Trip Tips & Treatment

When holidaying you always need certain things to ensure a good trip –

Food – Let’s say it’s a good job there’s a Chinese takeaway opposite along with a pie shop and visitors willing to bring sandwiches and other stuff in.

Accommodation – It’s a bit dated but functional.  A replacement has been approved but has been on and off more times than a er, [insert own suitable phrase here as the only one I can think of is slightly rude and thinking about it is actually the finishing line to ‘up and down more times than a’]

Location – Very good.  If I could get out its within walking distance of the city centre with its wide range of shops, eating places and if the urge grabs you museums and other tourist attractions – like the yarn/fabric/craft shop nearby.

View – Well, whatcha think?

I think it’s pretty good and includes two cathedrals and on a clear day, like now but you also need a good camera, the Welsh Hills.  If there’s a really, really big boat on the River Mersey that can be seen too.  I have to admit without that point of reference I’m be hard pressed to correctly identify the river itself – I mean I can get close but certainly wouldn’t bet my life on it or even money for that matter.

Now that picture is quite deceptive because the glass is coated with a film which reduces glare and at this moment through the little gap of one of the open windows the sun is dazzling off Paddy’s Wigwam ie, the Catholic Cathedral – I think you should be able to pick that one out yourself – and to the left of the clock tower is the Anglican one.

Internet – Let’s not dwell on this.  I was so desperate the other day I even tried the one provided free and remembered why I don’t use it but my own has been so intermittent anyone close enough to hear me mutter would have been forgiven for thinking my mobile broadband provider was ‘For &*^£’s sake’.  However I may be discharged today so although our home one isn’t super fast, or super reliable come to that, it is somewhat better.

And then there are decisions to be made every day, some important, some not so important, some difficult, some not so difficult ie,

What to eat – Well in light of my comments on food above the hardest one in respect of eating anything off the menu is whether I want porridge or cereal for my breakfast.

What to wear – Obviously jim jams in some way, shape or form.  Although the tripper in the next bed who went home yesterday, on a similar basis to me today, we’re less likely to catch a bug at home, got dressed after her morning shower!!!!!!  It’s the first time I’ve encountered this personally and found it quite odd – basically because I don’t even need a weak reason to stay in my PJs and being on holiday is a really, really GOOD one.

However jim jams are not without their own complications.  Somehow by the time I’ve been in more than a week (sometimes sooner) I seem to have acquired a collection of items that aren’t necessarily the ones I wear most often at home (even though I’m pretty sure they’ve been washed) and items that don’t go together.  As we found out yesterday that I could probably go home today B just brought me one pair for today but last night (because I do change them before going to bed as well as after a shower) I ended up wearing a pair of red polka dot pants and pale denimy blue top!  I know not ideal but not too bad I mean I have stopped receiving actual T-shirts.  Ah yes I remember (not fondly) the purple check pants and pale green T-shirt ensemble.  Speaking of pants they are a whole other matter themselves.  We all, well I’m pretty sure all, have our own favourite (or worn more often) knickers or underpants and these quite often are not necessarily items you would want to be found wearing should you get knocked down by a bus.   On Tuesday I was due to have, and did, an intrathecal (into the spinal fluid) chemo injection and was selecting my garments to take into the shower in the morning when I realised that the knickers I’d picked although being peachy and complementing the jim jams nicely weren’t of a ‘hit by a bus calibre’.  This left me with a bit of a quandary – I did have other knickers to choose from and in the end plumbed for a pair that  though they practically guarantee an invisible panty line aren’t a pair I usually voluntarily wear for lounging but it was either those, which are extremely respectable both in style and condition, or a pair with smiling or surprised looking pineapples and lemons on them along with ‘Fruit Salad’ print – just in case you were unsure about the fruit.  And then I had the same dilemma yesterday when I had a bone marrow biopsy.  … sorry I just had to double check today’s as there’s another intrathecal injection later – it’s okay they are fine – I had indeed chosen appropriately.

Treatments – Now there isn’t a huge globbit of information available on treatment regimes for myeloma cerebrospinal fluid (CSF).  The figures say it happens in about 1% of cases but our consultant thinks that figure is on the high side or they would see more here.  Denise, very kindly, provided details of the chemotherapy drugs used there – currently thiotepa and previously depocyte and after that my injections are methotrexate!  It’s basically because we’ve gone for chemotherapy and radiotherapy but let me explain – last Friday our consultant was thinking depocyte and then we said thiotepa which is a drug he has heard of but never used personally.  Then on Monday when I saw the oncologist over radiotherapy, just on my arm I thought, she discussed radiotherapy on my skull and spinal cord too if I wanted a more effective treatment.  Our doctor had looked at this option over the weekend and found studies on 100 patients which showed it in a quite positive light.  However he said that with this complication he would never come across the ideal clinical data whereby 50% of patients were given one treatment, say radiotherapy, and 50% another, say chemotherapy as the numbers of patients just didn’t exist – or I thought ‘not at the same time’!  He was going to review the information the oncologist would provide later on Monday and let us know his thoughts – which were that the radiotherapy looked at good option but along with chemotherapy.  However I couldn’t have both at the same time – the oncologist had said to me that would be too toxic.  The need to get some injections in before starting the radiotherapy influenced the choice of medication.  The oncologist advised against depocyte as it remained in the system too long – one of the things the consultant liked as it would mean less injections, thiotepa although still being looked at and certainly not ruled out, was not readily available and indeed, if I remember rightly, not in the hospital, plus with not being familiar territory was a bit of an unknown with regard to side effects – particularly with having it before another type of treatment too,  and so methotrexate was picked.  It was here, I could have the first one on Tuesday, and it was reasonably familiar – not to me like I’d never heard of it, mind I’d never heard of depocyte or thiotepa Denise told me about them last week.

Speaking of Denise, if you’ve not seen it you need to go look at her comment on ‘B didn’t waste time’ from earlier this week – 22 May.  B was left unsupervised, by me that is, in Day Care on Wednesday as he waited for me to get back from Clatterbridge and collared the passing pharmacist to ask about thiotepa, a supplement very kindly given to me by Janice (as the doc wanted to ensure it wouldn’t cause an issue with either any meds or my kidneys) and pigeons.  I said to the doctor yesterday that if B happened upon him in the corridor he shouldn’t be surprised to find he was being asked about pigeons too.  I explained why and he laughed and replied ‘I think we can safely say I’m not going to find a research paper on that’.

7 responses to “Trip Tips & Treatment

  1. This is what I’m talkin’ about… teamwork! If I ever find an ‘appropriate’ set of jimjams in this country, I will send them on to you, but I don’t think folks here wear them – the more frustrating for me as I like to hang out on a weekend wearing them as well. Thanks for keeping us apprised of your vacation plans, P.

  2. Hi Paula -me again. Once again a very entertaining blog. Yes it is a pretty good view. Most people would pay megabucks to see it – and you get it for free!! So pleased that you have started the spinal injections albeit with a different drug to those discussed last week. Do hope it proves successful. Must admit I would be a bit dubious about the pigeon, no matter how fond B & B are of her! They are vermin as far as a I am concerned and to be avoided at all costs. Rats with wings! But that’s only my humble opinion! Hope you have a good weekend at home. I will try and come in to see you next week sometime. xx

  3. You are too funny. There is not much to read on this intrathecal stuff, for sure. I did read one thing that said that thiotepa was well tolerated, with minimal side effects, when used this way, but I’m sure it’s tough for docs to try things they’ve never used before. Glad they are doing the injections though! Your knicker situation reminded me of something my neighbor recently told me. Her daughter fainted while getting dressed for gym class in high school. She was wearing a teensy little thong and the poor gym teacher was struggling, trying to pull a pair of pants onto her, before more and more people gathered around, and possibly medics, if she did not revive quickly,
    while she was laying there with her fanny all hanging out! That is the only reason I don’t wear them. I think they cause fainting! ;o)

    PS we had a chinese restaurant that got caught killing and cooking up Canadian geese. For all you know, you could be eating pigeon already!

  4. Well, when I was a kid, 15 or 16, there was a British band called Gerry and the Pacemakers. Their biggest hit, as I recall was, “Ferry ‘Cross the Mersey.” I remember slow dancing to it with Janet O’Neill at a school ‘mixer’ and Sr. Mary Margaret Theresa actually said, “Lets leave room for the Holy Ghost, Mr. Driscoll.” I blame her that the relationship faltered and faded away.

    I was at first taken aback by the flying rat comment until figuring out that Chris T. is your friend Chris whom you reference frequently. That’s why you let the disparaging remark about Pigina slide…

    Nice picture, especially with you guiding us around the various points of interest. The Welch hills in particular. How many kilometers away is Wales?

  5. am at a loss for words… Your beautiful sense of humor and your special cheer despite being in a difficult spot! Hopes the doctor and team come up with a treatment protocol that is effective and not too toxic for you. Keep being your cheerful self and we do understand you will have your down days. Cyber-hugs to you!

  6. Wow Paula! So much going on during your holiday! Matching jim-jams?!? I wouldn’t know how to act! Mine are usually a mix of this and that – I liked the idea of the purple pants and the lime green top. 😉 Enjoy the time at home!

  7. paula,
    i just got a gander at a couple of spring issues of vogue and elle; turns out matchy-matchy is OUT! so, my dear, consider yourself a fashion plate if ever you’re tempted to don the lime green and purple, polka dots with fruit salad, or bold stripes along with checks. i’ve been partial to what we sometimes call, “get-ups” – smiley-face socks, pink and orange slippers, a fabulous pink floral jammy bottom, and an old hippy-looking brown and blue tye-dye shirt. knickers are another case, altogether. i once was walking, actually, sashaying (after purchasing a dreamy pair of shoes), in front of a shopping plaza, wearing a long, very full skirt, when i felt a chilly breeze on my behind. at nearly the same moment, i was passing a dark-glassed large window and saw my reflection. i was horrified to see that the hem of my skirt was caught in the elastic of my panties – which were a perfect shade of nude. i quickly glanced around to see if anyone else was looking, and discovered a police officer slowly following behind (hah! BEHIND!) in a patrol car! what he thought he saw – well, i’ll just leave it at that. but my dignity was sorely wounded as i yanked the offending hem down out of the top of my underpants. from that day on, no flesh colored anything for me!

    have a good week-end home. i am BELIEVING for you every step of the way in your treatment, and thank you for keeping us posted with such wonderful descriptions of all the high jinks as well as the details on how you are doing. xo, karen p.s. – you have so many great friends, and i just love reading all their comments, too.

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