Eli’s Coming!

Apologies yet again for lacking in updates, I could blame a busy schedule, high demand for my knitting skills, extreme nonchalance, or maybe it’s just that our Tablet is broken so husband has been hogging the laptop.

In all honesty though there hasn’t really been much to report, physically I’m still struggling up that metaphorical hill. I’d like to say that every day gets easier, but some days get easier, and some days I’m exhausted before lunch time and can’t explain why. I hit my 12 week post op mark next Wednesday, so I think perhaps going to the gym again might be the best idea . . . I’m just terrified I’m going to knacker myself out before the day has even started!

Then we move smoothly on to my mental/emotional state which, to be quite frank, is quite a bit worse than my physical state. I’ve recently found myself to be quite prone to tearful outbursts, even a rather unproductive attempt to book a doctors appointment recently left me wailing like a banshee. I’m not even going to attempt to justify it all by delving deep into the psychology of the emotional ramifications of the events of this year. Justify to say that it’s a bit bloody annoying and has led to people around me thinking that there’s more wrong with me than there actually is! Did that make sense? Hmm, how to explain that. Basically, yes I’ve had a hell of a crap year, and yes it all does rather upset me, but I’m dealing with it and moving on in my own little way. Unfortunately when I end up bawling like a two year old each time somebody asks me “Are you OK?” (complete with sympathetic head tilt) it looks like my body is making a liar out of me and nobody believes me when I tell them I’m fine. I’ve never really liked my body anyway, and if it continues with this sort or outrageous behaviour me and it are going to be having severe words!

So yes that’s my life at the moment, busying myself with various knitting projects as I physically and mentally struggle up a metaphor the size of Mount Everest. However, I can feel a change in the wind. I used to watch a TV show which I think was called ‘Sports Night’, and one of the characters in it misunderstood the lyrics of the Three Dog Night song ‘Elis Coming’ he thought it meant that something big was on the horizon and you could feel it in the air. So throughout the episode when something a little dramatic happened you just heard a little of the intro lyrics “Eli’s coming. . . “ well that’s what I feel at the moment, every now and again something in my head whispers the lyrics “Eli’s coming . . “ (that probably makes more sense if you’ve heard the song)

 

I do actually have a lot to look forward to at the moment, whilst we are effectively having to cancel Halloween (my favourite holiday, but unfortunately the endless stream of little kids it cute costumes would just be too much for me) we’re popping down to Wiltshire to see our brand new nephew the week after. We’re being kept updated with a continuous stream of cute pictures at the moment, so really can’t wait to see him. Then we have a trip down to London for some Christmas shopping and to visit the Winter Wonderland in Hyde Park (Christmas wouldn’t be the same without it), there’s also a potential visitation with my Dad and Step-mum in the works, just got to figure out who’s working what and when, and also who’s visiting who. I’m also thinking about selling my crafts, making myself a little business. I really love making all the little things that I do, and if I can earn a little money from it even better! Then of course there’s Christmas and all the potential that a New Year has to bring.

 Eli’s Coming!

Happy New Year!

I’m Back!

Yes, for those who haven’t noticed, I’ve been away. Well not exactly away but convalescing and as a result rather disinclined to blog. It’s also been quite an intense couple of months with a lot going on, but maybe I should just stick to my operation news for now.

As I mentioned in a previous post my operation date was August 1st, it was a pretty nerve wrecking day made so much easier by the fact that the day before I had become an auntie!!  My older brother and his wife had a gorgeous little boy called Benjamin Nevis William Johnston (Benjamin Nevis because my brother proposed to his wife on top of Ben Nevis)

My little nephew Benjamin and his toy ‘daddy’ that I knitted him

and even though I’m an auntie already to my husband’s three nieces this was the first niece/nephew on my side of the family so I went into hospital with a very happy ‘proud new auntie’ glow about me. This was a good thing as the next week would prove to be absolute hell for me.

To start with I arrived at the hospital at my appointed time of 7:30am after 12 hours of being ‘nil by mouth’. It was a busy day on the ward so I had to wait quite a while before I got a bed and even longer to be taken up to surgery. It was 4:30pm by the time I was finally wheeled up to surgery and after 21 hours with no food and only the occasional sips of water I wasn’t in the best of moods. Then I was subjected to the worst pain imaginable, and without wishing to scaremonger, I wouldn’t wish what happened to me next on my worst enemy.

Because my surgery was going to be quite intensive and in the abdominal area not only was I going to have a general anaesthetic but also a spinal anaesthetic which would doubly anaesthetise my lower regions and it also would take a little longer to leave my system making it unnecessary for me to have a lot of pain relief after the surgery, which sounded nice. The reality was a lot more unpleasant, due to the size of my stomach I was unable to sit in the proper position for the spinal injection to be administered so I had to have it whilst laying on my side which made it tricky for the anaesthetist to get the right spot. After about three attempts and the most unpleasant pain I have ever experienced, which I was rather vocal about, they had to up the dosage of my general anaesthetic to knock me out to do the spinal.

My surgery took a few hours, during which they removed the cyst (which measured 32cmx30cm and weighed 2 stone!) my ovary and my appendix, and left me with a scar roughly 12 inches long.

My scar with staples, there were lots of them!

Staples out. . . and healing quite nicely

The next day, I was amazed at how much better I felt. Gone were the constant stabbing pains in my shoulder and my side, I could also now breathe properly and stand up for longer than five minutes without being in agony. It just showed how bad things had got, that I’d literally just had quite intensive surgery and had a very large incision in my abdomen and I felt much better than I had for months.

The ‘before’ picture was actually a few weeks before, I had got even bigger by the time I went into hospital.

My hospital stay ended up being a little longer than expected due to some complications caused, we think, by the excessive amount of spinal anaesthetic I ended up with. But the details of that are a little bit icky and unpleasant so I won’t subject you all to that.

Today I’m exactly seven weeks out of surgery and even though the first few weeks were really tough (and quite often had me in tears) things are gradually getting easier. My first attempt at stairs was slow but rewarding. My first walk into town, with a stick, was exhausting.  Since then, however, I’ve had a holiday on the Isle of Wight, a birthday, and gone back to work, so things are slowly but surely getting back to normal.

Whilst we were on the Isle of Wight the husband and I celebrated our first wedding anniversary. We both agreed it’s been a hell of a year, (with somebody wording it quite succinctly that it’s quite harsh to lose your mum and find out you can’t have children all in the same year) which has only served to make us stronger and closer than ever, and we now intend to make the most of the coming year.

So here’s to new beginnings!

My birthday outing to Carisbrooke Castle. I got to play ‘dress up’ with my little niece.

 

Slow and steady wins the race?

It feels like I’ve been waiting forever to get my ‘bump’ sorted. Ok, it’s been about 8 weeks which I suppose is a long time, it’s just it feels even longer than that.

We are slowly making progress though, I had a CT scan last Monday which was a truly unpleasant experience. I’m sure you’ve all had those moments of thinking about something else whilst someone is talking to you and therefore not actually hearing what the other person is saying to you, well my whole experience was like that. From the nurse telling me where to get changed to the technician telling me what was going to happen during the scan I didn’t take a single bit of it in. I suppose when you’re having a scan to find out if you have ‘tumours’ in any other part of your body your mind wants to have a day off and find something more pleasant to do.

As I said I really didn’t take in much of what the technician was saying to me just before the scan, So whilst he was sticking an IV needle in me and talking about the dye they’d be putting in I just caught something about “flushing” “warming sensation” and “feeling like you’ve wet yourself” and I panicked a bit as I thought he meant that would happen when the dye was leaving my system. However, about 10 seconds later as I’m lying in there and  the dye enters my system and I feel a warming sensation going from my head to my toes and yup you guessed it, feeling like I’ve wet myself,  I then realised the technician had been talking about the stuff during the scan, so I was a little relieved. This was short lived however as the most horrific feeling of nausea came over me, and for the next few minutes I was constantly swallowing and concentrating on my breathing  just to stop myself throwing up.

Afterwards they sat me in a little side room for about 10-15 minutes, I suppose to make sure that I didn’t have any adverse reactions, then a nurse came through to take my IV needle out.

One weird little side effect I did have though was I developed a constant cough, unfortunately seeing as it was the same type of cough that I get when I wear anything restricting (I had to give up wearing bras a few weeks ago) I yet again panicked and thought my cyst had started pushing on my lungs more. It was only a few days later as the cough had started to subside I googled CT scans (something which I’m quite glad I didn’t do before I had my scan) and found out that it’s possible to have a mild allergic reaction to the dye they use resulting in coughs, sneezes, and hives.

. . . .

Since starting this post things have progressed quite a bit. I had an appointment with a consultant on Friday to discuss the scan results, and oh boy was that fun. My appointment was at 10:40 so we arrived just after 10:15, in good time for the appointment, and the waiting room was packed! After we’d been there about 20 minutes a notice went up in reception saying that the approximate waiting time was an hour, no big deal. However, an hour and a half after we arrived and the waiting room had thinned out a bit my husband enquired as to how much longer we’d be waiting and was told not much longer as my notes were in the holder outside the consultants room and would be picked up by somebody soon. Well at 12:40, a whole 2 hours after my appointment time, we were practically the only people left in the waiting room and I finally got called in by the consultant. It turned out that all the other consultants had been passing over my notes and leaving them to the consultant that would also be doing my surgery, unfortunately nobody had actually told him this and he’d had about 4 or 5 other patients there to see him specifically. Well as he talked about my results and what would be happening I realised why the other consultants had left it to him. Basically they still don’t know whether the cyst is malignant or benign, so the plan is to go in (using an incision that will go from my pelvis up to about 4 or 5 inches above my naval as the cyst is THAT big!)  remove the cyst, my ovary and fallopian tube, and my appendix. However if the cyst is malignant, they might have to do other stuff whilst they’re in there and I may have to undergo chemotherapy afterwards, but that’s if IF it’s malignant, which I have a strong feeling that it’s not. That’s the plan!

Unfortunately my actual operation isn’t until 1st August so I have a couple of weeks to wait, which isn’t as bad as it seems when you consider that they were initially going to book my operation sometime in late August/September but because of the amount of pain I’m in they’ve fitted me in as soon as possible, yes apparently two and a half weeks is ASAP in NHS terms.  Which is quite easy to believe when you consider that we actually spent another 4 hours up the hospital that day getting my pre-op checks done.

So after an emotional and tense 6 hours up the hospital (without food and water I may add, well Chris my husband did get me a cup of tea from Costa whilst we were waiting for my chest x-ray, but unfortunately whilst he was gone I got called through to the other waiting area and so missed my tea!) I have an operation date, and an estimation of recovery time, and so essentially a plan of when I should be getting my life back on track. Ironically enough, my last week of recovery is also the week I’d booked a holiday off work as it’s our first year wedding anniversary. Hopefully I’ll be fit enough to take our intended holiday to the Isle of Wight, and maybe this anniversary could mark a change in fortunes for us, because in all honesty, between me losing my mum and finding out I’m never going to be able to have a baby of my own . . . this year’s been a bit crap for us! (and that’s coming from a glass half full kind of person)

Housebound and Down

I’m in medical purgatory! I have an ovarian cyst 30cmx20cm, at least that’s what I’m being led to believe. Have you ever got the feeling that you’re not being told the full story?

You see, I’ve had a large ovarian cyst before, the size of a football in fact. 17 years ago my dad took me to the doctor because I looked 6 months pregnant, after being poked and prodded by the doctor she promptly told my dad that she couldn’t tell if I was pregnant or not because I was too tense so she called the hospital to book me in for a ultrasound scan and we headed over there. This resulted in a rather uncomfortable car ride as a 15 year old me tried to convince my stony-faced dad that the only way I could possibly be pregnant was by Immaculate Conception! Well once I had the scan they found the cyst booked me into hospital and within a few days I’d had the operation and was unfortunately minus an ovary.

So you can see why now, five weeks after my initial doctors appointment, I’m a little sceptical as to what’s going on with my innards, because  for some reason  my trial is not nearly close to over. A few weeks ago I had to go sick from work because I’m in too much pain and can’t stand up for much longer than 30 minutes before feeling like my belly is going to drop off. Things are considerably worse now, I can’t even make a cup of tea without needing a very long sit down afterwards, and I’m officially housebound after a recent trip to the shop at the end of my road (barely even 5 minutes away) left me in agony for the rest of the day. Yet I’m still waiting for a call from the hospital to book me in for a CT scan appointment (that only run on Tuesdays and Fridays) and even after that elusive appointment has been attended I still have to wait for my scan results to be discussed amongst ‘the board’ (whatever that means) then be called back to the consultant to discuss my scan results, and fingers crossed that will then lead to me being booked into hospital to have this immense weight removed from me. I’d like to think that would be it, but unfortunately I’ve had the same hope whilst waiting for my ultrasound scan, and my first appointment with the gynaecology consultant and those hopes have been dashed.

My lovely husband is trying his best to convince me that maybe they want to know exactly what it is they’re dealing with before they do anything, but after 5 weeks, 2 scans, a gynaecological examination (yes it IS what you’re thinking it is), and about a dozen blood tests (including the scary CA-125, CA-19-9, and CEA tests) I’d like to think that a medical professional should have some idea by now.

I do appreciate that in this day and age doctors like to be thorough and not leave themselves open to malpractice suits, but surely my quality of life at the moment has got to come into the equation somewhere.