Those of a sensitive nature should stop reading NOW!
For the rest of us –
I started my 24 hour wee collection today at 06:50.
I have two bottles.
It’s now 11:49.
I’ve filled one of them!
Forunately we’ve got some cola left over from my party last month and since it’s now been doubly established that it’s a no, no – something I knew anyway but sometimes I can’t help myself – the bottles may come in handy!
I have discovered the secret to making Bernard clean stuff. Bird poo!
I photographed him barely two weeks ago cleaning bird muck off the car and then earlier this week…
As you can cleary see from photo 2 he relishes the task.
And it happended again today, although I have no photographic evidence as I was sewing in the back bedroom when he asked where the tissues were as he’d run out of kitchen roll!
So I just need to get a large bird to make deposits in the house and the housework is sorted!
I woke up this morning back to normal, okay a little headachy because I may have over indulged in a caffeinated carbonated beverage yesterday – I can’t hold my cola – and what have they done to the logo?!?!?
I have been to two pre-start business seminars at the local Chamber of Commerce but decided to skip this week’s and rebook for after the SCT. It was on finance, I had no idea what I was doing with my figure and B gave me a ‘look’ this morning when I said I hadn’t decided whether to go or not!
Anyway I’m off to pick the retired vicar up for pre-yoga lunch and then yoga (I have him a lift home two weeks ago so there should only be a little screaming). With a bit of luck I’ll be able to say at some point ‘More tea vicar?’*
*Beth – Do you need a translation of this one?
Posted in Multiple Myeloma, stem cell transplant, yoga
Tagged myeloma, stem cell transplant, yoga
We got a phone call this afternoon confirming next Monday as my arrival date at the Royal. Since I should be at this point buzzing for a nurse to fill up my water jug and pass me something from the tea tray and maybe dim the lights and turn up/down the heating and maybe plump up my pillows I can’t seem to get the same amount of enthusiasm up! I can’t decide whether this is a good thing or not. Kitten production is definitely down but so is everything else knitting, sewing wise. Mood however stabliised yesterday and is more or less back to normal. I can’t believe I didn’t feel okay by Saturday morning. I was like a kid who didn’t get what they wanted and sulked. I want my stem cell transplant and I want it now and if I can’t have it today I don’t want it until August – let’s see how you like that messing up your schedule – see if I care!
When the co-ordinator rang today and asked ‘Are you okay?’ as they do. I said ‘No I’m not, I’ve told people including work that I’m going in today, I’ve done my list, I’ve bought new pyjamas and Primark knickers, I’m not very happy at all, I cleaned the bathroom, the bathroom, I’ve downloaded films, I was actually all excited and now I’m all flat! What are you going to do about it?’ Oh, okay then I really said ‘Yes, I’m fine.’
I should be grateful I have another week to sort things out and that I get yet another day out to Liverpool. Since I didn’t get my lung test when I went on Friday as it could be done today I need to go for it and the ECG one day this week. I had the ultra sound on my heart but apparently not the ECG (yes, Lorna I will remember to shave my legs). I also need to take back my 24 hour wee sample – that should be fun for the person next to me on the train!
I said to my mother in law that I would see if I could get her appointment for the next installment of the ear syringing saga moved to this week but then found out about going to Liverpool so between that and the weeing in a bottle B doesn’t think it’s a good idea. However his mother who can’t remember my name half the time (she’s never has been able to consistently produce any of our names to our faces – I don’t mind her calling me Gillian but draw the line at Bernard or Stephen) remembered I’d said this when B spoke to her tonight, so he at least got the pleasure of telling her she’d still have to go next week.
Now I just need to remember who else I’d told I was going in today as one of the neighbours rang before to see how I was getting on and was surprised to get me!
Posted in Multiple Myeloma, myeloma, stem cell transplant
Tagged myeloma, stem cell transplant
We went to my Auntie Ann’s yesterday and she gave me this…
Apparently I’d sounded down when I spoke to her on Friday night to say I wasn’t going in for my stem cell transplant on Monday. It’s just as well I didn’t ring her as soon as I got home or she’d have bought the whole of Delamere Forest!
I got one off our neighbour and his ladyfriend last year and it seemed to be doing okay until I shook it to get rid of the faded flowers and the whole top fell off! I think I may have over watered it, which is suprising because I normally maintain a ‘treat ’em mean, keep ’em keen’ plant policy.
We’ll check back in a month to see how the begonia is doing.
Posted in Look at My..., stem cell transplant, Uncategorized
Tagged Look at My..., stem cell transplant
Well I went to Liverpool today with Chris, a friend. I was going to go yesterday afternoon but B wanted to come. How nice. Then I realised from his enthusiasm when Chris said she would come that it was more related to me going either to the station or Liverpool in the car!
So we went to the Royal and picked up my containers to wee in for 24 hours – nice – were informed I only need to get there at 15:00 on Monday and went and had chocolate and tea. Chris is a bit of a chocaholic.
Then we went round Liverpool Museum, ohhed at fish, fiddled with everything we could in the Plantastic Exhibition (it was probably aimed to children but we enjoyed), urghhh at huge cockroaches and then marveled at skulls and animal remains in the natural history bit. There a very nice curator regaled us with information about elephants’ teeth, turtles, sharks’ teeth, loofahs and let us into a secret locked room and showed us two enormous elephant tusks.
Off we jollied then to buy even more knickers and pyjamas from Primark.
Then we had a very nice italian meal served by a very nice young man, strolled back to the station and caught the train back to Chris’s. As we were walking back to the train Chris said she’d really enjoyed it apart from the circumstances and so had I. I only had to keep this same feeling over the weekend and I’d be kitten free!
I phoned B when we got back at 19:50 so he could pick me up and he said I’d just missed a call from the Royal but it wasn’t anything to worry about I could ring them tomorrow. As I could remember the number (I really don’t ring them that much it’s an easy number and I’m pretty good with numbers anyway, honest) I rang them up to be told they didn’t now have a bed for Monday and it was likely to be next Monday! They were really sorry. Needless to say I was a disappointed, rallied but could feel myself teetering, Chris wasn’t a happy bunny and said she felt like one of the plastic plants we played with where you pushed a button to inflate it as an example of it filling with water and then it deflated. B definitely wasn’t happy and pointed out that next Monday is a bank holiday and I should ring tomorrow to find out if it will definitely be next week. I feel like I’d prefer to wait a few weeks and get a definite ‘cast in concrete date’ rather than – well it will probably be three weeks, having an appointment I didn’t know about, ringing up to find out it definitely wouldn’t be last Monday but since I didn’t think I had an appointment I’d assumed it wouldn’t be, but it would be this Monday and now it will be next Monday.
So as much as I hate to admit it and appear whiney and moany I started to cry in the car on the way home and coming from a very superstitious family I’m fighting the feeling it is a sign not to go ahead! I know that’s crazy and in the cold light of day rationality will reassert itself but for now I’m going to follow Chris’s suggestion to accept that tonight is a bit of a right off, have a bath, possibly an alcoholic drink and go to bed and get back to being happy in the morning!
I realised yesterday that today is 12 months since my diagnosis. Although I think the MM had been circulating for at least another 16 months before that!
So as an Anniversary present anyone want a kitten – I keep producing them on and off since yesterday morning when there were quite a few! It’ll be okay, little kitten, it’ll be okay, triplets, it’ll be okay! I’m thinking the little kitten thing is quite normal. And then there’s the ‘bring it on’ giggling hysterics* over the rice and then a not extremely funny episode of South Park – while I was doing something else I was slacking. (* When we had the little apherisis problems, the nurse asked me if I was normally that giggly and when I answered yes, she said that was a relief because she had been getting a little worried it was hysteria. I said no the time to worry was when I stopped. )
It was the rice incident that made me realise that I may be trying to get too much done – since in my haste to get the bathroom cleaned yesterday I threw the rice out of the jar into the pan for tea, thinking there may be too much and it turned out that I was mistaken and this was for two of us…
I insisted on B having it since he was going to work and I had my fish and sweet and sour sauce with rice but in the form of rice cakes – which I had very nearly binned the day before, because I know they are good for you but life is just too short for these. I’d challenge anybody to say that they actually enjoyed eating them not allowing for them being dipped in 1 inch thick chocolate!
That said I had taken Mary for her ears syringed, her hair done, got her a pie, taken her home, been for lunch with a friend (as tea on Wednesday was postponed), been to Auntie En’s where I knit and she crocheted for a couple of hours, cleaned the bathroom room, made polite conversation with B so he didn’t feel neglected and had a quick filing/craft tidy up, ordered some stuff to take on holiday, and some bin bags (don’t ask), sorted sky player and downloaded some films. Ohhhh, that’s not a lot, I need to get my finger out.
Fortunately I’m generally leaning towards the ‘bring it on’ little bit of perverse excitement and doublely fortunately I have my mother in law to put things in perspective. After the nurse explained the slight risk of perforating an ear drum or infection from the bacteria in the water she decided she didn’t want her ears syringed as it was ‘too risky’. She was eventually persuaded that the risk was pretty minimal and I didn’t say once ‘Get a grip it’s only water in your ears!’
Clothes
Pyjamas – 7
Knickers – 14
Bras – 7
Socks – 7
Slippers – Don’t know about this, I don’t own any, may take flip flops, it’s not like I’ll be going far, bed, toilet, bed, shower, bed, reclining armchair, bed, fridge, bed, tea tray!
May decide to double up on everything as less requests then to B and less washing – although I’ve had volunteers.
Toiletries
Cleanser, refining serum, balm (or in old terms, face wash toner, moisturiser – all Martha Hill, naturalish stuff, not tested on bunnies, reasonably priced)
Body lotion – Highland Soap Company, recent purchase in Scotland, natural and the Wild Nettle smells really good believe it or not
Brush – May be coming home sooner than me
Wig – See above
Shower gel
Hand wash, cream and sanitizer – Not that I’m being fussy but the only thing sensitive about me is my skin and hospital stuff doesn’t agree with me. I end up with hands drier than an Egyptian mummy
Cooling pillow – Because I have a fridge I can put it in!
Stuff to Do
Books – The Book Thief, Under the Dome, The Hitchhikers Guide to the Galaxy, Virolution
DVD – Yoga for stress relief!!!!!!
Laptop, charger and mobile broadband
Audio books
Knitting
Card Making Stuff
Cross Stitch
Okay I know I may be a little under the weather and not want to read, knit, stitch and card make all at the same time but it’s like a security blanket, some kids had a blankie I had something to do!
I have reviewed my pre Holiday to do list and think I may need to trim it down a little. B on the other hand seems to think I may need to do more although he has declined my other to make up his buns for work and pop a month’s worth in the freezer – I beleive you can freeze ham butties not that I’ve ever tried but there you go). I’ve been asking for several weeks for some compost to repot the plants in the porch and this morning he brings home two pristine bags of it. A huge deal since he had to put them in the car boot and they may dirty it. I don’t think I’m under too much pressure though because it involves B lifting a large Money Plant out of its pot (well actually a builder’s bucket – it’s black and reasonably tasteful) and since I asked him two and a half weeks ago it’s not made it out. He also treated himself to some hand cooked crisps and a bag of sweets. ‘So this is the way things are going to be, I get hospital food, you get treats.’ B pointed out these things will be eaten well before Monday.
As B was getting the compost out of the car and I gazed fondly at him through the kitchen window (hey, occasionally I do, ok) I felt bad/guilty that I’m putting him through this. I felt like this last year when I was diagnosedand occassionally since like when I was in hospital with shingles. I remember my Great Uncle Tom many years ago apologising when he had a heart attack and obviously we felt he had no need to, but now I understand why he did.
Saturday I discovered a message on the phone from Friday, from the Royal. Apparently we’d missed an appointment! Fortunately they knew I had been because of the ECG. So I rang the number and got the Bone Marrow Transplant Unit but no-one could help so I had to ring after 14:00 on Sunday. Apparently I had a clinic appointment we didn’t know about and I should have had a lung test but it looks like my crystal ball is on the blink.
So… we get another trip to the Royal on Friday to breath heavily and hang about the clinic so they can squeeze us in and then my holiday starts on Monday! Uh, er, Mrs.
Meanwhile back at the mother in law’s (I’m thinking of changing the subtitle to mother-in-law, myeloma & no knitting or sewing). I went round yesterday while the Falls Adviser called round at about, remember about, 11:30, that about is very important. According to Mary 11:45 is not about, 11:50 is certainly not about and 11:55 is definitely not about! Maybe I should ring and let them know that she had the Monday club to go to in the afternoon because it wasn’t fair if she missed that.
When the Falls Adviser did arrive she tripped over the door threshold which apparently went to show she was in the right job! There was no advice she could give Mary as she was too healthy! No heart disease, blood pressure, stroke, diabetes, could see okay with her glasses, was going for a hearing test (even though she isn’t deaf). It’s like déjà vu – ‘I can hear you okay.’ ‘That’s because I’m shouting.’ ‘Well talk normally.’ ‘Okay then.’ ‘I can hear that’.
Apparently water infections/any infection can cause falling and when we had the weeing in a pot escapade just after she fell she did indeed have a water infection. Other than that she needed to pick her feet up as my father in law was always telling her.
On the way to the front door, the Falls Adviser remarked to me that Mary was ‘A little angel.’ Did she mean it, erm, you decide!
I would like to point out that Mary thinks about us, even though nobody bothers about her – I know this because she tells me, I think it’s just in case I don’t know from our conversations. Whilst making a cup of tea for Mary
Me: ‘I go into hospital next Monday.’
Mary: ‘How long for?’
Me: ‘A month.’ – There no point saying up to a month as she’d want to know why I wasn’t home and why Bernard was having to do everything.
Mary: ‘Well, what about my appointment for my ears syringed.’
Me: ‘That’s this Thursday.’
Mary: ‘Oh, yeah. Don’t put too much milk in that.’
New
* Knit socks for acupuncturist
* Make list of stuff to take to hospital for stem cell transplant as I finally have a firm date
* Finish dress started today and make another two – nothing like a little pressure to make one get one’s finger out
Still Hanging About – but started
* Post patterns and knitting to Ravelry (9) – Should have plenty of time for this next week
* Make 1 baby presents (8) – 2 down one to go
* Don’t postpone doing To Do List in an attempt to mark something off it –Now going to do the To Do List on a Tuesday – To Do List Tuesdays
* Garden – this may have to wait for a bit and when I say started I went to the shed and then came back!
Done – Hip, hip hooray
* Aran cardigan for me in rose tinted colour – pic to follow – I may even be wearing it
* 2 baby presents – pics to follow
Long Term Goals
* Discover cause of myeloma – I think there’s more chance of this than sorting the garden
* Build own house
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