Same old, same old ...Cycle 4, Day 9

Steve has now done the 10m sprint between bathroom and bedroom for the third day in a row. Today, it happened at 5.45 am - rather earlier than usual.  We're a bit bleary-eyed as a result.  Methinks we will both need an early night tonight.


We are trying to stay positive.  However, if truth be told, the same old routine of hospital visits and trying to manage the side effects of chemo are making us feel fed up at the moment.  If we could be certain that the treatment is working, it would make it all worth while.  However, to find that out, we'll have to hang on in there until 13 October, when Steve will get the results of the assessment at the end of Cycle 4. Keep your fingers crossed for us.


One more dose of Velcade on Friday then a rest from treatment for a whole week (even though we'll be back in hospital for a scan and X-ray).  Let's hope the side effects of the chemo wear off in the week off.

The 10m sprint and a window to the future? ... Cycle 4, Day 8

For the second day in a row, Steve woke up feeling fine. Then, without any pre-warning of nausea, he had to do the 10m sprint from bedroom to bathroom, where he was a little sick (but not a lot, thank goodness). For a man assessed as 100% disabled, he can move swiftly when needs be! Also a very effective way of getting up quickly.....


Our hearts sank a little when we arrived at hospital to hear that, once again, the haematology lab's equipment wasn't working so all blood samples were being courriered to another hospital for testing, which naturally takes longer. Rather than hang around on the ward after all the other obs were done, Steve had an early lunch and, afterwards, we went out for a walk in the sunshine.


Our ramble was cut short when Steve thought he might have dropped his keys, so we re-traced our steps, eyes on the ground, only to find them safe in the pocket of his jacket which he had left on the ward.  Ah!  One of those senior moments....However, the walk in the fresh air woke us up a bit, and I managed to do some work before we had the all clear for treatment.  It didn't take long for the Velcade to be administered, and we were back home some five hours after leaving - not bad for a "short" chemo day.


On the way home, we discussed the young man being treated in the next bay to us, on the ward.  Although only in his mid-thirties, he appeared to be in a much worse condition than Steve - coughing from time to time, taking pain relief, connected up to the oxygen supply, using a stick to help him stand up and a wheelchair to go any distance.  It seems that he had been diagnosed with cancer in mid-August and the chemo wasn't working (so far, at least).  


There was a long, lively discussion with the Occupational Therapy nurses about how to manage breathlessness by changing posture and sitting in front of a fan; aids to make life easier at home; bits of equipment kept appearing and the whole thing seemed very positive.  We were both struck by how well he and his partner appeared to be dealing with such a very distressing situation (and mum and sister who arrived while all this was going on).  It made us appreciate how lucky we are (relatively speaking).  I only hope that if (or should I say when?) Steve is affected in that way, we are able to deal with it likewise.


Steve is now in the final chemo countdown, assuming his remaining treatment goes to plan.  So, in the great tradition of news programmes, I thought I should end this blog with the sports results.  If you don't want to know the scores as of today, look away now.

       Cisplatin:        4 down, 2 to go

        Velcade:        16 down, 9 to go

        Cycles:          3 down, 1 in progress, 2 to go

        Steve v Leo:  1st test stable; 2nd test starts
                           6th October

That sinking feeling and bad taste ...Cycle 4, Days 5 and 6

There is no doubt now that some of the side effects of chemo (fatigue and nausea) are cumulative, whilst the steroid anti-sickness tablets which Steve takes at the start of each cycle seem to make him feel a bit "edgy" (can't think how else to describe it) for some time afterwards.  


Another problem is a strong taste that remains in his mouth long after he has eaten.  Rather than getting rid of the taste, mouth rinsing and teeth brushing simply add a mint-flavoured layer. We haven't figured out a way of dealing with this. I wonder if the lingering bad taste could be one reason why people on chemo sometimes resort to bland food?


The combined side effects of chemotherapy meant that Steve did not feel so good on Saturday. To make matters worse, I woke up with that sinking feeling that I might have developed an infection - slight cough, husky voice and temperature slightly raised.


Due to this less-than-wonderful start to the weekend, I ended up spending a large chunk of the day trying to keep my distance from Steve in the hope that he wouldn't catch my infection, and we missed Tanya and Diego's party, which I'm sure was superb on such a wonderful sunny day.  


The good news is that things had improved a little by this morning. Steve felt better for his early night. Although the bad taste was still there (in his mouth - in all other respects, his taste is very good...) there was no need for an early morning antiemetic tablet.  Plus, my infection hadn't worsened overnight and Steve shows no sign of coming down with it so far. We have made the most of the fine weather with a longish walk along the river to Port Meadow then home via the canal, so the latter part of the weekend was on a higher note than the beginning.  


Must remember that peaks and troughs are par for the course.  I think we're lucky we have many more good days than bad.  I hope its the other way round for Leo.   

Flying solo, bouquets and best wishes.. ...Cycle 4 Day 4

Steve was a big boy today.  He went to hospital all on his own for the second Velcade dose of this cycle, as I had to go to London for a work-related meeting. I'm pleased to report there were no major hiccups this time, just a short wait for a bed on arrival. After the usual couple of hours waiting for the blood test results to come back, Steve was cleared for treatment and was back at home before me.  That's about as smooth as it gets. Perhaps I should leave him to fly solo more often!


Our love and best wishes go out to my cousin Maureen and her husband John, who finished a course of radiotherapy this week. Have a lovely, well deserved break.  We'll catch up with you on your return, all relaxed and recuperated. Also to Debbie in Plymouth, who has had a difficult time recently - enjoy your trip to Jersey, you deserve it! 


Whilst I'm giving out bouquets and best wishes, I would also like to say thank you to my employer and work friends for the sympathy and understanding everyone has shown me over the last few months, both in and out of "the office". Very, very much appreciated. Thanks also to all those who took part in the World's Biggest Coffee Morning organized by Macmillan Cancer Support to raise money for people affected by cancer.  I hope the cakes in Temple Quay House, Bristol went down well!


Last but not least, tomorrow 25 September is Mesothelioma Awareness Day, in the USA which aims to raise the profile of this cancer through a radio campaign and a campaign to make Mesothelioma Awareness Day official in cities and states across America.  Good luck to all involved.  The equivalent in the UK is Action Mesothelioma Day in February. We'll have to think about how we can get involved next year......any ideas, anyone?  


That's all folks. Dry your eyes and put away the hankie, the awards ceremony is over - for now, anyway!

It's up! Cycle 4, Day 2

Euston tube station

Northern Line (City branch)

Platform 6 Southbound 

Need I say more?

For more information see blog
"Going Underground"
28 August 2009

Hiccups Cycle 4, Day 1

It's been a day of hiccups:

• Steve couldn't find his keys (car, house, garage, cases et al) this morning, even after a quick look round the house - luckily we have spares, so could drive to the hospital for the long chemo day
• We started out later than planned and were then caught up in horrendous traffic congestion on the way to the hospital, arriving about half an hour late (found out later the eastern ring road had been closed due to an accident which took out the traffic lights - everything was diverted through town, which was why all the radial roads were chockablock)
• Others were late arriving at hospital, including the receptionist who inadvertently booked Steve in as a "visitor from abroad" in her rush to catch up (later picked up and corrected)
• The catering order for lunch and tea had already been filled in by someone else by the time we arrived, so Steve had no idea what he would be eating later in the day..not quite what he would have chosen...
• A small cannula was used rather than the larger one usually inserted, so the first dose of saline was set up at half speed and took two hours to be delivered rather the usual one hour (consequently we were getting twitchy about the Velcade going past its sell by date....)
• The last dose of saline was also set up for two hours instead of one (but that was changed quickly, once we pointed it out to the nurses)
• The final dose of glucose went through at the specified speed, but the pump kept playing up as it was too much for a small cannula to handle (we ended up re-setting the machine ourselves, rather than calling for the nurse to do it every few minutes - otherwise we would still be there....)
• The car parking ticket was faulty and wouldn't let us pay to get out of the hospital car park

Nothing major, but a severe dose of small hiccups today, as you can see...

On the bright side, all the tests were clear, so Steve is still on track with his treatment, and his weight is slowly going up, which is good (probably something to do with Colin's lovely meals over the weekend). The attendant let us out of the hospital car park without paying when he heard about the faulty ticket. There was one space left to park on street when we arrived home - a miracle! We found the missing bunch of car/house keys in the recycling bin (don't ask how/why....)

So, it's been quite an obstacle course, one way or another.....but we finally managed to get through the dreaded long chemo day in one piece.  Four long chemo days down.  Two to go.  Got to be good news...

Reality check ...Cycle 3, day 21

The joys of the past weekend and a visit from Murray this evening which helped take our mind off things are now being crowded out by thoughts of going back to hospital tomorrow to start Cycle 4 of chemotherapy.  


As the side effects of chemo seem to be getting more noticeable and lasting longer with each cycle, the thought of resuming treatment does not fill us with enthusiasm.  Plus, it will be a long, hard, and probably very boring day tomorrow with both Cisplatin and Velcade due to be given, assuming of course that all the tests come back clear.  Must remember to pack the bag with plenty of reading material..


If the chemo is having a positive effect, that would make it all worth while.  However, we won't know that until the end of cycle 4.  Very frustrating....

As you can probably tell, we're not exactly jumping for joy tonight.  However, I'm hoping we'll feel a bit more positive by the end of tomorrow when the long chemo day of this cycle will be behind us.