Tagged with brain tumour

Buying time

We found out yesterday that after 3 months of chemo hubby’s brain tumour has shrunk by 2mm. So far he’s had four doses of Avastin treatment, and was scanned after the 3rd, so this is very good news and means that treatment will continue for at least another 3 months. Three months where we don’t have to think about brain surgery, and where we can make the most of every waking moment.

We don’t yet know what’s happened to the largest spinal tumour, as the Avastin treatment is focusing on and being funded for the brain tumour only, but we’ll find out more in the new year after yet another fully body MRI scan. If the spinal tumour is still growing and the neurologist decides that it has to come out, hubby would have to stop chemo for a while to allow time for surgery and recovery, but we’ll cross that bridge when we come to it.

Hubby’s case has been described even by the NF2 team as complex. We don’t know why, but his seems to be an aggressive form of the condition. He has tumours in all of his limbs,  abdomen, face and scalp, as well as his brain and spine, and so has had to learn to live with pain and discomfort, as well as loss of function thanks to nerve damage and invasive surgery.

Whilst he tries to hide the pain, I know when it’s affecting him, and that makes me feel helpless. NF2 is not something you can take a pill for. There is no cure, and you don’t spontaneously recover from it.

We do know however that whilst it’s extremely rare, there are doctors who care passionately about helping those with the condition. They give NF2 sufferers hope, and we’re fortunate enough that in hubby’s case he’s had access to them from a young age. Sadly, some people are still being diagnosed in their forties and later, despite having presented symptoms for some time.

For now though, we feel as if we’ve bought some time. And as always, the first thing we talked about on getting home and sharing the news with loved ones was our next travel adventure. Travel insurance is ridiculously expensive if you are on chemo, but having wanted to explore Britain’s islands for a long time then this is not a big deal. If anything, it’s even more of an incentive for us to explore the UK’s nooks, crannies and wild places.

It’s probing time!

After being turned away from the second chemo dosing because hubby’s blood pressure was too high, we’d become model patients – sorting out meds for hypertension, and buying a fancy digital blood pressure monitor which we use daily. We’d had a blip last week when I’d had to call the triage emergency helpline because hubby had noticed about a teaspoon of blood on the tissue paper after going to the toilet, but they’d reassured us that given the severe constipation he’d had after the first dose, and that he’d had haemerrhoids earlier in the year, it was nothing major to worry about.

Knowing that his blood pressure had fallen to normal almost as soon as he’d started taking the pills, it was very frustrating to be sat in front of a temporary registrar oncologist before treatment number three, whilst he claimed that hubby’s blood pressure was still too high. Given that he’d just told him that he was going to perform a rectal examination to see if he could find any other causes for the previous bleed, no-one else was surprised that hubby’s blood pressure was elevated. Hubby later admitted that he’d had to stop himself laughing out loud at the oncologist’s announcement, because his first thought had been of the ‘probing time’ scene from the Simon Pegg and Nick Frost film about ‘Paul’ the alien. And yes, that’s one of his favourite films. ‘Under Siege’ and ‘The A-Team’ also top his list. Boy telly as I call it.

The oncologist seemed to be under the impression that a further delay in treatment wouldn’t matter, having obviously not read hubby’s file. We and the NF2 nurse however knew otherwise, and so I may have gone into what hubby now describes as ‘Scrappy Doo mode!’ Backed up by the NF2 nurse I demanded that the oncologist phone our GP and request the records that we’d submitted two weeks ago, all showing a much lower blood pressure; explained that hubby has a definite case of ‘white coat’ syndrome with his blood pressure; and that rectal examinations weren’t helping. Hubby just sat back thinking “I should have warned the poor bloke that she was Welsh!…”

Fortunately the examination confirmed that everything was ok down there, the oncologist decided to take our word for it with regards to blood pressure readings, and after helping hubby to calm down and breathe deeply, the final monitor reading fell within the required parameters. The oncologist assured us that he’d let hubby have treatment, and I almost cried with relief.

Once hooked up, we settled down for a gourmet picnic lunch, and got chatting to the lovely man and his wife in the next section. Unfortunately he was only diagnosed with NF2 two years ago in his early forties, and so it’s been one hell of a whirlwind for him and his family. Like hubby said, being bought up knowing what was coming made coping that much easier, and I knew what our future as a couple might hold from pretty much day one. To find out in your prime that you have a condition that will never get better, which may require lots of dangerous surgery, and may result in disabilities plural, is bloody hard.

That certainly doesn’t mean that we’ve found dealing with what’s happening to hubby easy – far from it, and it’s been a relief that support has come from often unexpected sources. NF2 is so rare that there just aren’t the support networks that there are for cancer and other conditions, so it can be quite a lonely place sometimes. Which is why we still make every effort to get out there and live the lives that we want to, to talk to people – often strangers, and to try and stay as optimistic as possible. Hugs however, are still always welcome 🙂

Lipseaking for the paramedic

Hubby had a seizure in the early hours last Saturday. We were spending the weekend with mum-and-dad-in-law at a holiday cottage in Monmouthshire, Wales and had arrived the previous afternoon. By 1am I was on the phone to the ambulance service, trying to direct them to a building in the middle of nowhere when I didn’t have the full address, or clear headedness to think about giving them a grid reference. Fortunately they were able to find us from the information I was able to provide, whilst the lovely man on the end of the phone looked at holiday cottage websites for the map and postcode.

I knew there was something wrong instantly. Hubby had had a seizure 20 months ago and whilst we were hoping it was a one off, I’ll never forget the noises he made. Because of damage to his throat and tongue made during and as a result of previous surgeries, he tends to snore quite badly. He also has difficulty swallowing, especially when he’s tired, and has to drink so much water to get the food down that he tends to fill up on this rather than actual solids. During the first seizure he’d made noises that sounded like he was desperately trying to draw breath, and amplified by the plastic valve in his throat this created a sound that’s extremely difficult to describe, but not forget.

Waking to this sound again, at least I knew what to expect when I turned on the light. Seeing someone you love so physically vulnerable and exposed is never easy though, no matter how many times you experience it. Fortunately mum-in-law is a retired nurse and on both occasions we’ve been lucky enough to be staying with her, so she didn’t panic when I roused her. After we put him in the recovery position she stood guard whilst I phoned for the ambulance and had to keep running up and down the stairs to give the paramedic a status update, whilst making sure I was there to greet him with a torch on the remote country road.

I felt a slight relief when those blue flashing lights appeared, and guilty that I never asked the paramedic his name. But we’ll never forget him. Faced with a deaf man in the post-ictal phase of a seizure, he didn’t bat an eyelid about having to use me and mum-in-law to speak to hubby. Hubby is normally a brilliant lip reader, but in a confused state and despite having a wife with a strong South Welsh accent, there was no way he was going to be able to understand lovely paramedic man, at least not today.

My heart sank a little when hubby wasn’t able to say where he was and what month we were in, but then relaxed when the paramedic asked me for details such as his birthday. Given that I could only respond “it’s the week after mine, if that helps,” I realised that under stress it was no surprise that hubby was finding it difficult to remember certain things. Thankfully mum-in-law saved the day and prevented me having to locate my own driving licence.

Satisfied that hubby was stable, especially when he started grabbing the paramedic’s wrist to see what the time was, and asking about the ambulance car, we unanimously agreed not to force him to go to the local hospital. After the last seizure he’d had to stay in a different hospital for 5 days because they had little experience of NF2. At one stage he’d threatened to escape, so to avoid a repeat we decided that we’d follow up with his medical team back up north. We don’t know what caused the seizure. It could be a case of several triggers coming together, it could be the brain tumour, it could be a combination of all these things, or it could be something else all together. We may never know.

What we do know is that I’ll be watching him like a hawk again for a little while. He’ll no doubt get fed up of me reminding him not to drink too much, to go to bed earlier, to wear a hat and sunscreen and drink lots of water in the sun, to eat regularly and to rest when he needs to. But that’s a small price to pay, and he assures me that he married me partly because he likes assertive women.

Sleep has gone out of the window again for me as I’m up and alert at the slightest change in his breathing pattern or usual snore. As I work for myself I can sleep during the day though, and we’re getting into a routine whereby he knows that he has to get to sleep by a certain time, and I feel relaxed come 5am and he’s ok. Cat napping works wonders, and I’ve always been able to get by on very little sleep. I may be cranky as hell mind, and eventually collapse, but I can function better than most.

More than anything, hubby is gutted that he won’t be able to drive again for a wee while. Driving and rallying is a passion of his. It gives him an independence which is highly valued when some might consider him disabled. Thanks to a disorganised DVLA it took him several months longer to get his licence back the first time, so now he’s dreading having to go through the same. Fortunately we’d changed the car a short while back and ‘Skyra’ – our little 4×4, runs like a dream. So I’m happy to chauffeur hubby, and put the car through her paces, whilst hubby clings on for dear life and wiggles his finger at the speedometer.

The day after the seizure, not surprisingly hubby did feel low. When he started talking about “giving up” I had to go elsewhere and have a little cry, because if he gives up, I give up. He is my world, and I will be there every step of the way for him. I can deal with things like this happening. We’re both tough cookies. We both go into warrior mode very easily, and over the years I’ve certainly earned my nickname – ‘Dragon’.

Fortunately his low mood passed, and we’re dealing with the uncertainty and difficulty of living with such a rare and complex condition as NF2, by doing what we do best – planning lots, and lots of adventures. We now have a list that covers all bases. Different places that we can go to, and different things we can do, depending on how tired hubby is between chemo doses,  and if and when he needs brain surgery. In our eyes some of the plans seem quite calm compared to our usual adventures, but other people are still likely to see them as quite extreme, and it’s this pushing the envelope that helps keep us sane. No one knows what the future holds, but we do know that we can live fully in the present. When life gives us lemons, we make margarita’s.