Thursday 3 November 2016

1 YEAR IN REMISSION

Today officially marks 1 year in remission, when my consultant confirmed my chest x-ray was clear.

This is a huge milestone to me as I feel my fitness and confidence improve day by day - I don't always feel like I'm getting anywhere, but if I think back to 1 year ago my life couldn't be more different.

I am eternally grateful that I am one of the lucky ones who responded well to treatment, as there are so many that unfortunately don't.

November 3rd will always be more important to me than any other day of the year, because it marks the anniversary of the day I got my life back.

Thank you all so much for your continued support.

Wednesday 27 July 2016

I Have Epilepsy

Last September, I had my first seizure. I was between chemotherapy and radiotherapy, and was taking a few different medications, so it was put down to that, and after a brain MRI I continued as normal.

I was given the fantastic opportunity of a 4 day sailing trip off the Isle of Wight with the Ellen MacArthur Cancer Trust, something that was first mentioned to me last year that I was very excited about. I travelled down to the Isle of Wight last Monday, and went to bed on the boat that night.

At 1am I got up to use the toilet. As I stood washing my hands I could feel myself twitching, and I was struggling to control my hands. I turned to walk back to bed, and then everything went black. I then had a seizure on the bed for around 3 and a half minutes. I had no idea that had happened, because I was so tired after a long day travelling, so I thought I had gone back to sleep. The girl I was sharing the cabin with went and got the skipper of the boat, who then got the doctor who was on the trip with us, who woke me (I fell asleep after the seizure) and told me what had happened. I was aware someone was talking to me, but I didn't know what they were saying. Apparently I was talking nonsense. I'd bitten my tongue badly down one side, and it had swollen so much I sounded like I had a lisp. I was taken to A&E where they observed me for a few hours, before letting me leave. I then collected my things off the boat, and headed back to Southampton where my parents picked me up.

The day after I got home I went to my GP, before seeing a Neurology consultant, who asked for a description of both fits, as well as the twitching. He told me I would need an EEG, a brain MRI, and said I had juvenile myoclonic epilepsy. I was given a prescription for medication to start straight away. 

Epilepsy can usually be well controlled with medication, and my Mum is a prime example of that, having epilepsy herself and not having had a seizure in over 20 years. I think the timing of this is adding to the fear and loss of confidence as I had been slowly building myself back up. Although my Mum has the condition, I knew very little about epilepsy, which I don't think helps with trying to get past the fear factor. I know more now, and triggers that could make a seizure more likely, such as drinking, being sleep deprived or having low blood sugar.

After I was told I'd had a seizure, I knew that I wouldn't be driving for a year. I'm pretty gutted, I'd 
only held my license for a month and it had then been taken away from me. I've also been told not to swim or cycle, while we see if the medication is effective or not. I'm thinking positive and hoping it will, as my condition is not severe as I had 2 fits in 10 months; I've heard other people can have several every day.

This wasn't something I was expecting to happen, but I suppose a lot of things are unexpected. I'm sure in a few weeks when I have my confidence back in doing things alone, I'll be in a much more positive frame of mind.

Wednesday 11 May 2016

The Fear of Relapse

I've been told from the start of my treatment that the chance of relapse is quite low, which obviously is great. However, the chance of me developing cancer in the first place was quite low, which suddenly makes anything, no matter how unlikely, seem extremely possible.
I've reached a place in my head where I've realised that even if I worry or not, if the cancer is going to come back in 2, 5, 10 or 20 years time; me worrying about it will not make a jot of difference.
I've also decided that I need to stop being frustrated about the time I've lost. At the end of the day, my life so far hasn't gone the way I wanted it to. But neither has most other people's, and I don't want to spend the rest of my life complaining about something that can't be changed and just accept what has happened and move on. I'm lucky I'm still here; I should be grateful for that rather than annoyed about how it has affected my life.

Monday 25 April 2016

Race for Life 2016

On Sunday 12th June, Natasha's Gang will once again be running (probably more like walking) the 5k course at the Lincolnshire Showground in aid of Cancer Research UK; but this time with a snazzy new name... Natasha's Gang 2! (Not very creative I know, sorry.)
This year I feel I will be more much able to enjoy the event, and I'll be walking the course with everyone else, instead of being pushed around it in a wheelchair.
I'll always remember the Race for Life last year, not only because we raised an amazing amount of money (thank you all who donated last year) but it was one of the days where I felt absolutely awful. The event fell on the Sunday of the week where I had spent Monday-Friday going backwards and forwards to Nottingham having chemo; not great timing.
I wasn't able to help much with the fundraising effort last year either, and only mentioned that we were doing it a few days before it happened, and only posted it on here after it had happened.
This year however that will not be the case.
I am lucky that over the last 40 years, the 10 year survival rate for Hodgkin's has improved from 50% to over 80%. However, it is only with research that this improvement will be shown across all cancer types, and ultimately there will come a day where all cancer's can be cured with treatment with fewer side effects.
It is with your donations that this vital work can take place, so if you can please donate by clicking here.
Thank you.

Thursday 7 April 2016

1 year

On April 7th 2015, exactly 1 year ago today, I found out I had cancer.
Today, I had my second follow up appointment, and I'm still in remission. I don't have to go back until July. This time a year ago, I didn't yet know what was going to happen.
I thought cancer was a death sentence. That is not the case anymore, and I'm living proof of it.
A lot can happen in a year, both good and bad, and it can change your life beyond recognition.
I'm forever grateful for everyday I wake up and feel well. I was never like that before, and in reality when I look back I was ungrateful for what I did have. I was doing well at school, had a lovely group of friends, and had my family close by. It's a shame that this had to happen to make me realise that.
But now that it has, I will never be ungrateful for those things ever again.
I turned 18 yesterday. For me being 17 will always have negative feelings attached, so the fact I never have to say I'm 17 again is fantastic. It has helped me draw a line under things.
I've realised I should be grateful for what I have rather than sad for what I don't.

Monday 14 March 2016

Charity Ball in aid of Teenage Cancer Trust

Writing to you all this time with very much a 'good news story' which raised a lot of money for charity.
One of my best friends Jess is very good at organising events; she has previously run a very successful ball in aid of the charity work she does, sending gifts to children with a condition called scoliosis, which is a curvature of the spine. Jess has her own experience with this, and had a serious operation a few years ago to correct her own curve. She tackled the whole horrid experience with tenacity and a fantastic sense of humour, and she really is an inspiration to me, and the fact that after her experience she wanted to help others really is amazing.
After I was diagnosed and told her more about how the Teenage Cancer Trust did and still continue to help me in my recovery, she said she was going to organise and event to raise money for them.
I wasn't sure what event she had had in mind, but I wasn't expecting a ball with live music and a photo booth and over 100 people attending.


On Saturday 5th March we took over the Cathedral Ballroom at the Doubletree by Hilton hotel on the Brayford Waterfront in Lincoln; and the total raised including a raffle and an auction was £1720 which is absolutely incredible. £50 can pay for a young person to have 2 hours with a specialist nurse, so that amount can achieve so much.
So, Jess, if you're reading this, you should be so proud of yourself for organising such an amazing event, and thank you.

Tuesday 1 March 2016

Long term effects

Happy March everyone! Finally a step closer towards spring and the milder weather, which I can't wait for!
It was this step closer to warmer weather that made me think more about the long term effects of my cancer and its treatment. The chemotherapy I had made my skin more sensitive to the sun, so I spent last summer covered in SPF 50 even in the weaker British sun. However, I'm going on holiday in April (I can't wait!) and I've had to think about sun exposure much more than I would have done before. I also had radiotherapy to my neck and chest, and these areas should be exposed to as little sun as possible, so I'm taking sun tops for swimming in, as well as my trusty SPF 50.
The radiotherapy I had also means I will need a blood thyroid test every year for the rest of my life, as radiotherapy to the chest causes around 80% of patients thyroid glands to become under active and around 10% to become overactive. I've been told that this can be easily managed with medication if this happens.
I will also be entered into the breast cancer screening programme earlier than usual. Currently, all women aged 50-70 are invited for breast screening, although it varies slightly by county, but this is being extended to 47-73 by the end of this year. I will be entered into the programme when I'm 30, plus or minus a few years depending on where I'm living when I near that age. This is because the radiotherapy has put me at a slightly increased risk of developing breast cancer.
All that being said, this seems like nothing compared to other cancers and their treatments. I still have my eyesight, my hearing and my mobility; and for that I am grateful.

Friday 12 February 2016

Why Haven't We Cured Cancer?

A question I have considered many a time over the last few months. But, as I began to learn more about this disease, I realised the scale of the challenge to be overcome. Here are a few reasons why.

1. Cancer is not a single disease, it is an umbrella term for a range of diseases.
Just like Dementia is an umbrella term for symptoms caused by a range of diseases like Alzheimer's, Cancer is a word that refers to a large array of different diseases that have one main thing in common - the cells ability to multiply and divide (potentially) infinitely. It is also why different types of Cancer's require different treatments.

2. Not every treatment works for everyone.
Even if two different people have the same type, subtype, stage and grade of Cancer, they can still respond differently to the same treatment. I was told at the start of my treatment that statistically 2/3 of people do not need radiotherapy after chemotherapy, but 1/3 do. This highlights the difference.

3. Research into targeted therapies is complicated.
The use of targeted therapies involves analysis of the tumour which can be used to predict what treatment is likely to work best for that patient, and they hold significant potential for improving the prognosis of patients. For example, in breast cancer, tests are carried out to determine whether or not oestrogen receptors are expressed in the tumour. If they are, the drug Tamoxifen is more likely to work in that patient, compared to one where oestrogen receptors are not expressed. However, even this is not a guarantee that the drug will work, as again this depends on stage and grade.

4. Some types of Cancer are harder to identify and then treat.
Pancreatic Cancer has one of the poorest prognosis of all the types of Cancer. This is because by the time the patient experiences symptoms and it is diagnosed, it is often late stage, and therefore not much can be done. Surgery is only an option for 50% of patients, and the 5 year survival rate is 5%.

5. Each Cancer can be caused by a different set of genetic mutations.
This answers why patients with the same Cancer and treatment can have different clinical responses. Knudson's multi hit hypothesis suggests that 5 or 6 'hits' or genetic mutations would have to occur in the DNA to call a cell truly cancerous, and also explains why Cancer is more common in old age - as more time has passed to allow these 5 or 6 hits. However, these 5 or 6 hits are not the same for each Cancer, so there is a potentially endless amount of genetic mutations that can lead to Cancer, that all need researching.

Thursday 4 February 2016

World Cancer Day - 4 February 2016

World Cancer Day is something that I'm very glad exists. Of course it helps to raise money to fund research and provide specialist care. However, it also starts a conversation.
Many people feel uncomfortable talking about Cancer. Think about for one second how many other names are given to Cancer to avoid saying the word. "The C-Word", "The dreaded C" and many others. Cancer as a word strikes fear into the heart of many, quite understandably, but what if we just named it "Weird cell disease". Suddenly it's not as frightening. We need to change how we talk about a disease that will affect around half of us over a lifetime.
We should also acknowledge the improvements which have been made, particularly over the last 50 years. Today, 1 in 2 people will survive their Cancer for at least 10 years. In 1970, only 1 in 4 did. However, the fact that anybody dies of this dreadful disease shows that our work is not yet complete.
Cancer Research UK are running a campaign to raise money around World Cancer Day by selling Unity Bands, so pick one up from your local Cancer Research UK shop, or you can buy one here.
You can also donate £3 by texting WECAN to 70200
We stand united.

Friday 8 January 2016

Lush: My favourites


For Christmas I got 4 Lush gift boxes, further fuelling my obsession with the brand! Lush is a handmade cosmetics company who's products are mostly vegan. Ranging from bath ballistics to shampoo and conditioner and moisturisers.
I've always enjoyed the occasional bath product from there, but with my treatment making me unable to do many things I enjoyed such as horse riding, my attention shifted towards the things that I could still do.
Usually I am a 'shower person'; I find it easier and faster, especially when I had long hair. However, it got to the point that I couldn't stand up long enough to have a shower, and I found it so much more of a chore than I did previously. So my Mum suggested I take a bath, and it was honestly the strangest thing.
For the time I was in the bath, I felt ok. During my worst treatment it was a blessing to just feel ok. I don't know whether that was because the water took the weight off my joints or that it regulated my temperature, but it did more to help me feel better than any of the tablets I was taking. This was when I got back into Lush. I had more time to care for my slowly returning hair so I explored different products I hadn't before.
These are some of my favourite products:
Twilight shower gel - Perfect for relaxing in the bath in the evening as the strong scent of lavender helps you drift off. Sad thing is that this shower gel is only available in the 'Relax' gift set or whenever the Lush Kitchen makes it available. They make it in small batches and sells out very quick.
Daddy-O shampoo - A dark purple shampoo containing violets designed to remove brassy tones from blonde hair, but is still a great shampoo for brunettes too. To me it smells like those parma violet sweets, and contains things good for your hair like organic lemon and lime juice and extra virgin coconut oil.
Roots hair treatment - This hair mask contains lots of mint to stimulate the hair follicle increasing the speed of hair growth. It smells amazing and is very conditioning. I think it's helped my hair grow faster too.
H'suan wen Hua hair treatment - No, I can't pronounce it either. My hair has grown back drier and wavier than before, so this conditioning treatment helps keep it under control using organic extra virgin olive oil amongst other things. The smell is quite strong but when you get past it you can tell the product really is brilliant.
Happy Hippy shower gel - This citrusy shower gel really helps to wake me up, and as I struggle a bit with tiredness it's very useful.
Lord of Misrule bath ballistic - I think this was part of the Christmas range of products and it may still be available in the Oxford Street store. It has a deep musky scent that turns the bath an amazing green colour.
Golden wonder bath ballistic - A Christmas exclusive covered in gold glitter that rattles when shaken just like a present. It turns the water a bright blue that smells really fresh. What more could you want of a product?
Yog nog bath ballistic - Imagine the smell of a stereotypical Christmas. That is what this smells like. It contains pieces of solid oil that melt and nourish your skin as it dissolves. There's a bath ballistic sold all year round that also contains this oil called the Butterball. I love this so much that I have the matching soap, I just hope they bring it back next Christmas!
I hope I've inspired you to invest in some bath and shower products as it can really improve your mood. Happy new year and see you in the next blog post!