It's difficult to remember the last occasion when our meal times were regulated over a prolonged period. We have grown accustomed to eating when hungry and grazing in between if necessary to top up blood sugar levels. But that has had to change under the new regime.
Steve must not eat for two hours before and one hour after taking the selumetanib capsules, which he does twice a day at 11.30 am and 11.30 pm. That effectively means two 3 hour blocks of time every day when only water can pass his lips. Fasting time....
Mornings are generally not too difficult, although long lazy breakfasts finishing after 9.30 am and the occasional brunch are off the agenda for the time being. However, the evenings have been a bit of a challenge. It's only when you can't have a glass of wine or a nightcap and a nibble after 9.30pm that you realise how much you miss it!
I'm sure we will get into a new routine over time, but at the moment we find ourselves clock watching and saying, you've only got 5 minutes to finish your food and drain the cup of coffee or glass of wine before the curfew begins. Not the way to relax and unwind!
Until we get our eating patterns sorted out at home, we are reluctant to go out for meals where we have little or no control over when food and drink arrives. I'm sure we will find ways of dealing with this, given time. But for the moment, we are taking it softly, softly.
As well as establishing and getting used to new routines, we have been watching out for reactions to the trial drugs. The most obvious side effect is on the gut - stomach cramps from time to time and more visits to the loo, but not so bad that Steve needs to take imodium every day. Nevertheless, he feels a bit vulnerable at the moment and is reluctant to stray far from home.
On Thursday evening, another reaction manifest itself - a skin rash, which is another common side effect on the VanSel trial. It's more of a flush than a rash, mainly affecting his chest, neck and face. Not itchy or painful, just noticeable and making him feel rather self-conscious - more ruddy farmer than tanned Adonis! However, the doctor said it's a sign of the drug working, so we are taking that as a positive.
The change in complexion has gone hand in hand with a slight puffiness around his nose and cheeks, which is more obvious to Steve than to anyone looking at him. However, the combination of rash and puffiness makes his skin feel tight and wearing glasses somewhat uncomfortable, even though he is using aqueous cream to keep the skin supple and factor 50 sunscreen when outdoors.
Less easy to define is the feeling of being slightly fuzzy or out of focus in the head; not as sharp as he normally is...and perhaps a bit less energy than usual.
We will discuss all these reactions with the doctor on the next hospital visit for his usual blood tests and observations. However, although slightly unnerving and unsettling, so far these effects are nothing like as debilitating as those Steve experienced on his last two treatment regimes, and for that we are truly grateful.
The only other thing we are trying to get our heads round is not having an "end date" for the Vansel trial. Unlike previous treatment regimes, it won't necessarily be over after a specific number of cycles. If the Vansel combination works for Steve, i.e. the cancer does not grow or spread and he can manage the side effects, then he could carry on taking these drugs beyond the study end date.
That's got to be good news in terms of progression-free survival. However, we would have to reconcile ourselves to some permanent life style changes, like many others who have to manage chronic health conditions with medication and new routines.
But I'm getting way ahead of myself now....we won't know until mid-April when Steve has his next scan whether the drugs are doing the job we hope they are. All we can do is sit tight and keep our fingers crossed. Please cross yours too!
Thank you x