Back to blogging

Sorry I haven’t blogged, I’ve been feeling pretty good, as evidenced by the crocheting the previous week, making Christmas cards last week and now some knitting and a shiny new toy…

well okay it’s not actually shiny it has a matt finish.

Try as I might I couldn’t get onto the hospital internet and kept forgetting to ask B for the dongle, then it turned out it was in the bag I had all the time and then the laptop bust.  Now it did actually work after I spilt orange pop over the table it was on but who’s to say when it got sticky it may have changed its mind (apparently the laptop doc did say he noticed some spatters of something when B grassed me up).  So B took it home to take it to get repaired and managed to get it to switch on, brought it back and surprise, surprise it didn’t work.  So off it went yesterday (last Thursday) to the laptop hospital where the very nice computer doctor managed to retrieve all my documents and photos for a very reasonable price but needed to send the laptop away for further investigations.  So at the suggestion of my Uncle Ray earlier in the week B bought me an early Christmas present of a net book – with the help of a shop assistant speaking to me on the phone and then the fraud team from our credit card company checking the purchase!

Medically for me here’s where we’re up to.

We started the new treatment on Monday, it’s DT PACE and has never actually been used at the Royal before so involves me being kept in to monitor side effects for approximately two to three more weeks.  The drugs involved are

Thalidomide 200mg currently, dexamethasone (only 10mg not 40mg because we know me and dex don’t mix well), doxirubicin (doxil) 17mg, 8mg cisplatin, 35mg etoposide, 340mg cyclophosphomide.

The first two are tablets and the others have been infused over 24 hours.  Usually the tr

And this would be where technology, on Friday. stops me short again as the new net book runs out of battery charge and it turns out the mains cable doesn’t work.  So B takes the net book along with its snazzy little carry case home on Friday.  He then takes it back to the shop where they provide him with a new cable and he brought it back on Saturday.  However he brings it back WITHOUT THE DONGLE!  ‘And how did you think I was going to connect to the internet?  By magic?  What possessed you to take it out of the bag?’  I enquired gently!  ‘I don’t know I didn’t think you needed it!’  A casual exchange of views, mainly on my part, then ensued.

So since B isn’t visiting me today (Sunday) because he was on holiday last week and he starts back at work tonight, and my dialysis today is one o’clock pm (turned out to be two) rather than seven am it means he won’t have time to visit thus leaving me dongleless until Monday afternoon!

B reached for the snazzy little bag on Saturday night to move it into another bag for some reason known to him alone ‘Don’t touch it!’ I shrieked. ‘Why,  what?’ ‘At the rate you’re going you’ll probably end up taking it home by accident and bringing the dongle in on Monday but no net book, so hands off!’

So back to the treatment – its usually given over four days but due to the dialysis it’s run longer.  I had dialysis on Monday morning and then 24 hours (in theory, in practice it runs over) attached to a bag of doxirubicin and a separate one with cisplatin, etoposide and  cyclophosphamide in.  And then Wednesday, Friday and then Sunday with the last bags of treatment starting last night.

The renal team agreed my tunnelled renal neck line could be used for the chemotherapy only, so no bloods can be taken from or given through it.  This meant Friday and Saturday I wasn’t able to knit as the only place the on call doctor could get a canula was in the crook of my elbow so I had to keep my arm straight (as last time I ignored the canula when it wasn’t in use and crocheted and it came out all kinky).  The canula was for a unit platelets as I was down to 14 and two units of blood as my haemoglobin was 7 and we couldn’t wait until Sunday to top up while having dialysis as I would have been feeling pretty rough by then.

I spent Thursday looking like a half deranged Rudolph.  I started with what we thought was a nose bleed on Tuesday night, it was okay by Wednesday morning and then it started again Wednesday afternoon, so I sat there dabbing politely with a tissue while I had visitors which was really nice.  It wasn’t pouring it was just a constant little drip.  By the time they left I resorted to rolling up a wad of tissue and sticking it up there – and at least I could knit.  It carried on through Wednesday night and even though we tried doh dah watsit acid (something that promotes clotting) that didn’t help.  So Thursday morning, one of the new rotation of junior doctors stopped by to give it the once over.

After questioning me on whether I’d been poking anything with a finger – a conversation I’d had with the friends visiting the previous day – it turns out it wasn’t a nose bleed at all.  I had a little cut right on the end of my nose and which needed pressure applying to it rather than all the dabbing I’d been doing which was just keeping it flowing.  So one of the student nurses had the task of trying to get a tiny piece of gauze and sticky dressing stuck on the end of my nose!  This lasted a few hours and then another improvised one saw me through to Friday.  Now I have a little scab with strict instructions not to pick it!  Because I was hooked up I couldn’t change my top and when Auntie Ann came in on Saturday she said it was nice to see me in something not blood spattered.

I haven’t been sick for over a week, since last Saturday night, but after the piece of pizza, chicken dippers and cheesy bites came back I managed another four cheesy bites!  That should be I hadn’t been sick – last night’s jacket potato put in a reappearance as did the tiny bit of jacket spud I had for lunch today – so maybe no more potatoes!  And do you know how hard it is to be sick when the catering ‘hostess’ is making you laugh.

The Prof stopped by on Friday and acknowledged that I’d compromised on taking the steroids but felt that at the much smaller dose the side effects would be minimal.  They may very well have improved my appetite so far but otherwise – well let’s not say it out loud just in case!  The other myeloma doc is off gleaning information at the ASH conference in San Diago.

As my appetite had been poor and my potassium levels were actually now low the renal dietitian is letting me eat what I want at the moment.  With B being off last week I have been spoilt and for most of the nights this last week we’ve had takeaways – either pizza or chinese.

Oh and I have a fat knee – well both are a bit chubby (and no they’re not normally) but one in particular last night (Saturday) was possibly full of all the takeaways.  It would appear its likely to be pseudo gout as the dose of alluprinol (to stop uric acid build up) is lower because of my kidneys.  It’s not painful just stiff when I bend it and if I happen to forget and squat down getting back up is quite interesting so I have to remember to bend from the hip.  As at today (Monday) fat knee more or less back to normal, still bit stiff to bend but it’s definitely been on a diet.

I had to vacate my little side room and have been on one of the four bed wards since last Tuesday night but I think since I’m feeling better I actually prefer it although the elderly lady in the opposite bed is making me jealous.  On the fluid restriction I can basically drink 500ml more than I wee the day before (so intake is averaging at 750ml) and I may only wee two or three times at day meanwhile she’s passing more water than a race horse!  She’s also a bit mutt and jeff (deaf) which has resulted in conservations such as…

‘Your daughters look like each other.’


‘Your daughters… they look like each other.’

‘My hair looks better.’

‘Yes, it’s nice!’

And the good news this afternoon I may very well be able to go home at the end of the week.

13 responses to “Back to blogging

  1. Glad to hear you’re feeling a bit better and may be able to go home soon. Just try to make it a long stay at home this time rather than just a brief visit … poor Bud will be well confused!! Take care of yourself!

  2. So good to hear from you again! We will certainly be praying that you can go home at the end of the week. You have really “been through the mill” both with your body and your computer! Wish we could visit, but just consider yourself hugged!

  3. Getting ‘gassed up’ are you? A pint here, a pint there… kricky! Frustrating without the dongle, too, and while I have one of those, the internet service has been perfectly awful with only one or two bars, making it impossible to do photos on the blog. Sympathies… intending you are heading home soon and that the traveling MM doc is coming back from San Diego with some effective ideas for you!

  4. No wonder you look like a deranged Rudolph with all those (drug) cocktails!
    I haven’t heard of some of those. But FL’s first ever chemo regime was CTD: Cyclophosamide, Thalidomide and Dex. It whacked his MM pretty well for over a year, so fingers crossed the new mixture works well for you. So glad that Santa called early with your new netbook. We missed you! 😉

  5. lololololloloololololollollool…..f- – – -n lmao @ “yes it’s nice” !!!!!!! xxx

  6. Hi Paula!

    I’m glad you’re back to blogging again. I have to ask for a definition of “grassed me up,” please.

    How do you like that Doxorubicin? I always daydreamed about how it would look over crushed ice in a glass with one of those little umbrellas in it. I remember that it made my skin peel. Is it doing that to you? If you haven’t already seen it, look at this funny picture I took of a Doxil promo item I received:

    I had chronic nosebleeds as a kid, and it was embarrassing always having a wad of tissue in my nostril. I know how you must feel. That, and the ever present bloody pillow cases!

    I hope the DT-PACE won’t be too bad for you. I’ve never had it (just had the dex, thal, cyclo and dox — but not all at the same time). Just take all the meds they give you and try to keep your sense of humor.

    I’ll be checking your blog!

  7. paula, paula, paula – what have you NOT been through?! i am so relieved your were able to update on what’s been happening – and in your customary, incomparable, and humorous fashion. i am sending every positive vibe for the success of the new treatment, and your release to home the end of the week. i’m just afraid your nurses and doctors will want to try to keep you – can just imagine their being enthralled with all the hi-jinks and comic relief you provide. nah – they wouldn’t do that…
    warm hugs, karen

  8. Well, you are showing true grit, dear girl, and I’m glad you are still trucking.
    Do you like fresh pineapple? It is okay for dialysis patients and very good for myeloma “victims” as well. You can eat all you want. I should dig around through the lists and recipes for any other nuggets I can find.

  9. Oh, I do so hope you get to go home. And that you aren’t a “half-deranged Rudolph” by then!

  10. It was so good to get online and see your blog post! I have missed reading about everything that is going on with you. I had to laugh a little when I read about the orange pop problem and the laptop. It reminded me of the time I took a brand new VCR (this was years ago!) to the repair shop because it suddenly quit working while my children were watching a movie. No matter what I did, it kept eating the videotapes. The technician started to work on the machine and he asked me if I knew that someone had poured grape juice inside the VCR. Needless to say, I was very embarrassed!

    Your new netbook looks great I am sure you will enjoy it very much once you are able to get online. When you get home, just keep it away from Buddy!

    I am thinking of you and I do hope that the DT PACE works well for you and that you are able to tolerate it well. I will keep my fingers crossed that you make it home very very soon.

    Blessings to you Paula.

  11. So glad to hear from you and know that you have a new toy with which to keep us updated! Hoping you continue to get better and actually do get home before the holidays.


  12. I still pass by the Royal every day and wave….I look a little crazy but ah well 🙂 I hope you get to go home soon and that you are feeling better!!

  13. OK Miss Paula, time to gather your yarn and get your fanny on home for Christmas. Forget that you have lovely folks delivering baskets of treats “red riding hood style” to you on your holiday. We want all our MM buddies to be home for the holidays. Sending best wishes for that all around.xx

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