Post-Op Reflections II

Over the last week or so I have been struggling. Again, I have tried numerous times to start this blog post with a sense of positivity, a sense of accomplishment of the things I have achieved each day, but I can never get more than a paragraph or so deep. This mirrors how my days unfold and I have realised it is impossible to use this blog as a tool to convince myself I am okay, to make myself happier.

Every morning I awake stronger and, after shaking the initial feeling that I have been hit by a bus in the night, I get ready for the day, each time a little more independently than ever before. Indeed, today I showered and washed my hair for the first time since the operation and it felt good. I smelt good, and I was good.

But it seems each day after my initial burst of energy I begin to get lower. I set myself goals for the day, pushing myself to become more active, trying to prove to both myself and the physiotherapists that I am getting there, that soon I will be able to go home. Whilst I may be happy with my physical progress, I know deep down that I am trying to overcompensate for that feeling of weakness and desperation that I experienced in intensive care, and that I continue to feel even now deep in my bones and my mind.

This MRI scan image shows my spinal fluid leakage. It is referred to as a pseudo leak, since the fluid has spilt into a nearby cavity and is flowing around the now extended system without causing any symptoms. The leak is harmless as I am not experiencing any headaches nor is the fluid leaking from my wound. It does however give me a weird swelling around my back and hip area, making me look like the reject Kardashian sister.

Little things are difficult. Little things that I took for granted before, like the ability to point my foot or spread my toes. The physiotherapists don’t test for this, and don’t realise that these things matter to me; they are nice but not necessary. But not being able to do this makes me feel old and tired, and it frustrates me.

My body doesn’t feel like mine…It feels detached somehow. Parts are numb, whilst other parts are hypersensitive and burn to touch. I feel like I want to stretch but I can’t stretch far enough, and it is driving me mad. This morning I looked in the mirror and I didn’t recognise my own body. There is swelling around my stomach and back, which a recent MRI has shown to be a cerebral spinal fluid leak. This is nothing to worry about, since I am totally asymptomatic, but it does mean that the swelling on my back will never go down. This is such a minor thing and I shouldn’t care about it, but I couldn’t help it as I stared at myself in the mirror. I felt ugly, and to me, it matters.

I feel guilty that I am not more grateful for how the operation went, because as I said before, it could not have gone better. It was an eleven hour whopper of an operation, and I should be thankful for how little has changed considering the enormity of what was done to my body. For four and a half hours I was lain on my back
and opened from the front. My organs, including my bladder and bowels, were moved to the left slightly, and I was sewn back up. I was then flipped onto my front for six and a half hours, opened from the back and the right side of my sacrum was removed along with a disc, several nerves and the tumour. Titanium screws were put in to reconnect my spine to my pelvis, a massive cerebral spinal fluid leakage from my last operation was repaired and I was sewn back up. So yes, considering what the operation entailed, I am lucky that not more has changed. But I don’t feel it, and I feel awful admitting to that.

And it is shameful that I should feel this way because I am so lucky the operation went so well. I am lucky to be at such an amazing hospital where there is such expertise and highly skilled staff. I am lucky the biopsies showed what they did. But sadly these things aren’t hitting home in the way they should: rather than being happy for the above, I just feel sick when thinking of their alternatives. Rather than being happy that I will not need another operation, I balk at the idea that there could have been another and scold myself for the fact that deep down I honestly do feel as though I would not make it through a second. Physically, yes I’m sure I would have got through, but mentally… Mentally, I am not so sure. This operation has taken its toll.

So yes, I am struggling. I am not ashamed to say that I am struggling more than I ever have before. I will need help this time to get through this, through the coming weeks and maybe even months ahead because this surgery has hit me in a way that I never thought anything ever could. It has made me weak, it has made me ashamed and it has stripped me of my pride. But I hope that in my cries for help I have taken ownership of these things, that as I speak about my feelings they become more normal and I learn that they are not things to hide away in the dark corners of my mind.

These are my feelings, my thoughts and I will take ownership of them and hope that this makes me stronger, mentally and physically. Because that is what I want more than anything, to feel strong and better again.

About the Author

tumourhasit@gmail.com

17 Comments

Jayne

Beth your operation was a success and it is going to take time for all your emotions and hormones to calm down but you have a wonderful family behind you to keep you positive and strong xxxtake a day are time and you will come out of it all with no cancer to take you back down xx love Jayne X xxxx

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Nikki chapman

Beth
Well done my darling an amazing blog. The way you feel is so normal it’s a bloody long hard road ahead. Sadly and frustratingly no one can make it better. You are young and that’s why you want to be better NOW. I think you are so brave and you know in time it’ll feel better . Until then keep writing your feelings down and hopefully we ca. Help ease the pain.

All my love

Nikki

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Carol Mountain

No matter how dark the tunnel seems at times, you will come out the other end. Don’t be afraid to lean on those who are there to support you – that’s what love and caring is all about. Just spent a pleasant afternoon with your grandparents picking apples at the Gorham’s. Even had some sunshine!

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Ellie Somovilla

Asking for help isn’t a moment of weakness! I know it’s hard to accept at first but everyone has moments where they struggle or need others, just part of life and nothing to be ashamed of whatsoever… You have nothing not to be proud of how you have coped or acted. You say you just want to feel stronger and better… You have already been so strong! And the worst has gone there is only better to come you will get there I know you will. Lots of love as always you have already made so much progress xxxxxxxxxx

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Sharon Turton

Hi My Gorgeous Beth,

I have read all of your posts, and each time have wanted to post something that was wise, humorous or just down right mind blowing – and what could I come up with – bloody nothing – am officially useless!

What can I say to make you feel all better and let you know that at some point, in the not too distant future, you will start to feel like you again. I honestly promise you, you will, but of course that is so easy to say and if I were you and someone said that to me, I would tell them to buggar off and come up with something more profound than that!!!

You are so loved honey, you just have to read some of your posts. You have the most amazing family and friends, and with that support, you can conquer this bloody shitty time your having (can you believe I just had to ask Nick how to spell conquer, see am definitely officially useless).

Keep the posts coming, they make me cry and laugh, and we are counting the days till you come home. That Champagne has been an ice an awful long time and is looking more and more tempting with every passing day.

Loads and loads of Love, Sharon, Nick, Tom and JT xxxxx

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Anne Jepson

Dear Beth tap into all the love and support that is flooding your way, bathe in it, imagine it filling every fibre of your body. You are going through one of the worst nightmares, please don’t apologise for how you are feeling, you are allowed to have a good moan, rant, scream, whatever you like, there is no weakness here, just a strong young woman who needs a break. Sending love and support to you and your family xx

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Jane Radcliffe (friend of Mandie Golder)

To be so open and honest will help so many other people going through similar times. It also helps us and those close to you to truly understand what you are going through and will allow them to support you. To me as a person who only knows u from afar you are amazing and a true inspiration. You will come through this tough tough time x

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Judith

Your honesty in the face of such pain and trauma is quite humbling. Beth your are inspirational and I hope that I might be able to show just a fraction of this strength if I have to face adversity. You are amazing, strong and very inspiring. Best wishes and healing thoughts sent your way. X

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Ruth Conway

What comes through all this is that you are a very strong and special person and you will overcome all the problems you are encountering. We will all be there for you to help you on your way. Good luck with everything. xxxxx

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Stuart

Crikey, that brought a tear to my eye. We have never met but all I can say is, that I like everyone else on these blogs is pulling for you. Your honesty, your bravery and your strength is truly humbling. You will get stronger physically but more importantly emotionally as well, just give yourself time. Take care and keep writing

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Donna Dawson

Hi Beth yet again an amazing blog from a super amazingly strong young lady. It’s not surprising your emotions are all over the place but you must never feel ashamed at all. My god you are such a brave person considering what you have been through. A tough few weeks ahead I am sure but all the love and support from your family and friends will see you through. Keep the blogs coming. All our love Phil Donna Luke Sean and Lauren xxxx

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Stuart

Another powerful, honest and inspiring blog. You are some amazing young lady. You will get through this physically and emotionally. Take each day as it comes and stay strong.

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helen

Blessings to you,
and courage
May you find beauty in something each and every day, to give you strength and calm.

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Barbara

I was so moved by your so very honest writing Beth. Writing or talking about how we feel is almost always a help in making the fears and worries concrete and therefore helping us to face and cope with them. Stay strong, your body has gone through a huge trauma physically and mentally and you shouldn’t underestimate the time it will take to heal. There are bound to be good days and bad ones in the process but you recognise the progress you have made already so hang on in there. Lots of us thinking of you

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Puja Varsani

You have been a pleasure to work with and incredibly brave. Your blog is inspiring and I am so proud of you. DOG ward will miss you 🙂 xx

P.S. Sarcoma UK on twitter are a good platform to share your blog, should you decide to.

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tumourhasit@gmail.com

Thanks Puja for your message, I will do that! And thank you for getting me through a tough couple of weeks, I appreciate all the time you invested in me and, although I am glad to be home, I have missed DOG ward too xxx

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