A whole new world

The magic of Disney

We are not long back from our family Florida trip where we spent ten days in the glorious sunshine (minus a couple of torrential downpours) getting mentally lost in a whole lot of Disney magic.  What a totally amazing holiday.

I literally forgot all my troubles and didn't think about what was waiting for me at home.  It was just brilliant.  I didn't want to come back....

One of my favourite pictures

1988

Exactly 30 years, in April 1988, mum and dad took my brother Dan and I on our first, and only, holiday abroad. We spent two weeks in Florida, of which I still remember a lot, and still have the Mickey Mouse that I bought and a keyring too!!  Back then, there were only about three parks in Orlando, but fast forward to 2018 and my goodness how that has changed.

We went to all the parks and absolutely loved it.  Even Tim enjoyed it (which I think surprised him).  To see Scarlett's face made the whole thing worth it - as she's 11 she was at the right age to want to go on all the rollercoasters, but also still wanted to meet the Disney princesses and characters.

You're never too old, right??

Our villa was gorgeous - brand new.  Four en-suite bedrooms and our own pool.

Breakfast by the pool

We walked nearly 10 miles each day in the 30 degree heat, there was music, laughter, dancing, sing a longs, screams on the rides and just lovely family time. 'Party of 6, party of 6' (that's a private joke).

To be fair, most people know I was a little apprehensive about so much time away with my family (I mean, I've not been on holiday with them since I was about 13), but I think we all surprised each other and got on well and pulled together when trying to plan stuff.

Fair play to my bro, he had planned most of the park days (as that is so much work with 'fast passes' and all sorts of stuff). It's more complicated than you might think....

The highlight had to be the Magic Kingdom fireworks, they were amazing. Watching them I had tears in my eyes, I was so happy and so grateful that I had been able to take this trip. And despite crapping myself about a number of the rides (including the Tower of Terror which drops you 13 stories in the dark), I LOVED them - it was all so exhilarating.

My face though....

My face though....

There's a theme here

DAS

I had read in advance that Disney has something called DAS (disability access service), which basically means you don't have to stand in the queues for hours if you are unable to due to a disability.  I knew some other people in my 'shituation' who had got one of these, so on the first day I went to customer services to see if I could, and they were brilliant and let me have one, so it meant that we didn't have to stand in 2.5 hour queues in the boiling heat and we could all go and get an ice cream or something to eat etc instead.  I was so relieved - it was a massive help.  However, at Universal they were having none of it, despite me telling them I had cancer in the spine. What a bunch of wankers.

In fact, I was really disappointed with Universal - it was a bit pikey to be honest.  It was the thing I was really looking forward to more than anything (the Harry Potter stuff), but actually - it was a bit shit and the Warner Bros studios in the UK is LOADS better.  The rides were quite cool but Diagon Alley and Hogsmeade were a bit whack.  But Scarlett loved it, so that was the main thing.

Hogwarts

Grimauld Place

Diagon Alley

I could write loads about Disney and all the rides and good times we had, but lots has happened since I've got back, so I'll leave it there otherwise this blog will be never ending.  But needless to say, I have simply AMAZING memories of this holiday that I will never forget and, no matter what happens, it is the trip I wanted to take and am so grateful to all of my family for making it possible (and especially to mum and dad for paying for it) - love you all LOADS. xxx

Arriving....

Getting into the park

The parade

Just off the jungle cruise

Down Main Street

The Haunted Mansion

We went on all the 'thrill' rides... hahahaha

Magical

MOANA....yay

Out in the evening at Manny's chop house

Moe's Tavern - The Simpsons at Universarl

Toy Story at Disney

My nemesis

Awesome

Excited to be here

At the Hollywood Studios evening show

In Pandora - the land of Avatar

Amazing

Epcot

The fam....

Our 7th wedding anniversary at the Magic Kingdom

Home and hospitals

So it's all been happening this past week....  As soon as I was back, I was on the phone to my secondary breast cancer nurse to find out what was going on with my liver biopsy.  She had been on the case while I was away, but didn't have a date.

I left it a few days and then spoke to her again and said that if we couldn't get a date soon, I was worried about delaying the chemo any further (as we know my liver cancer is growing), so I would be happy to put it off and get the chemo started.

She relayed that info to my oncologist, who then called me at 6.45pm on Weds eve last week to say 'Oh, I've been told you want to cancel your liver biopsy'..... Anyway, to cut a long story short, he then told me it was actually already booked in for Tues 24 April at Redditch Hospital.  He then said if I wanted to be put in for the chemo trial (which I had told my nurse that I did), then I would need an updated CT scan and that would need to be booked in, then I would need a follow up appointment with him to go through everything, but he didn't have the dates for those yet.

On Thursday morning I had a call from the chemo trial nurse to say that she would be at the follow up appointment with Dr P next Thursday (ie. 26 April), so at least that was one of the appointments sorted.

I then had a message saying that my CT scan had been booked for Monday 23 April at Kidderminster hospital.

Crikey....it's all happening.

Therefore last Friday I had to go to the hospital for my usual monthly hormone injection, and also had to go to Clover Suite to get some blood tests done in preparation for my biopsy the following Tuesday.

The usual fun times were had there as it took them three attempts to get blood out of me (sigh).

What a week

So this week has been full on to say the least.  How I'm not collapsed in a heap is beyond me!

Here goes (I'm going to have to be careful this doesn't sound like a Craig David song)...

Monday...  My dad took me to Kiddi hospital for a 10.05am CT scan.  I quite like Kiddi hospital - it's calm (as it's not an acute hospital) and the people there are always really friendly - also they never seem to have any trouble with my cannulas!  The radiology nurse was lovely and despite going into the same vein that had been tried for my blood tests a few days before which hurt quite a lot, she did at least manage to get the cannula in! Phew....  I was then waiting to go into the room and once called in the whole process takes less than ten mins - I lie there, hold my breath a few times, get pumped full of dye (or 'contrast' as they call it) and then move in and out of the 'doughnut' (aka the scanner).  Done.

I then had to wait for a while in the waiting room with dad as they have to make sure I don't have a reaction to the dye.... We were waiting for some time, and then eventually I had the cannula removed and we could head home.  We got back about 12pm, had a brew then took the dog for a walk before I went to work in the afternoon.  I then got a call from Redditch hospital asking if I could go in for my biopsy on Tuesday at 11am rather than 2pm... that was good for me as it meant I wasn't going to be hanging around at home crapping myself about it (although, in all fairness, I was still crapping myself about it, but just not for as long!!)

Before

They're in....

The lead suits worn by the radiology team

After

Tuesday.... here goes... so after getting home from work on Monday, I packed my bag ready for hospital on Tuesday (before heading to choir).  I had to take slippers and a dressing gown and I took some games, puzzle books and my MP3 player.  I was nil by mouth for four hours before the procedure so I set my alarm for 6.30am so I could get up and have some tea and toast!!  I actually slept better than I thought as I was bricking it....

Mum was on duty today.  I had to be at the hospital for 9am so mum came to get me at 8am (rush hour trying to get over to Redditch = leave an hour beforehand for sure!).  We headed for the Birch Unit, which is the day case unit, and there were already several ladies in there (I later found out they were all in there for minor gynae surgery... been there, done that, although two of them really suffered with the general anesthetic and were sick and fainting back on the ward - I'm glad I'm not like that).

Anyway, I digress...  Jo was the nurse who was 'in charge' of me today, and I've got to say, it was awesome having her as she literally was with me the whole day and even came into the procedure with me (and held my hand, but more on that later).  I had to go through the whole admission process where I have my obs taken and get asked a million and one questions.  She also said, "you'll get some buttered toast when you get back on the ward, but would you like me to see if I can get you a hot meal?", and I thought, why not - so I ordered breaded haddock, hash browns with beans and then apple and crumble with custard for afters (all the other patients only had buttered toast, so I think I was the envy of the ward! ha).

She said I didn't have to change into my gown straight away, but needed to be in it by 10.30am as the porters were likely to come and get me at 10.45am to take me down to the radiology department.  In the meantime, mum and I played Scrabble.

Jo also told me to go for a wee before the procedure as I would be on bed rest for four hours afterwards and would have to use a bed pan if I needed to go!! Joy.  She also called the radiology team to see if I really needed to have a cannula in.  Normally you do (but it very rarely gets used, only if I couldn't cope with the pain and needed sedation, or if I had internal bleeding and they needed to operate or give me a transfusion etc!!).  Radiology said as long as I was willing to accept that if sedation was required when I was down there that they would have to cancel the procedure if I didn't have a cannula in.  I was willing to accept the risk to save my veins!!

Then it was time, the porter came and had to wheel me downstairs on the trolley bed.  I said bye to mum and she was going to go off for a coffee in the hospital canteen.  I had started to go very dry in the mouth at this point.  At least everything was running to time though and I wasn't hanging around too much.

I was waiting outside the CT room (which is where I was having the procedure) for the patient before me.  The patient came out then they had to scrub the room down again before I went in.  My heart was starting to race now, but Jo was chatting to me the whole time and had even told me that she'd had a liver biopsy herself and said it wasn't that bad.  I'd heard they weren't that great, so was more nervous than normal, but Jo saying that really helped me.

Then it was my turn.  I was wheeled into the room.  The consultant who was performing it (a Dr Phillips) wasn't in the room yet, but everyone else (and their dog) seemed to be.  I had Jo, then a lady called Sarah (who was the main radiology nurse), two radiologists and two students from B'ham City Uni. Wowzers.

While they were waiting for Dr Phillips (who was apparently next door looking at my CT scan from the day before to determine where to 'go in'), the team got the biopsy tray ready.  When you see the size of a biopsy needles, it's pretty frightening, some of them are over 30cm long.  I mean, this was my fourth biospy (two breast, one sternum previously) so I'm sort of used to it, but even still, it's a bit daunting.

Dr Phillips finally came in and introduced himself, I said 'it's nice to meet you' and he looked at me and said 'you don't have to say that' (we all had a bit of of a laugh at that one).  He then said he wasn't sure if he was going to do the procedure under ultrasound (which is what I was booked for) or CT - as he has to navigate to the tumours in my liver one way or the other - he can't just stab around and hope for the best!!

And so it began, he explained what was going to happen and I had to sign the consent form.  I had my blood pressure and pulse checked.  I held Jo's hand, and Sarah held my shoulders down.  Dr P had swabbed the area (which was super cold) and then put the jelly on before using the ultrasound to have a look at my liver. This part seemed to take quite a long time.  In the meantime, we were all thinking of songs that might be appropriate for a biopsy (as I said I might start singing as I often do that when I'm nervous and having blood tests etc...I've probably not mentioned that before, but it is something I've done in the past).  Anyway, 'Piece of me' was suggested, and then Dr Phillips said 'I've got you under my skin', we were all laughing.  He then said he felt happy that he could do the procedure under ultrasound.

So the first part of the process is the local anesthetic.  They go under the ribs and through the abdomen for the biopsy so the local was put in on my right side.  Blimey, did that smart... yes it did.  It was super stingy and felt like the needle was about a metre long.  At this point I was squeezing Jo's hand very tightly. He pressed hard onto my ribs so that the anesthetic would dissipate and that hurt a bit as it felt really tender.  I could tell it was all going numb though and it felt tight across my stomach when I was breathing in and out.

The next thing he said to me was that he had to make a cut in my side and then put in a boring needle and that it would feel like it was popping as it went through my abdomen. He said that I was not to jolt at this point as it meant the needle could go in the wrong place (and as the liver is full of blood vessels, we have to be very careful).  Honestly, I think I would have preferred him not to say anything as then I was waiting for it. Then when it did happen I did jump a bit (but not as much as I was expecting)....it was a very, very strange sensation.

The girls and I were then gabbing away and talking to take my mind off it (as I had been taking some very deep breaths with panic) and they even made me laugh, then Dr P had to say that I needed to stop laughing as he couldn't get the needle in the right place. Oops.  Then it was the 'staple gun' as I call it.  That's what it sounds and feels like when they take the biopsy sample from the tumours.  He took four samples in all.  And then I was done.  I was so relieved.  The needles were out and I was ultrasounded in more detail all over the liver to make sure there was no internal bleeding and then cleaned up and a dressing put over the entrance site.

I thanked everyone and then the biopsy pot was put with me on my bed and wheeled back upstairs (once we managed to find a porter)!!!  I was so relieved it was over.  It wasn't great, but it wasn't as bad as I'd been expecting.

I got back upstairs about 12.15pm and was really glad to see mum.  Jo called for my lunch to be brought up and I could have a cuppa too (as well as several biscuits).  I ate it all.  I think the stress had made me hungry.  Mum had brought her lunch with her and I'd brought us both a pecan and chocolate cookie I'd made at the weekend.

To be fair, the next four hours really seemed to drag.  Mum and I were both bored...I started to get quite tired and nearly drifted off but the trolley wasn't very comfortable (I wasn't in a proper bed).  We played cards for a bit and both read our magazines and chatted to the other nurses and Jo too. I had my obs done every 15 mins for the first hour then every hour.  My blood pressure was dropping and Jo insisted that I drink more.  The only reason I didn't want to drink though is cos of the bed pen situation, but Jo said, 'right, have another cup of tea and a biscuit and if your bp gets over 100 you can go'.  So I did what she said and thankfully it worked.  Just before 4pm she got me in a wheelchair and took me to the toilet so I could go and then she said we can discharge you now, so I got changed (there was more blood on my hospital gown than I thought too!!) and filled in the paperwork and Jo wheeled me downstairs in the wheelchair.  Mum had gone in advance to get the car so she could pull up outside the entrance to get me.  And then we made the journey home.  I was so glad to get back and see Rocco.  I got back just after 5 so Timmy wasn't too long home after that. Bless him.  He was so relieved to see me.

Just back after it had been done

Lunch

With Juney

After

A week later

Wednesday.... they had told me to take at least 24 hours rest (and make sure someone was monitoring me) and to not do anything as if I strained my liver it could cause internal bleeding.  So Tim took the dog out in the morning then drove me and the dog to mum and dad's and they looked after me on Wednesday while Tim was at work (more Scrabble was played).

Recovery day Popmaster

Rocco helping me play Scrabble

hahahahahaha (#juvenile)

Thursday... my oncology appointment was booked for 4.45pm.  As most of you will know if you've watched my previous vlog, I have been shitting myself about this as I was worried that my cancer has been progressing a LOT and might have spread elsewhere.

I went to work in the morning and got a call about 11am from Dr P's secretary asking if I can go in earlier at 1.30pm. SHIT SHIT SHIT... why? what? oh god... I called Tim and we were both fearing the worst.  I left work at 12.30 so I could get home and meet with Tim (who'd left work early too) and then we headed up together.  We decided to park at Tesco and walk up (it's about 15/20mins) to give ourselves some air and breathing space.

Then we arrive and sit in the Rowan Suite - I bloody hate it in that waiting room.  It is so dark and depressing.  We are sat for 15 mins or so then I am called through by one of the nurses.  Her name is Pam.  She said 'I just need your weight and height'. Oh, ok. Then she explains that she is one of the trial nurses and has a number of tests to do with me before I can be accepted onto the trial - and THAT is why I've been called in early.  She couldn't believe that someone hadn't explained that... Jeez!!!  Anyway, I also see Sue (my nurse) and we are waiting for Dr P.   Tim and I are still both nervous.

Then he arrives and in we go with both Sue and Pam (the trail nurse).  So here goes...

• The CT from Monday has shown there is more growth in the liver since my liver MRI (which I expected)
• My blood tests have also shown that my cancer 'markers' are up (they have been stable until now, so that's not great as it means it's flowing through my body)
• However, they can't detect that is has spread anywhere else yet (This, as far as Tim and I are concerned, is good news!  Even though the cancer is growing, at least it isn't anywhere else....yet!)
• The biopsy result is not yet available, but it has been marked as urgent. The biopsy is to determine if my cancer has changed from HER2negative to HER2positive - it it very unlikely, but there is a slim chance
• If it has changed, then I will go on a completely different drug regime with my chemo and also have a drug called Hercptin
• If it hasn't changed I will be on either Paclitaxel weekly (for 18 weeks) or Carbazitaxel every 3 weeks (for 18 weeks)
• Carb is the trial drug... I will be 'randomised' and either Pac or Carb will be chosen for me by the trial team (no one has any influence over this in Worcester)
• Carb has nasty side effects (including severe diarrhea and sickness!) - it is a drug that's been very effective in prostate cancer
• Pac is 'easier' to handle as it's given weekly but I will still lose my hair
• I am to stop my hormone medication (which I've now done) as it's not working - I'm hoping it will be an end to the hot flushes, but we'll see (I certainly hope my periods don't start again....that really would be taking the piss!!)
• I will have scans every six weeks to see how things are going
• I won't process/excrete the chemo toxins as well as others as you need your liver to do that and obviously my liver is full of other stuff so it is possible I will feel the chemo effects for longer
• I can come off the trial at any point if I choose

I then had to have some more blood tests (for the trial), which were, again, a disaster (as my veins have been over used this week) and it took three attempts (in the end they went in the right arm, which is against the rules because of the risk of lymphodema).  This then led to discussing having a PICC line fitted - this is thin catheter that stays in your arm throughout treatment which means you can have your blood taken out of it, have your chemo administered through it and stuff like that, rather than messing with my veins (which are already shot).

I had to be physically examined by Dr P (collar bone, armpits, boobs, stomach), and then had to complete two questionnaires about how I am currently feeling (which they will take throughout the trial to see how things progress).  On one of them I had to rate from 0 to 100 how good my health was.... I burst out laughing.  '0' is the 'worst health' and '100' is the best health.  I went with '15' as I know things are going to get worse......

Pam said she would call me the next day (Friday) to let me know when my pre-chemo assessment meeting would be and when I could have the PICC line inserted.

I then had to go downstairs for an ECG which took two minutes.

Eventually we left the hospital at 3.30pm and headed home absolutely shattered....  There was so much to take in.  But at least things are happening and I am praying that the chemo works and the liver tumours stabilise/get smaller and my cancer markers get under control!!!

Friday.... I had a call from Pam telling me that my biopsy results should be in on Monday, and my assessment and PICC line is probably going to be fitted next Friday (but she'll call Monday to confirm) and that my chemo will start the following Tuesday (after bank holiday) - non-fun times.

So that's it, it's now Sunday night and I'm gasping for a glass of white wine so I'm signing off....

Until next time. xx