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.
