Ah, we had a ball.
The 4 days in Miami were their usual marvellous mix of shopping, pottering, sweltering in 90+ degree heat, savouring the air conditioning of our three floor loft with roof terrace, (s)wanking about in our silver Mustang, paddling in the hotel pool, knocking back cocktails, trying our both new and old restaurants (NaiYaRa the current No. 1 place in Miami Beach excellent, despite our winking waiter Benoit) and generally sucking up the magical Miami vibe.
Got back yesterday and currently feeling a little blue as the shining light in the middle of all these months of chemo has now been eclipsed and just what seems like a crock of crap – with some nice social interludes admittedly – lies ahead.
Have decided to:
– ask Prof for a recommendation for a back specialist to see if anything can be done to alleviate my back pain. This drags me down all the time, every day and I am pretty desperate. If nothing is possible surgically then it's time to sort better pain management and I've had almost everything do far, and none of it works, so I'm really hoping another doc may have something up his/her sleeve.
– work hard on the breathing chap. I have another lovely 'shove a tube through the jugular vein into my lungs and heart' procedure booked for 6 July, so once that's done I'm going to be all over him like a rash. Have the lung pressure readings changed since he first did this test three months ago? What do the numbers mean? Do I definitely have pulmonary hypertension? If do, why don't the drugs work and what else is available? Could I also have something else? What are the chances of my breathing ever being better than it is now – will I get my life back? Small questions that I'd really like answers to..
– talk to Prof about only doing one more round of chemo. I am SO done with being on treatment and even this new US drug doesn't seem to be able to reduce my
Paraprotein levels. I need to see how much it's gone up while I've been away, and then see what 4 more weeks of it plus Velcade can do. Then I'm keen (as much as you can be) to stop chemo and get on with the path to stem cell transplant. Will see what the numbers are, but I really don't want to keep plugging away at chemo when I think I've hit a plateau that can't be reduced any further. Will know more at end July when I've done this next cycle and can then hopefully move on.
So, three big things to push forward. Feels like a monumental effort right now, but with any luck I'll get enough oomph to shovel it onwards this week.
On the upside, I'm going to the tennis this Wed with the lovely Liz Lewzey and then hoping to camp on Thursday to get tickets for Fri. Interwoven with going to Parkside for bloods in Wed and having chemo on Thursday, the hamster wheel never stops, even for Wimbers.
Happy weekend, lovely peeps.
S X X