Shrinking tumours

Before hubby started chemo in August 2014 for one of his NF2 tumours – the one in his brain, we spent many an hour researching the side effects and prognosis. The general medical consensus was that Avastin stood a good enough chance of shrinking and then stabilising the brain tumour (schwanomma), but was unlikely to have an effect on the one in hubby’ spine.

After an MRI scan last week – one of the special ones where his head is wrapped up like an Egyptian mummy’s to stop the ABI device exploding out of his skull and making a bit of a mess, yesterday we were told that the spinal tumour has also shrunk a little! The brain tumour has as expected now stabilised rather than shrinking any further, but in the NF2 world stability is good. No scrap that, it’s bloody brilliant, because the alternative is major surgery, and we want to delay that as long as possible.

Normally a very optimistic person, even hubby is suprised that both tumours have shrunk. He’d been expecting to see no change in the spinal tumour at best, and likelier still to have to start talking surgery. So to come away with such good news has left us a little shell shocked to be honest. Despite always appearing cool, calm and collected, with not a care in the world, hubby has faced four lots of brain surgery so far, one of which saw the surgical team fighting to save his life when he developed a bleed on his brain stem. I hadn’t met him by this point, but I cannot imagine what that must have been like for mum and dad-in-law. Or for hubby, waking up unable to speak or eat because he’d been fitted with a trachy and breathing tube. It’s only down to his sheer bloody mindedness, and that of his parents, that he’s now able to eat normally. Admittedly sometimes there’s a bit of spluttering when he gets tired, and I have to try not to start performing the Heimlich maneuver as soon as he starts choking, but otherwise we enjoy our food.

The previous surgery was unavoidable because sadly NF2 tumours can still lead to an untimely end, and yes accidents happen in surgery, but knowing that he doesn’t have to go under the knife again anytime soon is such a relief. He’ll have another chemo dose in two weeks, and then as far as we know he’ll move on to four weekly doses, and they’ll scan him again in May. So between now and May we’re going to get busy planning our summer adventure. Something that involves lots of walking, wild swimming, and me freaking hubby out with my driving on the ‘wrong’ side of the road.

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 🙂

Big toes and tumours

Hubby, aka ‘Mr Magoo’, has another infection in the big toe on his right foot. This means that the Avastin treatment has to be delayed even further whilst the foot heals. Not an easy ask when the circulation in his legs is so impeded thanks to other NF2 tumours and previous surgeries that he can’t feel very much, and the right foot is always ice cold, whatever the weather.

We’re disappointed that despite a wait of four months now, and foot problems being one of many in his notes, that no one told us he’d have to ensure that he was toe infection free before the chemo could start; or that he’s still not been referred to a foot care specialist for long term care. So we’re taking matters into our own hands, and getting that much more assertive. This is an easy task for me – I got assertive years back! Less so for hubby who’s always worried about offending or upsetting others, more than ensuring that he receives the best possible care.

We have another appointment with our GP tomorrow to arrange a referral to a local foot care clinic, and won’t be leaving until that letter has at least been started, and his foot dressed properly. The neurologist and NF2 nurses that we saw yesterday at the John Radcliffe Hospital were appalled that hubby had been allowed to leave the doctor’s surgery that morning without a dressing, or the all important referral. We’ve gotten used to patching him up ourselves, but enough is enough.

They seemed sad too that despite hubby having had access to world class surgeons for tumour removal up in Manchester, that his all round care has been somewhat neglected. Until now, we’ve been the only ones considering the bigger picture, so for someone else to start asking questions has come as a welcome relief. Having the time and space to look at the latest scan results, and talk about how the NF2 is affecting him generally, made us feel more a part of our own lives, if that makes sense.

There were a few surprises of course – par for the course with NF2. No one had told us previously about the large tumour at the top of his lung, or that the one in his abdomen is the size of a honeydew melon. The growth in the largest brain and spinal tumours has also been more significant than we were led to belief.

On a more positive note, they mentioned possibly being able to help him with his eye problems – he can’t close his eyes properly because of nerve damage, and has to use drops almost constantly to keep them moist. They also provided us with all of their contact details and strict instructions to contact them at any time with any query. So we’ve feeling the love a lot more, and less like we’re out on a limb.

These last few months have been difficult because there are so few support networks for those with NF2 and their families. Both hubby and I are guilty of sometimes keeping our feelings hidden away, but when so few people understand NF2 it’s almost impossible to do anything else, and it’s often less stressful to pretend that everything is ok. It’s meant that I’ve sobbed at a reflexology session, and had to retreat into a side street  to cry in private because the sadness hits at inopportune times, but at least the tears come, and I think I’d worry more if we stopped being able to cry about it all. We’re not sad people. Far from it. But sometimes we need hugs, and lots of them, to help make us that much stronger in the baddy places.

His and hers coping strategies

Whilst hubby and I are similar in many ways, we have very different approaches to shining a light on the darker times such as now, what with his brain tumour, chemo, and Norwich City‘s performance.

How hubby makes himself feel better:

How I make myself feel better:

  • Meditation
  • Pilates
  • Qigong
  • Reflexology
  • Bowen Therapy

Fortunately, what with hubby being deaf and having to rely on subtitles n’all, the volume is turned down when the telly is on and he’s watching what I affectionately refer to as “all that shite”.

In all seriousness though, whilst even he admits that it’s trash telly, we both realise that watching something a little bit mindless and silly, is exactly what he needs after a hard day at work, and to take his mind off what’s going on in his body. If I ask him what he’s thinking when he’s watching these programmes, the response is always “I’m not”. And that’s EXACTLY what meditation should be about. Whilst I have to consciously sit down and meditate, hubby has mastered the art of shutting out unwanted thoughts and focusing on the present. He’s a Zen master, without even realising it.

Fortunately he also likes being outside and staying active, and our trekking trips and holidays balance out any time spent in his man chair. This way we still get out to see the real world; stay as fit as we possibly can despite both having medical quirks; and broaden our horizons.