Sunday 9 December 2012

a week of anticlimaxes and then.....

We had high hopes for making the most of week three of Steve's third cycle of chemotherapy.  Steve's appetite had returned, the worst of the fatigue was past and no infections to deal with.  

The week started well enough; the Advent calendar was up on the mantlepiece; Christmas cards had begun to arrive; the Meso warriors Secret Santa present was posted and we managed to do some Christmas shopping on Monday.

On Tuesday we traveled to Bristol to be with Steve's mum as she had her second "assessment" with the social worker - an interview which would determine whether she would stay in the care home or decide to return to the family house, to try to live independently.  To our relief, she had not changed her mind about continuing to live in the care home, where she is happy, safe and well looked after 24 hours a day.  We also visited the old house before and after this event, to pick up post and have a quick check round, knowing that we are unlikely to see it again in 2012.

It was a long and exhausting day with all the to-ing and fro-ing.  The sun was really low in the sky, which would have made it very difficult to see when driving in the normal course of events.  However, Steve's eyes had become very sensitive to light, so he had double trouble to deal with. 

The long day took its toll on both of us. By Wednesday, Steve was feeling very tired and "run down" for the want of a better phrase. His eyes were still sensitive to bright light. He was also having problems with mouth ulcers and swollen lips.  Not good.  And not expected in week 3 of the three week cycle, when things are usually on the up...

Thursday was Steve's X-ray and check up day at hospital. After cycle 2, we had been told by the doctor that his X-ray appeared to show that the pleural thickening had decreased a little.  We were both hoping to hear that this positive response to treatment had continued during cycle 3, which would have given us a big boost.  

On the day, Steve had his X-ray as usual.  However, rather than seeing a doctor in the clinic afterwards to discuss the results as usually happens, we were greeted by Liz Flanagan, who introduced herself as the lead chemotherapy nurse specialist.  She would be doing Steve's assessment instead of the doctor.  

We spent a long time talking about how Steve was managing chemo and the side effects, picking up some useful hints in this process.  Liz recommended the adult only version of Bonjela for his sore mouth.  With the festive season fast approaching, she also mentioned that some people on chemo enjoyed the taste of Pernod, even if they had gone off other forms of alcohol.   

However, she didn't examine Steve physically, or listen to his chest which has happened on every other visit.  And she had not seen his X-ray, so couldn't tell us whether the chemo was having an effect.  Apparently, all the X-rays are looked at with the doctors at the end of clinic and she would get in touch with us if there was a problem.  Nevertheless, she could see no reason why Steve could not go forward on to cycle 4 of chemo next week, assuming his blood test results were OK.  

After we left the hospital, we discussed what happened. Both of us had felt it was a bit of a non-event in many ways. We had came out none the wiser about Steve's progress than when we went in.  All a bit of an anticlimax, really....And not the boost we had been hoping for.  By Thursday evening, I had started sneezing again - yet another cold, only two weeks since the last one.  I think we were both run down....

Friday was a very quiet day.  Although there was lots to do, neither of us had much energy.  Steve had to go to the doctor to have his bloods taken for testing, but otherwise it was a restful day.  Steve's eyes were behaving themselves at last, but the mouth sores continued.  

By mutual agreement, we decided to cancel a lunch date with our friends Jon and Sally, which we had been looking forward to very much.  However, we weren't really up to it and it would have been unfair to pass on our germs to friends or other diners.  So what should have been a happy social event tuned into another anticlimax and an early night instead....

I think that having a restful day was beneficial for both of us.  We felt better on Saturday morning.  We took the pressure off ourselves by deciding not to take part in a local exhibition which we had hoped to do - another anticlimax, but a good decision in the circumstances.  This gave us a little bit of extra time to sort out the house and do some food preparation before daughter Katie and her partner Ed arrived at lunchtime for the weekend.

So after a week of anticlimaxes of one sort or another, and both of us feeling low, at last things started to look up by the weekend.  We caught up with Katie and Ed's news over lunch and an evening meal at home.  I had enough energy to get up early this morning to photograph the Santa Run, a two mile race to raise funds for Helen and Douglas House, Oxford's hospices for children and young people.  And jolly entertaining it was too - 1,500 Santas of all ages and abilities running, walking, being pushed or carried around the city, all dressed in bright red Santa suits - very cheerful!

We had lunch out with Katie and Ed at the Punter,our friendly local gastro pub. Then all too soon, it was time to say our goodbyes and wave them off as they set out for the station to return to London.  

Hopefully, the big meals Steve has eaten over the last few days will help him regain some weight, which has still been dropping off slowly but surely in recent months.  Whether he is well enough to have chemo 4 tomorrow, we will just have to wait and see.  

I don't think either of us would be surprised if it is postponed a week this time.  But you never know....He has started taking the steroids to help him get through the first week of treatment, if it does go ahead and I shall pack a bag of books, the weekend papers, pens and papers to while away the hours in hospital, if his bloods are OK to continue treatment.

On the bright side, as this is the last day of chemo cycle 3, Steve is officially half way through this regime of six cycles of chemotherapy.  That's something worth cheering about! Wooooo Hoooooooo :-)

And well done to all the Santas!!!

Santas warm up

Santas waiting for the off!

Under the rainbow to start the race

Run Santa run

Santa "Walkies" time

Elves give out goody bags at the end

All in a good cause:
Running in memory of Katie Marie

1 comment:

  1. good news on getting half way through and hope the colds clear up.
    thinking of you both