I’m going to start by needlessly apologising for not posting a bit sooner – I’m trying to keep my updates to at least once a week but decided to wait to post until I’d had my catch up with the Doctors.
Following on from my shower seat and acceptance of accepting as much additional help as I could, we spoke with the occupational therapist at the Marsden early last week. They arranged an appointment for us to discuss what other things they could do for me around the flat, as well as arranging for a wheelchair to be delivered the next day.
We had a test drive the day after which was shopping for new trainers and I did find myself feeling a little self conscious initially. Partly because we were going round a familiar town I’d spent so much time growing up, working and socialising when I was younger. It wasn’t that I expected to bump into someone I hadn’t seen for years on a weekday afternoon but everything felt that little bit different being moved about at wheelchair height. From a practical side it is quite complex getting round shops and even streets as you need to think about things like:
- Where the lifts are in shops? And will that lift allow you to get anywhere near the end of the building you want to get to (turns out not really).
- Whether it makes sense to be on the (pedestrianised) bit of road or pavement to get somewhere as the kerb might be raised for quite some distance in either direction and the wheelchair isn’t a pram.
- Whether you can fit between the clothes rails or not.
The list goes on… You take it for granted when you’re walking about or even on crutches that you can just direct your body quite easily to where you need to be so it’s annoying to say the least when you can’t. With the chair you also have the added complication of needing to tell the person pushing you where you want to go. I found I got annoyed at times at not quite facing the way I wanted to when stopped and even extremely silly things like wanting (because of the child inside ) to push the lift button but missing it because my wife, quite rightly, is concentrating on getting me from a to b. It’s another lack of control to deal with, granted it’s not a biggie like the cancer but its one less thing I have ownership of.
Come the Friday we headed slightly south for a long weekend away with friends at a gorgeous converted barn, complete with heated swimming pool and very luckily for us, perfect weather. No one managed to get burnt (significantly) in the end and it was a wonderful weekend just chilling out, spending time with some of our closest friends. What both Taz and I find difficult with any big enjoyable event like this is that underlying feeling of it being hard to fully enjoy even the happiest of occasions because of the situation we’re facing. Like it’s tainted ever so slightly – the aim is to put that feeling aside and try and purely enjoy the occasion but it was difficult at times. What we’ve also found is that there is a come down afterwards, a bit like post holiday blues which we experienced after Edinburgh and the weekend. That whole return to reality but reality being a lot more depressing than “sigh… back to work 5 days a week”.
On Wednesday we had 3 appointments at the Marsden, the first being the second dose of my bone strengthening drug, though unlike last time we didn’t have to wait hours for the drug to be prescribed and so it was a quick appointment. This was followed by a visit to the occupational health nurse to discuss changes/improvements we could make at home. There were a few areas where small changes would make a big difference like swapping clothes about in our chest of drawers so I don’t need to bend down to get to my t-shirts. It was already something we were doing while on our recent trips away but just didn’t “click” to replicate at home. Again, I think its part of adjusting to a changing circumstance and concentrating on what can we do to make it as easy as possible for me and accept that things might need to move about or find new homes in order for that to happen. I now also have one of those toilet stand/handle units (I fully expect someone from social services will be sending me a radar key and orange emergency pull cord to complete the set).
The final appointment was with the Doctor to discuss my latest CT scan from 2 weeks earlier. The scan showed the results they were expecting which was progression of the disease in a few areas. On the positive, the disease in my spine at one particular place had improved thanks to the Radiotherapy back in April. On the negative, the nodules in my lungs had worsened and there was some increase in the size of my lymph nodes. The Doc once again offered chemo to help with the nodules in my lungs and the lymph nodes but we’re still unchanged in our decision on the benefits of more chemo under these circumstances. We’ve arranged to go back in 4 weeks for another check up and it’s a case of letting them know in the meantime of any new problems or if we change our mind on chemo.
Physically the downward slide continues – I’m still heavily bloated in my stomach and face but the steroid dose is decreasing so as time goes it will hopefully improve. I’ve had to deal with mouth thrush lately which is uncomfortable and doesn’t help with eating. I have a persistent cough and some breathlessness related to the spread of disease in my lungs and it’s also made me very croaky and unable to sing properly. The back pain has also increased and it looks like that’s related to the lymph nodes expanding and most likely pressing on nerves in my back. To my surprise though the right eye has improved a little, I can now open the lid almost fully without much effort and it stays open (to an extent). The eye itself is still pointing off in the wrong direction but that also seems slightly better or at least slightly easier to coax into a focusing position. Still, it’s a positive improvement versus the negative!
Changing the subject somewhat – one of the things I started to think about quite soon after my prognosis was what things I could feel proudest of accomplishing in my life so far, besides the obvious like meeting and marrying my wife. For those who don’t know me personally, I’m a keen musician and record producer and very recently finished recording an album for my old band, The Lost Eskimos. The whole project took about 6 years to finish thanks to various forms of procrastination on my side but the finished article, Say Goodbye I’m immensely proud of and hope you enjoy it as well.
You can download the album from here for free:
For a bit more back story on the project: