No significant change
My head has been in a pretty awful place for the last week or so. Whilst I am afraid of what's going to happen to me, I'm feeling more afraid for those around me and what they might have to go through. It's an awful thing to even have to think about but pragmatically is it wrong to hope that when the time comes it's not a long drawn out thing? I'm trying hard to lift myself out of this mood now and get my head ready for the rest of this week. When it comes down to it, the fight is as much mental as it is physical. Ultimately the cancer will beat me physically but the key question is will it beat me mentally. I mustn't let it but there are days when getting there feels like an uphill struggle.
Following on from my scan last week, it was time to see the oncologist last night for mid-course review. The news is not as good as last time but my consultant's view is that it's a positive result. The radiographers view of my scan was "no significant change" but when my consultant challenged this view they seem to have come around to a slightly more positive position. The tumours in the lymph nodes in my chest are definitely smaller, there is evidence of new non cancerous tissue filling holes in my bones and my consultant believes that whilst the size of my liver tumours are unchanged this time the cancer cells are being killed and a kind of watery substance left behind (which accounts for the lack of shrinkage).
I won't say I'm not disappointed, because I am. I was definitely hoping for something significantly more positive. Perhaps I was expecting too much but following the 30% shrinkage of the tumours last time I was hoping for a 10% figure or something like that. Reflecting on the review the morning after I think my consultant was more positive about it all, certainly more than I was. I guess I sometimes forget just how far I have come since the treatment began. I was failing apart quite dramatically just prior to the treatment starting and I have reached a position where my quality of life is significantly better than it was. And that is what this is all about. There's no miracle cure for my ailments, the aim is to give me the best quality of life possible in the time I have remaining. Speaking of which, the consultant said he was not minded to change the prognosis he gave me last time i.e. 9 to 12 months.
We discussed continuing the chemotherapy and we decided to proceed with chemotherapy session 5 and to decide on round 6 when I see him in three weeks time. The decision on round 6 will take into account how bad the after effects from round 5 are; because as he's always told me the impact is cumulative and the sickness and fatigue are difficult and I'm finding it hard to get fully on my feet between chemotherapy sessions. My appetite hasn't really come back this time and I'm back into hospital for chemo 5 on Thursday. On the flip side I want to get every ounce of benefit out of the chemotherapy because once it's over, until the cancer comes back, there's nothing I will be getting from a treatment point of view.
In my last update I mentioned that I'd been to the Northampton Lung Cancer Support Group meeting. I've since found out that the original purpose of the group is to support the carers of lung cancer patients although I suspect that the line between the being for the carers and the patients is bit blurry sometimes. I've also been reminded that cancer patients can be a little shy, and despite what you might think, I can really relate to that comment. It is difficult enough to talk about cancer at the best of times and actually sometimes it's the last thing that I want to talk about. Anyway I've decided to try and attend the group when I can, although the next one might be difficult so soon after my next chemotherapy session.
On the iPad front I've actually had a sort of iPad crash in the last week which has meant that I had to restore the device from a backup which wasn't exactly recent. I guess we've all been there at some point with a PC, laptop or drive and I should know better. With an iPad there is not much that you can lose in terms of data but what there was to lose, which included the original draft of this blog post, I have indeed lost. This pushed me to look at my approach to the data that it's possible to lose on my iPad and as a result I've downloaded an app called Simple Note which allows me to create notes on the iPad but keeps a synchronised copy in the cloud and, a bonus, on my iPhone. It's free but ad supported, the ad is pretty unobtrusive so, so far, I'm pretty happy with the approach. The more I play with it, the more I like it. It's one of those apps that I would have liked even without an iPhone or iPad, a simple cloud based note taking and list keeping application, accessible from any internet connection. The only other thing I could lose is documents created in pages, numbers or keynote. I think my strategy here, as a minimum, would be to email a copy off to my gmail account after a working session.
