The (not so) secret diary of a 40 year old with incurable cancer....: February 2018

Me!

How are you all?? Hope you had a great Christmas and New Year (totally seems like ages ago now)

THE Holiday

Sunrise over Angkor Wat....a lifetime dream fulfilled

Wow, wow, and wow....our trip to Thailand and Cambodia was just so wonderful. Full of memorable and humbling experiences. The pinnacle was watching the sunrise over Angkor Wat, a place I've always wanted to see. It was stunning. The temples in both countries are amazing - as is the food - yum-o-rama !!!

Congee for breakfast in Cambodia

BBQ pork in Thailand

Birthday coconut.... Happy 44th b'day Timmy in Cambodia

Food in Siem Reap

Street food tour in Bangkok

What I wasn't expecting was how incredibly friendly all the people were and so generous in spirit, despite many of them being so poor. Also it was really interesting talking to the guides as they all had their own quite strong political views and opinions on their monarchs.

Both countries exceeded our expectations and I'd love to go back and explore more of Thailand. I feel incredibly lucky to have visited such exhilarating places. A feast for the senses and Tim and I made memories we'll never forget.

Here are a shed load of photos in a random order before the rest of the blog.... soz about that.

In the Etihad business class lounge

And relax...our first few days were in Phuket

New Year's day at the beach

Freedom beach, Phuket

Sunset in Siem Reap

Our hotel in Siem Reap, Cambodia....

New Year's Day evening....drunk in Patong (spot the pole dancer behind us)

An early morning flight on Tim's b'day (opening cards at Phuket airport)

Lara Croft territory in Cambodia

Our hotel before heading out for dinner on Tim's b'day

Pub Street, Siem Reap

Our transport around a Cambodian village

Tim milling the rice

This beetle fell right next to me then our guide picked it up....I crapped myself!!

Beautiful

Buddhist temple where Tim and I were 'blessed'

Temples

Phnom Penh Royal Palace

Chilling in Bangkok

Rooftop bar Cambodian style

Phnom Penh Independence Monument

Who's house??

Our guide for our street food tour in a tuk tuk - Bangkok

Phuket hotel pool

The monks were taking selfies too....so bizarre. Bangkok

A LOT of gold...Bangkok

The giant buddha

New Year's Eve in Thailand

NYE 2017

Cambodia temples

Back to reality

When we got back, reality hit...I was given some crap news about one of my fab friends who is also living with cancer. She knows who she is, and she knows she is a totally ace person and she is doing what makes her happy in the best way she can at the moment. Go girlfriend... We've had fun throwing each other abuse and catching up with secret santa pressies since I've been back.

My own living with cancer experiences started the week I got back too when I was meant to be having my routine three monthly CT scan. This was my first trip to Redditch hospital (as it was the only place they could get an appointment for me). So dad took me over there... The appointment was at 2.30pm and I'd finished work at 1pm. For some reason I wasn't 'feeling it' and had a suspicion that things weren't going to go my way on this occasion. How right I was...

After seemingly everyone else in the waiting room (including those who'd got there after me) were called through, the door where the radiology nurses sit opened and I could hear my name and something about 'is she here?', so I shout 'I'm here' and then someone came out.

She then takes me to the side of the waiting area to sit on a hospital bed and pulls a curtain around us so everyone can still hear. She's going to do my cannula today.

The first thing she says is 'how are your veins' and, as usual, my stock answer is 'not very good', to which she replies 'oh no, I've been given really tricky patients today'. Now, as someone (as you all know) who hates veins and blood tests and cannulas, this is not what I want to hear a trained professional say.

She pumps up the bed so I'm a bit higher and then tells me to straighten my arm, then my favourite bit begins where they are poking around to see if they can get a vein. This seems to be forever, then she decides to go in - I think she's done it as she does a slight wiggle of the needle, but no, she says she isn't in and has to take it out...I then proceed to bleed a lot (#standard). This has already got me uptight as we all know that I only really have one decent vein in my arm after all my previous chemo etc, and I can only have them inserted into my left arm because I've had lymph nodes removed in my right.

So, she tries again and immediately it hurts and stings and I flinch and then she says 'oh no, I've come over all hot, I'm not going to try anymore'... WTactualF. Was she joking?! I then came over all hot at this point (and not in a good way!!!) Honestly, they really need full on tried and tested people who can insert cannulas in a CT/MRI clinic because the stress it causes is a nightmare for those of us with shit veins. She said that she would leave it... er, and what happens now??

A few minutes later I'm then called through to the CT scan room (which is always freezing and isn't good for veins either). The radiologist then decides to have a go in a different vein in the crook of my arm while I'm lying on the machine. He really gives it a jiggle around and it still won't take. Then he tries my hand, and that doesn't take, and then he asks if he can have a go in the same vein as the nurse before....I say yes as obviously I want to make sure I can get my proper CT scan, it's awful and I'm crying at this point, I literally had tears rolling into my ears (which was a new experience for me). He tries, and fails. I am so upset now. The nurse said 'oh, don't you like needles?' Bloody cheek. I mean, who does like needles? I explain that I've got incurable cancer and I don't like veins and I'm finding the whole thing quite stressful.

The radiologist then consults with a Dr to see if I can have the CT scan without the dye injection (aka 'contrast') and they say yes, so it goes ahead. Dad can see how upset I am when I get out of the room and neither of us can wait to get home. It's the first time in ten years of cancer treatment that they haven't been able to complete a procedure. I'm bloody fuming.

The next day I see Dr P for my regular meeting. He said 'did I not request the contrast with your CT scan?' and I then had to explain to him what had happened. He said he was unable to see my liver on the CT and therefore I will have to have another of those awful liver MRI scans (which, incidentally, I'm still waiting for the appointment for). This is to see if my liver tumours are bigger/smaller/stable to work out whether I need to change my medication regime or have the ablation I've spoken about before. However, he did say he couldn't see anything else in the bones on the CT scan, but he would need to wait for the report to be read properly before confirming that (I'm still waiting for that too).

Put your back into it

The next thing to bore you with is my back cement debacle.

As you may remember in November last year, my original procedure date was cancelled due to a lack of beds, so I wasn't holding out much hope for my next procedure.

As soon as we were back from hols I called to see if it had been rearranged and was told that they were having trouble with beds again and she was sorting it out and would call me. I gave it another week and thought I'd call again. I was then told that the procedure had been booked for 5 Feb, but would, again, depend on whether there was a bed available for me. It was a good job I phoned, as I only ever received written confirmation of the appointment and what I needed to bring etc etc on Saturday 3 Feb (what a joke!)... especially as I need to let work know, arrange transport, arrange for the dog to be looked after while Tim is with me at the hospital etc etc.

Trying to get that letter was unbelievable - I had to make five phone calls in the week proceeding the procedure to try and get any information. I was then told the letter had been sent on Wednesday, first class (this was the Friday). I therefore asked if someone could read the content of the letter to me as I knew no one would be around on the Saturday to ask (and the procedure was meant to be on the Monday). It was a good job I did as the letter informed me to call up the day before (ie Sunday) to confirm if there was a bed. FFS!!! So there was still no guarantee it was going ahead. Lo and behold, the letter arrived on Saturday - although marked first class someone has posted it second class and not until the Thursday.

Then the fun really started. I called up (as instructed) between 10am-11am on Sunday morning. 'No we don't have any beds available at the moment, we'll call you later'.

The hours roll by....I mean, how can I plan anything if I don't know what's going on...especially as it involves a trip to Coventry which is a right faff to get to. So I decide to call back at 2.30pm. "We're trying to get you a bed in the day surgery unit and then you'll go back to Ward 35 after the procedure. We'll call you back". Eventually I get a call at 4.30pm....there is a bed. The lady from Ward 35 is going to send the relevant notes to the day surgery ward so they know what tests I need.

I then pack (I hadn't bothered before as I was unsure whether it would be happening), Tim made us some sandwiches and we headed to Coventry. We arrived at 6.30pm and headed for day surgery. Did they have a clue who I was? Of course they didn't. Here we go.... They asked me to go and sit in the main waiting room while they sorted it out. Tim and I ate our sarnies.

They then came back about 30 mins later and said they had worked out who I was and that a Dr would come to see me so we waited for about 40 mins. A Dr arrived and listened to my chest, asked me some generic questions (allergies etc etc) and then said that someone would come and take blood and insert a cannula. I was then given a bed. I was starting to get really nervous. My obs were taken and I was given a name tag. I had to do an MRSA swab and urine test - they were both fine.

Before it all started going tits up

The bowl for my urine sample which had a leak!! Great

I didn't want Tim waiting around too late as he had to drive back home and get ready for work on Monday so he left at about 8.45pm.

I was told by the ward sister that the night Dr would come and do my bloods and cannula. I sat reading (while people opposite me were snoring away ....good job I took ear plugs), and then I decided to get ready for bed and went to the toilets to get changed and have a wash. I turned my light out at 10.20pm but the main ward lights were still on (I had an eye mask too). Did I sleep, er no, not at all.

There was a woman who had arrived from Chile the dayand had a fall who was blabbering away in Spanish for ages, and then at 11.30pm the nurse came to take my obs again. Still no sign of the night Dr.

Tossing and turning I had all sorts going through my head. Then at 2.45am a nurse came to take my blood - 2.45am!? At least she managed first time (thank god). I asked her whether she would be doing my cannula and she asked if I was having a general, and I said 'no, just sedation' and then she said that they would do the cannula in the procedure room so I wasn't lying with it all night in my arm. Seemed to make sense.

At 6.20am the lights went on and obs were being taken etc etc. I was nil by mouth at this point and felt really woozy as I'd had no sleep...In the night, I'd had such panic attacks that I was shaking (which incidentally meant I pulled a muscle near my ribs...ouch). Anyway, the ward sister comes in to ask if I need pain relief (er, no) and then says 'I'll come and give you your pre-op antibiotics in a minute'. She then comes back with two syringes full and looks at me and says 'where's your cannula?' I was told I didn't need it until the procedure. FFSx2.

As I'm nil by mouth they need to inject me with the liquid antibiotics. I hear her ask one of the other nurses whether she can insert cannulas to which she replied 'no', so then the sister had to do it herself. I was dreading it as she told me she doesn't do it very often. She tried in my hand, wiggled around a lot and then took it out and I bled a LOT ... she then went in the side of my arm and thank goodness managed to get it in (although there was a lot of blood again!!!) and then she injected the antibiotics which left a metallic taste.

Great!

At this point other patients were arriving to the day surgery for their procedures and all of them had the same tests as me, so why on earth I had to be in the night before is a complete joke and waste of resources (I found out later it's so they can guarantee me a bed on the night of the procedure, but that seems totally stupid to me). Anyway, it was getting near to 9am (the time of my procedure) and no one had told me to put on a gown or anything. The staff had changed to the day staff at this point and I felt a bit forgetten about so I pressed my buzzer to ask if someone could find out what was going on. The time kept ticking by. Then, bizarrely, I wrote to Tim (the one good thing about Cov hospital is that it has free wi fi!!) to say that I knew that Dr D (doing the procedure) had been on holiday the week before and I wonder if something has happened or he's ill or something? Waiting, waiting....other patients who'd arrived in the morning had already been carted off to have their procedures. Something was up. Oh yes, it was....

At 9.40, two nurses came to the side of my bed and pulled the curtain around.... We're really sorry, but your consultant is ill and so your procedure is cancelled. I KNEW IT!!!! I was absolutely devastated....after waiting since last September to have the procedure, it's now the second time of cancellation.

Now I know Dr D can't help being ill - but surely they would have known first thing in the morning that was the case and not kept me hanging around wondering what the hell was going on to tell me. I had my head in my hands and said I knew they were only the messengers, but I've got incurable cancer and I need this procedure...when am I going to be a priority??? I then jumped out of bed and went somewhere to find phone signal.

Tim was already on his way to the hospital at this point with the expectation of seeing me in recovery once out of the procedure so I had to call him and tell him it had been cancelled. He couldn't believe it either. He'd hated leaving me in the hospital the night before and was also finding the whole thing quite stressful. Now for anyone who knows Timmy B, they know him as a very calm, rational person, but when I told him the news he turned into 'fucked off Timmy and was bloody fuming.... I was obviously in tears too.... I then called my dad and told him, he was really upset as well. What a morning.

I got back onto the ward and asked someone if they could grab me some food (it was near 10am now) and to take my cannula out. The cannula was removed, I then got changed, had my toast and tea and asked if I needed to be officially discharged, they said 'no' and so I just packed up and left. I couldn't wait to get off the ward. (Annoyingly I left my MP3 player at the hospital and they've said they can't find it....sigh...so now I need to buy a new one and a new SD card as all my music was on it...boo)

Timmy arrived and we hugged and then headed home. I had a date with the sofa for most of the day as I was exhausted....we took the dog out in the sunshine, which was nice, and I wrote two complaint letters to the CEO and Chairman of the Acute Trust about everything that has gone on with me not being a priority and the waste of resources it had been with me in the night before, and then I consoled myself with a LOT of red wine in the evening.

I am booked in again for 21 Feb, but it depends on the bed availability...yawnsville... TO BE CONTINUED.

Fun times

In between times I had a totally awesome night out with the girls where I danced all night to, what Helen and Susie call, 'R&B shit', but which Jenn and I totally love... I've treated myself to some new make up recently so decided to try some of it out.

New HudaBeauty and Charlotte Tilbury purchases on show

Pout practice

Then after all the hospital faff, I could finally look forward to Kevin and Matthew's wedding which was taking place at Worcester's Guildhall. What a totally fab day we had.... We were sat on a great table, we ate pie and mash and in the evening did lots of dancing.