Wednesday, 26 August 2015

Another operation required...

Wednesday 26th August

Hi all, Dean here.

Excuse the rushed nature of this post, I've copied/pasted direct from the Facebook post I posted a short while back.

"**Wife update**

Hospital called late this afternoon. They've held their multidisciplinary team meeting today have have decided the most effective way of dealing with the reoccurrence of the cancer on Amanda's brain is by further surgery.
It's not ideal, and having read lots about the alternative 'Cyber Knife' treatment in the past few days, we were kind of gearing ourselves towards that without the complications and trauma that major surgery on the brain would involve (and the after effects too).
Surgery will not take place until week commencing 7th September (the lead neurologist is on annual leave next week) so there's a degree of frustration at the delay, but Amanda is still recovering from radiotherapy and also the medication she is currently on is managing her condition and that this time lapse will not affect things. Being ultra cynical, the speed in which the growth returned seems to me at odds with what they said earlier this evening (about the time lapse), but they're the experts. 
So we're facing up to another almighty battle. We've not particularly received this news very well. But we go on.
I wrote this in reply to someone a couple of nights back. It very much stands right now.
"No more prayers, no more positive thoughts, just the rub of the green and a big slice of luck will do please. That's all we ask."

Sunday, 23 August 2015

3rd time unlucky

Sunday 23rd August

Here's my Facebook update from earlier this afternoon.

"*Wife update*

We've been told this afternoon that the cancer in Amanda's brain has returned. It's in the same place, and is already nearly the same size as when it was first diagnosed back in May (remember the Death Star photo?) . Bearing in mind it's been 5 weeks since her previous scan, that's pretty quick. It looks like Amanda will go to Birmingham for gamma ray surgery but we'll find out once the cancer team have spoken to the neurological consultant, probably on Monday sometime. Further updates to follow. So as the mighty Steven Gerrard said a couple of years back "We go again" (Hopefully without slipping on our arses)"

If you wish to get updates, please follow me on my Facebook page - I have an open profile  so accessible to all

Saturday, 22 August 2015

Back into hospital :(

Hi, it's Dean, (husband of Amanda) here.

I've copied and paste my updates from my Facebook profile below. 

Thursday 20th August 2015

Had to bring Amanda back into hospital this morning 😢 Over the last few days, she's not been able to eat any food apart from 6 Jacobs Cream Crackers, which when I checked last, had the nutritional value of a wasp. She's also drinking very little, and what little she is eating /drinking isn't staying down for long. This has been going on for a few days and her anti sickness medication hasn't worked for a while and seeing Amanda suffer so much left me with little alternative, especially after repeated vomiting this morning. There's added complications as Amanda doesn't actually want to come to hospital for reasons I won't go into right now, so getting her in really was a struggle. She's picked up a slight infection and will be having a precautionary scan too. She's on a drip which will provide her with much needed hydration and an intravenous anti sickness which will hopefully be effective. Hope to be able to bring you some better news real soon. She's only 40 yards away from where my dad is receiving treatment so here's a big 'Cheers' to the medical gods to arranging this special treat. 

Finally... Time for a poll of you guys reading this. If you are to see a junior doctor carrying out a Google search to check out a medical condition as I witnessed this morning , would you feel a mild sense of reassurance or huge waves of panic?

Friday 21st August 2015

stayed in hospital overnight. She had a CT scan on her head and torso at 2am which has come back clear... so far so good. However there have been complications. She had 2 seizures (9pm and 1am) and has become very confused and disoriented, she also bit her tongue and drew blood and other undesirable effects too. She can't speak the words that she is trying to say(initial thoughts are this maybe the side effects of the operation which we are told could happen) , and she was thrashing about with her arms and legs during a scan so much that she's already picked up Peter Andre as a dance partner in Strictly Come Dancing.
Thing is, this morning, she didn't have a Scooby Doo about what had happened during the night. Probably for the best. She's due to have an MRI scan today so that the neurological team can assess what exactly happened during the night with regard to the seizures, but I have been told that if this had happened at home without the specialist medical team close by, it could have been far more serious. The seizures are likely be a temporary side effect of her recent treatment but we'll see. She's had her first meal for a week today (spinach quiche and chips for you hospital foodie fans).
Anyway, here's quote possibly the most nonplussed bed remote control photo you'll see today. Check out those eyebrows.

Monday, 17 August 2015

Death by Google

Word of warning...if you are looking for some reassuring information and turn to your trusty online friend, Google, beware of straying too far from your original search topic. After weeks of miserable side effects, I thought I would look up when I was likely to feel better. Although my Dad and Dean assure me that I am turning the corner (I feel like it's the metaphorical corners that taxi drivers promise to be turning when they haven't even left the cab office) I still feel pretty rubbish. I am still vomiting daily, have no energy, sleep most of the time, eat about 300 calories a day, have a head hotter than the sun and have the constitution of a rusty old boiler. I looked up all the official cancer sites to be reassured that this was (a) normal and (b) soon to end but instead was so horrified by the severity of my situation that I assumed a new side effect - raging self pity. Of course everyone is different and statistics are only representative, but it makes challenging reading. And, you'd have to have an iron will to not be affected by them. I then started making ever more desperate searches for good news stories e.g. "I've been living with secondary breast cancer since 1901" or "I had a brain tumour when I was in the womb, and I just received my telegraph from the Queen" etc. etc.

So I do believe that it is important to understand your condition and the possible outcomes, however it is also important to focus on the fact that treatments are constantly changing. I would also suggest going to the experts. That's why I've booked an appointment with a Macmillan counsellor on Friday.

Wish me luck.


Thursday, 13 August 2015

More dreary news...sorry

Had my review with my oncologist yesterday. Not much to report as they don't really know anything. I will have a scan in a couple of months, and need to be vigilant for any new symptoms. I will always be at a high risk of recurrence and will never be in remission. Still feeling utterly rubbish...not eaten for days as I feel so sick and Dean is getting anxious. My hair seems to be going rather than growing, so my legendary patience is tested to the max. I have managed a very short walk for a couple of days and my cheeks are gradually reducing so that's a positive. I cannot wait for this all to be over and to be a normal person again. Sorry that this blog is so dreary. I hope at some point to turn the corner and share good news with everyone.


Sunday, 9 August 2015

Never ending story

Sorry for the cut and paste Facebook post, time is against me right now with al that's going on here.

Dean (husband of Amanda)

Wednesday, 5 August 2015

What I am made of

Well it's been a rough few days. I have been coming off the steroids and it's not been fun. The squeamish amongst you can look away now. My hair has been continuing to fall out, leaving me with a receding hairline that Jude Law would be proud of. The anti-emetics have stopped working completely, but taunt me by making me vomit five minutes after they hit my stomach. I have only left the house once in two weeks to go to acupuncture and I have suffered from violent migraines, vomiting, a misplaced rib and severe leg pain. It's been pretty rubbish. I cannot wait for this to end. Sorry to be so miserable, but if someone can shine a light on my life, I would very much welcome the dawn as it's pretty dark in here.


Saturday, 1 August 2015

When the drugs don't work

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHH. This is absolutely horrible. I am so fed up. I veer between hot sweats, comatose sleeps, debilitating migraines and periods of self pity. My face is still massive and has swollen up over my lips which are covered in cracks and sores. My stomach is shrinking a little now which is a small consolation. My muscles are completely wasted now and I am struggling to rebuild my strength. Apparently there is more to come and I really want out. The come down has been horrible. Coming off a drug that you never wanted to be on anyway is really annoying. Well, bring on the Summer. I know each day is a day closer to recovery but it's getting rather wearing.