Shingles and Roofing Felt

I swear I just can’t let Sean Teirnan have anything to himself.

Sean’s stem cell transplant didn’t work, mine then gave in.

It was decided that Sean wouldn’t benefit from the usual second line treatment here of Velcade and Dexamethasone so he got Doxorubicin too (or PAD as it is known).  I refused Dexamethasone as an accompaniment for Velcade because it sent me round the bend and so got Doxorubicin instead.

Sean got shingles and now I have them too.  Albeit mine, at this exact moment in time cover a much, much smaller area. 

I ummed and ahhed this morning about phoning up somebody – being a bank holiday due to some wedding somewhere down south both the day unit at the Royal and our doctor’s were closed.  I thought about going to the local walk-in centre but then thought that could put others at risk from getting chicken pox from me and more importantly obviously put me at risk of picking up who knows what from the waiting area.

I thought I’d wait until this afternoon and see if the rash had changed any.  After reading the comments to yesterday’s post I realised that I probably wasn’t being a hypochondriac if I phoned the on call doctor.  So I rang at 17:20 and got an appointment for 17:50 at a local chemist a few miles away.

This caused B to drop everything, literally since he’d been on the shed roof and needed to change his trousers before he’d even consider getting in the car. However following a discussion:

P:  ‘I’ll drive myself.’

B:  ‘Do you know where you are going?’

P:  ‘Yes, of course I do.’

B: ‘You need to go down the East Lancs and blah, blah, blah.’

P:  ‘And it’s on my left.’

B:  ‘No, it’s on your right.’

P:  ‘I’ll find it.’

B:  I’ll take you.’ (After having gotten down off the shed roof.)

P:  ‘I feel well enough to drive.’

B:  ‘I don’t mind taking you.’

P:  ‘No, I’ll be fine,’ (Thinking ‘Yes you drive’ and obviously showing it on my face.)

B:  ‘Oh, bloody hell!’ Dropping trackie bottoms for the second time in the garage.

P:  ‘NO, I’ll take myself.’  (The ‘bloody hell’ being the deciding factor.  I had let him drive me to town, for card for the Buddy tags, yesterday because I couldn’t be bothered and I really don’t want it becoming a regular occurrence in case I lose my confidence in driving HIS car.)

B on the shed roof hard at work chatting to one of the neighbours.  Not that I’m saying he doesn’t do much DIY type things, but one of the other neighbours said they nearly got the ‘cine camera’ out when he cut the ‘lawn’ last weekend.

So off we (me and the car) went and we had a completely uneventful trip that wouldn’t have caused B’s blood pressure to rise even a tiddly bit.

I got seen straight away and was in with the doctor all of three minutes.  ‘Let’s have a look.’ she said before I’d even sat down.  I lifted the back of my T-shirt and from about three feet away she said ‘Yes, that’s shingles. What other medications are you taking?  We don’t want to take any chances because of your lowered immunity.  Have some anti virals.’  I came out with 35 x 800mg Acyclovir tablets to take over the next seven days.

Fortunately, unlike Sean’s, it’s not painful.  It’s a bit tender to touch and I am aware of it sometimes but some of the rash is residing under the back strap of my bra so occasionally it chafes.  I love that word. Chafes, it’s so funny.  Come on admit it we all have our favourite words.  I also like to write the outline for solicitors in shorthand – Pitman 2000 – hey I could have worse quirks and foibles.  Oh, wait I probably do but they are strictly not for public consumption.

Buddies, buddies everywhere I think I need a drink!

A celebratory drink of course so I think I’ll have a Lime and Soda.

Now although I don’t normally add Myeloma Buddies to the Myeloma Buddies page until after the recipient is in receipt I didn’t want you all thinking that I’d been skiving when I wasn’t gallivanting off to the hospital over the past, very nearly, three months so I’m making an exception in this case.  Although you will have to wait to find out where this little Buddy party is off to.

So after lots and lots of knitting, sewing and stuffing (ahem, minds out of the gutter please) here’s what 100 orange Myeloma Buddies look like…

The first 50 were the hardest taking from the beginning of February until 3 April.

The next 50 took me 25 days exactly.  Which I know only amounts to two Buddies a day even though some days I knit five Buddy bodies, arms, assembly and personality insertion averaged it out to two per day.

Each one has exactly the same number of stitches and rows, and the same eyes and mouth in the same places and yet each one is unique in its own little way.

Oops, bit of a scuffle broke out at the front.

Ahhh, all sorted.

I just need to give them all ribboned tags tomorrow and they’ll be on their way as hopefully will the little bit of a rash which has appeared on my back today but then again I think it might be shingles so maybe not!

Other creative spaces can be found here.

Knitting and salesmen

Ohhhh, I have so nearly finished my orange knitting.  In fact I plan to unveil it tomorrow!  What will I do with my time, perhaps I will tell you how to get a good deal on your home phone package, it’s a little convoluted and you’ll need the following:

 A ridiculously expensive chair from John Lewis that arrives with a fault

 A little doggy that feels hard done to missing his walk the previous day so is full of extra energy

A friend calling round who is afraid of said little doggy so surplus energy is the last thing he needs to have

An other half who decides to play a practical joke

An exasperated (well after speaking to me he was) call centre salesman desperate to keep your custom

And look again no use of the letter in the middle of a and c.

Happy diagnosis-day!

I just realised that yesterday is two years since my diagnosis with myeloma.  I hadn’t forgotten as such but I thought that today was the 23rd!  I intended to purchase a new key*oard yesterday, as lack of a B is slowing me down and typing of down, the down cursor is in collusion with the other key and is refusing to *e down, so that I could inform you all of the exact details surrounding my diagnosis (I was going to say bore you *ut lack of a B made that difficult).

Anyhoo, returning to the myeloma.  Yes two whole years, although I did notice on my notes for my stem cell transplant that someone had put diagnosis date of May 08 which is when my lower spine really started giving me jip – so I guess unofficially I am nearly at the three year average survival as still stated on the nhs choices site – last updated 23 June 2009, review of site information due 23 June 2011 – we’ll check for an update/new target after that.

I once had a discussion regarding pain and whether I would have preferred a non-fatal diagnosis with the pain continuing at the level it was or the myeloma and my current pretty minimal pain level, easily managed with two 30mg codeine a day.  I have to say that, although not the ideal selection, I am very happy with my current pain level.

My sister in law dropped off two garden seats on Friday which resulted in my favourite quote of the weekend, so far anyway.  On seeing the state of the garden her other half said ‘It’s a little late now however earlier in the year you should have got someone in to sort it out’.  Yes, there’s nothing in particular that springs to mind that was otherwise occupying us earlier this year to distract us from tackling the garden.  Mmm, no nothing comes to mind.

I would like to point out, just in case you hadn’t noticed that I managed to complete the last three paragraphs without the B key.  It wasn’t easy but you’re worth it.

Have a Happy Easter and lay off the chocolate!  No, I’m not slightly envious of people with chocolate or other sweetie treats and it has nothing to do with me telling * I didn’t want any yesterday.  I mean, I didn’t – yesterday!

The knitting’s bright, the knitting’s (still) orange!

Okay, I know what am I doing with all my time?  Am I STILL knitting orange? Yes it would appear I am!  So what? Huh? Huh?

And people keep commenting, well more people than usually comment on my knitting, I think it may be a bit eye catchingly BRIGHT!

AND I’ve nearly finished – realistically within the next two weeks but in my mind by the end of the long Easter weekend is seemingly realistic – ahhhh, knitters’ optimism you can’t beat it down with a stick.

Plus my knitter’s optimism is buoyed by the fact B has to work bank holidays so it’s a typical working weekend except no hospital visits Friday and Monday so all that extra time.  I got to go today and Tuesday instead.

Despite my neutrophils hitting 0.5 today I was able to get Velcade, this level is apparently the absolute lowest for receipt of said medication.  There is no pharmacist’s optimism about my neutrophils being high enough for another shot on Tuesday.  I however thought that feeling whoof on Tuesday may account for some of the drop along with having it a day early and I get an extra two days for my neutrophils to regroup and then, when I sat down to use the lap top I put my hand under my chin, I noticed that apparently I have a slightly swollen gland.  Initially I thought it was the spot that had been brewing nearby but no, it would appear to be a gland.

I’m just going to keep my head down and keep knitting and by Tuesday my gland will have gone back down, my neutrophils will have come back up, my knitting will be finished and I can get round to checking my email inbox and its 1,000 unread messages and turning the washed laundry pile back into the ironing pile!  I may be a bit behind with things – only may be.

That time of the month again…

yes, photo time again and what a difference a month makes in Spring when compared to March.

Left

Middle – with added Bud

Right

And just to show how unseasonably warm it is at the moment, no not an inappropriately dressed passer-by but Bud…

‘Come on slow coach I’m gasping for a drink!’

Feeling Whoof – by Buddy

You know there are days when you think you know exactly how your day will go and then it all goes paws up, like today for instance.  I thought we were back to our regular Tuesday routine ie, I’d get a walk before P abandoned me to go and sit in an armchair somewhere else and wiggle things about.  Did this happen? Noooooo!

I should have known before I got up that things weren’t going to plan as we got a lie-in on a week day.  P got out of bed somewhat reluctantly quite some time after B came to bed and it turned out she had a temperature of 37.4.  So she took some tablets to lower it and although she managed to make some porridge I got more than my usual snoutful.  P then lay down on the settee and I realised then my morning wasn’t going to pan out as planned.

However P’s temperature had gone up to 37.9 and I got a whole new experience.  There are long windows in the living room and it turns out these aren’t windows at all they are doors.  Doors that open straight to the ‘garden’.  I didn’t know what to do.  I stood at the edge sniffing and then I put my front paws on the outside ledge and when P didn’t shout me back I jumped out.  One second I was in the living room, the next I was in the outside.  I had a little sniff and then jumped back in and apparently this door doesn’t work like my pet flap – nobody appeared with a towel to wipe my paws.  I needed to think about this so I jumped onto the settee with P and contemplated it.

After letting P stroke me for some time because she likes doing this I decided to venture outside again.  I had a good old mooch round the garden and then I came racing in like I normally do – WHACK – through my pet flap into the garage. And you know what I had to wait, and wait and when P finally opened the kitchen door she didn’t even bother to wipe my paws.

After more snuggling I thought I’d give it another try going out through the window door. Again I ran back into the garage.  Again I waited but I only waited once, then I popped back out the pet flap and looked in through the door and there was P still on the settee.  I gave her a look that said ‘What are you doing there? Don’t you know the protocol?’

And a B, no wait, a bee flew into the window.  I couldn’t see it properly from inside so I went outside and put my paws on the wall and looked in at it.  I hadn’t seen one close up but have snapped at some when we are on my walk but they walk in the air so they are hard to catch.  I can look at these but I shouldn’t poke them with my nose or they’ll make my nose sore.

P finally picked up her knitting at 12:30 when her temperature had dropped down to 37.1.  P and B went out later in the afternoon, without me, to get the ball thing that I have to keep away from taken off and they took some blood to see if anything was brewing.

I did finally get my walk later on with B while P had a nap.  When we got back I jumped on the settee with her and snuggled.  There wasn’t much room and I had to put my tail in her face – I think she likes it.

Don’t Woo Hoo in Tesco

‘Are you on your own?’ asked the Prof.  

‘Yes, this is the first clinic appointment Bernard has ever missed.’ I said, thinking do I need someone with me?

After B asking about my paraprotein level he missed being told the news. Although I don’t yet have my PP figure, my IGa which was 18 on 11 February is now 0.44!  WOO HOO.  Although I didn’t feel so much like woo hooing by the end of the conversation as I ended up a bit dazed and confused. 

I heard once that a good number of patients either do not remember or misinterpret the information supplied by their doctors.  I have never considered myself one of these, I mean I take a notebook to jot down pertinent points for goodness sake, however this is what I remember the Prof saying…

We met before when I graciously acquiesced over the steroids.

These are two medical students from Hong Kong, where I go to teach sometimes.  Do you mind if they sit in?

Can I call you Paula?  I feel old enough to be your father.

You’ve tolerated the medication well

This is your IGa (swivel of computer screen).

Do you have any brothers or sisters?

We will have put you on the international donor register.

You will see me from now on.

I propose two further cycles of Velcade and Doxorubicin but over four weeks instead of three so you will get an extra rest week and then a donor transplant.

WTF?  No, that was me not him and I didn’t actually say it out loud as such but it did surprise the sass out of me briefly, although I managed to ask if the students reported back on him when they got home.

What did you think would happen?

I’d have eight cycles of Velcade and if that worked we’d leave it alone. (Don’t trouble trouble as a friend says.)

In view of your age it would be wrong of me not to mention a donor transplant.

WTF? – again!

There is no point doing a second transplant with your own cells in view of the results of the first one.

You will/should have a donor stem cell transplant.

Ultimately though it is your decision.

I’ll see you in four weeks.

And although I did have my mocha and Eccles cake alone I got to enjoy the conversation of two elderly ladies at the next table – apparently one of their friends had paid £1,000 for a porcelain sink over part of which she now permanently drapped a tea towel so it didn’t get damaged and it was nearly handbags at dawn over who had the bigger house – and B arrived in time to take me for a late lunch.

Oh, and B decided he’d like to treat himself to a bag of fresh cookies from a little Tesco on the way back to the car.  They didn’t have what he wanted so as he was selecting I suggested he may want to go wild as we should be celebrating and woo hooed a little bit too loudly for the man further down the aisle who didn’t stop staring at me until I was past him.

 

 

 

What’s up Bud?

‘Its behind me isn’t it?’

WOO HOO!

We have a fully stuff flushable toilet! And the shower tray/enclosure didn’t have to come out to do it.  Unlike normal mornings when I get up before B comes to bed this morning of course B got in bed and I turned over for five more minutes while I came round only to hear a van pull up outside the house.  Doh!

The original installer of the shower tray and toilet (someone else did the bath and basin) no longer worked for the company.  The young chap this morning put a hole in the wall and fixed it through that.

The tilers were coming back to tile tomorrow but Bud and I got back from our walk to find they had knocked B up and were doing this…

and this…

However some of the plaster came off so a plumber has to come back in the morning to plaster.  Yes, they can do small areas, B queried it.  And the tilers will come back tomorrow afternoon to pop in the missing tiles and grout.  It was either this or next Tuesday.  Since the shower would obviously be unusable during this period we settled for tomorrow.

Having it finished tomorrow however provided us with a bit of a dilemma.  Cycle three starts tomorrow and includes a clinic appointment and it will be the first time ever that B hasn’t been with me to an actual see a doctor appointment. Obviously I saw the docs on my own during my surprise holiday in February and declined their offer of speaking to my family when things were pointing in the direction of the myeloma staging a comeback tour but I’m really disappointed and this really surprises me.

I was only saying to a fellow patient I met at the hospital but saw at the Blood Support Group on Tuesday night about B and the questions he asks and apparently it’s not just B, her husband does it too but it would appear that I like him being there anyway.

Oh, and the other thing is that at the last but one and two appointments B has asked about my paraprotein level and the last but one doctor said ‘What the hell lets measure it next time.  Its a little earlier than we would normally check so don’t put too much store by it but overall your blood counts are looking better and you feel well’ – bit of paraphrasing there.  So last time we went they took a sample for measuring and we, I mean, I find out tomorrow and the agreement between the doctor and myself was that if it had stayed the same or gone up it was B’s fault for asking so much – as he did last time we went.  Both the doctor and I explained that ‘Yes it was being ‘measured’ that day but WE would only find out the results in a week’.

Oh, oh and yet another thing – who am I going to go for a mocha and an Eccles cake with while we I wait and wait to be seen in the clinic – as some of us know it’s not so much a guaranteed appointment time as a raffle.  AND what about my Friday lunch out – ARGHHHHHHHHHHHHH!

AND last thing I promise – as it my week hasn’t been crappy enough (boom boom), wait I guess it’s actually been very uncrappy (thank goodness for medication related constipation) I had to speak to the mother in law today.  DOUBLE ARGHHHHHHHHHHHHH!