER2 positive so if my cancer decides to come back Kadcyla would be one of my drug options. A drug that could extend my life. Giving me years instead of months. 

But enough about me. This is affecting people now. Many women I speak to on my breast cancer support group are using this drug right now. It is extending their life. Imagine having this taken away? 

We need Roche (the pharmecutical company) and NICE to come to a compromise regarding Kadcyla so that it can continue to be used on the NHS. 

Please sign the petition above! We need to keep the pressure on both Roche and NICE during this consultation period. 

If you do have a bit more time I would really appreciate it if you would contact your MP to request that they raise this issue in parliament. 

You can find the contact details for your local MP (including email) though this website:

My support group, YBCN, have drafted a template for you to send to your MP to make it easier. Please contact me via my blog or Facebook and I can message you the template.

I really appreciate your support x


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