This time last week, we had paddled home through the floods after our visit to the hospital to discuss treatment options with Steve's consultant and were feeling optimistic! A lot of water has, quite literally, gone under the bridge since then...
River levels in Oxford peaked last Thursday and have since being going down very slowly. Although the park at one end of our street remains mostly under water, the main road at the other end of the street - which had been closed due to flooding - eventually reopened and we were able to go out in the car on Monday to re-stock food and other essential supplies.
As anticipated, many of the things we had been storing in a rented garage a few streets away have had a good soaking, so a lot will have to be thrown out/recycled in the coming weeks when we have the time, energy and inclination to get our hands dirty. In the meantime, it can carry on drying out...
The reopening of the main road meant that postal deliveries have resumed. At long last, a camera that I won in a competition back in September has arrived, together with a camera case by way of apology for the delay. Thank you Olympus - I look forward to playing with the new kit! However, there was no sign of the information sheets about the VanSel drug trial Steve hopes to take part in, which was making us a little anxious.
Then yesterday afternoon there was a phone call from the hospital saying the information was now available - did we want to collect it? Yes please! The timing of the phone call was fortunate. Shortly after, the electricity supply which had cut out several times over the previous two days, went off again and stayed off....a victim of the flooding and high water table levels. Thank goodness we had a large supply of candles, a big new box of matches, a film downloaded on to a fully charged iPad, plenty to eat and a bottle of wine. After the initial frustration, it turned out to be quite a romantic evening!
Power supplies were restored about 8 o'clock this morning, just in time for breakfast. Apparently the fault causing the problem has been found and the engineers will be working on a permanent fix tonight. We are bracing ourselves for another power cut this evening, but hopefully that will be the end of it...
We have been to the hospital today and collected the information sheet about the drug trial which I scanned quickly on the way back home. I confess that when faced with a long list of possible side effects in black and white, the prospect of going back into treatment looses some of its appeal.
In particular, the trial drugs make skin very sensitive to UV light so anyone taking part has to cover up as much as possible and use a minimum of factor 50 sunscreen on exposed parts when outdoors, even in winter. Steve is not a great one for sunbathing, but neither is he a great fan of slopping on sunscreen, so that would be a challenge for him.
Other side effects are similar to those experienced with previous chemo regimes - not things to look forward to...On the other hand, not every one experiences the same effects so until treatment begins, we won't know how it will be...
We'll read through the fact sheets in detail tonight and if Steve still wants to take part, he'll phone the hospital tomorrow to arrange an appointment to deliver the consent forms and get dates for the extensive tests that have to be carried out to make sure he's well enough to take part in the drug trial. Then we wait for the results....so it's baby steps forward....
It was strange going back to the Clinical Trials Unit today. The last time we were there was some four years ago, when Steve took part in the Velcade drug trial. The Cancer Centre had only just opened then. The NHS Trust had commissioned "uplifting" artwork and we were delighted to see one of my photos on display in the room where Steve had treatment several times. We noticed today that it's still there, and still looks good. The doctor we saw today was also impressed when we pointed it out to him!
With the possibility of another power cut tonight, I think I ought to post this now rather than wait until photos have been downloaded. Time to take a deep breath before reading the information sheets and facing the demons of fatigue, mouth sores, skin rashes, diarrhoea, blurred vision, loss of appetite and all the other stuff that may be waiting for Steve in the next few months, assuming he signs the form and passes the tests to get on the trial. Here we go again...probably, maybe....
River levels in Oxford peaked last Thursday and have since being going down very slowly. Although the park at one end of our street remains mostly under water, the main road at the other end of the street - which had been closed due to flooding - eventually reopened and we were able to go out in the car on Monday to re-stock food and other essential supplies.
As anticipated, many of the things we had been storing in a rented garage a few streets away have had a good soaking, so a lot will have to be thrown out/recycled in the coming weeks when we have the time, energy and inclination to get our hands dirty. In the meantime, it can carry on drying out...
The reopening of the main road meant that postal deliveries have resumed. At long last, a camera that I won in a competition back in September has arrived, together with a camera case by way of apology for the delay. Thank you Olympus - I look forward to playing with the new kit! However, there was no sign of the information sheets about the VanSel drug trial Steve hopes to take part in, which was making us a little anxious.
Then yesterday afternoon there was a phone call from the hospital saying the information was now available - did we want to collect it? Yes please! The timing of the phone call was fortunate. Shortly after, the electricity supply which had cut out several times over the previous two days, went off again and stayed off....a victim of the flooding and high water table levels. Thank goodness we had a large supply of candles, a big new box of matches, a film downloaded on to a fully charged iPad, plenty to eat and a bottle of wine. After the initial frustration, it turned out to be quite a romantic evening!
Power supplies were restored about 8 o'clock this morning, just in time for breakfast. Apparently the fault causing the problem has been found and the engineers will be working on a permanent fix tonight. We are bracing ourselves for another power cut this evening, but hopefully that will be the end of it...
We have been to the hospital today and collected the information sheet about the drug trial which I scanned quickly on the way back home. I confess that when faced with a long list of possible side effects in black and white, the prospect of going back into treatment looses some of its appeal.
In particular, the trial drugs make skin very sensitive to UV light so anyone taking part has to cover up as much as possible and use a minimum of factor 50 sunscreen on exposed parts when outdoors, even in winter. Steve is not a great one for sunbathing, but neither is he a great fan of slopping on sunscreen, so that would be a challenge for him.
Other side effects are similar to those experienced with previous chemo regimes - not things to look forward to...On the other hand, not every one experiences the same effects so until treatment begins, we won't know how it will be...
We'll read through the fact sheets in detail tonight and if Steve still wants to take part, he'll phone the hospital tomorrow to arrange an appointment to deliver the consent forms and get dates for the extensive tests that have to be carried out to make sure he's well enough to take part in the drug trial. Then we wait for the results....so it's baby steps forward....
It was strange going back to the Clinical Trials Unit today. The last time we were there was some four years ago, when Steve took part in the Velcade drug trial. The Cancer Centre had only just opened then. The NHS Trust had commissioned "uplifting" artwork and we were delighted to see one of my photos on display in the room where Steve had treatment several times. We noticed today that it's still there, and still looks good. The doctor we saw today was also impressed when we pointed it out to him!
With the possibility of another power cut tonight, I think I ought to post this now rather than wait until photos have been downloaded. Time to take a deep breath before reading the information sheets and facing the demons of fatigue, mouth sores, skin rashes, diarrhoea, blurred vision, loss of appetite and all the other stuff that may be waiting for Steve in the next few months, assuming he signs the form and passes the tests to get on the trial. Here we go again...probably, maybe....
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Good luck with the power cuts, I remember the miners strikes as a small child and thinking how exciting the candles were then. Good luck as well with the trials, The side effects always sound terrible, when you read all the bumf, you wouldn't even take an aspirin. When they went through the chemo side effects in detail I always remember the registrar going side effects could be hair loss, nausea, death! We went gosh that's a bit more than a side effect!
ReplyDeleteWishing you both well