Mimic This.....

I'm sure that most of you are aware of the ice bucket challenge that is taking social media by storm at the moment. I personally think that this is a great thing as it is raising awareness and funds for charities such as ALS and Macmillan. People should probably be reminded to mention this fact along with their donations in their posts or else it just becomes a video of folks tipping buckets of water over their heads. 

I have mentioned both ALS and Macmillan in this blog but there is an ongoing debate as to where the ice bucket craze originated. Macmillan are saying that they started the campaign in early July and that ALS joined in the fun towards the end of July. I'm pleased that both charities are benefitting. 

What I want to focus on in this blog however, is about a tweet that I saw earlier today. The tweet was about the purpose of the ice challenge. It claims that the dumping of ice water while your feet are submerged is to mimic the effects of chemotherapy treatments. It goes on to explain that being drenched is "exactly" what chemo patients feel. 

Somebody who tweets on behalf of Macmillan seems to agree with this statement. I can only assume it's somebody on work experience. They have clearly never gone through chemo. 

Now, I understand that every chemo patient has a different experience but I think it's safe to say that tipping a bucket of water over your head is not "exactly" what one who has cancer that goes through chemotherapy feels like. In fact I know so because I've been there and done it. 

To say that a bucket of cold water mimics the side effects associated with chemo offends me, deeply and since posting my thoughts on the subject on twitter I can see that it also offends many other chemo patients too. 

Chemo nearly killed me, not once, but three times. I'm not happy about that fact being trivialised by somebody who clearly doesn't have a clue what they are talking about. 

Here is a list of my side effects. There are many more. This is just what I endured. 

* Hair loss

* Insomnia ....like ALL NIGHT LONG

* Nausea/Sickness

* Sweating....cold, damp, clammy sweats

* Hot Flushes...and I mean HOT!!! 

* Stiff painful veins

* Bone Pain....I can only describe this as hardcore flu after being hit by a car

* Migraines

* Hallucinations....that pink clown....shudders

* Yellow diarrhoea....like rocket fuel. Just laying in the bath and letting it flow because I was too weak to sit on the loo.

* Mouth ulcers...to the point where the inside of my mouth actually started peeling away. So painful. 

*Fatigue....not being able to leave my bed  for weeks on end.

* Numbness in hands....a symptom that still troubles me one year on

* Weakness...crawling to the bathroom and taking 20 minutes to recover just to have a wee

* Palpitations....WOW!! 

* Finger nails falling off

* High Temperature

* Infections...Chest, Throat, Pneumonia, Shingles

* Sepsis (Neutropenic) 

* Anaemia...needed blood transfusion

* Low blood platelets...covered in bruises

* Low potassium...needed potassium infusions

* Bleeding gums 

* Tooth extraction

So as you can see every treatment does not feel "exactly" what the people who accepted the ice bucket challenge feels. 

Please stop sharing such utter fucking nonsense but please continue to have fun and don't forget to donate. 

To donate to ALS text "ICED55" with your donation to 70077

To donate £3 to Macmillan text "ICE" to 70550

Peace, love and chocolate cake x 

It's called gratitude and that's right

Today marks the second anniversary of the death of Adam Yauch aka MCA of the Beastie Boys. 

He died of cancer. 

My love of the Beastie Boys started when I was 11 years old. I heard Fight for Your Right on the radio and I thought instantly "Oh my god, they so get me"

Living at home WAS such a drag, I did wake up late for school and I never wanted to go. I didn't even know what a porno mag was but I was sure as hell that my mum had thrown away my best one.

I was one of the little shits that stole your VW badge from the front of your car...I still have it. 

I went on holiday to Whitby when She's On It hit the charts and I asked the DJ to play it so often that in the end he gave me the single. He hated the Beastie Boys. My Uncle hated the Beastie Boys. The media hated the Beastie Boys and my mum REALLY hated the Beastie Boys. All of this just made me love them more. 

I chose MCA as my favourite because he wore a leather jacket and then when they toured with Madonna it was MCA that she chose to do with what ever it is that Madonna does with boys. If he was good enough for Madonna then he was good enough for me. 

Anyway skip forward a few years and the shocking news of his death was announced. It seemed to come completely out of the blue. I knew he was ill and that their album Hot Sauce Comitee was postponed for two years while Adam went through more treatment, but the album was released and the Beastie Boys were even inducted into the rock n roll hall of fame. Adam Yauch wasn't in attendance for that but still I didn't think that it was because he was so near to death. 

My auntie called me with the news and for me it was another Michael Jackson moment. I just couldn't believe it. I was gutted. 

One year later and I hear those words for myself. You have cancer. 

The world fell out of my arse. I fell to pieces. How the hell was I going to get through this? 

The first questions I asked myself once the shock had worn off was who else has had cancer? How did they cope? I started googling cancer blogs and making friends with the authors. That helped me tremendously because I could see people going through chemo and they were still smiling, still living. This gave me the courage to make those steps myself. It's the reason why I blog, so that others newly diagnosed can reach out or know that it's ok to have shit days because the good days soon follow. 

I then decided that I needed some kind of guidance to get me through. I didn't want God or Jesus. I didn't want prayers but something...I needed something. 

That's when I remembered Adam and I knew he was a Buddhist. I read up about it and I liked what I found. It's not about worship or prayer it's just about being a better person. Changing the way you think about situations and letting go of bitterness and anger. I read some Adam Yauch interviews and tried to get some insight into how he dealt with his own suffering. 

Buddhism and meditation got me through some really dark horrible days. Beastie Boys songs got me through to the next five minutes when I would be sobbing on the floor staring at a razor blade thinking "Just do it now Lorna and it's over...no more bullshit".....my kids were the first thing to pop into my brain and then I would blast Alive into my ear drums. That song I also played on the first day of chemo because I had never been more ready in my entire life...it had all been leading up to this moment.

Adam Yauch you are my inspiration. You are cooler than a cucumber in a bowl of hot sauce. 

It's called gratitude and that's right!

RIP x 

I wish I had Breast Cancer.....not!!

So Pancreatic Cancer Action, as I'm sure lots of you have heard by now, have a new campaign up and running to raise awareness and funding towards their cause. For those of you that are not aware, this campaign shows a young woman who is dying from pancreatic cancer next to the words 'I wish I had Breast Cancer'

This has caused a lot of hurt and anger amongst many people, myself included, who have had a breast cancer diagnosis. Not to mention the people who are dying from the disease because yes, breast cancer kills you know. In fact it kills 12,000 people every year in the UK alone. It is not the "good" cancer that some people have told me that I'm lucky to have. It is most certainly not all pink and fluffy full of bald headed warriors. For many women, and men I should add, their breast cancer is terminal. They are stage 4. There is no stage 5. I'm guessing that they wish that they didn't have breast cancer.

The point of the Pancreatic Cancer Action campaign is to make people aware that their 5 year survival rate is just 3% compared to 85% of breast cancer patients and also that they get less funding. I am all for them gaining awareness. Every disease deserves awareness and funding and as much research as possible. I even understand why a pancreatic cancer patient who is dying would say that they wish they had a different type of cancer with a better prognosis but I don't agree with an organisation using this as a header in a campaign ad. Don't use one cancer against another, it belittles everything a breast cancer patient goes through. 

My breast cancer is called Triple Negative. It is a rarer more aggressive type of breast cancer. Many breast cancers have receptors for the hormones oestrogen and progesterone or for a protein called HER2. These receptors can stimulate cancers to grow. Breast cancer patients with hormone receptors are prescribed hormone treatments such as tamoxifen and Herceptin for HER2 receptors. My tumour didn't have oestrogen, progesterone or HER2 receptors, which is why it is called Triple Negative. Patients with triple negative breast cancer don't benefit from tamoxifen or Herceptin so chemotherapy and radiotherapy are our only treatment options. We have no back up. My 5 year survival rate is not 85%. Granted it is nowhere near as low as 3% but my chances of reoccurrence are higher than those of breast cancer patients with hormone receptors. Does this mean I sit and wish that I had a cancer with hormone receptors? No. I just wish there was more funding and research into triple negative.

I think what I'm trying to say is that all cancers are different and statistics don't mean all that much when you are the one who is dying. Yes, I am lucky in that I found my cancer early and it hadn't spread to any lymph nodes. Everything is ok with me at the moment but I live everyday with the fear of it coming back. I am not cured. There is no cure for cancer. This is what we should all be aiming for, a cure for all cancers. Not competing against each other and creating cancer envy. Get your campaign out there, raise awareness just don't do it at the expense of others.

I have no ill feelings towards the young woman in the pancreatic cancer action campaign. I can not even begin to understand what she must be going through and I wish her nothing but peace and love and as little pain as possible. To hear that she has been receiving death threats on twitter makes me feel sick to my stomach. To those that do that, stop being dicks yeah.