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 🙂

Losing my hair instead of my mind

After a two hour drive through not very nice traffic, car parking issues, seeing the oncologist, and settling down for chemo dosing number two, it was quite disheartening to then learn that it couldn’t go ahead. Hubby’s blood pressure was too high, and they couldn’t risk doing permanent damage to his organs. So we were packed off home, with me quietly seething that no-one had had the foresight to tell us that there are blood pressure parameters they have to work within, and that we should be monitoring hubby’s. Instead, we’ve now got three weeks to get it down to normal, or goodness knows what happens – we’re not ready to think about that.

Fortunately our local GP and Practice Nurse sped into action and this morning hubby was checked out, given a blood pressure monitor to bring home, prescribed medication to bring the pressure down to normal, and Movicol to help ease the chronic constipation which is unfortunately a very common side effect of Avastin treatment. As he has issues with swallowing and eating anyhow thanks to damage to his throat caused by previous surgery, not being able to go to the toilet has meant that his appetite has disappeared. Not good when he needs to be putting on weight.

We’ve been using alternative remedies such as good old fashioned prune juice, flaxseed and vitamin C, but with blockages like this (sorry to be so graphic!), only conventional drugs have the necessary oomph to flush it all out from the top down. Suppositories can work if waste is impacted in the lower bowel, but not in the top, and yes we’ve been using those too. So now you have the low down on hubby’s toilet habits.

As for me, well one of my lovely friends commented that she’d have had a breakdown if she had to deal with all of this. That’s not happening – simply because I won’t let it. Instead, I’ve started to lose my hair. There’s only one small bald patch at the moment, and it’s hidden, but if I lose any more then I will absolutely be buying a purple wig. Our diet is healthy and the doctor is pretty sure that it’s stress related, so I’ve been instructed to relax more (stop laughing), and to look after myself so that I’m as strong as I can be to look after hubby.

As some of you know already, losing my hair would not be as catastrophic for me as it might be for others, given that I’ve had a number two crop in the past, after an unfortunate incident involving half a bottle of wine and some hairdressing scissors. Having read that Sharon Stone used to cut her own hair in a room lined with mirrors, I though that I’d give it a go, using one of those tiny crappy mirrors attached to the front of my wardrobe. I basically managed to scalp myself. Fortunately my then hairdresser worked from home and was able to fit me in for an emergency appointment, but hearing my work colleagues scream when they saw me the following day was a bit disheartening. Hubby is being as supportive as ever, in his own words “don’t worry beau, it means that I can now start calling you cue ball…”

A lifetime’s supply of Immodium

Fortunately the chemotherapy unit at Oxford’s Churchill Hospital isn’t as dark and dreary as the one shown in the Macmillan telly advert. Instead, it has huge reclining purple armchairs, a never ending supply of hot drinks and snacks, beds in case you really need to lie down, radio’s, dvd’s and a steady stream of friendly doctors and nurses.

Hubby made himself comfortable whilst the lab analysed his blood samples, and I was sent off to the refreshment trolley. This meant that he wasn’t there to witness my managing to throw a cup of hot chocolate over my head, down my top, and even into my bra, but sadly the rest of that ward were. Still, I’m glad that I managed to make a few people smile.

Sitting to the right of hubby was a very nice man who kindly moved his ipad so that hubby could also watch the cricket. Cricket man was having several rounds of chemo that day, and looked a little tired. Sitting to his left was an older man who’d not long had his stomach removed in his fight against stomach cancer. The cancer has spread and he’s facing 5 weeks of radiotherapy every week day, but he’s amazed his wife and doctors by continuing to eat normally, even his beloved steak, albeit with the help of enzyme tablets. He too was having several rounds of chemo that day.

Hubby is being treated with Avastin, a monoclonal antibody. He doesn’t have cancer. He has NF2 – Neurofibromatosis type 2, a rare genetic condition that causes usually benign tumours to grow on nerve endings. Although he has many tumours  throughout his body, the ones in his brain and on his spine are causing concern because they’re growing quickly. If the Avastin can stop further growth, then it will mean that hubby doesn’t have to undergo invasive brain surgery again for a wee while. If the Avastin can shrink the brain tumour, then so much the better. And if it can shrink the tumour at the top of the spine, then it’ll  mean that he doesn’t need surgery that risks him losing the use of part or all of his arm. At the moment though, we’ll be happy even if the Avastin just inhibits growth.

Hubby’s face was a picture when the pharmacist brought over his first medication bag. It contained anti-sickness tablets, mouthwash for possible ulcers, and what appears to be a lifetime’s supply of Immodium should he get an upset tum. Apparently he can take up to 8 of these tablets a day. In his own words though, if he did take 8, he’d “end up shitting breeze blocks…” There then followed a series of diarrhoea themed jokes and comments. Like he says, I married him partly for his sense of humour.

Having decided that in the words of the NF2 link nurse “Churchill day is chocolate day”, hubby enjoyed his bar of Dairy Milk whilst fellow patients ate their packed lunches and snacks and I people watched. All nationalities, ages, shapes, sizes and backgrounds. Cancer and tumours can hit anyone, regardless of lifestyle. Some patients come to hospital alone. Some bring more than one friend or family member to offer support. But all leave their ego at the door. Here you’re stripped back to basics, to what really matters, and when you talk to the people around you, you feel as if your soul has been touched by theirs. You can’t help but change your perspective. Top jobs, nice looking shiny things, what other people think – none of that matters. Loving others and being loved in return, very much does.

And so it begins

Hubby’s foot is now infection free. In his words, he’s been left with a “scabby toe”, but I’ll spare you the pictures. Fortunately the GP didn’t need to remove the big toe nail, and after our first appointment with the oncologist yesterday, we’re good to go with the chemo in two weeks. Which is a relief, because the most recent MRI scan has shown that the large tumours are growing, the big one in his brain – which they’re now talking about as being a vestibular schwannoma, by 4mm in the last 5 months. He also has large tumours in his neck and abdomen, but at the moment, and as far as the chemo is concerned, we’re focusing on the brain. Seems most important right now. Especially when the oncologist says things like “we have to do this now!” Quite.

I’m not sure what the work experience student made of our appointment. He looked a little bored to be honest, or maybe he was just knackered. Cancer outpatients can’t be an easy place for a 16 year old to have their first introduction to the world of work, and as hubby doesn’t have cancer – he has NF2, a rare genetic condition that causes tumours to grow on nerve endings, then his case might have appeared an unusual one. Kind of being thrown in at the deep end I suspect.

The department felt very different to what I’d expected. I thought that I’d have found it quite a sad place. Instead, I think you’ll find more negativity in a train station waiting room. The building is literally full of light and bright spaces; art – especially of landscapes, adorns the walls; and the staff are jovial and compassionate. There’s nothing like living or working with an illness that could considerably shorten your life, or that of someone very close to you, to help you put things into perspective. No sweating the small stuff here. Instead, I listened in on a conversation between two female patients, discussing how pleased they were that they’ve finally been able to lose a little weight thanks to the chemo, and that next time they’d bring their sandwiches and have a picnic whilst waiting for their clinic appointments. We thought the same. There’s a little park outside which cries out for a blanket and hamper. That’s for when we’re not arguing over which DVD to put on in the Day Treatment Unit of course. Fortunately, Inbetweeners 2 won’t be out for a little while. I’m not quite sure the other patients would have hubby’s same boyish sense of humour. For instance I still get called “Julie”, thanks to his obsession with Ali G…