A surprisingly upbeat week

Saturday 31st October 2015

Apart from an embarrassing incident at the Harvester salad cart where I ended up slipping over on my hands and knees by the sauce bar, it's actually been a really good week.

I've been absolutely overwhelmed by people's kindness and generosity. I've been thrilled to see some old faces and receive some fantastic cards and presents, which have really made me smile.

Thank you all so much - to my clients, friends and family, who have made this week incredibly special and surprisingly up-lifting. I've been so touched and moved.

We're acquainted now with our Douglas Macmillan contact and she is already providing fantastic support to Dean and my dad. We are going for a tour of the hospice in the next few days which although it sounds grim, it will actually be a good way to acclimatise ourselves for what's ahead. Having gone to fundraising events there before, it seems like a beautiful place in gorgeous surroundings and when the time comes, I'm sure they'll do me proud.

I've had visitors from far and wide, such as East Coast USA (yes, seriously - someone flew in especially to see me - thanks Matt), Elgin and London so far. I feel incredibly blessed and although this is a hideous time, it's actually been wonderful and inspiring as well.

Since we've always been upfront on this blog, it has been a week of difficult decisions. We've met with solicitors, financial advisors and former colleagues. As anyone who knows me would expect, my affairs are now officially in order and this makes me feel incredibly reassured, as grim as this may sound. If there's one bit of advice I can share with you from this financial and legal experience, it is to get everything in order before you die so that you can enjoy time with the ones that mean the most to you.

If I've not replied to any of your messages, correspondence or gifts, it certainly doesn't mean they're not extremely precious to me. Dean is taking care of responding for me where time allows otherwise it would take me about 16 years to type a text.

Thank you all.

Amanda (typed by Dean).

Special upcoming event - A celebration of Amanda’s life, friendships and adventures!

On Sunday 15 November 2015 , at The Church Bar and Restaurant, Hanley, Stoke-on-Trent, Amanda’s family, friends and anyone known to her professionally are invited to a 'coming together' for an informal ‘This is your life’ get-together, which promises to be full of happy memories and laughter. Amanda’s long-term friend and colleague David Patrick is hosting the event, and he invites guests to bring stories, photos (please bring photos) and memories to share.

FULL EVENT DETAILS ARE HERE : https://www.justgiving.com/teams/amandamcdonald

Friends are invited to ‘drop in’ any time between 3pm-6pm, although you are very welcome to remain well into the evening beyond the end of the get-together. A hot buffet will be provided upstairs, but for those who prefer something a little stronger The Church also has a licensed bar downstairs. Renowned jazz singer (and friend of Amanda) Miss K Copeland will be performing a set with her band, ensuring the afternoon really does go with a swing.

All family and friends are welcome to attend, and – just for once – ‘positive vibes’ are welcome too!

Donations of £15 are invited, with all proceeds after costs going to Amanda’s chosen charities: 

1) The Migraine Trust (Amanda has suffered from chronic migraines for 20+ years and this is a very much under supported cause)
DONATE HERE: https://www.justgiving.com/celebratingamanda/

2) Meningitis Now (in memory of Amanda's beloved sibling, Steph, who died of meningitis, age 15)
DONATE HERE: https://www.justgiving.com/celebratingamanda3/

and 

3) Douglas Macmillan Hospice (which provides all of their hospice services free of charge to adults with life limiting illnesses in the North Staffordshire area and also provides much needed supportive care for their families and carers and who have provided Amanda's family with invaluable assistance in preparation for the months ahead).
DONATE HERE: https://www.justgiving.com/celebratingamanda1/

It would be great to spread the donations evenly, so if you're donating and see one of the charities doesn't have as much as the others, please donate to that charity accordingly :)

Once you donate, they'll send your money directly to the charity. They'll make sure Gift Aid (an additional 25%) is reclaimed on every eligible donation by a UK taxpayer, too. That means more money goes to the charity, faster.

For those unable to attend and have message us over the last few days offering any help in the aftermath of our devastating news, we would be extremely grateful if you would consider a small donation to any of the above charities. No matter how small, any donation you can make would be so much appreciated.

If you have any queries in the run up to the event, or would like to offer additional help with organising or contributing to running costs, please contact David at david.patrick@yesagency.co.uk.

Amanda 'Wonder Woman' McDonald

Comic proportions

Tuesday 27th October 2015

So the "Amanda McDonald Farewell Tour 2015/2016" continues (look out for the merchandise stand at the back of our flat on the way out), we've got flowers in every room in the flat now and memories of pot pourri from my childhood wafts through the bathroom as there are even two bunches in there now (well, it'll make it easier to water them I suppose).

Amanda is on good form. Her appetite is back (thanks to another cancer perk, endless supplies of chocolates) and the stream of old friends visiting, bringing along old memories with them such as photos of Amanda from years gone by is proving to be the source of much amusement for all.

Another cancer perk today was delivered courtesy of Amanda's good friend Nada, who had arranged for one of Amanda's favourite comedian's Gina Yashere  to record a short video for Amanda. If you're reading this Gina, this was just the tonic... (that is, if the tonic consists of nearly choking Amanda to death on her cancer medication) 

Warning, this video contains disturbing images of fluffy dressing gowns.

The Long Goodbye

Tuesday 27th October 2015.

(written by Dean on behalf of Amanda)

Things seem to be gathering apace. I've updated my will, I've set my financial affairs in order and begun to see people, possibly for the last time.

Whilst this may appear deeply morbid, to me it's a way of just spending time with treasured friends as I always have.

My colleague has also arranged a fantastic extravaganza to say my goodbyes (more details on that coming soon...) and while I am reticent to share my fat hamster cheeks (thanks Dexamethasone) and bald head with everyone, I appreciate that needs must.

I feel completely comfortable with people feeling sad around me but I think it's been a really nice mix of tears and happiness. I could not feel more loved and supported and certainly have not been found wanting in the flower department with daily deliveries aplenty. I feel very special and very loved and for that I am very grateful.

The postman gradually despaired at the thought of the daily delivery to Flat 3

Pre-funeral funeral

Sunday 25th October 2015

Written by Dean on behalf of Amanda.

We visited my favourite church today, St Lawrence's at Biddulph. What was intended to be a loose invitation to those who were interested turned out to be a really special event.

It was so lovely to see so many family and friends there and Trevor, the vicar, did a wonderful job despite the complexities of managing a christening service at the same time and the difficulties he faced this week dealing with the funeral of 17 year old Jordan Burndred, who died recently when on holiday in Cyprus. I've said many times that I'm very very fortunate to be surrounded by friends. As much as it's unbearable to see the suffering of those around me, I am completely at peace.

St Lawrence's Church, Biddulph

I appreciate that it's harder for those that I love than it is for me. I want to make the most of all the time I have left & feel very lucky to have time to say my goodbyes properly.

There are a lot of challenges for my family and friends with coming to terms with this news. But as part of my faith, I believe there will be an answer.

Believe it or not, I actually really enjoyed today. There are not many people who get to experience a pre-funeral funeral. I often thought it would be better to have a funeral before you die so that you get to hear the nice things people say about you :)

It's very important to me that everyone supports each other when I'm gone. I know you all will. 

Tears on my pillows

Dean (Amanda's husband) here.

It's well after midnight as I type this out. A day of caring and putting Amanda to bed and with everything that's going on right now, it's a rare moment of solitude for me.

So here we are, two days after receiving the dreaded news.

What's been happening?

Sharing the news with family and friends (Amanda's MANY friends in particular)

Starting to spend even more time with the one I love.

We've got everything running to a timetable here. It's how Amanda wants it - of course it is. We have a diary system in place so Amanda can see her friends, some possibly for the last time. Her cancer chum who helped to set up this blog with Amanda visited Thursday and was devastated. Although we've only known her since early 2014 during which time she was undertaking her own battle with breast cancer, they've become best breast friends.. She says the following to me "I don't understand it Dean. She can't die. She just can't" I can't answer that. For someone with little faith, my rational side says it's just Amanda's turn. But when you consider she's never drunk, smoked, always looked after herself and eats healthily, some invisible force hasn't half shoved her in the back leaving her exposed. And that, my friends, is simply not fair.

During Friday 23rd October, we awash with a flurry of deliveries. So many flowers now that we're charging £5 an admission into our newly created botanical gardens. I'm dealing with so many requests to see Amanda, messages from complete strangers who have been compelled by the unbelievable storylines in our very own soap opera in the last two years ("It's unbelievable, no one would ever write THAT....")

And chocolates. so many chocolates. On one hand, it'll keep me happy for the next three years...although I would rather share them with someone very special alongside me. On the other hand, with Amanda's increasingly fragile appetite, it's a cruel, cruel torture.

Our contact from the very renowned local hospice Dougie Mac arrived today and immediately went about her work in a compassionate but also very efficient way (Amanda approves of efficiency). There's such as stigma associated with a cancer hospice, they provide so much more, such as supportive care for families and carers, something we'll learn to lean on so much in future months. Within  hours of arrival at our flat, Davina (our contact) had already arranged for a wheelchair to be made available so I can take Amanda out for assisted walks while she deals with her weakness (please don't be alarmed at this 'weakness' - she hasn't eaten for days and as a concession today, she's resumed taking the Dexamethasone steroid which should ease some issues affecting her head and kickstart her appetite). She also arranged for our prescription remotely so we didn't have to wait for hours for a GP. She covered the services provided, including various facilities available to assist Amanda, such as various therapies, treatments and the like. It sounds like a home from home. We did have to laugh at the constant interruptions of flowers and chocolate deliveries arriving during her 150 minute stay. She also tells us we're able to claim for a Personal independence Payment of £80+ per week to assist with things.

It's not been easy since Wednesday. There have been many tears, including a three way hug waterfall between Amanda's dad, Amanda and myself. I've found my outpouring of tears a relief to be honest. I've held back far too much over the years but this is something else. (Sorry to the Doctor at Trent Vale Medical Practice who I broke down in front of today, sorry to Cheryl who I broke down in front of today, sorry to Davina from Dougie Mac....you get the drift.) I managed to get to my mum and dad's briefly tonight. Mum has lost two stones in the last 6 weeks and not well (tests next week) and my dad is still recovering from her hip operation. I don't know what we were talking about tonight when i was there. It was something innocuous and all of a sudden, the waterworks fell. 

This is what happened after I wrung my handkerchief out to dry tonight...

Haven't seen my dad cry for such a long time, and it's heartbreaking for me to see him like this, especially with his Parkinson's and hip condition making him feel so helpless. I will take Amanda round to see them when she's fit to do so.

And then there's my darling wife. We've cuddled, we've laughed, we've cried, we've cried some more, we've laughed at messaged from people we've never met thinking "Who are they", we've had flowers from people whose names have been misprinted on the attached labels so had fun guessing who they should have been with. We've held hands in bed, we've cried for absolutely no reason whatsoever when talking about the most silly things. The things that really set me off though are when she lays her head on my shoulder. I'm lying there within inches of the evil cancer lurking within her skull, completely disabled and helpless as I can't do anything about it. We have shiny pillow material and the tears fall and echo out loud as they hit the surface. She's been saying she's dying for quite some time now. I was of the opinion that until we're told medically there's no further chance, then that's the path I will take. that path was blocked off on Wednesday.

Amanda is struggling with texting and her ability to type. I've already had her dictating her blog to me and texting on her behalf from her phone. I've got her passwords to various accounts as she has difficulty remembering these now. I'm hoping that the resumption of dexamethasone  may improve things, although we were told that things would decline. I don't want this yet, not to my angel.

Amanda has also arranged for her financial advisor to call around, Like it or not, we have to start the process of approaching the companies who own our policies to start the process of calling our monies in. Also we're having a solicitor around next week to sort out an updated will. I'd much rather invite round a Vietnamese Pot Bellied Pig for some naked wrestling to be honest. It's all grown up stuff and despite being grown up, we shouldn't be doing this for at least 20 years.

Can I do this? Do I have the strength to do this? I don't know, but I'll do whatever i can to make Amanda's time with me as comfortable with others.

I am aware of the outpouring (and 'pouring' being the appropriate word for many of you shedding tears) on my own Facebook page. While i'm unable to respond to all your comments, observations and fantastic photographic memories that you have been sharing - after all - my time with my wife is very important right now - we are enjoying them.

I'll continue to try and give an insight to what we're going through where time allows going forwards. It won't be pretty, but it's not really supposed to be, is it?

When Hope Fades

Hello everyone, it's Debbie here. The other half of the Amanda and Deb team.

I haven't posted on here since May, when Amanda was given the first diagnosis that her breast cancer had spread and she had a brain tumour. I haven't felt that I could give any input to this blog after Amanda's diagnosis. Amanda and her husband Dean have done an amazing job and kept everyone informed of Amanda's health since then.

As anybody reading this will know, Amanda now hasn't got long to live and to say that I'm devastated would be an under-statement. She has been the best thing to come out of this whole cancer ordeal. I'm heart broken that she is going to be taken from me so soon. Amanda has made me promise to keep this blog going when she's gone and I'm going to try to carry out her request.

As most people who know who read this blog, Amanda and I met on the chemo ward, on my birthday, when I was having my second chemotherapy and Amanda her fourth.
They say that people come into our lives for a reason and I do believe that this is true.
Amanda and I became firm friends from that day and our friendship has grown from strength to strength. She is one classy, strong, generous, selfless lady and one that I am privileged to call my friend. We have gained strength from each other from the day we met and learned from each others attributes. I can't imagine how I would have got through my treatment without her by my side.

We only live literally 5 minutes away from each other and we have always been there for one another, whether by phone, text or meeting up. We have shared many worries and fears that nobody else would understand unless they have been through a cancer diagnosis.
I can't imagine my life without Amanda in it.

I'm currently feeling a mixture of emotions, extremely sad to the point of feeling totally devastated, disbelief, denial, extremely angry and for the first time ever, a great big WHY??
Why has this happened to such an amazing, lovely lady? Why have Amanda's parents had the heartache of losing one daughter and now got to face losing their remaining daughter?
Incredible as she is, Amanda still has her faith and is at peace with her diagnosis and believes that she will be moving on to somewhere better and I really hope she does.

We have had many tears and also laughter. Our hopes and dreams have all but faded during the last couple of days. We have always joked that we would have adjoining rooms in a nursing home in 30 years time and look back and say 'can you remember when we had breast cancer'. We have now had this dream shattered but have now decided that we will make more plans when I join her on 'the other side'.

Tears are falling while I'm writing this post as I still can't believe that I have to prepare myself for losing my very dear friend. Amanda you have enriched my life for the better.
Your grace, patience, courage, even humour throughout your ordeal, especially the last 5 months, well I know we don't like to use the word 'inspiration' but I'm going to annoy you this one time and say that you truly are inspirational to everyone who knows you.

I love you friend. Part of me will go with you and my life will never be the same without you.

Debbie

Signing out

This is a bittersweet blog post for me.

On the one hand, I feel relieved that it is soon to be over (if you missed the news, click here) but on the other hand, it's devastating to imagine leaving those behind that I love.

I think it's harder for those who are going to be left behind than me. I feel very fortunate and blessed to have incredible parents, an amazing husband and fantastic friends.

I think my time is perhaps a little too short but I wouldn't change it for the world.

It's very difficult to understand why my parents lost another daughter and why Dean has to endure this, but it's not for us to understand. I would much rather have had a short time with these amazing people than a lacklustre life.

I hope that within the lifetime of my close friends and family, there will be a cure for cancer, particularly my own triple negative breast cancer.

I hope that you'll all remember me fondly and I'm grateful for all of the opportunities that I have had.

Although this won't be my last blog (I hope), I would like for everyone to support my parents and Dean as they're going to need it.

Amanda.

PS If anyone sends me a positive vibe...

Knocking on heaven's door

**Wife update**

We're absolutely devastated to share the following update with you.
 
We had our consultation with the oncologist yesterday who advised that despite the strongest possible radiation treatment, the cancer within Amanda's brain is still there and unable to be treated further. There's a remote possibility that the Cyber Knife treatment that I detailed in previous "wife updates" could zap these away, but Amanda's case has already been referred over to Birmingham twice with no response. A further referral is being made but they will not carry out the procedure if there is no merit and our oncologist has more or less confirmed that it would be unrealistic to pin any hope on it being the miracle solution to the situation. Put it this way, when the oncologist gives the go ahead to process paperwork to access life assurance policies, you know it's not a good sign.

Amanda is dying - she has a number of months to live. 

What we can expect to see over the next few months is a gradual deterioration in Amanda's condition to the stage where she's going to be unaware of what is going on around her. She's already having problems using her mobile phone and TV remote control, and her ability to say more than 10 words in a sentence is impaired too.

Last night was tough. We lay in bed and cuddled, cried, laughed, administered Amanda some morphine and then she slept, holding my hand. Amanda's mum and dad have taken it hard to (for those with faith, please say a pray for them too). 

The palliative care team will be here from tomorrow so we can start to sort out ongoing arrangements.

So, a few requests at this stage. Excuse the efficiency and planned style of this - it's what Amanda would have wanted.

1)This is to those many friends of Amanda who would like to see her. She would like to see as many of you as possible to say her goodbyes. I'm going to try and manage a diary for this so if you wish to see Amanda, please message me via Facebook. (or if you're reading the blog, please email me deanbromley111@hotmail.com)

2) I'd love if all those reading this who knew Amanda could send us BY POST your favourite memories of your times with Amanda. Please post these (Old school, i know) to me:
Dean
Flat 3 
Mill Court
Stoke-on- Trent 
ST4 8FE

It would be lovely to share as many of these with her. Could her friends please share this with as many people who may know Amanda on Facebook as possible as well as telling them via text/phone call/Skype/email/Facebook Message whatever method you feel fit please.

We've received many messages already from our close friends who we've already shared this information with, and in some cases, those who have been through very similar situations. You know who you are, and I thank you very much for this.

The photo I have attached to this update was taken near our beloved Spanish home a month after Amanda had her triple negative breast cancer removed in December 2013, and just 5 days before starting a very gruelling chemotherapy course. It paints a vivid picture - the walk ahead into the unknown. 

This is an awful time for us. You can begin to understand now when we were reticent when seeing any comments to our posts wishing us positive thoughts. It's not quite that easy, unfortunately. 

Amanda has faith. I'm without faith. But I know that Amanda will keep a place for me 'up there'. Prayers may well be appropriate for many of you but cancer is clinically unresponsive to prayers.

My love, my life, my rock. 

Tears falling

Dean.

And the disappointment continues...

So, now I have two large pulmonary embolisms. Worrying? Yes. Life threatening? Yes. Under control now? Also, yes. If it wasn't for Dean's insistence on getting me to the GP (again) things could have been very different. So although I am struggling to breathe and even worse, cannot travel to Spain, I am still here. I would love it if my hair would grow back or I could cope with some of these unpleasant symptoms and side effects. I would love to spend Christmas on the roof in Spain instead of on the sofa. But then life doesn't always play ball. What I do know is that I am being carried though this by the love and support of my friends and family and I will get there...eventually.

Amanda

Never have the initials P.E. struck so much fear into mankind since schooldays

Tuesday 13th October

Following on from the tomfoolery of my post on the Nando's Facebook page earlier this evening (if you missed it, click here >>> https://goo.gl/ZwnA2U ) there's actually quite a bit of serious news to come out of today. Amanda actually had a restless night here took her ages to get to sleep due to various physical and psychological disturbances.

I spoke to the nursing team today who were dealing with Amanda during her neurological surgery who had Amanda's case notes from her hospitalisation with her pulmonary embolisms (P.E.'s) this weekend just gone.

- Both of Amanda's P.E's were large. Very large actually. While I'm going to stop short of saying life threatening...well,...actually, head over to the NHS website to see that they are indeed life-threatening http://www.nhs.uk/…/pulmonary-embol…/Pages/Introduction.aspx Would love to hear from any of you guys out there who have your own experiences with these little brutes.

- As the treatment for P.E.'s is expected to be at least for 4 months, this means that the Cyber Knife surgery that Amanda was expected to have towards the end of October will now be put back. While we have no date on when this is likely to be, it's likely to be next year now. Whilst not ideal, this is unavoidable as Amanda needs to recover from the blood clot treatment.

- We're back in a period of uncertainty due to the Cyber Knife cancellation. With the onset of the last diagnosis of cancer so quickly, what's to stop it from happening again? We'll be seeing the oncology consultant next week for further clarification on this and to find out maybe if a further scan will take place to take into account the delay with the Cyber Knife treatment.

- Somewhat predictably, due to the ongoing treatment for a very serious clot(s), the medical opinion is that Amanda shouldn't attempt to fly anywhere, so recuperation in Spain via plane is not possible. We may be able to look into driving, but it's dependent on a lot of factors, which we will consider.

So we're back in a period of uncertainty. Without the Cyber Knife procedure, there's going to be that uncertainty for the time being on if or when the secondary breast cancer on the brain will return. Next Wednesday's appointment suddenly becomes quite important all of a sudden as we need the reassurance that we'll be looked after. One of the things throughout the last two years is that no matter how mundane or insignificant a sickness symptom arises, sometimes you feel like you're being over sensitive in contacting the health care professions - a little like the 'boy who cried wolf'. However, without doing this on three times so far, I've probably saved Amanda's life.

Home again

Monday 12th October

You may have more questions than answers by the time you've read tonight's installment.
Firstly...if you're not aware of what has happened since Friday 9th October, catch up on her blog or none of this will make sense:
Friday and early Saturday- http://goo.gl/dP0zwi
Late Saturday & Sunday http://goo.gl/VG5v2U

Amanda came home this evening. She's not well, not well at all.

1) her blood clots are being treated by a blood thinning injection. This is administered via a needle to the stomach once daily. For the next four weeks, a district nurse will come round daily to administer this, after which Amanda will need to do this herself. The doctorate at the hospital say this will be for 4 months at least, as this is the length of time at least it will take to break down both blood clots. The term used was "indefinitely" so there is a possibility this will go on for months, maybe years.

2) This is the mystifying one - Amanda's abdomen pain. The doctorate won't be doing a further CT scan has it has been such a short time since her last one. Further CT scanning may cause Amanda more harm than good but the doctorate are unable to say for sure what is the cause. They think it is likely to be related to the lung, after all the lung is a big organ which reaches down towards the area where the pain radiates to. So although Amanda is racked with pain, they are unable to administer a treatment at the hospital any more. Her pain management regime will now include Oramorph (morphine) as this has been effective will Amanda was in hospital over the weekend, on top of all her other medication including the medication to prevent her seizures.

3) We've been referred for palliative care. There's more about palliative care services supplied by our local hospital here: http://www.uhnm.nhs.uk/OurServices/pages/PalliativeCare.aspx This should at least address the issues of pain management in conjunction with the medication regime that Amanda is on going forwards.

So, in summary. Amanda is not well at all, but she's home, she's got the heating on, she's cheering herself up by watching last week's "Stand Up For Cancer Gogglebox"...cue the tears if you watched it.

The breathlessness issues that were the main reason we got Amanda into hospital last week have been addressed, albeit there's a long road of condition management associated with reducing the blood clots on her lung now. We know when to try and administer the pain relief (in anticipation of Amanda undertaking anything like standing up, moving around etc) Hopefully she'll now be given the chance to rest up and recover from this latest curveball until our next round of hospital visits.

Anyway, onto this miracle cure I've heard about....

Ultrasound

Saturday 10th October
Not one to do things by half, Amanda not only had one blood clot in her lungs. No sir. She had 2. If you missed the lead up to this revelation, read my blog update from Friday 9th october: http://ukbreastcancertips.blogspot.co.uk/2015/10/pain-in-insert-any-area-of-amandas-body.html
So these blood clots, or actually - Pulmonary embolisms as Ryan Gosling kindly demonstrates in the photo - which is a blockage in the pulmonary artery, the blood vessel that carries blood from the heart to the lungs - are potentially life threatening. There's more of that over on the NHS website. It's easy to say now, but Amanda was displaying most of the side effects listed here is some form or other >>> http://www.nhs.uk/…/pulmonary-embol…/Pages/Introduction.aspx Amanda is now on injections of blood thinning medication which should break up the blood clots and then she should be able to take antibiotics after this initial stage is complete to banish them for good.

She's had a restful day, punctuated by the ongoing mysterious abdominal pains for which she will have an ultrasound.(No, there's no baby involved.) The medical team say it could be associated with he blood clots but it could also be something else, like kidney stones. She won't have the scan until Sunday at last now, so she'll be in hospital at very least overnight and maybe into next week.

By the way, if you missed my 'good deed for the day' video earlier, head over here  >>> https://www.facebook.com/dean.bromley/videos/10153621194135185/?l=3425821413753987217

Sunday 11th October

Amanda didn't have the best of nights or Sunday mornings. I'll spare the details but it's unpleasant. Having negotiated a tiresome but necessary 30 minutes phone call for my parents to sort out their non-functioning broadband first thing (4 calls over the past 3 weeks with Sky and the issue is still not resolved but close now at least...), I got up to the hospital late morning and sat with Amanda while she fell in and out of a troubled sleep. She was taken down for an ultrasound scan on her abdomen early in the afternoon, and I'm so familiar with this well trodden route we've taken to that area of the hospital over the last fe months that I ended up bailing out the porter who nearly took a wrong turn when we headed back to the ward afterwards. The ultrascan itself involved smearing a scanner from Tesco self service area with some toxic looking gel which is similar to the stuff I used to smear on my hair to achieve wet-hair look back in the 90s. This took around 10-15 minutes, and uncovered nothing serious in the kidneys or liver area, but because the scanner didn't get deep down with imaging, Amanda will need a further Ct scan on her abdomen, looking likely to be on Monday. This will be her 6th CT scan in a little over5 months. Let that sink in for a moment

A few things to come out of this.
1 - Don't try and scan a can of baked beans with an ultrasound scanner, it won't work
2 - Don't try and smear the gel used for ultrasound scanner use over your head, especially if you don't have any hair, as you'll look a tit.
3 - The stabbing pain that only a loved one can feel when they ache for their loved one. The guy administering the scan asked Amanda for a brief update on her condition. Such is the effect of the medication and operations on Amanda's brain is that she can't get her words together, gets so confused and frightened, and she has to look in my direction in a way that I've become familiar. She's so frustrated that she needs me to to the talking for her. We both hope this comes to pass as time goes on.

So Amanda is on blood thinning medication injected into her stomach once daily to treat her 2 blood clots on her lungs in addition to the other medication for her ongoing medical treatment. We're having a "Lloyds Pharmacy" sign placed above our door tomorrow to signify how much medication we're having to administer right now.

She remains in hospital tonight, in the ironically named "short stay" unit, this is now her third night in hospital. I believe tomorrow will be a day of action once the weekday medical brains are back at work, deciding on where Amanda will be referred to next within the system, be it back within the umbrella of the oncology team or elsewhere.

In other news, still much work to be with the standards within the NHS signwriting team. Come on NHS, make your mind up - is it capital "V" or small "v" below? And should it be "bed" or "beds"? Answers on a postcard to "NHS, UK" please.

Pain in the (insert any area of Amanda's body here)

Saturday 10th October 2015

Brief "copy and paste" post update below of yet more GP and, as it turns out, yet another overnight hospital stay.

Over the last few days, Amanda has becoming breathless ever so easily. Getting up and walking the very short distance between our bedroom and living room is a challenge like no other and she's been susceptible to short agonising bursts of pain around the upper hip area on the right hand side of her body too. She's pretty much been housebound all week too, so something quite wasn't right.

I've copied the below from my Facebook post updates.

Friday 9th October

Amanda updated her blog earlier this morning whilst in some considerable pain. which you can read here http://ukbreastcancertips.blogspot.co.uk/?m=1 As a result of the breathlessness & pains Amanda described in the blog, we went to visit her GP this afternoon who felt that it would be best to get an xray arranged given Amanda's rather colourful recent medical history. As you can see from the parked trolleys in the corridor awaiting triage in my photo below, it's rather busy here this evening and the staff are working their hardest to deal with this. It's heartbreaking to hear the elderly cry out in pain. We have been fortunate enough to escape most of the queue and we're currently awaiting the xrays. It must be cold, Amanda has 4 blankets wrapped round her. I'll try and update tomorrow.

Saturday 10th October

Amanda was visited by one of the doctors in A&E at 10pm last night and was sent off for xrays promptly. Tests results for fluid on the lungs came back negative, and her white blood cell count was on the low side so Amanda was sent off for a CT scan at midnight Most people go through their whole lives without one - this was Amanda's 5th since May). She was then moved out to the medical ward for overnight observation. 

Amanda was told in the early hours that she had a clot on her lung. We're waiting for the doctorate to do their morning rounds to find out more info but she'll be in hospital for the rest of today at the very least. We haven't got a clue what's causing the pain above her hip, it could be related to the clot. It took some liquid morphine to eventually knock her out at 5am this morning. She's very snug in her new fleecy winter Pj's and I've nicked her morning toast. 

In other news, spelling on NHS notices is still a major cause for concern. 

If you wanted more timely updated, you can follow me on my Facebook profile here: https://www.facebook.com/dean.bromley

Symptoms run-down

Being ill has become increasingly tedious. Here's a symptoms run-down for those who thought they were having a bad day...

I walk like an old person and have to negotiate complex things like going to the loo in stages.
I have no hair and a huge gash in the back of my head.
My cheeks are enormous and show little sign of abating.
Breathing is very difficult and keeps me awake at night.
I have an odd but incredibly painful side which makes me cry out. It also flickers constantly like a jumping bean.
My chest is painful and of course makes me worry about something more sinister.
I have a migraine most days.
I am so tired that I can no longer leave the house; even the end of the street is too difficult.

So that's where we are. I would love to meet friends for dinner, watch the latest blockbuster and complain about the minutiae of life. I would love to be just normally 'tired', but cancer chooses its own path.

I am hoping that all of this is about recovery rather than illness and I am counting down the days to Gamma Knife surgery so that my treatment will be over once and for all.

Thanks to everyone for your support, best wishes, fantastic presents and texts. I may not reply but I appreciate them more than you will ever know.

Amanda

Why?

Yesterday I was devastated to read about the death of Donna Grindy. http://www.stokesentinel.co.uk/Tributes-paid-Stoke-businesswoman-Donna-Grindy/story-27910024-detail/story.html

We were in hospital together for four nights only a month ago. She, like so many other young women, experienced a recurrence of her breast cancer and her funeral is this week. I can't even imagine how her family must be feeling. Breast cancer is just so arbitrary and indiscriminate. Donna was not even 40, had a thriving business, a lovely husband and young children. It's devastating.

In this context the language of cancer is difficult for me to stomach. If I get through this, it won't be a 'battle' I have 'won' that others have 'lost'. It won't be due to a diet of blueberries or spirulina. It won't be due to my positivity or strength. It will be due to luck. I'm not out of the woods yet by any means. The aggressive nature of Triple Negative Breast Cancer means that it will always be one step ahead of me. I won't be 'fighting' it. I will put my life in the hands of surgeons once again and pray for a positive outcome. I also pray for Donna's family as they face such challenging times ahead.

Amanda