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 🙂

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