Sunday, 29 November 2015

Health Update

Hello dear reader, I hope you are well.

So, I had my hysterectomy four days ago, and I thought  I would update on my recent health issues.

The hysterectomy went really well. The op was straightforward, there was a lot of endometriosis, but it was old (shrunk by the Prostap) and had not ventured from my womb.  Hoorah! My bladder, which has been the cause of much mischief, was free of endo, which is excellent news. That means that it hasn't spread much at all; hopefully it has gone and will not self-perpetuate (endometriosis is womb lining tissue which escapes and buries itself into other muscles and organs and swells and bleeds each month, and can be found as far away from the womb as the lungs or back of the eye. It can self-replicate once it has escaped from the womb. This means a hysterectomy is not always an effective treatment. However, in my case, I seem to have escaped lightly.)

I was given a trial without catheter on the ward (TWOC) the day after my surgery. Last time I had one of these, about 8 weeks ago, I could  not ring out a single drop. I squeezed, pushed, shook, danced, stood up, walked around - nothing. This time, the good news was that I could pee each and every time I needed to. HOORAH! 

However, it became evident that I did not have the normal sensation that I needed to pee - I just felt crampy pain and a vague anxious / panicky feeling. I had my bladder scanned after voiding and it was discovered there was still 300ml retained in my bladder - so I evidently wasn't able to accurately feel if I had emptied properly either.

This could not go unchecked. Retaining urine puts pressure on the kidneys. Only one of my kidneys works, and the other functions at 70% (probably caused by chronic retention) so I need to be very careful with that remaining function. I do NOT want to end up on dialysis because that is a one way ticket to transplant - if you are lucky. I need to ensure that my bladder is properly drained at all times.

On this note, it was interesting to see I pass about twice as much pee as all the other ward inhabitants. This is not necessarily a good sign (it can mean that your kidneys are on their way out) but it might only mean that I am drinking more than other people. Hard to call. Interesting comparison you don't get elsewhere though.

I agreed to trial Clean Intermittent Self Catheterisation - which is a fancy way of saying you do a wee, then put a medically packaged McDonald's straw up your urethra four times a day. I tried, and was successful at first. However, it was really painful - unsurprisingly, as I'd had surgery the day before. Eventually the panicky feeling increased and the amount I passed decreased and I was left as dry as the Sahara. So that was a bit of a fail.

I was finally discharged with what I went in with: an indwelling urethral Foley catheter. It's not that bad though, it's an inconvenience more than anything. People live with much worse. I am quite used to it now and, handing control of my catheter over to the nurses after my surgery, I realised quite how skilful I had become in knowing without looking when it needs changing, how to position it for maximum comfort, etc. 

I don't know what the future holds. I will have an appointment with the Urologist at Castle Hill again in a few weeks once I have recovered physically from surgery. I am guessing they will want to do another TWOC and possibly another Urodynamics test (possibly the least dignified thing I have ever endured: tubes are placed in your bladder and up your bum. You are then sat on a toilet seat with a jug underneath whilst a nurse makes small talk, and simultaneously fills your bladder and bum with cold water until bursting point. If I live to be 100 I would be happy not to have to endure that again...)

There has been talk of an MRI. From the reading I have done, it could still be "one of those things" right down to MS (nerve damage). I have no malignancy, and now I have no endometriosis or prolapses, so those are 3 big causes ruled out.

I'll be honest: it frightens me. I want to get my life back and I want to get back to running. It's hard to see how that is possible with a catheter. Also, the idea of MS is just terrifying. I have to believe that if that were the case I would make the very best of the hand that is dealt to me, but I pray that it's something straightforward. I believe it's uncommon for women to go into total urinary retention, especially younger women. The prime causes are childbirth damage (not applicable to me) or a condition called Fowlers, where one of the urinary sphincters doesn't open properly. I don't believe I have this issue either, as my entire bladder is atonic, and my sphincters seemed fine (and that, my friend, is a phrase I thought I would never write... )

However, let's look at the positives. 8 weeks ago my bladder could do nothing. Now it can pee. Whistling - genuinely - helps. I picked up this tip from a fellow patient on the ward; apparently her Mum was taught to blow down a straw and this helped her train her bladder.

If you imagine a balloon that has been blown up and then deflated, it goes all wrinkly and can't hold it's prior shape. It's very possible that when I had the episode of acute retention in September this is what happened. They drained 2.5 litres from my bladder in one go - that's a big and a small bottle of Coke. It's possible that my bladder just got over stretched and the catheter is just giving it a little holiday whilst the muscle recovers it's tone. That is the explanation that I am thinking is most likely, right now.

Right - now I have filled you in on the medical gossip, I will sign off and eat my dinner. I am feeling loads better than expected after the surgery. I am a bit achy and sore, but that is to be expected, and a bit cabin feverish and grumpy because I am a terrible patient. I have just taken advantage of Craftsy's Black Friday offer and signed up for 7 online craft courses; that should while away the hours of my sick leave and allow me to do something useful with my brain. I had *one* day of daytime television today and it brought on the Grumpy Old Claire show. I promised myself I would do something more productive with my time.

Claire x 

Wednesday, 4 November 2015

Big News

Now, depending whether you have read this blog forwards or backwards, you will have an entirely different take on whether this news is positive or negative, lol. Firstly, no, I am not pregnant. Secondly, no, it's not bad news either.  Hoorah.

There are, in fact, 2 pieces of big news. The first big news relates to Mrs Bee's Emporium.

Here is a potted history for anyone who has popped over from my Facebook page ( if you want to pop the other way!)

Dom and I were both made redundant from our jobs as teachers about a year ago. It's been a bit of a stressful year with that and a few other things (my Dad being diagnosed with Dementia, my Mum having a knee replacement and needing me to be their carer - etc etc.) To be honest, both Dom and I struggled with our place in the world after, we both struggled a bit with anxiety and depression too, as the school takeover thing had literally happened overnight. We're loads better now, but spent quite a while wondering what we'd do next (and, if I'm entirely honest, with a bit of "why us?" thrown in too.)

A few years ago I had made a little extra on the side knitting and sewing, so I decided to go back to that as its something I genuinely love. I trained to make bridal and prom dresses and I was genuinely blessed by an amazing reaction, and for that I will be eternally grateful. It really was a bit of sunshine in our lives.

In order to get Dom out of the doldrums, I started asking him to help me out with jobs (other than the childcare!) and he started to get his old confidence back. We eventually decided that he would come into the business too and we'd start a new range that he would manage -- still lovely, stylish, bespoke gift wear, but things that we could make using a professional embroidery machine. I would still continue to handmake the luxury, bespoke range. This seemed like a plan so he went on some business courses, and then put the work into setting up a Limited Company and sourcing all the materials we'd need. We decided we couldn't sit around and wait for life to happen to us, so we'd invest most of the rest of our savings into setting up this new venture.

I had a manageable customer list too, and was able to close my list for Christmas early, with your order included. Everything looked like it might be getting better.

Then I got sick.
The First Piece of Big News:

We have launched the second arm of the business! Whilst I am recovering and pottering around the studio, Dom has been working his socks off setting us up as a Limited Company. Last Friday our ***awesome*** embroidery machine arrived and we have been playing ever since. Here is a taste of what is to come:

We will be producing a line of gorgeously machine embroidered, personalised t shirts, bags, aprons, tea towels and soft toys. We will sell them online and at local craft markets around the Hull and East Yorkshire area.

I am so, so proud of Dom. He really has shown huge strength of character over the past few weeks whilst supporting me through my ill health, running the home, dealing with the children and still putting together this new venture.

It's a bit scary, I will admit. We decided that we could not wait around for life to happen to us, so we invested pretty much all the money we had left in the world and decided we'd give it all we'd got. I don't know if it will work, but I do know that Dom and I work together well, and our skills compliment each other, so it was worth a punt. We don't want to run a multi million pound enterprise, we want to run a business that gives us a decent work/life balance, that enables us to give our children the time they deserve and that gives us the luxury of being able to use our creativity each day. As long as we can pay the bills, I would be very, very happy with that. Fingers crossed.

Last night I went to bed having (yet another) moment of hyperventilation. I came across a quote that seemed apt, and I want to share it here:

"Twenty years from now you will be more disappointed 
by the things you didn't do than the things you did do. 
So throw off the bowlines. 
Sail away from the safe harbour. 
Catch the trade winds in your sails. 
Mark Twain

Dom is currently preparing all our stock, ready to be photographed at the end of the week. I will share the lines with you as we get ourselves more into gear. We will be selling through our Facebook Page, Etsy, Folksy and Dom will be attending some local Christmas Fayres. Please get in touch if you'd like an original Christmas present for someone special.

The Second Piece of Big News

I am having my hysterectomy on the 25th November! That is only a couple of weeks away! Eep!

So, in some ways, it probably has come at a pretty bad time. That said, I have felt so unwell for the majority of 2015, and I will be so glad to recover. I know that recovering from major abdominal surgery (in which I am losing 6, possibly 7 organs) is going to be a pretty big deal. But it does mean I can stop the chemo, which means I can lose the side effects, which means I can lose the medication that controls the side effects - and so on. I am praying that the endo hasn't spread too widely (once it has left the uterus and spread into the abdominal cavity it can self perpetuate, even without a uterus. So the more contained it is, the less likely I will need continuing surgery.)

I did not get a diagnosis last week after my cystoscopy. My bladder was extremely angry looking - it looked like it had measles and many, many of the lesions were red raw and bleeding. That would explain why I was peeing blood! But, again, at least it is not cancer. Hooray.

The Consultant wanted me to keep the catheter until I have recovered from the surgery, so the party bag and I will have at least another 3 months together. I do not know if my bladder will wake up once there is more room in my pelvis -- I very much hope so. I think my right kidney is permanently damaged now, sadly. It's very much a "wait and see" diagnosis.

That said, I have been feeling very much more positive about it since I knew it wasn't anything too awful (I was very much afraid of the "big C.") Kidney failure is nothing to be sniffed at, but I am on the other side of it now, and very soon I will be waving goodbye to at least some of the medical regime that has dominated my life for the past few months. It's OK, really. 

And that was my second piece of big news. I am feeling very positive, on the whole. I am very sad that I have had to take a big break from my work, having worked so hard to get momentum going. However, there is nothing I can do, so I am trying to go with the flow and not stress. I am so proud of my husband, though. He really has been the kindest, gentlest, most loving man and I could not have got through the last few weeks without him. I hope, with all my heart, that his new venture is a massive success.

Much love,

Claire x