POST 13: A MESSAGE FROM ANNA’S MUM

So while I have been in ‘hiding’, I have been getting “encouragement” from my Mother to write on here for weeks and weeks and weeks….

Although I have finally done so, my Mum did write a post the other week, and I thought it would be nice to share her thoughts and opinions on these past couple of months alongside my own…

Linda’s Takeover: Message from Anna’s Mum

Hi everyone

I thought I would just give you an update as to how Anna is progressing at the moment. Unfortunately she has been feeling quite poorly over the last few weeks and has not had the energy to write a post herself.

As you know, Anna finished her 7 weeks of radio/chemotherapy, she then had a 4 week break before her follow up appointment on 14th July at Charing Cross Hospital. This was a full day at the hospital; bloods taken, MRI scans and a meeting with the consultant in the afternoon. Even though prior to commencing her course of treatment, we had been warned that Anna’s type of tumour does not usually respond well to radiotherapy, I don’t think any of us were prepared to hear the shattering news that her tumour had grown during the 7 week period. We were made aware that it was particularly aggressive growth. Anna was very strong on hearing the news and typically asked to see the scans for herself. It was very apparent that Trev had decided to take up more room!! I must admit, I wasn’t as strong as Anna and had a bit of a ‘meltdown’. The consultant decided to delay the start of Anna’s next round of intensive chemotherapy until another scan could be performed; this was to ensure that chemo was the correct next step. An appointment was made for Anna to return on Thursday 16th July to have a ‘perfusion MRI scan’; this is a more detailed scan that can identify if and how blood flows through the tumorous/non tumorous brain tissue. Obviously we’re still reeling from the scan results but we are hopeful for any slight positivity that may arise from this secondary scan.

Since that day, Anna has now started her intensive chemotherapy treatment. Wow!!! This is rough for her to say the least. The dose is double the strength and doesn’t she know it; Day one she was very sick, followed by a couple of fairly good days; it was all downhill after that. This session has wiped her out completely! Sickness, loss of appetite (which I know Anna would usually be pleased about!!), tiredness, headaches… The most frightening thing has been periods of ‘drifting away’, which for her family and friends has been so awful to see. Through it all previously, Anna has been so brave and ‘with it’, even when sick, however, this latest round has wiped her out completely, even engaging in conversation has been so tiring for her and her enthusiasm has waned for even the simplest task. To say “I want my Anna back” is so selfish, but I feel so helpless at the moment. I just want to take away all the pain all the sickness and to make her smile and laugh again.

It’s now 10 days before she starts her next round of chemotherapy, hopefully, these days will be good ones for her. At least she and we know what to expect this time! I do hope a different anti sickness drug will help her to battle the side effects and that it won’t be as bad; everything crossed.

Meanwhile, normal life has continued; Anna has celebrated her 24thEnid and Dad birthday!! Believe it or not, we’ve bought a puppy for her!!! Now, for Andy and Enidthose of you that know me personally, I can’t believe I’ve allowed this to happen!! Actually, the new addition to Anna’s family is Enid, a Springer Spaniel puppy. She won’t join Anna until the end of August when she will be 8 weeks old. Anna is beside herself and has met Enid twice; lots of photos, videos and cuddles took place and she can’t wait for her to arrive. Puppy training classes will be booked pronto!!!! Anna has always wanted a dog but as Keith and I were always working full time, we decided it wouldn’t be fair. Our family circumstances have changed a lot over the last couple of years and of course, Anna’s have changed dramatically, we’ve now decided the time is right!! Over to you Anna for puppy walking, training, babysitting, cleaning, feeding etc …

Enid

Since Anna’s last blog, so many of you have continued to organise fundraising events. Some events have already taken place, some pending. What is consistent is that you are all totally amazing!! We are all very grateful for your continued love and support and cannot thank you enough for the efforts put into raising money for The Brain Tumour Research Campaign. I’m sure when Anna is feeling up to it, she will fill in the details of all the events and money raised. Thank you everyone from the bottom of my heart!!

I have always believed things happen for a reason, but sometimes I do have to question this. One thing I am sure of though is that I couldn’t be more proud of my very brave daughter. I am proud of the way she has handled the original diagnosis, how she is continuing to battle her illness with every breath in her body, but I am so, so proud of the selfless way she has thrown herself into fundraising for such a fabulous charity. I know Anna, her family and her friends want a cure for her to save her life, but as Anna said in one of her earlier blogs, if she can do something to stop anyone else from going through what she is having to endure then it will have been worthwhile.

I will do everything and anything I possibly can to keep my daughter here with us for as long as I can and I know you all will too. I’m not ready to let her go for a long time yet!!!! Gloves are still on Trev!!!!!

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POST 12: WHERE TO GO FROM HERE…?

Hello!

I wrote this part of my post quite a while ago now, but never got round to checking it and posting it, but here you go…

(Written roughly w/c 29th June 2015)

Well, my break from treatment has flown. And I have had many of you asking if I am okay as I have been rather quiet since finishing chemo/radiotherapy on June 12th

Truth is, I have struggled the past few weeks, and I want to try and be as honest as possible with you all, without being too much of a “negative Nancy”, as my mood has changed over the past couple of days or so and for my own sake I would like to keep steering in this more positive direction. And I am really late – I should be packing for my trip down south right now, so I won’t keep you for long. (That is now a lie – apologies!!)

I have had, like the doctor did mention could happen, severe side effects in terms of fatigue since completing treatment. I have found it hard to conjure up the motivation to shower, get ready etc. let alone go out. I have then found myself in a vicious circle; the less I do, the more tired I become; the less I do, the more I think; the more I think, the more negative thoughts that enter my brain.

The main thought that has been bugging me (in all honesty, scaring) me the most, has been that we are in JULY! It has been over seven months since I was taken in to hospital now. As much as I like to remain positive and hope that I will live a HELL OF A LOT longer than the average 3 year diagnosis, if we do take this 3 year figure – I have already fought through 7 months out of 36 months already. 7 months, gone, just like that!

Other times, I have been worrying about my scan that is scheduled for Tuesday. What if the tumour has grown?! I have been trying to play it through in my mind of how I will deal with the news if that is what I will be told; but nothing can prepare you for that. I try to remind myself of a previous blog post I wrote, when I spoke about how a session at the Maggie’s Centre taught me to deal with uncertainty and how not to try to worry about things that are totally out of your control; but I am most definitely NOT a pro at this yet! So, I sit here, begging for the best case scenario; I want to hear the word STABLE. I want to be stable. We always knew that Trev was not very receptive to radiotherapy treatment, so I am not being ridiculous thinking that I will be told it has shrunk or anything; just stable. No growth please!!!!!

Tuesday is also when I will begin my next load of chemotherapy; Temozolomide again, but this time on double dosage, for 5 days, and then off for the remainder of that 4 week period. Depending on my reaction to it, this could last for up to 12 months. A year; blehhhh! I am, again, expecting the worst; if you remember, I was very sick on my first day of chemo in the back end of April, thus, on double the dosage, I reckon it may be quite tough.

I have basically just felt a bit POOP! I have piled on weight, I have no hair, I have minging skin (all may seem so little and trivial in the grand scheme of things I know), and being completely honest, I don’t think I have ever got my head around the fact that I have cancer (nope, I certainly haven’t, as it still feels odd typing it out).

I feel like I need to apologise that this post is probably a bit of a let down and not very “Anna-like”, but I think it is important that you know that even people who can come across really tough on the surface, and put on a smile and a brave face, can be just as weak and vulnerable as someone who cannot hide it as well. Most of the time, I find I put on the brave face to save my family from having to deal with an emotional wreck 24/7. But if these down weeks have taught me anything, it is probably that this is not a good action plan. I need to let them know exactly how I am feeling; and I want to let you know too. And I should not apologise for having such feelings.

In actual fact, I found this quote online the other day, probably when I was stalking someone I do not know on Instagram (as you do….right?!):

Never apologize for how you feel. No one can control how they feel. The sun doesn’t apologize for being the sun. The rain doesn’t say sorry for falling. Feelings just are.

On the flip side, I have been on the radio again, BBC Tees had me on Radiofor a full hour show which was fab. I have been amazed by the on going fundraising support and ideas from so many people; it really is humbling and I am so honoured people have taken this campaign to their hearts and are willing to help try to find a cure to save my life and so many others alike.

I need to remind myself, and inform you, that since deciding to start fundraising on behalf of Brain Tumour Research Campaign, only at the beginning of March 2015, and, with the help of all of you wonderful lot, the total we have raised cumulatively has now ticked over £27,000!

TWENTY SEVEN THOUSAND POUNDS!

This is when I get a “kick up my derriere” and realise that I am doing good! WE are doing good! No, actually we are doing better than good! £27,000 is INCREDIBLE!!!!!!!

change lives quote

I am blessed that no matter how I am feeling mentally, I always have the support of so many; family, boyfriend, loved ones, friends, adopted families, brain tumour buddies, and people who have come across my blog and have made the conscious decision to help me on my journey, most without even knowing me at all!

I will be sure to let you know how I get on this coming Tuesday, I will just apologise in advance if it is slightly delayed, as I will be starting on my chemo.

But this is it; Fresh start; Positive Anna. Speak soon!!!!

pick yourself up

Scan Results

My appointment was on July 14th 2015. It is now August 8th 2015. So I broke my promise to you all I am afraid.

Some of you who follow Inside My Head on Facebook also, may already have seen why this is the case. Please see below what I posted:

facebook post number 1facebook post number 2

Trev, the bastard, had grown 😦 .