Hello my lovelies. This is quite probably going to be a long post, so grab a cuppa or whatever you choose, take a seat and get comfortable. There is a lot of icky detail and perhaps not the usual happy, slightly bonkers post from me, but I’ll try to keep it as upbeat as I can. Fair warning though, some of this may be upsetting, for this I apologise and maybe if you are going through something similar this is a warm hug to say “it’s ok, we can do this”.
I haven’t been about for a while. A year, roughly. There’s a reason for this. Quite a big reason to be honest. So, apart from the just being too tired to do anything, and the juggling general life stuff, I had a bit of a kick up the backside situation happen.
If you remember I mentioned in the last post about me having a mystery health condition, and that I hoped that it would be sorted fairly quickly “We’ve had a house move and Covid (twice!) to deal with, I’ve also had a ‘mystery’ medical issue and just couldn’t get an answer from anyone but thankfully I’ve now managed to get some answers, not all, but some! More on that in another post maybe. Fingers crossed we are finally through most of it now.”, well, little did I know how wrong I was. There’s quite a long story behind all this so bear with me…
Best part of three years ago I began to think something wasn’t ‘right’. But, as we women do, I put on a brave face and carried on but I was so tired. It wasn’t the sort of ‘mum’ tired though, this was something more than that.
I was so tired I’d usually end up falling asleep as soon as I got in from work, the evening meal would be a last minute ‘grab what you can’ option and once that was done I was back to being shattered again and no sooner as I sat on the sofa after doing the kids’ bedtime I would be asleep again. This was not a normal thing for me, listening to the kids read was one of the nice parent activities at bedtime I thoroughly enjoyed (and still do!) they would get to have a bit of time with me to chat or get a story read to them, but I was just so tired I couldn’t enjoy it as much as I once did. Obviously bedtimes can get dragged out a bit, especially when they are avoiding going to sleep! Every parent knows these techniques! But we love our kids regardless of what they do, and really we shouldn’t see this as a waste of our time because it’s not, it can just be a little overwhelming at times, especially when we are tired.
My being permanently shattered was taking it’s toll on others things too. The house looked like a rubbish dump and there were dishes still in the sink after our evening meal most days. I just didn’t have the energy to do any of it, and yes hubby chipped in and the kids as they would normally do but the things that I usually did just weren’t getting done.
Why was I feeling like this?
This had building up for a long time, creeping up on me without me realising.
Ever since having our second child I’d suffered with extreme periods. And, I mean extreme.
So, after consultation it was advised I have a coil fitted to manage them and help me through the menopause. Having a coil fitted helped a huge amount and it was heaven to be period free for almost four years, but then BOOM, all of a sudden I began having periods again that I can only liken them to being similar to how it was when I had a miscarriage , but every single day that they lasted. Awful, and I can honestly say this as I know what it’s like to miscarry (far more common than it should be, and if this resonates with you, you have my full virtual bear hug wrapped around you right now). These periods were awful. Initially it was awkward, uncomfortable even, but they were just about manageable. Then, they started getting longer and heavier and I was going for a month with less than a week break in between. At one point I thought it may be the menopause kicking in, after all I was coming up to that age where it can start. I had some of the symptoms, but it didn’t quite seem right somehow. I kept thinking it might be more than that. Cue a call with the doctor as we were bang smack in the middle of a lockdown at the time.
The coil failed a year early according to the Doctor so I was popped on the mini pill to see if this would sort it out. It did for a short while and then it all started to happen again. Getting to the point where I ended up wearing maternity pads that were the size of nappies and having to change them every half an hour. Sometimes it got so bad I managed ten minutes between changes. I was having to sit on a towel on the sofa just in case of leakage!
As you can imagine going anywhere or doing anything was pretty much impossible without a lot of forethought and planning! And the emergency Amazon deliveries of ‘spares’ was becoming so frequent I knew the delivery driver by name. It was like having a baby again but an adult one, having to take a spare set of clothes, especially ‘bottoms’. Maternity pads (nappies) are extremely bulky so it was pretty hard to hide a pack when out and about. Going to work was tricky and I was finding myself feeling really tired only a short time into the day, I as beginning to feel breathless and my heart kept doing funny things. I felt bloated all the time and clothes were so much tighter and very uncomfortable. I was dreaming of wearing some of my lovely white lighter coloured spring to summer clothes but realistically that wasn’t going to happen. I was on constant rotation of loose elasticated dark coloured trousers, I simply couldn’t wear anything else ‘just in case’!
It all came to a head over a year later when I managed to get an appointment for a new coil to be fitted and finally a Doctor who actually listened! At last I was thinking, it will all be over and I can get back to normal. Err, no. Not that simple. I had a coil fitted but that was when the doctor discovered what he thought were fibroids, pretty large painful ones. It all began to make sense with the boating and pain and constantly needing to pee. I can remember having treatment for endometriosis after my first child was born so maybe the two things are connected somehow. The doctor managed to place a coil in but it was out two days later during a particularly heavy bleed. Call to the doctor again who arranged a scan, which confirmed what he thought. The day before the scan another coil was fitted. It stayed in for a week this time but came out again. I had got to the point where I felt so weak I couldn’t walk from the sofa to the kitchen without feeling I was going to collapse. I was given tablets to stop the bleeding but they only worked short term and it was back to square one. Unfortunately the Doctor I saw at the time was leaving for secondment in Australia, it would be a bit far and expensive for an appointment so it really was back to the beginning again.
Apart from the obvious physical issues I was beginning to feel mentally exhausted. Being fobbed off all the time by Doctors who clearly didn’t believe me when I explained just how heavy my periods were and the impact it was having on my family and me. I had to insist on bloods being taken to check my iron count and platelets with the last conversation with a doctor and he wasn’t keen on me having it done, but sometimes you have to find the energy to fight your corner. I knew the signs, this wasn’t my first rodeo!
I was looking colourless, my skin was grey, I had even been in the sun and still looked grey, there simply was no tan to be seen. I was constantly falling asleep clearly this was not normal for me. I was tearful at home and broke down in the nurses room when I went to have blood taken. Even the nurse said she thought I was anaemic just by the look of me even before she took blood. Turns out she and I were right, I also discovered I had an extremely low potassium count.
I was eventually referred to a consultant in the Gynaecology department at my local hospital to see what could be done. He was about as helpful as an ashtray on a motorcycle! He even had the audacity to raise his voice and tell me I was wasting his time and I needed to stop getting frustrated. He kept asking me the same questions over and over and he kept getting the same answers over and over but still he didn’t listen. He took a swab for lab testing booked me in for bloods and then round three of the same questions! Insisting I wouldn’t be a good candidate for a hysterectomy as I was overweight, ‘well sunshine there’s a bloody reason I’m overweight, have you seen the size of my bloated stomach at all!’. After going around on the merry go round for the umpteenth time I got really fed up and stood up and said “this wasn’t getting us anywhere, thank you very much” and went to get my blood done. Yes, I walked out. He’d ground me down so much when I was feeling vulnerable and at breaking point I just gave up. Yes, in hindsight I should have persevered, but I was so low I had no fight in me.
With the stories in the news about women’s benign services being dismissed (https://www.theguardian.com/society/2022/jun/02/dismissal-of-womens-health-problems-as-benign-leading-to-soaring-nhs-lists) I can honestly say I didn’t hold out much hope of anything even being looked at that summer. I knew they would prefer to keep me on tablets that didn’t work rather than look at non-invasive techniques to rid me of the fibroids. I guess it was all down to money and not my quality of life to the powers that be.
It had got to the stage where I was rushed to A&E under blue lights twice in the space of about six weeks due to the amount of blood being lost and the last incident where I collapsed at home and took quite a while to bring me back. It was fairly obvious that I was severely anaemic to the point where my heart was struggling and my brain wasn’t functioning as it should do. I had four units of blood to bring up my levels to somewhere close to where they should be in readiness for a full hysterectomy as this was the only way to stop what was happening to me. Yes, finally someone listened. It was a shame that it had to get to that stage but at least something was happening.
I was booked onto their emergency list for the operation which basically meant that I had to have it within six weeks of me being signed up for it. Unfortunately it was cancelled twice but I was hoping for third time lucky. Thankfully, it was third time lucky and in I went. I expected to be in for a couple of days as I’d been told it was only a short stay after the op. Only, it wasn’t a short stay. And nor was it an easy one either.
The operation was particularly difficult as I had such a huge mass for them to remove, think watermelon for a guide here, so a very large cut was needed for them to get everything out. Back to the ward, and things were still not right after a couple of days or so. Well, I ended up with an internal bleed and my stomach and bowels weren’t working which meant I was back under and opened up again. Drain tubes, two more units of blood, staples, a tube down my nose and aspirator bags on board they decided I needed to be under acute critical care. I was out of it most of the time and couldn’t really tell you what day of the week it was or who I was half the time I was not in a good way.
I ended up going into theatre again to have main line put into a vein in my neck as I started to swell up with all of the canulas they kept poking me with, I gave up counting at nine failed ones. This would be where they took blood everyday and where I had my countless medications given to me. It was also where I had a feed tube fitted as I needed specialist food into my blood because of my stomach packing up.
I ended up being in hospital for three weeks, and had another six weeks of recovery to do.
It was towards the end of my stay in hospital that the surgical team came in and cleared the ward of other patients and told me something I really wasn’t expecting. I had none of my family there to support me. And, yes it hit me like a freight train. The lab results were back.
Ok, fair enough.
“So it was fibroids then?”
“Er, yes and no”
“Right, what then?”
“You have Cancer, a rare one”
Woah, back the truck up a mo. It took a bit of time for it to actually register, then all the scenarios were rushing through my head, and questions were just being blurted out without me really taking any of the answers in. After they left, I had some time to think about things and try to get some sense into my head. I had told hubs the day before not to come in to see me as both he and the kids looked shattered so they should have a night together, but I called him with the ‘news’. I insisted he stay at home with the kids as he was going to rush in and visit, to be honest although I really needed him there I didn’t want to upset the kids with something like that at the time. It took me a few days to let my parents know – although I didn’t tell my Mum until I really knew more as I didn’t know how she would deal with it. She had been in hospital at the same time as me so it was hard on my Dad to deal with the news and keep it quiet.
Although it was a huge shock to the system, I accepted it. There’s nothing I could do about it. I had hopefully had all of the cancer removed via the surgery and would have to have scans and bloods to check to see if there was anything more sinister going on. I was placed under the care and watchful eye of a specialist team in Birmingham as they were the only ones in the country that dealt with this particular type of cancer. At this point we were very much in the dark as to whether it had spread or not.
I was booked in to have a scan and meet the oncologist in March 2023 and had bloods done then too. The outcome has been good. It doesn’t look to have spread. The scans are clear and I’m going to be monitored for the next few years on a six monthly basis.
If I’m honest it really has made me think about how short life is, and how valuable it is. I have begun to think about me more too. I’m not going to keep letting myself get ground down but the little stuff anymore. Life is just too bloody short! I’m putting me first on occasion and to be honest, we’re all better for it. It’s a shame it had to take something as horrible as cancer to make me think about life’s priorities. But there you go, that’s how it goes.
What can I offer in terms of advice to you if you’ve been through something similar?
FIGHT YOUR CORNER. I know how hard it is to do, you’re tired and feel like you’re in a horror film on a daily basis. You struggle in to work, doing the things you do every day because it’s expected of you. But you absolutely must speak up. It’s the only thing you can do to get yourself noticed. Read up about the various treatments. Go in informed with information and don’t let them fob you off with excuses or treatments that won’t work.
Take care, stay safe