My sadness was overdue

Do your feelings do as they are told? Like, brush their teeth and go to bed on time? Or do you sometimes catch them, resembling a naughty child, peering down from the top of the stairs in darkness?

Since the diagnosis, I have kept my feelings in check. I’m not sure if that’s really a thing, but you’ll have to bear with me.

In the run-up to the operation, psychologists wrote to my neurosurgeon, noting the fact that I was “coping very well”. Displaying a “normal range of emotions” and therefore “a good candidate for awake craniotomy”. I found the letters reassuring.

They say that with a diagnosis of this nature, akin to the grieving process – anger usually comes first. In my case, it didn’t.

Self-talk and tears

Last week, things were different. It all stemmed from the need to undergo an assessment.

When the assessor arrived (late!), I noticed his tanned arms (which were hard to miss in the short sleeved shirt that he wore). I was quite envious, to be honest. The best I can hope for is turning salmon pink before going on to achieve just one shade up from milky white. He declined suggestions of brews, (presumably well accustomed to earnest offers of hot-drinks).

So, we made a start.

The night before, I cried. Not neat well-manageable tears. They were sizeable and serious. Slopping down my face, no matter how hard I tried to stop them.

In the morning, before my slot, I attempted to get into the non-crying zone. This consisted of ‘self-talk’, power posing, and anything else I could think of.

I recalled the things my specialist nurse had said I should mention a few days before. Uncontrolled seizures; cognitive deficit (that’s the all-encompassing term for poor attention span, memory loss, processing skills etc.), and fatigue.

The review had to be thorough and that’s what made it difficult.

Now, could you tell me in your own words

We started in the present. How does your condition affect you on a day to day basis, he asked? I reeled off the list (my husband was there too. And he chipped in when I’d missed anything).

Then, we had to go right back to the beginning. What about the diagnosis – how did that happen? A massive Grand Mal seizure, I said, and before that, some sensory things (also probably seizures).

And then? Scans (lots of them), and MDT meetings.

Planned surgery followed. It was unforgettable, (since I was awake), and what with the drilling and exorcist style seizures – felt long, and invasive.

Afterwards, I was physically broken. Neuro-physiotherapy began during those first few weeks spent in hospital, and has continued ever since.

At first, there was the inability to move. Now, my leg, hips and ‘trunk’ (the ridiculous, and amusing physio term for your stomach!) remain weak, and the sensation on my left side hasn’t fully returned.

I have an arsenal of walking sticks (and crutches) that I keep in the hallway, near the front door, and an array of orthotics too – splints, ‘foot ups’ and fancier things like functional electronic devices. I store them in a repurposed umbrella stand, and yet, they still manage to behave badly, getting in the way and ready to cause injury if knocked over.

My surgical team was considerable in size and experience. Although these things happen – no one expected it to go that way. They were apologetic and expressed shock and disappointment. A couple of weeks later, my oncologist would declare the tumour inoperable.

We covered all of this. And, the subsequent treatment. Brain zapping (radiotherapy), and 12 months of chemotherapy. It builds up and makes you tired.

My sadness was overdue

The assessor was patient and didn’t laugh at my tears, or the tissue that found a way to stick to my face, including my forehead.

You see, like a lot of people, I dote on feeling strong.

I do things on my own and (as my friend recently pointed out) – have a tendency to avoid seeking help. As a result, the whole thing made me uncomfortable.

I’ve struggled to put my rational head back on. The one that has become my default, and says things like “it could be worse”. I know that there is truth in that, yet looking at it all laid out chronologically was hard.

Sure, there have been some positives: the classic re-evaluation of life and finding renewed purpose.

But, after 18 months – in the physical sense at least, this might be as good as it gets. There’s no way to be sure, and I can live with it, but, that isn’t the same as wanting things to be this way.

For the rest of the week, I was sadder than sad.

Despite my dogged tenacity, my brain tumour had found a way to break my heart.

Sar x

 

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22 Comments

  1. Barbara Renel
    July 10, 2018 / 9:07 pm

    I haven’t any pearls of wisdom to offer I’m afraid. Just wanted you to know I’ve read your post! Bit of a shit response but a response… x

    • SarahGaffney
      Author
      July 10, 2018 / 9:21 pm

      Lovely to know that you’ve read, more than enough! Xx

  2. Jurgita
    July 10, 2018 / 11:01 pm

    Even the strong people need a good cry once in a while. Sending you a huge hug 🤗

    • SarahGaffney
      Author
      July 10, 2018 / 11:03 pm

      Thank you Jurgita. Back at you! xx

  3. July 11, 2018 / 9:19 am

    My goodness, I really feel for you…I really do.
    Whilst not in your situation by any stretch, I completely identify with “sadness being overdue”. After Dylan’s diagnosis I went into “fight mode” & not “flight mode”, subconsciously suppressing what I identified as “negative” emotions. Like you I struggle to ask for help & like you my anger didn’t surface…for a long time. It was only a couple of months ago that I recognised that I was feeling anger & I really didn’t know what to do about it…so I wrote a blog post…it helped a bit. Utter sadness hit me once he started maintenance & I just didn’t know how to climb back up onto my positive pillar. Sadness hit again just a few weeks ago…lots of heavy uncontrollable sobbing which drained me & left me feeling beyond tired.
    As I said, I’m not in your situation but what I’ve learnt about my feelings is that once I’ve identified them then letting them out is essential to being able to take the next tiny step in whichever direction I need to go.
    This writing thing is certainly helping me mentally though…I hope it helps you a little bit too. Finding someone who can identify with your emotions is also reassuring.
    Much love

    Siobhan xx

    • SarahGaffney
      Author
      July 11, 2018 / 10:41 am

      Thanks so much Siobhan. Finding people that identify is certainly reassuring and like you, I find that writing is a great outlet. The positive pillar is a brilliant analogy! We’re bound to fall off sometimes, and mustn’t feel bad about it. Sarah Xxx

  4. Eleanor
    July 11, 2018 / 9:25 am

    Hi Sarah, reading your post was very emotional – my niece has a grade 2 astrocytoma and your words at the end of the post managed to express how we’ve been feeling – her brain tumour has broken our hearts too. Stay positive (easier said than done I know) – your posts are always so uplifting and inspiring – and there’s nothing wrong with having a good cry!!
    Take care, Eleanor

    • SarahGaffney
      Author
      July 11, 2018 / 10:09 am

      Hi Eleanor, thanks so much for your comment. I’m so sorry to hear about your niece and I hope she’s getting on as well as possible – if she ever wants to chat feel free to put her in touch. It’s lovely to know that you could relate to this post. Sarah x

  5. July 11, 2018 / 2:58 pm

    I feel like we’re conditioned to not feel sad. We feel guilty if we do, weak if we do, like we’ve failed if we do, but sometimes you’ve just got to feel it and come out the other side. I really hope you do come out the other side, you are strong and awesome and powerful and I so admire your positivity but you don’t have to be a ray of sunshine all the time. Sending lots of love and strength your way ❤️

    • SarahGaffney
      Author
      July 12, 2018 / 1:10 pm

      Hey Laura, you’re so right! We don’t make it easy for ourselves. Thanks so much for the positive vibes xx

  6. Ruth Boaden
    July 12, 2018 / 8:13 pm

    Great writing again Sarah. Your tumour broke the hearts of your friends and colleagues too – and whilst we know you can’t always ‘be strong’ – and it’s good to admit that, as you have done so eloquently here – you know that we are all here for you whether you are sad or glad.
    I only hope the assessor will grant you the maximum rate of whatever it is he was deciding about … you deserve all the support you can get
    Ruth xxx

    • SarahGaffney
      Author
      July 13, 2018 / 7:14 am

      Thanks so much Ruth, that’s all so lovely to hear. ❤️ xxx

  7. Juliette
    July 12, 2018 / 9:04 pm

    I don’t know what to say….your sadness makes me sad. Your hope gives me hope. Your optimism makes me optimistic. Keep writing.Juliette x

    • SarahGaffney
      Author
      July 13, 2018 / 7:10 am

      Thank you Juliette, such lovely words! Xxx

  8. Stephen
    July 13, 2018 / 6:36 am

    Powerful read. As ever. Inspiring too

    • SarahGaffney
      Author
      July 13, 2018 / 7:09 am

      Thank you for reading, and for your feedback Stephen. Lovely to hear that you found it moving.

  9. Craig Millar
    July 18, 2018 / 2:48 pm

    Hi Sarah, thanks for sharing so openly. Not surprised that the process of recalling the journey like this has left you feeling sad. Best wishes that the healing process will begin again.

    • SarahGaffney
      Author
      July 19, 2018 / 9:50 pm

      Hi Craig, thanks so much for your comment, and hope you’re well. I’m sure I’ll be back on the way up soon! X

  10. Rachel
    July 19, 2018 / 9:38 pm

    I love reading your blog and follow you on Instagram. My heart feels sad reading this blog and I hope that the sadness you are feeling is now passing. I think sadness can be like waves, and after all you have been through, you were definitely overdue this wave that has washed over you but it will pass and I know you will find yourself in lovely calm & peaceful water very soon & all will be ok again. Sending love xxx

    • SarahGaffney
      Author
      July 23, 2018 / 12:53 pm

      Hi Rachel,
      Thank you so much not only for reading but for commenting too. You’re so right about sadness coming in waves – sometimes the waves are bigger, smaller, choppier! I’m already feeling much better (a holiday certainly helps) 🙂
      Xx

  11. Saara
    July 21, 2018 / 11:45 pm

    Hi Sarah

    I totally understand the feeling. To be honest i think it could be slowly creeping up on me. I was diagnosed with a brain tumour 1 year ago. Ive had 2 surgeries since then, radiotherapy and now im on 12 months of chemo. I did/do the same thing as you, dont really like to ask for help and will almost always put on a brave face. This post really helped me evaluate my feelings a little bit and helped me to realise that this is how and why i could be feeling the way i am feeling right now.
    Thank you
    Saara

    • SarahGaffney
      Author
      July 23, 2018 / 12:55 pm

      Hi Saara,

      It’s so easy to put on a brave face all the time, isn’t it? I’m really touched to hear that you related to this post. And I’m honoured to have helped in a small way with my words. Treatment is a tough run so good luck with it all, and hope to keep in touch via Instagram.
      Sarah xx

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