Brain surgery - Albaneasy as 1, 2, 3...

Well, the session with Ms Albanese was a good one. She was very pleased with my progress and alarmed by my cheeks in equal measure; she will be speaking to my oncologist about possibly reducing the steroid dosage (hurrah!). I thanked her whole-heartedly for what she has done for me, which, there are no two ways about it, saved my life. It is amazing to think that only a month ago, my life and cognitive function were in her hands. She graciously said that we had done it together and that I had played a great part in my recovery. However, I can't help but feel that her contribution was somewhat greater than mine.

She said that she hoped to never see me again, but that if she did, there is radio surgery for smaller lesions and cancerous brain tumours. Makes interesting reading if you want to take a look.

So, onto the next brain blast...

Amanda

I suspect brain surgery is more complex than this

Let's go round again

On the way to the hospital yesterday for my first dose of radiotherapy, I was reminded by Dean that we were doing the exact same thing this time last year. It was a tough reminder of how quickly this aggressive cancer has come back and invaded my life as well as my body. Once my recovery is complete, I'm going to have to work hard on a mindset that on the one hand optimistically assumes that this is completely over, whilst also lives for the day and factors out the irrelevant stuff. I know I'm meant to be giving the tips but would appreciate yours on this...

The radiotherapy itself was fine. I had to squeeze my new super-sized face into a mask that was developed before the bloat-fest, so this was uncomfortable but otherwise it was plain sailing. One of the radiographers man-handled me into position and the other asked me jokingly if my head was still on under the mask which made me smile. The session itself was very brief - only ten minutes and unlike last time, I could see bright blue laser beams through my closed eyes, but it's not physically demanding at all. I was only allowed to go home once they knew Dean was there (he was doing the hospital challenge which involves trying to find a car parking space) and I was already feeling physically depleted so this was exacerbated by the treatment. Once home I went for my obligatory walk and then completely collapsed. I was absolutely exhausted and developed a hideous headache/migraine that wiped me out for the rest of the day. I went to bed and managed to sleep and woke up several times in the night. This morning I'm feeling a lot better and have three appointments today - one with my neuro-surgeon, one with my acupuncturist and one with radiotherapy. I'm on the last lap though, so before I know it I'll be on the other side, rejoining you all in the celebration of life's many glorious little things...

Amanda

Well obviously

Guess who's back

One of the fun things about cancer treatment is the long lasting effects on your body's natural functions. So, as of January I have been going through the menopause after last year's chemo. This doesn't really help the migraine situation and before the return of the cancer, I was having over twenty migraines every month. The high dosage steroids for the cancerous tumour had been giving me some welcome respite from the migraines until this week. What seems to have happened is that the hormonal boost plus the pressure of the facial swelling has reactivated my migraines in a big way. I've taken anti-migraine medication every day this week and thought I'd try to have a day off to give my body a break. Big mistake. A killer migraine along with the usual chest pain plus severe facial swelling welcomed me in the early hours of this morning. It's been tough going. So, what to do...I think I need to concentrate on the cancer treatment and take what I need to manage the migraines, concentrating on dealing with that once this is all over. Radiotherapy starts tomorrow, and as soon as it starts, the closer it is to being over. Bring it on!

Amanda

You are allowed an off day

Over the last couple of days I have found this whole cancer lark a bit of a strain. I can't quite decide whether I look or feel worse. The bloating is quite incredible and my face is so distorted that Dean is complimenting me on the storage potential of my cheeks. After I eat, the only possible form of movement is a waddle, and even I laugh at my feeble efforts to make myself look OK by continuing to apply make-up to distract from the Violet Beauregarde look I have developed. Having spoken to the consultants, I am stuck with this for the next month, but it is important. The steroids are reducing post-surgery swelling on the brain and will help minimise any adverse effects from the radiotherapy. So, it's pretty crucial. It will also reduce quickly once the treatment is over and I will return back to normal (albeit bald) within a short period. I have decided though that it is absolutely OK to have a miserable day here and there. No-one expects you to be on top form all the time, and in fact, it probably wouldn't be healthy anyway. Just steer clear of blueberries.

Amanda

Even the best lipstick doesn't offset this look

Hamster face and football knees - the joys of steroids

Well I'm not going to lie, it's been a challenging few days. I've still been managing to walk and do yoga daily, but it has been a Herculean endeavour at times. The steroids, whilst doing an incredible job of reducing the swelling on my brain, are doing the opposite everywhere else. My face has swollen up to create incredible hamster cheeks that are so puffy that my eyes have shrunk and my face feels on the verge of bursting. My knees are mostly on fire, generally in the morning, but easing off throughout the day, and my chest is painful periodically. But I'm seeing my amazing oncology surgeon on Tuesday, the incredibly talented and highly regarded, Ms Albanese, so all being well, I can reduce the steroids before the radiotherapy begins. My tips? Try to persevere with the exercise; don't be so vain about the bloat (I am WAY too shallow) and try some herbal tablets - I'm giving an Indian treatment a go, so I'll let you know how I get on.

Amanda

Me, this morning

It's only hair

So yesterday I had my mask fitted for radiotherapy. It's a space-age type monstrosity that covers your entire face and has the texture of rubber. It has little markers throughout that help the radiotherapists to aim the rays in exactly the same place each time. The treatment takes place over three weeks and culminates in some super doses to the area where the tumour was (it's great that this is in the past tense now). There are a selection of side effects as detailed in an earlier blog, but the one side effect that there was differing views on is the impact on my hair. The oncologist said that it would all definitely go but would definitely come back at some point. The radiologist said it may thin, would more than likely go completely and may not come back and the person doing the scan said that I would definitely lose it all but I would definitely get it back and that I could get a National Health wig (joy of joys). So whilst the regrowth of this hideous untameable mop has been frustrating, and I will end up going through the whole tiresome process again, my advice is to just accept and go with it. There are many, many people who would be thrilled to have such a small problem as regrowing their hair. And who knows...maybe as my Mum insists, I will finally be ginger.

Amanda

Recovering from brain surgery

As Dean has documented, there are some learnings that need to be made after brain surgery. Learning to write and how to put on underwear were the two most frightening. However, I am making a really good recovery. I feel like a 90 year old woman has done a body swap with me, and sometimes I just have to sleep like the dead, but I'm pretty much in good shape considering I had my head opened only a couple of weeks ago. So here are my tips for recovering from brain surgery:

• If you need to sleep, then sleep, you don't need to prove anything to anyone, just listen to your body
• Keep up your fitness levels - I have been walking every day, sometimes for a couple of blocks, other times for several miles; I really believe that physical fitness will aid my recovery
• Test yourself each day - try reading, writing, walking, remembering, using the remote control - you'll find it comes back quickly
• Eat well; I have been eating a mountain of fruit every morning and lots of delicious, healthy food (plus lots of delicious, unhealthy food, because, hey, why not? I've just had cancer for the second time in eighteen months, that has to be a free pass)
• Really relax: pass on any responsibilities to others and concentrate on getting well
• Don't focus on the future, just concentrate on each day and doing what feels right
• Read good books, rest and build up slowly 

Amanda

Count your blessings

Well it's been a challenging whirlwind of a few weeks, but I have been extraordinarily lucky for many, many reasons:

• I have the most incredible husband who looks after me with such kindness and good humour that I am overwhelmed by how lucky I am
• My parents are utterly amazing - my Dad has been by my side through every up and down, sharing my fears, hopes and disappointments whilst my Mum has cooked me something amazing every day
• I have a spectacular group of friends who are just willing me to be OK, visiting, texting positive stuff, sending wonderful presents and flowers and just being all-round fantastic
• The barrage of support via social media gives you a real charge of energy and positivity, knowing that you have such an incredible support network
• My business partner has been superbly kind and supportive, giving me space to recover and rebuild
• I live in the most beautiful location for walking, and whilst some days it's been a gargantuan challenge to walk round the block, I've done it and found it a really uplifting experience
• My church friends have prayed their hearts out non-stop ever since I received the news, and clearly, since was found quickly and successfully removed, then God was definitely listening

So, under the circumstances, I am very grateful. 

My top tip to share would be to take a minute later and just count your blessings too. Life can be short and can blind-side you sometimes. So sit back and think of all the wonderful things you enjoy every day. Think of normality in all its fabulousness. If you have loved ones nearby, then think about how much they mean to you. And, most of all, if you have your health, cherish it, as it really is the most tremendous blessing.

Amanda

Déjà vu

Wednesday 10th June

We had an appointment today to see our oncologist consultant who we have a lot of respect for. Firstly he commented on how surprised he was at the rapid rate of recovery Amanda had made from her tumour removal just 10 days prior to this appointment. He did seem genuinely concerned for Amanda’s wellbeing too before going into the outlining the next steps with Amanda’s treatment.

This is what we know:

• Indications suggest that the tumour is now fully removed from Amanda’s brain.
• He described the brain as a sanctuary for cancers, meaning that not everything may show up on scans, so the next part of the treatment plan with be a 15 day course of radiotherapy with a double dose in the area where the cancer was found. This will take place w/c 29th June on weekdays. 
• The consequences of the administration of radiotherapy will mean that Amanda will lose her hair again (second time in 18 months). This should be a temporary effect and it will grow again when radiotherapy is completed.
• The radiotherapy will be administered via the area around the eyes and there’s a risk of cataracts forming, which could be removed if they do appear.
• Brain functionality may be impaired as a result of the radiotherapy being administered, which could be short or long term. 
• Continued tiredness for some weeks or months as a result of the recent operation.

Consultant's 'statement of health professional

The consultant expressed his view that Amanda should be able to live a normal life once the treatment has been completed, and he’s even suggested Amanda will be fit to travel back to our holiday home in Spain early in August once the treatment has been completed.

While some of the above is difficult to accept, such as the loss of hair again, Amanda’s relief at not having to go through a treatment of chemotherapy again was immeasurable. Short term steps now involve Amanda relaxing and enjoying her time with family and friends prior to radiotherapy commencing, then the next goals of completing treatment then getting the first plane over to Spain that she possibly can. Amanda had a 'miserable day' yesterday as it was an emotional, draining day both mentally and physically. She's allowed some down time, isn't she?

Avoid the baby changing facilities at the Royal Stoke Hospital by all accounts – shooting babies is encouraged if the below photograph is to go by. 

Dean

Head girl

Tuesday 9th June

I thought I would share some post-operation photographs to show what Amanda's surgery consisted of.

Two days after the operation (3rd June), I took this one at the back of Amanda's head. Amanda was very coy about me taking this as she wasn't too keen or interested on how it looked. As you can see, the protective dressing failed on the "protective" part of the description.

The other photographs below were taken on Monday 8th June after her protective dressing was removed. The first one here is of the swelling caused post-operation that has now peaked. It's a bit too high for a love bite in case you were wondering.

The next two beauties were taken directly above Amanda's skull and shows fairly clearly just how many staples were required post-op. Amanda's been told she can't wash her hair for a few days.

There's a story behind the next one. Throughout chemo during her battle with breast cancer last year, Amanda faced increasingly difficult times when being injected to administer the chemo, leading to all manner of issues with collapsed veins. There were similar issues this time too. Note the bruising around the wrist and the 'monster' bruise on the forearm.

The final one below - not our doing (and not Amanda by the way), but you have to see the funny side of the removal of a brain tumour. Find out more about this photo here: www.mirror.co.uk/news/weird-news/made-everyone-smile-brave-cancer-5849146?ICID=FB_mirror_main

Dean

The Second Coming

Friday-Sunday 5th-7th June

Doing normal things, like normal adults do.

We went for a walk, held hands, chatted about plans for holidays, laughed, enjoyed the English summer sun. I even went out and ran 9.3km on Sunday morning. I haven't run that far since high school. That's a consequence of eating so many of Amanda's 'cancer chocolates' that she's been sent by well-wishers.

Monday 8th June

Morning: we visited Amanda's medical practice this morning. Firstly, she had something upwards of 40 staples removed from her skull just a week after the operation. he nurse who carried out this procedure was happy with how this horseshoe shaped wound had heeled in the week since the operation. We then had a face-to-face with the GP who had originally seen Amanda back at the end of April who had said we'd just monitor the situation. She was deeply apologetic...deeply. She'd said she'd discussed the case with several colleagues and from the symptoms Amanda was displaying, they would have done exactly the same. I'm not sure if we were supposed to feel comforted by this, Amanda did think she was sincerely apologetic and the GP was moved close to tears.

Afternoon - the phone call arrives. We're to visit the oncologist this coming Wednesday morning. We're told it's secondary breast cancer on the brain. Click here to find out more about what this is. Radiotherapy is required. We'll find out more on Wednesday.

We don't know what we're dealing with right now. We know that the cancer has been removed (again). The radiotherapy should blast it out (again).

More news to follow....still, we have enough flowers and chocolates to make everything right, right? 

Dean

Easy as ABC...

Thursday 4th June 2015

Amanda woke up to some severe head pains today, which shifted within a couple of hours. She had a couple of "episodes" today which are worth noting:

• The Sky remote control - can be something of a logistical minefield at the best of times but Amanda forgot how to press the rewind button. A basic function. She couldn't figure out how to do it. I showed her. Problem solved.
• Amanda forgot how to put her underwear on. I found it completely fascinating and terrifying at the same time. Think about it. It's something we take for granted. Leg in one hole, leg in the other hole, pull up to waist. Job done. However, this seemingly simple task caused so much frustration as she couldn't remember it. It was a case of demonstrating to her how to do it (she solved this task quite quickly...but showing her how to put a bra on was a step too far for myself :) 

We went for a walk around our nearby gardens taking advantage of the first nice weather for a few weeks. Slowly does it, as Amanda tires quite quickly right now, but she did well to take the three mile circuit from home around the lake and gardens. We're quite lucky to have this so close to home, and we're lucky to have free passes to access the estate as our road where we live leads up to the estate goods entrance, so as a gesture of goodwill, they look after us.

Amanda became worried in the latter stages of the walk. She had a mental block about doubting her ability to read. As a Managing Director with a advertising creative agency, this caused concerns. When we returned home, she forced herself to sit down with a pen and book and remember how to read and write. It was terrifying. I gave her some space at this time (and that's one thing with both cancer-related situations we've experienced - if she wants the space, I give it to her now).

She called me into the living room 30 minutes later thrilled that she could remember. She'd written down the A-Z (missing one letter out) and tested herself with simple sentences. Again, reading for those who can is something we take for granted, but this was something else. 

So onwards we go. Still waiting for "THAT" phone call for the results of the post-op MRI scan. Still waiting to see what path we'll be following once "THAT" phone call materialises. In the meantime, the sun is out again today (Friday 5th), we'll take that for now, thanks.

Where's your head at?

Wednesday 3rd June 

Tuesday was a rough day - unbelievably bad. The memories of last year's post operation episodes of utter misery came sweeping back over in swathes of agony. Amanda reacted badly after I'd left her on Monday evening in the early hours of Tuesday morning (despite me being told otherwise when i'd called for an update on Tuesday morning). Will spare the details but it wasn't a good day.

Amanda had an MRI Tuesday morning too. No doubt to find out whether there was any trace of whatever it is. We still don't actually know what "it" is just yet. We're now playing the waiting game. More about that in a moment.
I didn't actually get to see much of Amanda on Tuesday. As she drifted in and out of anaesthetic sleep throughout the day, between bouts of...let's say unpleasantness...there wasn't actually a great deal I could do. I felt so helpless.

Wednesday morning - Amanda calls me quite early and the old spark is back, her voice has regained authority, she's slept off the worst of the effects. I visit the hospital within 30 minutes of her call. We're blessed to be within three miles of our health care provider. Now to try finding a car parking space onsite is another matter. Despite the granting of a concessionary car parking pass (yes, you have to pay to use the car park), demand far outstrips supply and there's plenty of uneasy car standoffs. I managed to get a space far quicker than yesterday's 45 minutes.

Amanda is looking tired but good. remarkable that this is 42 hours after major cranial surgery. We weren't sure what to expect hair wise - whether any would be removed to access her head for the operation. Thankfully, her hair is in place. She's sporting some pretty major metalwork in the form of pins which would keep a staple gun fully loaded for a while once they come out next week but she's looking good.

The consultants on the ward confirm she is well enough to leave today, just have to have the physio team walk her down the corridor to confirm she's fit enough to walk. Then we have to wait for the issuing of her medication from 11.30am....and wait....and wait....and wait...and wait....

We had a discharge letter to give to our doctor when Amanda has her staples removed from her head next week. It's littered with bad grammar. One section makes reference to a patient with a completely different name. (we're told that the people who drafted the letter were just testing that we were paying attention). I've joked with someone this evening that this letter looks like it's been written by someone who'd taken part in a "Take a child to work day" although a nine year old would wince at how bad the grammar is throughout this letter.

We waited so long, we were moved out of her room down to the discharge lounge. I detected a little bit of ice forming in hell before we were finally allowed to leave at 3.30pm. Even then, Amanda's medication hadn't been fully delivered. I returned to hospital later that evening to collect the outstanding supply of steroids, painkillers, anti-inflammatories. So there we have it. We're told to wait for a call now from the consultant which will define which path we are to take with this. "The Waiting Game" as a Facebook confidant puts it. I love a game as much as the next person but this is one I would gladly pass on and not participate in.

For now, we're enjoying the moment. I have my wife home, she's caught up watching Hollyoaks and enjoyed simple things. like a meal I'd sorted courtesy of the Tesco salad bar (other salad bars are available). Some major steps were overcome this week, but like a jockey in the Grand National, we're only part way through the circuit so far and plenty more (huge) hurdles to face.

Here's the front cover of a book I found in the day room in the neurological ward. OK, modelling for this kind of work is never going to be an easy job but... **Shudders**

Dean.

Flaming June

Monday 1st June

Amanda received her call to return to the hospital at 7.45am. There was a bed spare and all hope that the operation to remove whatever the black mass on her brain would take place today. (See blog entry 15th May.)

After hours of waiting, (including several hours in a treatment room which doubles up as a storage facility as there were no other rooms/beds available), at 2pm the porter came to collect Amanda. That was it. No dramatic build up...just that he had to deliver her to the theatre. Why is it called theatre anyway? OK granted there are lots of dramatic performances played out there but it's hardly entertaining?

The operation took just over three hours.

She enjoyed her first meal for 24 hours at 8pm. Nothing special - egg mayo sandwich, a fruit yoghurt and a cup of tea. Amanda doesn't normally eat or drink any of these but such was her hunger, it was the best meal she'd had in a long time.

Despite being drowsy, she was remarkably upbeat, grateful at whatever malevolent festering mass of badness that had darkened our lives this past three weeks was no more.

Apart from that, we know precious little else about what exactly the mass consists of just yet - that will come later.

For now, we'll enjoy the moment that Amanda was in very good spirits post-op. She'll remain on the Critical Care Unit under observation this evening which is purely routine. she hooked up to monitors checking her pulse and blood pressure, which are all amazingly good reading.

More to follow....

Dean