My Story

Hi Twinkle20, I’m so sorry to read your story. I’m also sorry that I can’t really offer much advice but I noticed no one had replied so I just wanted to say hi & if you need a friend then message me. Sending hugs & good wishes to you & your little girl xx

Thank you Kernowp. Appreciate your reply.xx

Have sent you a friend request.xx

Unknown said:

any healthy lifestyle tips that people feel help keep brain tumours at bay will be greatly appreciated.

Hello, a cancer diagnosis is always a shock. In the first few years it's like you're living in an alternate reality, it's surreal. You have not said what cancer you have but I suspect the most common, which is a glioma. You can go online and read up on it, there is a lot of data available on scientific basis and also testimonies from patients and carers. I presume you have done this already, it's the first thing I did when I arrived back home after diagnosis. I got a lot of knowledge by reading, visited many, many doctors and surgeons over the years, heard all the views and opinions. Other people however prefer a hands off approach and want to keep away from any details. It is up to you how much you want to know and as doctors' opinions differ many times, and the appointments do not last hours and you typically forget to ask half the questions, it's better to do your own research. Also take someone with you because they hear things you do not.

If your condition allows and you can move around then regular (daily) exercise is good as is going out for walks as much as possible. Staying indoors even with a large garden I found it to be very depressing (but then I could not physically move too much). Chemotherapy affects people in different ways, some a lot and some almost none at all. If it is temozolomide many people prefer to take it in the evening before bed time. I took it in the morning and was OK with it. As it needs a fully empty stomach and as I was/am a very bad sleeper, staying up all night with anxiety, I took it in the morning. It causes nausea and the top two meds in my experience and from talking to a lot of people are Kytril and/or Zofram. I was super constipated and took a liquid laxative sometimes but cannot remember what it was, I think it was very sweet.

Hi twinkle20,

I'm sorry to hear of your diagnosis,

I can really relate to your story. I my self was suddenly diagnosed with a grade 3 astrocytoma in August 2019, my son was only 9 months old and I was just coming to the end of my maternity leave. It was a compete and utter shock as I am fit, healthy, active.

I just burst into tears and thought of my son.

I'm 32 years old, my son will be 2 end of this year. I've had an awake crainiotomy, followed my 6 weeks of radio therapy, and am currently about to start cycle 9 of 12 chemotherapy (temolozomide) I'm coping with it fairly well, I get tired and it's hard trying to be the best mummy I can be , a wife and deal with cancer.

But I'm keeping strong and trying to act as normal as possible, it's not always easy, as my body gets tired at times or I feel sad some ďays, but I read a book called The Secret, it's a kind of spiritual mindfulness book, which I found useful.

We all cope differently, I've never found it easy to open up, but sometimes I feel so down and lonely, especially as I had to surrender my driving license ,which was my freedom.

All I can offer advice wise, is to keep active ad much as possible, as that helps you both physically and mentally, and be kind to yourself.

I feel guilty sometimes, but I think may be other people might understand what I mean,  or may be it's just me, I'm not sure.

Like you, my son is my world and all I want is to watch him grow.

I wish you lots of positivity and I hope things go as well as possible for you,  take care of yourself x if you want to chat it might be of comfort for us both ?

Sunshine dreams

Thank you for sharing your story and sharing your understanding of where I was coming from. 

the diagnosis is the hardest part. I think the shock is what got me the most. Now it has sunk in a bit and I have been back in hospital for an infection I have met people who have truely inspired me and made me realise that despite my bump in the road of my jouney of life I am here and I have an awful lot to be greatful for. I will tackle this head on and live the best and heaviest life I can for me and for my family. 

Please don’t ever hesitate to reach out if you need an ear or someone who might understand a bit how you feel. 

all the very best with your treatment when it starts. Sounds like you are handling it all like an absolute warrior. Keep positive and doing what your doing. Sending all the positivity and best to you and your son along your journey. I hope you have a long and healthy life together!xx

I hope you are well, I’d love to know your ok and where your journey is x