Emergency Admission

I wrote this a few days ago, just after I was transferred to UCLH. This is the first post for a while, and it is likely to be the last for a while longer. As you may or may not be aware, I have been in hospital for the past two weeks after being admitted with severe abdominal pain. And when I say severe, I mean screaming out, begging for help, uncontrollably shaking, turning blue severe.

It turns out I have a partial bowel obstruction, caused by the fluid from my CSF leak being reabsorbed and leaving a vacuum where half my sacrum was removed. This has sucked my small bowel back and caused it to herniate internally. Apparently the treatments to cure you of one thing can often have potentially life threatening consequences.

Right now I should have finished treatment. I should be feeling crap from my last round of chemo but be riding the tail end of that crappiness, ready to embrace life after chemotherapy. It is not fair because this should be a time for celebration, a time that I have longed for and eagerly awaited over the past eighteen months. Instead I have spent the past two weeks in St Helier, will spend the next week here at UCLH waiting for my surgery, and then will spend the next however many days here recovering from that surgery.

I am scared about what this surgery will entail, because we are not exactly sure what that is and what it will mean for me. More than anything though, I am scared about the pain coming back before they get round to operating. Over the past two weeks I have experienced multiple severe pain episodes unlike anything I have experienced before. I know pain; I live with the chronic pain from my surgery on a daily basis, and dealing with the acute pain during the recovery from my spinal surgery was no walk in the park. I hate pain like anyone, but I am used to it. This is not just pain though.

Each time I have an episode I start screaming, shaking, vomiting uncontrollably. I turn blue, wake up having panic attacks for the week afterwards, start begging anyone and everyone to help me. Physically I have been told they are not life threatening, but that is not the only thing that is important. This may not kill me but mentally what will be left if I have to go through any more of these episodes?

The day before yesterday it was uncontrollable and staff at St Helier were in the process of clearing a bed in the high dependency unit for me, so that they could sedate me, before I vomited, wet myself and the pain vanished. Yesterday I could barely talk to anyone, I couldn’t get any words together. I felt empty, hollow, in shock. As the evening turned into night and it was time for my mum to leave, I began to shake and could not make myself stop. Today I spent most of the day crying because I was so fearful of the pain returning. People say think positive, but it is not that easy. The pain might not be here now, but that doesn’t mean I can just switch off my memories of this pain and focus purely on that. If we were able to just do that there would be no need for mental health support, and people would never be affected in any way by their past experiences.

People might mean it with the best will in the world but they don’t understand, they don’t know. They have no clue about the past two weeks, they can’t comprehend that I might look and feel alright now but five minutes down the line I could very well be screaming in unimaginable pain.
So don’t tell me five minutes after meeting me for the first time that I’m better because I’m sitting here talking to you. Don’t tell me my nasogastric tube can’t have slipped because it’s taped securely, refuse to check it until I have to resort to tears to get you to listen me, then pat me on the back and congratulate me for noticing that something is wrong when you finally check my throat and find that you can’t see where it’s gone. Don’t tell me, “You don’t have mental problems” and admonish me for seeing a psychiatrist rather than getting to the root of the problem with a psychologist. Don’t insinuate that I am one of those people that just want surgery; I understand what surgery means, short term and long term, because I’ve had far worse surgery than this. You have seen me at my best but none of you have seen me at my worst. It’s not that I don’t want to be better, it’s that I don’t want to be told I’m better when I know that, without a doubt, I am not better.

I am counting down the days to my procedure, which I have been told will take place on either Wednesday or Thursday, and praying that it goes ahead. If it doesn’t I don’t know what I will do, because even if my symptoms improve I don’t believe they will stay away. For the past eight weeks I have been on off struggling with this partial bowel obstruction, so my condition improving markedly for a few days when I have not been eating is not proof to me that I am okay. I just hope my surgeons here understand that.

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Me looking super sad!

About the Author

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28 Comments

Allison Semikin

Oh my lovely Beth it has really been so hard. I have never witnessed such a dramatic pain event and I truly hope I never go again. People can’t understand without seeing firsthand how awful it truly well. As for certain health care professionals who should know better making clinical judgements based on a 5 minute snapshot of you, well I say challenge them as you are so proficient at and dont let them fob you off. I have your back and will always have your back, fighting your corner and keeping you safe from these so called experts. Just remember they are few and far between and we won’t let them determine what will happen.
You are amazing and I love you to the moon and back and all the way round and back again.

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Pat Harmon

Oh, Beth, I’m so, so very sorry you’ve had these complications, and especially that you’ve been having such horrific pain. I know pain too, but I can’t even imagine how terrible and terrifying it must be. No wonder you are panicked at the thought of having another attack. I’m sending prayers and hugs your way and hope there are no more of these dreadful episodes and that your surgery fixes things right up for you.
I didn’t know you were having such a bad time, so thank you for the update. It must have been so hard to write. Hang in there, Beth, and just breathe for now. ?????

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Rhi Rivens

sending you hugs Beth. You are strong and we are all thinking of you. I hope they make you more comfortable soon and you can get back on track. xxx

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Helen Spencer

Nothing I say will make any difference I know. Just to say that we are all thinking of you and ready to celebrate when you are back home and can get on with living again. Big love Beth x

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Mandie

Darling Beth, Mum has kept me updated on your situation and it has all been so shockingly horrible for u. We have shared a lot of ‘F’ words and tried to make sense of what this is all about. This blog is so raw with your pain and emotion , honest and powerful. Pray that surgery happens sooner than later and that this terrible pain will f… right off. Think of u everyday darling and will continue to think of u until u r safely home and back on the road to recovery. Scout will b waiting for u. The biggest hug on it’s way. Hang on in there. Xxxx

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Kourosh Pakroo

Oh babycakes this has been so horrendous and some people underestimate just how much you’re going through, but we’re all thinking of you and all have your back every step of the way! XO <3 <3 <3

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Bernie Redmond

Beth we are so sorry that you are going through such hell, think of your gorgeous puppy. We find our Lucy keeps us sane!! Our hearts and prayers go to you from Bantry Bay. Love Terry/Bernie/Lucy XXX

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Hannah

Oh Beth, all I can do is cry knowing that you are going through so much pain. Everyone is rooting for you and I’ll be here on the other side ready to run more fundraisers to raise Sarcoma awareness so that you can prevent others going through the same. Good luck with the surgery xxx

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Louise Dobell

Beth you are an inspiration to many and I wish you all the best for your upcoming surgery and the recovery beyond. I hope in time you will be more comfortable and that you will be supported with the after effects of the trauma this has had on your mind and body.
Your Mum and family are your rocks and those that know you personally and through your journey are rooting for you all the way in their thoughts and prayers.
No one will ever understand your full journey, as they haven’t experienced it, but empathy, compassion and trying to understand, will hopefully give you some comfort during the more difficult times.
Doctors and specialists can be very dismissive and I fear at times that they’ve lost sight of why they chose medicine as a career path. We shouldn’t have to fight to be heard but at times we’re given no choice. I only hope they learn from being proved wrong so they are less dismissive towards someone else.
I’ll be in UCLH Monday night into Tuesday but at the old heart hospital site. I hope by then that you’ll be recovering and moving forward with the correct help and support.
Take care Beth and thank you for posting your update as I cannot imagine how difficult it was.
All the best and hugs to you too,
Louise. Xx

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Anne Jeps

Dear Beth I’m praying for you I’m not religious but I do believe there is a source of light that we all come from and am sending this Light to you. I can imagine words are little comfort when facing what you’re going through, but know we’re thinking of you and sending an infinite supply of LOVE. Hoping that obstruction gets removed and your healing gets back on track xxx we hear you ❤️

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Judith Norton

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo Oh god I wish I could say something to help you through this. You are an amazing young woman Beth. Love and hugs judith and the rest of the Norton family x

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Jason Page

Hi Beth,

I don’t know you, but I’m an old friend of your dad’s and I’ve been following your blog for a long time. Far too long. I wish you could have written the happy ending and signed off a long time ago. Everyone reading your updates is longing for that day.

I have a daughter about your age and I cannot imagine what you and your parents are going through.

You have been amazingly brave (sorry, I know you hate brave) and so, so strong. Please try to keep it up a little longer and hopefully the surgery will get you over this latest hurdle. Easy for me to say, I know.

It made me so sad to read your latest update. We all know what you have been through up to now so we know that what you are suffering now must be truly horrible. I sincerely hope that your surgery goes ahead as planned and you start to feel some relief very soon.

I’ve wanted to write something before but, I’ve never really known what to say and I know that no words can help. Just know that for every person that does write something, there are probably ten or more that want to write and are thinking of you.

Okay, enough rambling from someone you’ve never even met. I wish you all the very best, and I’ll keep reading and waiting for better news.

Take care,

Jason Page.

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Andy

Bless you for sharing this terrible journey, I hope for your sake the surgery is carried out and alleviates this problem for you and to allow you to celebrate the end of the chemo. Have crossed as much as I possibly can for you.

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Jayne

Much love Beth xxxxx let’s hope the surgery goes well and you can smile again and celebrate the end of chemo. Wishing the pain will fly away and never come back. xxxxxxxxxxxx

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Tracey Brancato

I’m deeply sorry for what you’re going through I hope Doctors find a solution to your problem and also I will be praying for you and wish you the very best on your upcoming operation let’s hope they can calm that pain for you.???

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Naomi

Oh Beth, I cannot believe you are suffering yet another set back. Life is just so unfair but you have had your share and for most of us put together. Hang in there and I agree with Pat – just breathe for now – that is one thing you can control and I too, am sending healing thoughts your way. Much love and big hugs ???

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Anita

Love and hugs. I am sorry you have to go through all this. I am very glad that you do these blogs so maybe, just maybe, you can can get someone to under stand. Or help another who is fighting. You are a true hero? Keep fighting. I love your scrappy attitude

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Michele brown

There is nothing I can say I know, to help , just wishing you well ASAP . It’s so good that you are making people aware of all you are going through as you are right we can’t possibly understand . I don’t know if it’s something you
could deal with right now, or even if it’s the right time to start but I tried something called mindfulness which actually didn’t have the effect I was thinking it would for me but I have heard that it has helped lots of people for all sorts of reasons. You may find it helpful later on when you are feeling better xx

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Helen Hawken

Beth

It’s so relentless and awful to hear that just as you had hoped for light at the end of the tunnel there’s more surgery and pain. And an incredibly important message to get out there to everyone that the end of chemotherapy isn’t always a dancing in the park time of celebration, there are lots of uncertainties and longer consequences. I’m really really sorry to hear that things are so tough at the moment and hope that the operation helps to resolve the situation. Xx

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Sasha Johnson

It just is horrific. I so hope you had your surgery today. Just in case Bowel surgeon who once helped me might be worth checking out Professor Tim Rockall based out of Guildford. Good luck and so hope they can help you very soon.

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Brenda

Oh Beth. My heart aches for you. You are one of the bravest people I have ever met. I hope that the surgery is successful and eases your pain. Words are inadequate but I am sending every ounce of Love to you. Brenda xx

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Slavina

We’re all thinking of you Beth and are wishing you a successful surgery and speedy recovery. We love you and are sending you our thoughts and prayers!

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Laura Krick

Praying your surgery goes perfectly, you wake without pain, and get back on the road to healing and happiness tomorrow. Prayers, love and all the best of energy to you, your mom and all your care givers.

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Marilyn Fletcher

This week will be better for you and I hope you will be home soon to be spoiled by your family and friends and licked by Scout. What an amazing young woman you are with great courage and humour. Looking forward to more updates when you are feeling stronger. xx

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