Saturday, 26 September 2015

The last twist in the tale?

All stitches now removed 
The last fortnight has been challenging emotionally, physically and mentally. After my second cranial surgery, recovery has been slow and I have felt like a wobbly jelly. I haven't been able to walk or do much really, and the highlight of the last few weeks has been going to church. I have been dreadfully emotional and weak as a kitten. Without Dean, I would not be able to even get up in the morning and certainly couldn't do anything apart from basic tasks. I am so grateful to him that it is impossible to express.

So the next stage is Gamma surgery. I have to recover first from the latest cranial surgery and then I am on the last lap, travelling down to Birmingham for a final blitz. My tumour has gone so there's no reason to worry. My surgeon will work alongside the Birmingham team and she hopes to never see me again. I am desperate to start making progress - I would love my face to look normal, and it is still unclear whether my hair will grow back. But each day is a blessing, and despite looking like a octogenarian balloon, I'm still standing and ready for the final hurdle.


Wednesday, 23 September 2015

Partial Eclipse

Wednesday 23rd September 2015

Hi all, Dean (husband of Amanda) here.

Today, we've seen the consultant who has carried out both of Amanda's cranial surgery procedures over the past 4 months. Should I edit the word 'procedures'? Sounds a bit clinical. No I, think I'll leave it there for now.

It was good to see Ms Albanese (the consultant). She made a valid point that she doesn't get to see her patients after surgery as they're discharged from hospital so quickly these days, there's not normally an opportunity to see them post-surgery....unlike Amanda, as it's unfortunate we've had to repeat the operation.

Ms Albanese is happy that there cancer has been removed (again) from Amanda's brain. She described that a sample of the tumour had been sent away for analysis and nothing sinister or malevolent had come back in the results. The best way to describe it is the eclipse photo below. The dark area of the sun is the area that was sent away for pathological analysis, and results came back fine. What Ms Albanese wants to happen now is to send the rest of the sun away for further treatment. Therefore, what's now going to happen is that Amanda will undergo further treatment. 

What "further treatment" doesn't mean is that there's any form of cancer still inside her brain, but it does mean that she will undertake non-invasive treatment to target a dose of radiotherapy to the rest of the sun (see above paragraph). I've described this in a few posts over the past couple of months via its more commonly known name of Cyber Knife surgery. There's a very useful description of what this entails on this website here: (the website in question, it turns out, was set up by friends and family of a former colleague within Staffordshire Police where I worked in Human Resources for a while 2007-2010.

So there will be no further cracking open of skulls, followed by 3 weeks of radiotherapy. Simply just two visits - one a discussion about the procedure, and secondly the procedure itself. Her's why it should be viewed as being a beneficial alternative to what Amanda has already gone through.

So, what next?

  • Ms Albanese is already in touch with the team at Queen Elizabeth Hospital, Birmingham where this next stage will take place. 
  • We need to allow 4 weeks until Amanda can undertake this next stage in order to recover from her most recent surgery. 
  • We'll find out more w/c 28th September on when this may be.
Amanda has not been well the last 36 hours since coming off Dexamethasone (used to counteract the development of edema, which could eventually compress other brain structures) and it was a task in itself to get her to hospital today. She reacted emotionally to the news from Ms Albanese today, which hopefully will now assist in a prolonged period of recuperation. Also, what Amanda has to accept that the path to recover is a long one, akin to the 'Snakes and Ladders' board below, rather than a short straight path. It'll take as long as it takes, and won't be over tomorrow, or the day after, as much as we'd both like for that to be the case.

Who said this journey would be straight forward?

So there we have it.

We're not getting carried away with things yet. We've learnt that we can't. At least we have an outline on what to expect over the next few weeks.

We'll continue to live by the matra "day by day" for the time being.

Thanks for reading. 

Friday, 18 September 2015

The long and winding road...

It's been a week since my latest surgery. Simple things like writing this blog have been frustratingly time consuming. I shake like a pensioner, take hours in the shower and spend inordinate amounts of time enveloped in the sofa. But I am heading in the right direction. I would love to make some progress now on the shallow stuff. I hate being bald, unrecognisably bloated and unsure whether I will ever look or be the same person again. But there are hundreds of people who would jump at the chance of having another shot at life. 


Tuesday, 15 September 2015

Where do I start?

As someone who loves language, I would absolutely love to express the last few weeks in a new and incredibly insightful way. However, instead, I have a head full of clich├ęs (and stitches). It's almost impossible to describe the last few weeks. I was absolutely devastated to find out that the cancer was back at lightning speed, and despite my faith, support from incredible friends and family and as much strength as I could muster, I was still quite powerfully affected by the news. As a Christian, I am confident of reaching Heaven, but I also don't feel ready to leave the people I love. I knew that my chances were pretty poor before the cancer returned so quickly. People with this aggressive form of cancer tend to have a very short life span. But the tumour has been removed, hopefully never to return. The margins were good. We are cautiously optimistic that it will never come back. So in many ways I have been very fortunate. It'll be a long road to recovery, but it's a road I am blessed to be taking. Many people won't be this lucky.


Sunday, 13 September 2015

Home again

Saturday 12th September

Amanda remains in the Critical Care Unity (no cause for alarm - she's simply recovering from a huge, huge operation and there's no beds available on the ward she will be moved to). Thankfully, the nausea and sickness which marred the period immediately after the same operation she went through back at the end of May didn't return this time and she actually had a good rest last night and she's even watched some Hollyoaks and Gogglebox on my iPad today. She managed to get an MRI scan at 8pm this evening as it's critical that we find out whether all of the tumour has been removed successfully. When being operated on, the margins were good although there is a risk to Amanda's ability to read and write if complications occur. We may get the feedback from this tomorrow or Monday. She's tired but she's fighting this.
As for the photo this evening, well put it this way. I'm amazed that really sick people - we're talking inpatients dressed inn pyjamas & dressing gowns who are quite obviously very ill here - to the point of having drips attached to them - quite brazenly just congregate around the main entrance points to the hospital sharing their smoking experience with us. Especially ironic near the lung clinic. Deep breath...well, I would if it wasn't for the noxious fumes around.

Sunday 13th September
Well here you can see below Amanda going through post-operative recovery. 48 hours after her surgery, she's home (and watching Big Brother, which some might say may lead to a speedy readmission to hospital)
So, what's happened in the last few hours?
She had her MRI scan at 8pm last night, and the results came back this morning." The post-operative scan showed satisfactory post-op appearance....she will be contacted for further management once the histology results are available"

The full terminology for the surgical procedure that she went through was " left parietal re-do craniotomy and de-bulking of recurrent metastatic lesion" 

She called me up at 9.30am this morning to say she was being allowed home and despite the usual bureaucracy of the staff having to fill out copious amounts of paperwork for discharge and awaiting a once over from physiotherapy,  the OK to leave Critical Care unit was permitted. 

So, next steps.
 - she's at home recovering now (you can see the horseshoe shaped bandaging on the back of her head covering the operation scar and the soft-stitches too)
 - stitches to be removed w/c 21st September
 - wait for further consultation once post-operation recovery has been completed

Amanda's very tired after being woken at 5.30am three mornings on the bounce (she didn't realise there was a 5.30am in the morning...), there's lots of swelling to contend with, and a whole lot more bruising from cannula insertions and surgical injections.

Pretty amazing (for the second time in just under 4 months) that she's home after pretty invasive cranial surgery within 48 hours.

Thanks for all of your messages as always. They've been a great source of comfort during a very difficult time.

Friday, 11 September 2015

Brain surgery - part 2

Thursday 10th September 2015

Amanda is now in hospital. As appreciative as we are for getting admitted so quickly (got the call at 1pm this afternoon and we were there for 1.30pm), we had to wait in the 'day room' until nearly 6.15pm waiting for a bed. Not a special bed with a view of the Hanging Gardens of Babylon or the plains of the Serengeti national park, or one of those beds where a 53 inch TV pops out of the faux leather feature at the end of the bed but just a normal bed. She's tired (although she had a relative pain free night until she woke this morning), she's absolutely dead beat so she's hoping to get a good night's sleep ahead of tomorrow (when, ironically, she'll be asleep even more).
Assuming no emergency admissions overnight, she's due up for her operation tomorrow (hopefully the morning).
Friday 11th September 2015

No overnight leg pains (thanks bananas) and she called this morning to say the operation was going ahead first thing. She hardly had chance to finish the call to be honest before she was wheeled away down to the theatre (still can't get what a weird word 'theatre' is in this instance, although the experts are performing their arts so I guess it kind of makes sense.
Anyway, was allowed to see Amanda​ briefly at 3.30pm this afternoon. She's under the influence (a bit strange for her, i'm sure her friends would agree), she's emotional but relieved that THIS stage of proceedings is out of the way. She's in the Critical Care Unit (CCU) overnight for 1-to-1 observation, and now there's the immediate aftermath she's really concerned about after what happened back in May where she was spectacularly sick a few hours after the operation for 24 hours. So spectacular was the illness back in May that she got 4 yes votes on The X Factor auditions and got through to bootcamp. So an important time ahead. She'll remain in CCU until tomorrow when, if recovery is satisfactory, she'll go back to ward for further recuperation. She did say a fresh start and a clear slate so very much looking to start on the front foot.

Wednesday, 9 September 2015

Third time lucky...hopefully

Wednesday 9th September

Update from Amanda's husband.

Sitting comfortably? Then I'll begin.

Pretty lousy overnight state of affairs here as the new medication to ease Amanda's leg pains didn't work so had to rock on up to the really hard stuff - Oramorph morphine solution, which eventually (at 5am) put Amanda​ to sleep after another sleepless night. (Don't even ask how I got on)
So, we met up with the neurological consultant this afternoon. Confirmed that the cancer has returned (albeit slightly smaller than documented in this photo from her original diagnosis prior to this one back in May  >>> What the consultant was keen to stress is that the return of it, although unusual, isn't terminal by anyway, and that an operation will take place to remove it (and actually, she could have 100 further operations without affecting her health, although we'll settle for 99 less, thanks doc.)

Next steps are as follows:
 - We're calling the hospital Thursday morning to check bed availability in the 
   neurological ward with a view to admission tomorrow at some stage.
 - Assuming Amanda can be admitted tomorrow and that no emergencies operations upset    the operation roster on Friday, then Amanda will be operated on this coming Friday. If      it's like last time, she may be fit enough to come home at the end of the weekend/early    next week.
 - Depending on the outcome of the operation, there remains the option of 'Cyber Knife'    
   surgery as detailed on one of my posts in late August.

So without going overboard as it's still a pretty serious set of circumstances we're dealing with right now - after all, you don't really want to go through any form of cranial surgery through your life at any stage..never mind twice like Amanda - there's cause for cautious AND very guarded optimism For a guide on what surgery on the brain involves, freak yourself out by reading this (strong drink optional whilst reading) >>>, there's cause for guarded optimism, but please take into account the massive emotional and physical trauma that Amanda has gone through already since November 2013.
Anyway, we have some advice on how Amanda can avoid the pains overnight tonight ('Eat bananas') and we're being encouraged to keep her mobile and not sitting and resting as much as she as otherwise she risks getting clots up through her legs into her lungs (no thanks...)

If you have even more time to waste right now, please head over to Amanda's blog, where I've catalogues some quite outstanding and potentially life saving service received by one particular member of the oncology team when Amanda was readmitted to hospital 3 weeks ago >>>

Tuesday, 8 September 2015

Unsung heroes

The healthcare professionals we've been under the care of over the last few months have been by and large a credit to their profession under very difficult circumstances.

The number of times I've had to call the NHS 111 service (for non-UK readers, 111 is the NHS non-emergency number where we call 111 on our telephone and speak to a highly trained adviser, supported by healthcare professionals. They ask a series of questions to assess symptoms and immediately direct the caller to the best medical care available. they're their 24/7). You can access more information about NHS 111 here.

I've lost count of the number of times in the past 18 months I've had to call them on countless occasions, from 11pm - midnight through to 6am-7am. If it wasn't for their support in getting access to see an out of hours GP back in May when Amanda was diagnosed with secondary breast cancer on the brain, it may have taken even longer to have got her the treatment that she was so much in need of. Not once have their questioned my need for their service, despite the numerous call outs. They've offered reassurance and reference to the correct service requirements whenever I've needed them.

With regards to Amanda's most recent hospital admission ( see here and here for recaps), two particular individuals have given me cause to write in to our Patient Advice and Liaison Service (PALS) to compliment them on the level of care provided to Amanda during her stay under the most unfortunate of circumstances. 

I've copied the contents of the email I forwarded to PALS below:
Unfortunately, my wife was again admitted to hospital via the Emergency Assessment Bay in the Cancer Centre on Thursday 20th August 2015.

I cannot begin to explain how indebted we both are to the calming but essential advice provided in a  telephone call to my wife by Dawn Beetham from your Oncology Department. Without her persistence to encourage her to visit hospital, we’d have had a serious issue to deal with at home on Thursday evening instead of receiving expert and rapid response to a seizure that my wife experienced on Thursday evening and early hours of Friday morning. Dawn is a hero. She maintains she was ‘doing her job’ but she took time out of her day to arrange for my wife’s admission and visited her over the course of the 4 nights she remained in hospital for.

The standard of care that my wife received in her time in the Emergency Assessment Bay and on Ward 201 was excellent, but we really must highlight how brilliant one of your team was. Her name was Ann (really sorry, I couldn’t catch her surname from her name badge clearly, but I believe it was a double barrelled surname, maybe with the name “Lopez” as the second part). She was a golden ray of light in a dark time for us both and the compassion and standard of care she provided was breathtaking.

My wife is home for the time being. Despite the reoccurrence of her condition that lead to her re-admission to hospital, I felt it necessary to highlight the above. Please pass through via whatever scheme you have for recognising your heroes onto all concerned.

Earlier today, the hospital contacted me by email with the following.

We always try to promote and encourage the good work our individual staff do whenever possible. May I therefore ask if you would like to nominate Dawn Beetham and Ann Ivory-Lopez  for the ‘UHNM Hero’ award?

This patient-led award recognises the hard work and dedication of teams and individuals around the Trust.  Staff are able to have their work promoted and also receive a certificate.

I'm only too happy to lend my words to nominating Dawn & Ann for the UHNM Hero award and would also extend out gratitude to the professionals who have been courteous, compassionate and supportive in all our dealings with them during this hideous time of our lives. 

Monday, 7 September 2015


Hi guys.

Sorry it's been quiet blog-wise over the past week or so. Amanda hasn't really got much energy for anything right now.

I'm also short-cutting the process somewhat by copying & pasting my Facebook statuses below. The main thing of note is that we have an appointment with Amanda's neurologist this coming Wednesday (9th September) to discuss treatment options for Amanda seeing as Amanda's cancer in her brain has returned.

5th September

Hi all, just to let you know what's been going on over the last few days.
Amanda has been pretty tired all week as the effects from the radiotherapy (which ended 6 weeks ago)are still live inside her head, despite the fact that the cancer has returned. We had 2 really rough nights this week, one where she was awake all night (you know when people say "all night" and only mean half of it? This was ALL night...) with piercing pains in both knees, and a less dramatic but painful night with ankle pains, both eased off with trusty Tramadol, one of the best pain relievers there is out there. We're just keeping an eye on this as one of the side effects of her current medication is DVT...)
She's had her best day of the week today so far and if she's well enough Sunday morning, I'll drive her to her favourite church, as she's expressed a wish to attend before the next part of our adventure.
Regarding the 'next part of our adventure', we have an appointment with the neurologist this coming Wednesday at which stage we'll find out far more on our next course of action and possible dates for the next surgery.
There now follows a cartoon with absolutely nothing to do with the above information.

**Update** Rough night frown emoticon Pain now gone from the knees down to the feet from the ankles but she's awake, and off to church with her dad.

7th September
Well Amanda got to church with her dad yesterday. That's the good news....
However, she was sick on the journey back which put a dampener on the day and we also had to have the Emergency Doctor at nearly 3am this morning because, for the 4th night in a row, Amanda was suffering from severe pains, this time in her feet and shins which our existing medication wasn't able to deal with. She's now on a course of Naproxen anti-inflammatories. Hospital have advised we get some further blood tests to see what's causing this (Amanda doesn't want to do this but as we'll be at the hospital for our nureological appointment this Wednesday, we'll get this done then. 

These night time episodes have been pretty exhausting. Think of a TV programme called "World's Best Trombone Player*" or something similar and watch it for 7 times on the bounce. It's even worse than that. Hoping that by giving Amanda 2 of these tablets before she goes to bed tonight will prevent a 5th night of misery and trombone-related analogies.

*Sorry if you play the trombone. No offence intended.

You're welcome to follow my Facebook profile for updates

Thanks all.