Hit me baby one more time

I’m SO sick of crapping about all things medical, but hey, sometimes that’s all I have!

So, the shoulder pain did turn out to be something. By the last week it had moved into my neck only, and I was telling my oncologist last Wednesday that it was getting better, I felt like I was improving. However, I woke up Friday morning and I was in agony. I was so sick of the pain, I couldn’t move my neck, or even my eyes within my head without getting an agonising pain through my head. I took all my prescribed meds, plus some panadeine forte that Gaz had left over from a dental procedure. I just wanted to bomb myself out and sleep through it. I woke up when Gaz got home, and I said I couldn’t stand it, I was literally holding my head in hands and nearly screaming, I literally had to stifle it. And then, I worked out what it was. In hospital last week, they had looked for blood clots in my chest, which is perfectly reasonable, as at that time I had shoulder pain. I said to Gaz, they didn’t look at my neck, I’ve got a clot in my neck.

So, down the hospital we went, where I told them what I had lol. They got me into “fast track” pretty quickly (I was very suspicious that I was not going to be a fast track patient, but what can ya do?) To be honest my treatment in there was appalling, they barely gave me any pain relief and I was in 9/10 pain. I had to keep asking for it, and put up with being looked at like I was a junkie looking for a hit. They moved me to “short stay” when they finally decided to “humour me” (that was very much the impression that I got) and do an ultrasound of my neck. It had to be done in the morning, as they had no techs on overnight.

The night that followed was horrific. I was in breathtaking pain, and I kept on asking them why they weren’t doing anything to get me out of pain. I was offered panadol, nurofen, panadeine forte finally, like even panadeine forte was a big concession. After a lot of complaining, they finally agreed to 2.5mg of iv morphine every TWO HOURS. The guy the previous week was desperate to get me out of pain at least, and he was giving me 5mg every few minutes until we reached a controlled level. The level of morphine was absolutely useless, and finally in the middle of the night I rang the bell to get a nurse, and I was BAWLING. I hardly ever cry, especially not from pain, but I was actually crying in pain, and rage. I explained to them that after a year of being in the palliative care program, I had only recently conceded that it was stupid for me to be in pain, and to call them when I needed any type of pain control at all and they would deliver it, or tweak my daily medication. It took me so long to stop seeing it as a weakness, to stop seeing it as the beginning of the end. So, I said to them, here I was, in a HOSPITAL, and they were leaving me writhing in agony and begging for pain relief. The woman talked to me as though I were a child, which made matters worse, I was getting REALLY angry at this point. I mentioned that I might be better to go home and ring palliative care….they inject me with 20mg of morphine, and generally leave me with a butterfly in my stomach and another 20mg drawn up so I can give it to myself if needed. That just sounded a lot better than the 2.5mg on offer two hourly where I was. At that point, she put it up a bit, I think I could have 2.5mg every hour instead, but of course, it did nothing, and I continued on in agony for hours and hours and hours. Took this pic during middle of the night misery.

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Finally, way into the afternoon, I got collected for an ultrasound. As soon as the guy put the thing on my neck he said “oh, you have a very large blood clot here”. No shit. Could have told them that. Did, in fact.

They admitted me to the oncology ward, due to the proximity of the clot to my brain and it was on the pathway. Things improved massively up there, they really know how to deal with people in pain. Initially they took me to a four bed ward with three very elderly men being the other patients. I said I never make a fuss, but emotionally, I just couldn’t do it, not on top of what I had been through. They were brilliant, they popped me in the family room and within an hour, they had a private room for me. If anyone needed a private room and a lot of tea and sympathy at that point, it was me.

Once I had heaps of painkillers on board (endone, oxycontin, morphine injections for breakthrough pain), and I could mildly stand to be touched, I laid down and Indi asked if she could get in with me. We often cuddle up in mums bed and it’s special time for both of us, so I said yes, she could. Within a few minutes we were both like this:

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Gosh I can see the pain in my face. But also a peace, because I was with my girl.

They controlled the pain pretty well for the rest of the weekend, but nothing was really helping me to move my neck, I still couldn’t really bear to move it at all. Finally, on Monday, the oncologist came in and said that the pain was nerve pain, as the clot was pushing against one, hence the shooting pains in my head. He said he was going to add this Lyrica drug, and by the end of that day I was moving my neck. Miracle drug, for me.

As I was leaving the hospital on Tuesday with lots of pain relief and clexane injections for the next 6 months, I mentioned that Thursday was our annual trip to Mitta Mitta, and I suppose we couldn’t go now. He said I absolutely could, take the pain relief, take the injections, enjoy your holiday and we will work on the plan next week (as I missed chemo on Tuesday as there is no way to administer it, my port is blocked by the clot).

So, we are just about to pack the bus and leave, we will drive half of it tonight and the rest of the way tomorrow. This trip brings about many emotions. I remember last year, I was only a few weeks out from the planned date for the liver resection…this was before we knew my liver had any troubles growing. I posted a picture on Facebook, and said in the caption, something like “bye Mitta, see you next year”. And then I thought about where I might really be this November, only a month shy of the maximum length of time I was given to live. I could be cured by the liver resection, but if I wasn’t, I actually expected to be dead, or close to it.

So, it’s a funny position I am in this year. The liver resection never happened, and of course, I am palliative, but I am NOT dead. Besides pain from blood clot, which is easing daily, I am feeling very well, and certainly not in any sort of decline. There is no road map for this, no guide book for living longer than you expected. It feels like a triumph that I am still here, and I am going to enjoy every moment of this four days with my family. I have packed 3 books, four magazines, and the whole second season of Broadchurch. I think I am being a bit ambitious, but hey, it’s worth a try.

Hope you are all doing something relaxing this weekend. With much love and hope. Always, always hope :)

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They are worth fighting for, and I will. As much as I can, for as long as I can :)

15 Comments on “Hit me baby one more time

  1. I used to be a nurse and just reading this made me so angry. The role of a nurse is to be your advocate and you were seriously let down in a brutal and utterly inhumane way. I hope your care is never that bad again. Wishing you a peaceful and happy trip away. xxx

    • Yes it is an embarrassment to nurses. It made me feel ill to hear the lack of respect and lack of pain management you recieved 😠
      Enjoy Mitta….we are in Tallangatta and attend the Mitta Muster every year! The local pub has had a revamp and is amazing!

  2. Always hope Julia, enjoy your break, your strength is an inspiration

  3. Great they finally got it sorted. Not so great they missed it first time around. I had a similar experience with a blood clots this week in my picc line. The Dr was quick to get ultra sound scan and found the clots straight away. Came home with clexane injections as well. Stay strong and live in the moment.

  4. Julia

    It totally sucks when you know there is a problem you know exactly what it is and some ppl don’t want to listen. I am so glad that you eventually got the medication and support you needed. Try to enjoy this weekend and make some precious memories with your gals and guy.

    tons of hugs
    C xoxo

  5. My daughter has special needs. She was hospitalised more times during her first 3 years of life than I care to remember. After being nice and polite and assuming the nursing staff/medicos knew what they were doing during one of her earlier admissions, and it turns out my Mum’s instinct was correct and they were not treating her for what she needed, I asked her specialist what I should have done. He said yell, scream, create a fuss….and if they still don’t listen, call him and he’ll yell, scream and create a fuss. Hospital admission when he gave me that advice took over 13 hours to get her appropriately treated.

    Next hospital admission where I made a song/dance and big to do about appropriate treatment, I had the on-call specialist at her beside in 15 minutes.

    In all the admissions thereafter I went in polite for the first 5 minutes and if they didn’t listen straight away, I went to all guns blazing in the blink of an eye. But it worked and never again did she suffer overnight without appropriate treatment.

    Unfortunate that you have to be the squeaky wheel to get listened to. When will they learn?

    I hope you have a wonderful getaway with your precious family.

  6. Oh honey, if I was your nurse, and yes I am a nurse, there is no bloody way I would have let you deal with that much pain. That’s just bloody disgraceful !! When are they going to learn to LISTEN TO THE PATIENT ??? Shit !! Hugs XOXOX

  7. I am so very disappointed and yes even a little angry about the treatment you received (or did not as the case may be). It should not matter what time of the day or night it is, there is always something that should be able to be done at very least to ensure you are comfortable. Up until the oncology unit took over it seems very much as if no one understood the issue let alone wanted to assist you and it makes me sick to my stomach. I strongly believe that a letter of complaint needs to be written to the hospital in question (if you have not already) as if they do not know then they cannot be accountable.. I am hoping that your holiday is AWESOME and your mini pharmacy is fab at keeping you in a great place. sending huge hugs your way xoxoxoxo Sharon

  8. Hi Julia again l sit here with a tear in my eyes reading your blog , l think you have been so bloody brave and l just dont get it, you should be triaged and put in the oncology unit ASAP, l think you’re going through enough, you shouldn’t have to put up with crap. Managing pain before it gets out of control is a heck of a lot better than catch. I hope your holiday goes along without any hiccups, enjoy your family, books and mags girl. Kindest regards from one of your followers. PS. I still haven’t been able to get out and find your book, ( just off the moon boot) but l will get out very soon and cant wait to read it, Veronica Banen 💗 💛 💙 ❤ 💞

  9. It’s not about me but I’m gutted they left you in severe pain and restricted it – what right do they have to decide. I was a nurse and that is disgraceful treatment.
    They should be called in to explain. It’s not like you are junkie after a hit.I’m glad you got your private room after that experience.
    I hope you enjoy your break .

    • you go girl have a lovely break with your family you are always in my thoughts and prayers
      sharyn xoxo

  10. Once again I cried ready this,I am so angry,how could they have left you in that pain. I wish you peace,health and happiness ,you are one amazing lady

  11. Broadchurch season 2 is soooo good! I’m sure once you start you won’t stop! Have a fab weekend.

  12. Sadly, it seems far too common to leave people in pain- especially women. I just read an article about that, and wasn’t surprised. I’ve lived with nerve pain everyday for over 20 years- since I was 18 and even with such a diagnosis most doctors look at me as if I were trying to be a junkie! I assure you, I’m not but nerve pain is truly awful and how DARE I want pain relief to sleep. I’m so sorry to hear what you went through and hope you have a fabulous weekend.

  13. That was bloody disgraceful. It’s not like they can’t find out that you are a cancer patient. Those guys should be ashamed of themselves. That is not nursing.
    But I am thrilled for you that your oncologist was behind you and yours having a fantastic trip away to Mitta. I’ve never been there, but my kids went to Mittagundi and loved the area. It sounds like a real getaway place.
    And a toast for you for still being here. Keep making plans. But don’t tell God. 😉

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