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I’ll get by with a little help…

 

I think my heart broke 2 years ago. I think it broke to the point that it will never truly be repaired.

No matter how hard I try I can’t remember what it was like to be me prior to January 8th 2015. I said in a previous post that all of this has made me a better version of myself, which is true, but it has also shown me how I have a tendency to bury my feelings, pretend it’s all ok, smile and carry on. The great British way!

It’s not so hard to keep up the charade when something bad happens then life carries on, time really is a magnificent healer. Living in what can only be described as a nightmare for two years has meant that the feelings I have been burying for so long are slowly rising and I’ve acknowledged small differences in my behaviour. I feel anxious a lot of the time, I shake like I’ve drunk too much coffee, I’m losing the ability to see the positives and I struggle to relate to most people, meaning I find myself closing up in or avoiding social situations. The main trigger for this I believe was when chemotherapy ended and the hospital grip was loosened. We were effectively left to go it alone (obviously we are not, we still have a team on the end of the phone should we need it!) the regular hospital visits and the knowledge that something was being done was strangely comforting and I really didn’t realise that until it was gone – the old cliche!

I have had a few counselling sessions now, I found a local lady who just lets me sit and talk about everything, no judgement and no need for her to try and make me feel better. Friends and family are so amazing and I am eternally grateful to those people who send me a message every now and again, just to let me know they are there, but their job is to make you feel better, bring all the positives to the table when actually sometimes you just want someone to agree that it’s all a bit shit, and just listen.

I’ll never stop smiling though, even through my tears.

730 days & counting…

2 years.

They say time flies when you’re having fun but apparently it also flies when you’re not!

Last year I was so aware of the significance of this date, I re-lived everything that happened in my mind over and over again, wondering if there was anything we could have done sooner, scrutinising all our actions and wondering if we asked the right questions.

This year the day just passed without any thought. I remember writing the date down somewhere and thinking it felt familiar but it wasn’t until later that day that it finally clicked.

This life is so ‘normal’ to us now that I honestly can’t remember what my life was like before Eleanor’s diagnosis. Having a child with a visual impairment is tough but it also makes you think outside of the box, challenges you and I truly believe it has made me a better version of myself. I won’t lie, I often wish things could be more simple for us. I’d love to have a more carefree outlook and not feel the blood drain from my body every time she gets a common bug. I’d love to be able to watch her run in the park or ride a scooter but our life is a different kind of ‘normal’ now.

The years ahead are so uncertain, as I have mentioned in previous posts now the chemotherapy protocol has ended we live 4 months at a time, in between scans, and hope we have a good chunk of time where her tumour remains stable.

The next scan is at the end of February, fingers crossed!

Happy New year everyone!

Kelly x

 

 

5 going on 15…

The scary thing about brain tumours is that the list of possible side effects is absolutely huge. If you think about how your brain controls your whole body just a small lesion in any part of your brain can cause catastrophic and sometimes irreversible damage. We already know that eyesight can be severely damaged, but due to the location of Eleanor’s tumour vital hormones associated with growth can also be affected.

Towards the end of the school summer holidays, Eleanor pointed out that she noticed a lump under one of her nipples, of course our immediate reaction was panic, any mention of the word ‘lump’ in a place where one shouldn’t be is frightening. After a short time we rummaged around in the boxes of our minds and recalled a conversation with Eleanor’s endocrinologist (hormone specialist) back in early 2015; due to the location of the tumour there was the possibility that Eleanor’s body could be forced into early puberty (or precocious puberty) Like most lists of side effects you rarely think it will happen, usually it’s a small percentage that encounter them so you tend to put them to the back of your mind.

We managed to arrange an appointment for 4 weeks later with the endocrinologist – a long agonising wait as consultants are busy and we had to give her body time to build up hormones to ensure there were no borderline results. Following the appointment and over the course of around a month, Eleanor had a number of tests; a physical examination, a hand x-ray to determine her ‘bone age’ an ultrasound of her uterus and ovaries and an LH blood test to test for a particular hormone in her bloodstream (click on the link for more information on the blood test)

 

 

Once all the tests had been completed we met with the endocrinologist at the Royal Marsden for the results. At this point I was completely certain that she was going into puberty as a lump had now appeared under the other nipple too, but that strangely didn’t prepare me for the absolute certainty the consultant had when she looked through the results in front of us. Eleanor’s body was 100% going into early puberty. I cried immediately, I didn’t think I made a sound but Eleanor put her hand on my lap, looked up at my face and then put her hand on my cheek to feel my tears. She is so aware of everything, I suppose its true that her other senses are heightened due to her loss of eyesight. I couldn’t tell you why I was suddenly so upset, maybe just the confirmation and realisation that this was something else my darling girl has to face which will hurt her and could cause its own bunch of side effects.

We were told that treatment will consist of a monthly intramuscular (IM) injection that Eleanor will have to have exactly every 4 weeks until she is eleven. We were then told that treatment was to start immediately, as in, that day which we were certainly not prepared for, so we were given a prescription and sent off to the nurses on the day ward. When the time came Eleanor sat on my lap and her favourite nurse administered the injection. Unfortunately it wasn’t as straight forward as we had hoped; the needle provided with the drug pack was too thin for the gloopiness of the mixture so it blocked meaning the nurse had to take the needle out of her leg and replace it with a bigger one! Eleanor was rigid in my arms, sobbing and asking if it was over yet. Tears were running down my face, it never gets easier seeing your child scared and in pain. Never. It was quite a traumatic experience for her and despite her bravery it was all too much and she was sick in the car on the way home, resulting in an afternoon of cuddles and loom bands instead of school.

 

 

Thankfully this is something that can be treated but as with everything it brings it’s own set of challenges. She may have a change in mood close to the time the injection is due – imagine a 5 year old with PMT! There is also the chance that when the injections are stopped her body will not naturally go into puberty and she may need some help.

Yes, more injections. Yipheeee!