Tagged with neurofibromatosis

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.

Avastin

We received some good news on Friday. The funding for hubby’s round of Avastin therapy has been granted, and preparations are under way for the baseline tests. We’re now waiting for an appointment with the oncologist, and a new MRI scan date. As hubby has an ABI – Auditory Brainstem Implant, he can only have an MRI where his head is wrapped very tightly. This way there’s less of a risk that the magnet in his skull will flip over during the scan. Whenever he emerges from the scan room I can’t help but notice the looks of terror on the faces of other patients in the waiting room. With his head covered in bandages, and sometimes a little bit of blood from the anesthetic needle, he’s quite a sight!

As May is NF (Neurofibromatosis) Awareness Week, I thought I’d take this opportunity to talk a little more about Avastin and NF2. Huge thanks here must go to my wonderful friend Kate – medical librarian extraordinaire, who knows full well that we like to read all the science bits, and went out of her way to track down research papers. We loves you Kate.

You may have heard of Avastin as the ‘postcode lottery’ cancer treatment drug. I won’t go into the ethics of patients being denied treatment because the companies that make the drugs charge so much for them, but needless to say I think it’s abhorrent. Sort it out drug companies. You can still make a profit without forcing doctors to make heart wrenching decisions over who gets to live a little longer. Your CEO’s will just have to lose a yacht. Or two.

Avastin is the brand name for a drug known as Bevacizumab. In NF2 it’s used to try and stop growth or even shrink the benign nerve tumours. Whereas conventional chemotherapy drugs kill dividing cells, even healthy ones, Avastin only targets one particular protein on the surface of a tumour producing cell. This protein is called vascular endothelial growth factor (VEGF). In very simple terms, whilst conventional chemo has a more toxic effect, ‘targeted therapy’ drugs such as Avastin stick to the VEGF protein, and persuade the body’s immune system to attack only the tumour cells. By preventing the tumour from developing new blood vessels, Avastin effectively starves it, meaning that it can’t grow any bigger, and may even shrink. The drug is administered by drip once every two weeks, and whilst this will make every second Friday interesting for a little while, it will at least mean that we get to see mum-and-dad-in-law oop north more often.

We’re not the sort of people to get too hung up on reading about side effects, but these could include nausea, tiredness, weakness, loss of appetite, diarrhoea, high blood pressure, blood clots, and changes in the way the heart and kidneys work. Hubby’s favourite though, is that as Avastin can affect fertility, he’ll be asked if he wants to store some of his sperm. I’ve lost count of the number of times he’s made crude jokes about not needing magazines to help him do the deed, when there are women in nurse’s uniform wandering around! I despair, I really do.

Long term – well who knows. We’ve never really planned more than 6 months ahead. Ill health has that effect. It makes sure that you live in the present. For us it’s all about travel, and the first thing we did this weekend was book a trip to celebrate the funding, and to help us keep our spirits up. It’ll fit in nicely between hubby’s dosings, and won’t be so exhausting that we knacker him even more. It will however allow us to have a little adventure, and it’s these adventures that give us the strength to carry on.

The strangest thing…

It’s always the case isn’t it? You try desperately not to cry in front of people, to give the impression that you’re holding it all together nicely, and then someone says the strangest thing and sets you off.

I’ve been seeing a Bowen Therapist for a little while as recent stresses seem to have exacerbated the EDS. Certain parts of my body have decided to go into ‘lockdown’, leaving others to over-compensate, and a back in spasm is a tad painful. Yesterday, whilst working on my lower legs she quietly said “your feet are really fed up”, and the waterworks started. No wails or snuffling, just tears.

Whilst the fact that I’d started to cry over such a statement shocked me, it didn’t her, and I’m sure that it wouldn’t surprise quite a few other people too. I’m an emotional person at the best of times. I can quite easily feel other people’s pain, empathy comes naturally, and I will always worry about others. But I’ve yet to really cry about hubby’s latest diagnosis. And I’m  not sure why. Maybe it’s because we both know that there could be some very tough times ahead and we’re conserving our emotional energy. Or maybe it’s because we’ve grown even stronger these last few years. Whilst we may look fluffy on the outside, we’re steely warriors within.

The funding application for hubby’s chemo has now been submitted by the lead hospital so we’re waiting for a date for baseline tests to start. On the plus side this means that we can enjoy our little holiday in deepest darkest mid-Wales without having to contend with any medication side effects.

Whilst the brain tumour is big enough to be causing concern, as far as we know without getting in there, it’s not cancerous – NF2 tumours are usually benign, and so we’re not fighting against the clock quite so hard. But it has grown significantly in the last year, is compressing his brain, and has to come out.

That’s one of the problems when you start talking about NF2. Because it’s so rare, very few people have heard of it let alone know anything about it, and automatically assume that because you’re dealing with tumours that it must be cancer. I’m sure people think they’re being helpful by telling us about miracle cancer cures they’ve read about in the tabloids, but they’re really not. What would be more appreciated is if they actually spent a few minutes researching the condition – Neurofibromatosis type 2. Only about one thousand people in the UK have been diagnosed with it, and hubby has been a research subject since he was a child. There’s a lot of bull about it on the interweb of course, and yes some articles will talk about the Elephant Man even though the general consensus is now that he had Proteus Syndrome rather than NF2. I’ve listed the most helpful websites at the bottom of this post.

So all in all we’re doing ok. We’re keeping busy at work and play. We’re talking lots about the future, and we’re giving each other lots of cuddles. Alongside lots of laughs, cwtches (a special sort of cuddle, named by the Welsh) really are the best medicine.

Click to visit Neuro Foundation UK, and Can You Hear Us.

Losing control

Or rather, relinquishing it. I’ve gotten a bit tense the last few weeks (no shit, Sherlock!), but if there’s a time for going easy, for self-compassion, then that time is now.

We can’t control the NF2. It’s a bugger of a condition that does it’s own thing. We have no idea where the next tumour will grow, how big it will get, or what the repercussions will be. So we’ve accepted that. This certainly doesn’t mean that we’ve given in. Far from it. We’re both little fighters, hubby even more than me, and for those of who you know me well, you’ll know that this means that he’s one of a kind. He’s the bravest, most compassionate, generous, and witty man I know. And every day he inspires me, and countless others.

Even when told about the brain tumour needing to come out soonish, his first thought was for me and his family, about how we would cope. Now that the dust has settled a few weeks later, he’s still thinking more about others than himself. And that’s the mark of someone who’s been through hell, more than once – that far from reducing your ability to feel compassion, it enhances it.

Hubby wouldn’t be able to stop worrying about others first if he tried. Empathy just oozes out of him. He instinctively tries to protect others, and he’s forever worrying about my wellbeing. The first thing I see when I walk home from work late in the evening is his shadow at the front door – looking to check that I’m on my way. If not, he’ll start thinking that something bad has happened, even though I used to compete in Shotokan Karate and could easily pull someone’s ears off. In his words “I only have one beautiful wife, and I don’t want to lose her”.

And that’s what it all comes down to in the end – loss. Loss of control, loss of the people you care most about. The worst thing about meeting someone you feel a part of, is that you can’t comprehend them not being a part of you. Hubby and I became a part of each other on the first date, when yes, we talked marriage. You know when you know, especially when you’ve kissed as many frogs as I have! The bond we have is exceptionally strong. I know that. I only have to look at other people’s relationships to realise that we’re very fortunate to have found each other.

The love doesn’t make the pain of seeing someone suffer more bearable though. Far from it. I’m a sensitive soul at the best of times, so knowing what hubby is going through now affects me physically as well as emotionally. Which is why for once I’m taking a few steps back and being nice to myself. No more going hell for leather at the things that matter less. No more busting a gut for people who don’t have our best interests at heart. We’ll never be able to get this time back. We have one life. Best not waste it. Now is the time to embrace opportunities. To laugh lots, and most importantly, to love.