POST 7: KEEPING YOU ALL “INSIDE MY HEAD”

Hello, me again! I hope everyone had a wonderful Easter and you have all managed to come out of chocolate comas…I am still struggling to be honest!!! This is not going to be a very long or detailed post today…I just wanted to keep you all “Inside My Head”, as such.

This past couple of weeks or so, I have found it very difficult to control my emotions, and I have been getting quite upset about everything, all hit me like a tonne of bricks. I wanted to tell you all about this, as although I may come across in posts as very tough and strong, EVERYONE has their weak moments. I have more than reassured myself that this is fine, and even probably good for me, and it certainly does not make me any less strong! It is however, quite bizarre, because I find myself getting annoyed at myself after I have cried- It has not made anything better, it gives me even more of a headache, I feel like an idiot and I look like CRAP after I cry as my skin goes all weird!

I am probably not wrong in thinking that there are others out there who have been given the same prognosis as me, who do cry every day, and have not chosen to tackle the news the way I have in general. I tell you what though, the crying thing is tiring and very draining! And I am lucky that overall, I don’t really get too upset about it all…I don’t think I could cope!

I was having a quite in depth conversation with my Mum the other day, and I found myself saying the most bizarre thing: “I have never been happier”. Although I have obviously been given the worst news I could have ever imagined, I really have not ever been so content with my life. I feel like I genuinely have a purpose in life now and I am so determined to make a difference. Three months in to my journey, I have spoken to/met some incredible people, as detailed in my last post, I feel I have turned into a much better person and I certainly have a different outlook on life! My purpose is to use my devastating news to great effect and to help beat brain cancer!

This week in particular has been very busy! I am all about the Cinderella Ball hype at the moment! (Saturday May 2nd , Wynyard Hall ).

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Aside from the fact that I am freaking out as I have put on too much weight and my ball dress looks Minion diethorrific (I HATE YOU STEROIDS), I have desperately been trying to get all the loose ends tied up before my radiotherapy and chemotherapy starts. I am so lucky to have an amazing network of family, friends, adopted family members, and complete strangers who have been incredible in helping me with this grand task….and I tell you what, it’s shaping up to be a pretty good night if you ask me! The generosity of others has, is, and will continue to absolutely astound me! I can only apologise if I have not been able to/do not have the means to contact you all individually to thank you; but sincerely, from the bottom of my heart: THANK YOU SO MUCH!!!!! Without your help, I would not be in the position to fundraise for this worthy cause.

Now to fill you in on my long day in hospital yesterday…I went to meet with the oncology team at Charing Cross to sign all the paperwork to confirm my agreement to having radiotherapy and chemotherapy, to have my radiotherapy mask fitted, and to have a planning MRI scan for the treatment. Albeit an extremely long and tiring day of waiting around, all was completed, and I am ready to rock ‘n’ roll! The initial meeting filled me in on all the short and long term effects of the treatment; this was a lot to take in and, although I know this is bad to admit, I almost found myself sat there like a nodding dog at times. There are SO many potential side effects that they are obliged to have to let you know about, but really, I need to have the treatment to fight Trev; and that is what will be done, regardless of side effects. I was slightly rude yesterday though, only in a jovial way, I PROMISE; the registrar was explaining long term side effects that would potentially affect me in later life; he was discussing a particular knock on effect for 15-20 years time, and I just burst out and said, “ well, to be honest, I have been told on average I only have three years left to live, so, if I am alive in twenty years time, I will be over the moon and won’t worry too much about these side effects!!!”.

The most difficult part of the day for me was when the subject of fertility arose. When I was first given my prognosis, this was one of the first things that broke my heart, it was never spoken about by doctors, but it was one of the main thoughts that came to the front of my mind; the fact that, potentially with such a short time to live, I wouldn’t be able to have my own family – get married, have children etc. But, if you have been reading my blog from the beginning, I have made it very clear that I am more than determined to MAKE THIS HAPPEN! I became an aunty to Amber when I was only 7 years old and from the first time I held her, I loved looking after children. As detailed previously, I have 5 niece/nephews and have therefore always grown up having babies/children around me. I have always known I have wanted to be a Mum; so this is quite a raw subject for me I am afraid. Yesterday it was explained to me that my chemotherapy drug, Temozolomide, may cause infertility, or make it hard to conceive. I find myself in such a weird position; obviously, right now, I am in no position to consider having a baby! Even before my prognosis, I had always said I probably wouldn’t plan to have children until I am about 30 years old and I am happy with my career etc. and that feeling probably has not changed as such; if I can defy my prognosis, I will still want to be successful, and bring children into the world when I feel the time is right. The discussion yesterday however was hinting towards the fact of, well even if I do live longer than expected, this decision may well then be totally out of my hands. I am completely aware that, unfortunately, through many differing scenarios, many women face the same problem today, and I know I won’t be alone in this worry/upset…but my god, I want to be a Mum SO BAD, and my heart reaches out to those who are in the process of trying to figure out how they are going to do that. Anyway….sorry, got a bit deep there and I cannot waste my time dwelling on something out of my control!

 

Now on to the funny bit of the day and where you can laugh at my photos; the radiotherapy mask fitting! First of all, I was so relieved to come into contact with such lovely ladies working in the radiotherapy department at Charing Cross yesterday, they were genuinely SO lovely and this bodes well for the 6.5 weeks of treatment I will be having there! The process of having the mask fitted itself really was not too bad at all. Felt slightly odd, but nothing I could not handle and nothing that made me feel uncomfortable. After explaining to the lovely ladies that I write this blog, my Dad became chief photographer and took these delightful snaps just for your entertainment:

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Having sent them to my Mum, she replied saying that I looked like Sunny, Will Smiths robot in the film I Robot; brilliant Mother (yet again 😛 )! The mask was moulded to my face, markers were Sunnydrawn on, and the mask was left on my face to set into place. All in all, I would say it only felt like I was in the room for a maximum of 20 minutes.

As mentioned, I also had a planning MRI scan yesterday; prime nap time for me! Over the next couple of weeks, my treatment will be planned. Aligning lots of different images, the team will decide how and where to target the radiotherapy so that the most effective course of treatment is given; I still find it all so intriguing!

I have been given a provisional date of Monday 27th April for commencing my treatment. They have been really accommodating in terms of timings, so provisionally my treatment will be in the afternoons, allowing plenty of time to travel from Hertfordshire each day without it all being too hectic, and in case I get fed up of the Southern life, this will allow me to return to Northern land for the weekends very easily if I am feeling up to it…travel up on the Friday after treatment and return on the Monday morning, giving me 2 whole days travel free!

Well, I actually feel like I have blabbered on more than I was planning too, so I think I will wrap it up!

Next couple of weeks is operation FIT IN MY BALL DRESS, make the most of the time now I am feeling relatively “fine”, organise the ball as much as I can, and get ready to start giving Trev’s butt a good kicking as of the 27th!

 

I thank you all as ever for your continued support, I really could not do it without you all!

All my love,

Anna

 Thank you!

 

11 thoughts on “POST 7: KEEPING YOU ALL “INSIDE MY HEAD”

  1. Hi Anna just wanted to say we know EXACTLY how you feel. My daughter, Becky, was diagnosed with glioblastoma 4 aged 23 years seven years ago. She was more devastated to be told pre chemo/radiotherapy that she may be left infertile than she was when she found out she had a brain tumour! However six months after completion of treatment (6weeks radio/chemo followed by 6 months Temozolomide) she had a (very) surprise pregnancy. She had no problems at all and Becky is still with us seven years later with her beautiful, healthy and happy nearly five year old daughter, Phoebe Hope. Take care claire xxx

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    1. Wow! How lovely of you to take the time to send me this comment! And whilst I am sorry to hear that this awful disease has struck your family too, it is an absolute joy to hear of Becky’s journey….she must be one very tough lady!!! Please send my love to her and Phoebe Hope and I thank you again for giving me some hope :). Lots of love, Anna xxxxx

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  2. Love you sooo much Anna can’t wait to give you a huge hug when you come to see us in stoke lots of love Wendy, Andy, Ryan and Alisha xxxxxxxxx

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  3. Stay positive Anna. I’ve had the same diagnosis as yourself. I had Tomotherapy at the Freeman in December (thankfully I didn’t have to have chemo). I’m back at work & waiting for follow up MRI to decide next step. No one knows what’s ’round the corner’ but with your positive attitude like me we’re going to beat this xx

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  4. I read your blogs often and to say you’re amazing is not quite the word, in fact I don’t think there is one.
    Never be afraid to cry, although yes, very draining… you are dealing with this in the most impressive way, as thinking about others who are going through similar is the most unselfish thing and trying to change the future for those with this lesser spoken of Cancer is simply wonderful albeit still very ‘😔’.
    I know your family must be so proud of you. I only really know Matt, although not for some time now, but I know he must be so so so proud of what you are trying to achieve for the sake of others.
    That really shows the person you are..
    Amazing.

    Be strong. Much Love.

    Nichola. In Darlington. Xx

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  5. Love reading your blog. I have a different cancer to you but find your words an inspiration and you are such a wonderful woman. I may never have children either but one day at a time is my main motto for now. I hope your ball goes well. Lisa xxx

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  6. You are actually incredible. To be facing this kind of adversity with a smile is an amazing thing. You rock ❤ *follows your blog*

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  7. I send my best wishes. My wife Dorothy has just been diagnosed with a brian tumour so it’s all a bit new to us but we’re dealing with it.

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    1. Hi Terence, thank you for taking the time to read my blog and to send your best wishes! I am ever so sorry to hear this awful disease has affected Dorothy too 😞. Please send her my love! If there is anything I can ever do to help or if she simply wants a chat with someone who knows what she is going through, do get in touch xxx

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