All the health

Yesterday was a tough day. Such a tough day it’s getting a blog post all of its own.

Regular readers will know that I have been waiting, not very patiently, to see the consultant this Wednesday about the results of my recent foray into the wilds of the chemical menopause, and find out whether, after a decade of me badgering, I will finally be green lighted to have a hysterectomy.

Originally I was due to see her on August 23rd, but when after my last jab, the nurse at my GP surgery pointed out that if I kept the appointment I would be weeks into withdrawal from the chemical menopause drug by then, I managed to arrange the appointment for this Wednesday morning. I’d still be two weeks into withdrawal, but it was the best I could do. I couldn’t get them to prescribe me more of the drug as the consultant wanted to see if the effect was truly down to the drug by me coming off it before she saw me again.

As I mentioned in previous blog posts, the withdrawal so far hasn’t been as horrific as I had imagined. I’ve had a spectacular three day migraine, which wasn’t much fun, but other than that I’m just sweaty, mildly crampy and quite sleepless up to now. I was congratulating myself on Monday morning that if this was the worst it was going to get by Wednesday I’d consider I’d aced it, when I got a call from the hospital.

It seems my luck had run out. They were cancelling my appointment and the earliest next appointment they could give me was 30th August, a week later than my original appointment. It would mean I would be withdrawing from the drug all through the holiday which is something I’d rather hoped to avoid.

The woman on the phone asked me if it was alright that they’d done this. What could I say? The consultant had to cancel clinic because she needed to operate on another patient. This happens a lot. There are huge waiting lists across the NHS. Elective surgery always gets bumped in favour of emergency surgery, and once an elective patient has been cancelled, the hospital have a certain time frame in which to reschedule and perform the surgery or they get fined. Someone needed that surgery more than I needed the appointment, and I’m not an emergency, so I go to the back of the queue.

I get it, and it’s right and fair given the strains on the system.

On the other hand I was not alright with it. I was really, really upset.

The cancellation prompted a very serious conversation with Jason after he called a local private hospital and talked to them about my situation. It turns out that I can see the same consultant I was scheduled to see on the NHS, privately on August 7th. Also, if I see her and she says yes to surgery, I can have a hysterectomy within two weeks of the initial consult with her.

This was very overwhelming news because suddenly something so far away was potentially going to happen very soon, and also, the cost. The cost was not small. It’s our family holiday/big anniversary treat rolled into one type of cost, and Jason was happy to use the money for that, but I had to consider what it meant for all of us.

In the end these are the things which made me decide to go private and weep all over my lovely husband, who announced that we’ll just have a better holiday/bigger anniversary treat next year so not to worry about it.

Because he’s a fucking bearded saint and I LOVE him.

Firstly there is no guarantee, given the current state of the NHS that my appointment will not be cancelled again on 30th August, because this, unlike indefinitely cancelling surgeries, is doable.

Even if I get the appointment on the 30th August, and I then get a green light for surgery, I will go on another waiting list. Average wait times for surgical appointments is 3 months for most things, more for others. Let’s be generous and say 3 months is likely for me. It means we are looking at November for a possible surgery date.

I would be going in as an elective surgery patient. There is a very good chance that I will be bumped off the elective list in favour of an emergency. This happens all the time. It’s why I’m not seeing the consultant on Wednesday. Hell, when I had Tilly I was actually whipped off the operating table as the anaesthetist was about to give me a spinal block to make way for an emergency. With my realistic head on, I could be looking at getting surgery as late as February next year, maybe later.

The longer I wait for a consult, the further into withdrawal I go, and the more my hideous menstrual cycle rears its head again, along with the miserable mental see sawing that I had thought was normal until not having hormones showed me that it isn’t.

Also, presuming the consultant puts me back into chemical menopause while I wait for surgery, I have to suffer the first month of readjustment to the drug again. I also have to throw into the mix the fact that my body seems not to be reacting as favourably to the drug now, so I can expect daily joint pain. The joint pain is not quite as hideous as the migraines, but at its worst I cry turning the tap on, or putting my bra on, and just like the effects of my menstrual cycle, it stops me living the life I want. Also, I’d probably be put on the three month dose rather than the monthly dose, because it’s cheaper and less of a drain on time to administer. Apparently the side effects of the three month dose are worse. I could be looking at being on it for 3-6 months.

Whatever I choose, the summer holidays are fairly ruined, so it’s a question of whether I want to ruin Christmas too.

I thought about whether I was being selfish to want the surgery sooner rather than later. I can wait. I could wait. I’ve waited for ten years of asking for a hysterectomy to get this far, and things weren’t exactly rosy before the begging began. I’m not going to die because of my condition. I’m a stoic woman.

What’s really hard is that during the two months that the drug was working well, I felt fantastic. I wasn’t tired all the time. I wasn’t borderline anaemic. I didn’t have migraines that turned me blind and flipped my digestive tract inside out for days. I didn’t have to leave the kitchen because the smell of food was unbearable. I didn’t spend my days monitoring the swoops and dips of my erratic mental state and adjusting accordingly. During that time I lived. I lived like I imagine most normal people live, and it was amazing and yes, miraculous. Just thinking about what it was like makes me want to weep.

Once you’ve experienced that. Once you know that you can have it, and that what you had before was not ‘normal’, and could be fixed, it’s so very hard to go back there, even for a while.

I asked Jason if he thought I was making up how much the drug had positively affected me during that time. I am, you may marvel to know, prone to exaggeration.  He said. ‘Being with you was like when we used to go on holiday for four weeks, but better. You were relaxed. You were well. You are not exaggerating.’  Then I cried some more.

I still felt selfish at spending all that money on myself, but the truth is that when I am where I was before I started taking the drug I am only living for, at best, two weeks out of every month, and often during those weeks I am tired and recovering from what the rest of the month has done to me.

The truth is that now that the jab is not working as well, I am back to only living well for two weeks out of every month.

In my pre surgery future I know that half my life will be taken up with coping rather than living. And I can do that. I can cope, and I am lucky that I can, and I totally get that there are people out there living with much, much worse conditions and almost certainly doing it much more bravely than me, but the fact that I don’t want to shouldn’t feel selfish. It should feel like self care.

It’s not just that I cannot participate in my own life half the time, I cannot participate in my family life half the time and that isn’t fair to any of us. During my last migraine Oscar was the only one home from school with me for an hour before the girls got back. I was so ill he wanted to call an ambulance. Afterwards he told me he was afraid I was going to die, and that he was sorry he hadn’t been able to help me and for being scared.  I don’t want him to be afraid and I don’t want him to be sorry and when I’m in the middle of an attack like that I don’t have the words to console him or make him feel better, and that adds to the burden of guilt that for all these years, my family have had to look after me as much as I look after them.

And as I type all this, the decision to go ahead with the private health care option seems so glaringly right and obvious, and I wonder why I still feel conflicted about it, even after saying yes, but I do. So I’m feeling all the feels right now. I’m feeling guilty, and terrified and excited and panic stricken, but mostly I’m feeling that I’m the luckiest woman in the world that my husband and children are the best husband and children in the world and I’m going to use that as my touchstone as I get through the next few weeks because it’s probably going to be the only thing keeping me sane.


24 responses to “All the health

  1. Katyboo, go privately, you are worth it.
    And you are no good to your family when feeling ill and miserable. Its like the safety talk on the plane, look after yourself first, put your own mask on first and then you can help others with theirs. xxx

  2. Holding you gently in our thoughts, dear Katy. When I say ‘our’ I’m not going all royal on you, I mean my family. xx

  3. Sweet Katy, beware private. I see all your points and they all make sense but beware private. I was told I could have a tumour on my primary bilary duct, two weeks left to live kind of thing. Exhausted and frightened we got a recommendation to a private doctor, no insurance of course, who took blood tests, gave prescriptions, did procedures and had me in hospital overnight. Each blood test cost a minimum of £200 some up to £350, the medicines cost over £100 each script, the procedures, MRI, CAT scan, ERPC with an overnight started at £1,000. The hospital bed, the nurses, probably even the cleaners had to be paid by us. He got £100 for being on call overnight in case I got an infection and he might have had to come in, can’t even begin to think what it would have costed to have him come in. All up it came to over £20,000 with follow up appointments. None of this was quoted to us. So while I see your points I raise my point. Beware going private.
    This is why the selling off of our NHS by undercutting investment until it just doesn’t work “and has to be put in the hands of private companies” scares the sweet bejesus out of me.
    On one hand you are right, it will be done right away and your problems will be addressed, on the other hand the quote is the beginning I fear. Get some reassurances, get something in writing, don’t leave it open ended.
    On your side you sound like an emergency to me and not an elective. You bearly live your life, If that is not an emergency what would be. Woman you could die of all this pain you go through. Just what are your doctors thinking.

  4. You are absolutely doing the right thing Katy, and I’m not just saying that because it is exactly what I did myself, although it is a contributing factor! My parents paid for my hysterectomy for the same reasons that Jason is happy to do so – because you are only living half a life (at best) and that is as distressing to the people who love you as it it is for you.
    My consultant was unequivocal that this was the only long term solution to my condition but still warned me that I could wait anything from six months to a year for surgery on the NHS, for many of the reasons you have stated. I consoled myself with the fact that by having it done privately I freed up at least one place on that waiting list, hopefully for someone who simply didn’t have any other option.
    Having undergone a fair bit of surgery over the years, part of me found it hard to reconcile actually volunteering (let alone paying) for a major operation but you instinctively know when you are facing the last chance saloon and must do whatever it takes to get your life back. The good news is IT WORKS, it revolutionised my life and that is no exaggeration. I am sure it will do the same for you, but you already know that. My only caveat is you must rest and recuperate properly afterwards, I didn’t for various reasons (like selling the house sooner than anticipated and relocating to another part of the country!) and regretted it later, apart from that (self inflicted) hiccup it has been an unqualified success. I still have days twenty years later when I think ‘thank God…’

  5. This was a difficult read, because it’s so clear how tough this decision was and is for you. However, I’m sure it’s the right one. And look at it this way. You’ve removed yourself from the NHS waiting list. Somebody’s moved into your place. Somebody who’ll be very happy to have moved up that queue just a little bit. And somebody else who’s moved up behind them …..

  6. Katy, I was so sad reading this, and then so excited to hear the alternative possibility and wondering if I could send you more than a fiver, and finally delighted to hear the wonderful Jason has done his homework and YOU CAN DO THIS!
    And then a bit in awe of your careful reasoning and justification. You can stop that now. You need this. You can have this. So, do it.
    Nothing about this situation is good apart from you being able to change it. Please do. We all need you at your amazing, thoughtful, considerate, aware best. So please, do this.
    Much love xx

  7. It really, really should not be necessary for you to do this, but I think you’re making the right decision. I hope it all goes well for you.

    • Thank you. And I agree, it shouldn’t be necessary, apart from all the personal reasons for doing/not doing it, I haven’t even touched on the fact that I spend large amounts of time campaigning to save the NHS and this feels like a bit of a betrayal, but the more I write and think and read and talk with everyone the more I think I am indeed making the right decision. xx

  8. No, no, don’t feel like that. It’s not a betrayal at all. The betrayal is in the way the NHS has been run down – which you are staunchly campaigning AGAINST – which makes it necessary for you to turn to an alternative. It’s terribly sad for anyone unable to find the money, but it is not your fault that you *can*. All sorts of decisions, life events, and other things have made that possible and frankly, you have suffered enough.

  9. Super excited for you. Best of luck. With lots of love from a usually silent fan/friend/follower in Switzerland.

  10. Y – you are important
    o – one and only
    u – u need to be well


  11. The blog shows how deeply you have thought this through and I think it’s absolutely the right way to go. Cheering for Jason 😀 Having you well and happy is worth everything for your family and the world. A holiday is soon over and the disappears into the mists of time, whereas your health and wellbeing affect your every moment.
    I had awful migraines, the chuckitupallday kind, which crescendoed in menopause and then, thankfully, amazingly, gradually, faded away. I felt reborn. May you too be reborn with this op. Xxx

  12. I hope it all goes well. xx

  13. I’m so pleased for you, Katy 🙂
    If our NHS hadn’t been deliberately starved of funds, I’m sure you would have been sorted out by now, but it happened, and so you’ve made the best decision you can, both for you, and your whole family 🙂
    As someone who went through the same kinds of things, you have my total sympathy, and I look forward to hearing that things are better for you 🙂

  14. Catching up on my reading – be kind to yourself Katy. I had a self-elected hysterectomy at 35. Most difficult decision I’ve ever made but truly truly life changing. And I went private… I am 18 years the other side and living full months again xx

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