B didn’t waste any time!

After a meeting with one of our consultants, the myeloma nurse, the second ward sister present, refeering I think, me, B, and as circumstances turned out, Auntie Ann and friend Chris T not G, I got home leave until Sunday night.  Let me tell you I was glad to get back for a rest – I have no idea where the weekend went.  I didn’t even have time to get dressed Sunday.  I mean yes, some days I just choose (cba*) not to get dressed, but Sunday I fully intended on putting outside clothes on but it just didn’t pan out and yet I didn’t seem to get that much done.

Anyhoo back to Friday and my return to my usual place of residence.  After him appearing all upset about the current situation I arrived home to find that B had already allowed another bird to move in!  AND if that wasn’t enough Bud was obviously fond of her too.  Okay Bud didn’t actually say so but the fact that he hadn’t tried to eat her speaks volumes.  Here’s the floozy showing off her ass…

I mean I am just basing Bud’s fondness on the fact that he hasn’t invited her to dine with him with her being the main course at least.  I for my part at welcoming her to the family provided access to the greenhouse in case she wanted a dry sheltered spot.

Before

After

B bought some bird seed when he shopped on Saturday and I liberally applied it round the garden included into the green house. Now although I never saw Pigina venture in there herself, the friend that brought me back in to The Royal last night saw her wander in there for some seed. She actually spent Saturday night perched on an upright paving slab near the shed – Pigina that is not Chris G.

Chris thinks Pigina might be at risk of getting eaten by a bird and indeed that’s how she comes to be staying with us in the first place. I however an of the opinion that she flew into the window. I am basing this on the greasy looking pigeon size splatt on the back bedroom window…

It’s about central – you might have to tilt your head at an angle.

Now I have really no idea where the time went at weekend. I had BIG plans and yet didn’t seem to get much done. What I did manage was to finish a Myeloma Buddy I started on Friday.

Gingerbread Buddy

One of the other things I did was a bit of tidying up, now bearing in mind that B tends to let stuff pile up on the dining table while I’m away – heck he attempts to let it build up when I’m at home.

The flowers were kindly given by a neighbour over a week ago – they appear to have kept well!

And look at this item of unsolicited unaddressed post we received…

So where are we with regard to the myeloma well, as a nurse said when she was asking me what the consultant said this afternoon, ‘so really everything is still up in the air’ and basically it is.  I saw an oncologist this morning regarding radiotherapy on my arm, as I thought, but she also mentioned it for treating the myeloma in the spinal fluid.  Chemotherapy injections into the spinal fluid would have to be put on hold whilst the radiotherapy was taking place as the combination would be too toxic.  The doc suggested radiotherapy to either my skull or my skull and spinal cord, I opted for the latter however do not have to make a final decision until later in the week.  There could possibly be one injection before and then they could be recommenced after.  I’ve opted to get a bone marrow biopsy done tomorrow, well I guess that would be today now, Tuesday anyway.

Anyhoo let’s just cut to some good news. Yes we do have some!  I asked about starting overnight peritoneal dialysis today and the PD nurse came for a chat.  Following on from a conversation he’d had earlier with the renal consultant when she came to see me it turned out that they thought the frequency of the PD could be reduced, either by doing it times a day for seven days a week or four times a day but for less days.  I’ve opted for four times a day Monday, Wednesday and Friday with nothing on the others other than draining the overnight fluid off.  I asked B for his opinion when he came in and he, after initially stating that it was up to me, said that Tuesday, Thursday and Saturday would be more practical – and he is of right of course.

I got swabbed today as I’ve been a bit snotty, yesterday and this morning, and may not have thought anything of it but for another couple of patients coughing last week.  I was told it was nothing that should concern me but we’ll see.

The internet is a wonder thing when it works right – I won’t say how many times I tried to post this last night but it wouldn’t play ball.  Hence me sitting here now having my breakfast in my usual half asleep daze thinking ‘Oh yeah I couldn’t keep my eyes open so I left it!’

I really didn’t mean to go on this much and really just wanted to let you know I was still here and actually feeling pretty good.  I did mean to share this last thing however.  I learned something today.  I learned it as I went for a wee just as B arrived back with my singapore chow mein from across the way.  I whizzed (get it whizzed) to the toilet and in my haste to get to the grub was in ‘wee position’ before I took full account of my surroundings.  In fact I was mid wee.  What I learnt was that if you are mid wee and notice something unpalatable on the floor at the side of the toilet then the natural reaction to flinch away from ‘the something’ kicks in before the reaction to ‘stop weeing’!!!!!!!  Fortunately I had plenty of jim jam bottoms.

*  cba – can’t be a&sed

It’s a dog’s life by Buddy

When P took me to the Doggie Dermatologist in September she was asked where and what my bedding was.  The answer was that I have my mini duvet mat in the lounge, in addition to either settee but not P’s chair, and it is a mini duvet – the cover keeps getting smaller every time it’s washed!  I also  have a less mini duvet mat in the hall slash dining room, a basket with knitted blanket in the ‘library’ (because there’s a lot of books in there – I don’t mean the bathroom) and of course I get to share the big bed too.  I don’t have anything to lie on in the kitchen which is okay because I can lie on the dining room one and keep my eye on things while I’m out of harms way and I don’t have anything in the bathroom which is fine by me ‘cos I don’t like to hang about in there for too long in case someone decides I’d like a bath!

The one room that is a big omission is the second bedroom or as it’s commonly known P’s sewing room.  I have nothing.  It’s all hard flooring and if I lie on the landing carpet I can’t even see  in.  It’s shocking considering I’m supposed to be spoilt.

So a small furry family member has to do what a small furry family member has to do and adapt to whatever is available…

Of course it contains clean washing I’m not going to get in one holding dirty laundry am I.

B wasn’t too impressed and took my bone and put in the my basket.  I went and got it and came back.

It may be a bit snug but it’s comfy.

They still haven’t taken the hint and sorted me something out.

At least some members of the family are more in tune with my requirements – we’ve all, I was specifically mentioned by my own specific name,  been invited to Auntie Ann’s for a roast tomorrow which means I’ll get one too!

Help

To cut a long story short – actually I don’t need to do that since it’s a really short story involving a couple of etsy conversations since Wednesday.

I have the opportunity for me and my Myeloma Buddies to maybe appear in a UK crafty magazine, possibly in the bottom left hand corner of page 82, and need to send in a pics of me and the Buddies plus 50-100 words about why I support the specific charities.  Which raises two issues – what to say and what photo of me to send ie, with or without hair!

There’s only a small fee involved – just kidding – no money is changing hands although I am still waiting to get my 561,000 bing bongs from the guy in Gambia who I sent my bank details to.  That might have been a mistake as I’m starting to think that might be the country where they need a wheel barrow to carry the coinage needed to buy a loaf of bread.

As I was thinking about it this morning for the first time really, I only got the email on Wednesday, I started thinking ‘I’ll have to count the words myself’ as I use wordpad on the netbook which is a small step up from using an electric typewriter with built in correction ribbon – but I don’t use it enough to justify forking out for Word.  Then I thought ‘If I type it in wordpress that will count the words for me’ and that’s when it dawned on me that if I did that I could publish it as a post and ask for your opinions.  So here it is…

In 2009 I was diagnosed with multiple myeloma, an incurable but treatable blood cancer.  It generally affects older people, 50% of myeloma patients in the UK are over 71, but is unfortunately increasingly occurring in younger ones.  I was 39.  It’s only in recent years that the most advances have been made in myeloma treatment and two of the charities involved only with myeloma in promoting research, providing information and offering support are Myeloma UK and the International Myeloma Foundation (IMF) – both of which are excellent.  I realised that I could FUNdraise (to quote the IMF) by using my crafty abilities and started making the Myeloma Buddies which is fun.  Although by the time I’d made 100 for Myeloma UK I did need a lie down at the sight of orange yarn.

There’s 127 words so feel free to add, subtract, amend or just generally comment.

Fortunately with regard to the photo – I don’t have to rely on B and his ‘The pic is adequate if you can tell who it is’ approach as I’ll be seeing Auntie Ann tomorrow.  Oh, I do have another question – make up or no make up?

I also have another issue but its okay I’m not asking for help on this one and its on a par with ‘Houston we have a problem’.  The peritoneal nurse visited yesterday whilst I was having dialysis to flush my line and change the dressing.  Whilst chatting I mentioned that Bud had kicked me in the side that morning.  It’s a little quirk of his to kick out his back legs whilst lying at the side of you, fortunately he only does it occasionally but you certainly feel it – which can be verified by B, Auntie Ann and Chris – all of whom have cried out when its happened to them.  The nurse said ‘You shouldn’t have dogs in the room when you do the dialysis’.  This is due to shedding hairs and skin – in a way similar to dandruff but with particles so small they are not visible to the eye.  Well I was planning on doing the dialysis at night whilst in bed – the very same bed that I and less frequently we share with Bud!  Maybe I do need help with this as I’m not going to be the one to tell him.

Happy Bud-day by Buddy

Hey it’s my birthday today.  Well my new birthday.  Since I joined the Kilgallon family on 9 September 2010 and was about 18 months old B thought it would be a good idea to add six months to that so my birthday is today.  It’s just as well it’s not tomorrow as that’s my Anti Pat’s birthday.  We call her that because her name is Pat and she’s frightened of me and all other dogs so doesn’t pat me.  Although she did once nearly do it by accident which made Paula laugh.

Here’s a video that P took of me opening my present from Toni who’s such a little sweetie.

I love it and so does P.

I got these three rings from B and P.  I think the secret is I need to get them apart.

This is a nice shot of my derriere as I hastily left my mat and present at the sound of B rustling something that would produce food in the kitchen.

Sometimes it was hard to decide which present I wanted to play with.

See…then I went back to the teddy.

And then I went back to the rings.

And then I bite the teddy’s bottom and it started to leak.  I like it when they do that.  P says she is going to stuff the white fluffy bits back into the body so I can do it again.

I crashed out after – all that disembowelling takes it out of you you know.

Peritoneal Dialysis Part 2

Bud had rump steak for his breakfast so I think we can safely say he felt better today. He did throw up last night just as he was heading for his pre-bed wee. If I’d been quicker I could have got the kitchen roll underneath it. Fortunately B was quicker at passing me the sick bowl after my first mouthful of food at tea time. I then got a look when I answered in the negative to the question ‘Have you had any anti-sickness today?’. I had felt a teeny bit ropy at lunch but it passed and I was able to carry on with my watercress bap so I thought I’d give the tablets a miss.

So back to the PD –

the chance of infection does increase with the use of PD as compared to the use of a neck line. The glucose rich fluid and its warm temperature is kinda a holiday heaven for bacteria. Infections however are a risk with any line and the antibiotic line lock used in the renal line reduces the infection rate by 80%, these locks aren’t used with Hickman or PICC lines so by that comparison they would also have a greater incidence of infection and I wouldn’t hesitate at having one of them. The glucose fluid isn’t as sweet as the one previously used

baths are out as sitting in dirty water isn’t good for the cleanliness of the line. Some people do have very shallow baths but where’s the fun in that? Swimming however is not only allowed but encouraged. A waterproof dressing is popped over the exit/entrance site (I can’t decide if it’s where the line comes out or goes in) and then removed and showered down as soon as out of the water. The chemicals in the pool keeping it clear of bacteria – but what about other people’s wee?

the line itself is inserted under either general or local anaesthetic. I said that I’d prefer local. It’s not that I’m looking forward to it but I can’t say I’d be head of the queue to voluntarily have any type of line fitted. I’m okay when it’s happening but get a tad anxious before hand – more the thought than anything. However with the local there’s the added bonus of IV tranquiliser which will be a first and I understand that general generally carries more complications than the procedures it’s used for

PD is only recommended for five years. Someone has been having it for 12 but this has been his choice and he is aware of the recommendations. Apparently it came to light that it can make things inside squishy and more prone to infection after a certain time so a time period had to be be put on it and it was five years

if the line gets infected then it’s a case of antibiotics, removal of the line and then a new one can be put in approximately six weeks later

and the final consideration is storage. A 30 day supply of the bags of fluid amount to about 6′ x 4′ x 4′. B has suggested they go in the garage which would be acceptable or a shed will be provided to go in the garden. The only thing being that if the weather was really cold a week’s supply would need to be brought into the house as the machine doesn’t like cold fluid. B is also now wondering if we can get two weeks’ worth delivered direct to wherever we go on holiday as he doesn’t think there’d be room in the car for us three, out luggage and the boxes. It has been suggested that he just stick a trailer on the back of the car – not by me – and that went down like a lead balloon

So the nurse has added me to the list and I’ll wait to hear about getting the line put in and then once it has settled and healed round the fuzzy bits that secure it I’ll spend up to a week being showed at the hospital how to do it both with the machine and manually.

I can’t wait, I’m already thinking ‘Will I sleep tonight?’ knowing that I have to get up early in the morning. I’d need to call into the Blood Day Unit for blood tests as required whereas these are taken on dialysis now but that’s no hardship and I know that if my haemoglobin was 8.0 as it was on Saturday I’d get some blood that day, on renal however it was reviewed by a doctor and I may or may not get some tomorrow depending on what they say then. (They don’t routinely transfuse they tend to try stimulating the body’s production – which doesn’t provide the nice quick fix of getting some fresh HB rich blood.) The HB level certainly explained why I felt so listless on Saturday morning even after a nap. I didn’t do much else for the rest of the day but I have felt less tired yesterday and today – maybe because I knew so haven’t pushed doing anything but did manage to go for a walk with B and Bud. My platelets had also come down to 101 and my neutrophils were 1.6. B was a tad worried that my counts had gone down instead of continuing the upward trend.

Yesterday I had a couple of low grade temperature readings 37.6 degrees celsius (99.68 fahrenheit) and 37.4 degrees celsius (99.32 fahrenheit) from morning through to afternoon but by tea time it had settled back to 37.0 degrees celsius (98.6 fahrenheit) and it’s been fine today. Where my line goes in/comes out the site has been a little red but I had it swabbed two weeks ago and nothing showed up and it’s not changed since.

Hopefully I’ll get a couple of units of blood tomorrow and be full of beans by Wednesday.

Oh, and when I said Bud was feeling better – he is but it’s done nothing for the odour he’s been producing – we’re lucky it hasn’t made the paint peel.

Peritoneal Dialysis

After flitting round making sure the house was reasonably presentable for the PD* nurse she came in through the front door, stopped briefly in the hall/dining room and then we went through to the lounge. This was without venturing anywhere near the kitchen or upstairs at all. Mind you, you could guarantee that if I’d not put things away (like B’s socks which got me whinged at – as well as his car he’s precious about his socks, although pointing out that the ones I’d put away had gone onto piles of the same logo appeased him somewhat) she would have been checking under the bed and coming face to face with the extremely dusty barely used Pilates machine.

From what this nurse and the one from Thursday said this is what happens with PD –

a cannula is inserted into the peritoneal cavity – gulp! Cannula – sometimes irritating pointy thing that can make can make your toes curl that goes into the back of a hand or by the time those veins have been tired out somewhere in the forearm or crook of the elbow. But no, the similarity ends at the name it’s a very soft plastic tube with a coiled bit at the end (which is more effective at keeping it in place than a straight piece) with lots of irrigation holes in it and two fuzzy wooly bits that encourage tissue to heal round it – one sits in the abdominal muscle and the other just under the skin. At the end of the outside bit there’s a plastic end with a tap (vision of something like the tap on a beer barrel or box of wine) which twists to open the line and has a screw cap on the end which covers a bit you DON’T TOUCH. The end can be secured when not in use round the back or tucked into a bra – well if you’re female or would it be more politically correct to say ‘well if you wear one’

the peritoneal cavity is then filled with fluid. This fluid then through a process of osmosis (a word I learned from the list of 100 questions our school chemistry teacher, I think he may have been a professor, had the class learn and randomly tested us on) is able to filter toxins

the fluid can be removed manually four times a day or the process can be done overnight by machine. If it’s done manually about two litres of fluid sit in the abdomen all the time and are swapped for fresh after getting up, before going to bed and twice in between at four to six hour intervals. Needless to say I said I’d prefer the overnight method as this would leave my days free but both methods are not exclusive and can be interchanged to suit. The machine is quite quiet but does bother some people – so I think that means that Bud and I should be okay but you can bet it’s gonna bother B

PD is gentler than HD in that because it removes toxins every day there is no build up between dialysing. Whereas HD produces a saw tooth effect ie, clear out, build up, clear out, build up, clear out, build up, build up

one of the big factors is that PD can preserve any existing kidney function whereas because HD is so efficient at what it does the kidneys kinda go ‘well we don’t need to do anything’ and stop trying. So now would be a good time for me to move over while mine are still doing something toxin wise and of course I’m back to weeing again – goodness knows although I think I’d deal better with a fluid restriction this time I wouldn’t necessarily like it

another big factor would be a renal diet doesn’t have to be adhered to however I don’t follow one at the moment anyway – not because I’m being naughty but because I don’t need to as the relevant levels such as phosphate and potassium aren’t high

I’ll have to share the rest tomorrow as Bud’s had an upset tummy today and has been indicating that it needs rubbing and it’s a bit difficult to rub with one hand and type with the other. Bud’s tummy has been a bit temperamental since he joined the family, indeed I recall him eating grass the day after he came home, and we have mentioned it to the vet. Usually once he’s ‘been’ it settles down but not today. Indeed when B went to work we did our usual routine of giving him a kiss and a hug on the kitchen door step – well I kiss and hug him and Bud stands at the side of me waiting for his cu-tch (little tickle) and then we stand at the porch window and wave as he drives off to earn us some some pennies but not tonight. We both left the kitchen but I arrived at the window and Bud went and got back on the settee where he’s stayed since. But where he would usually settle and only shift occasionally he keeps moving round like he’s not completely satisfied – I may think this is happening more than it is but he definitely keeps raising his head and looking not too happy and looking round if I stop rubbing.  He even turned down some rump steak at tea time although did wag his tail when initially offered it and the second and third time too kinda ‘I appreciate it but no thanks not right now’.

* PD – that would be how us in the know refer to peritoneal dialsysis, HD being haemodialysis. I personally have been in the know since Friday afternoon when I found myself using the terms during a conversation with B, prior to that everything was just dialysis.

Ripply Fish?!?!

My Creative Space this week was supposed to comprise a cardigan I’d knit for myself however it didn’t make it for two reasons

1)  I intended to model it myself but B was going to work by the time I finished it

2)  When I popped it onto my dress form to photograph it became blatantly apparent that it desperately needed blocking.  I have to admit it had been a little apparent before that but I thought that with the aid of a few strategically placed pins I could get away with it but that would be – NO

So the cardy is currently enjoying (hopefully) a wool cycle in the washing machine and instead we have the latest pram/cot (crib) blanket I’ve been asked to do…

It is again from Comfort Knitting and Crochet Afghans, is called Fish Ripple Pattern and is in a double knitting yarn.  The grandmother to be choose the colours which will  show up better when I take a pic in daylight.

I meanwhile had about three hours sleep again last night before today’s dialysis so I am expecting to sleep well tonight especially since B has accused me of overdoing it today – but we’ve a nurse coming out tomorrow to check out the house’s suitability for carrying out peritoneal dialysis (it was only arranged today) and B’s ‘It looks alright’ wasn’t satisfying me.  I mean okay I could just have stuffed the card making stuff back in the cupboard without finishing off my sis-in-law’s card and the paper bin under the desk possibly didn’t need emptying but the soil in the porch from a wayward plant really did need brushing up and whilst I was at it I might as well sort out the covers on the settee’s again, wipe down the kitchen worktops and get the bubble wrap out of the glory-hole while I was at it.  B took the cloth and vinegar spray off me before I had chance to clean the porch window (or rather Bud’s nose marks off the window) and did it instead.

However dialysis this way at home could cut out the problem of lack of sleep on the evening before dialysis mind you since it can be done during the night it could also keep me awake all night!  I’m now off to check on my washed cardigan there could be tears if it ends up like the tea cosy and then I’m off to bed where Bud’s already had an early night!

Other Creative Spaces can be found here.

Interesting Ears

Buddy went to see the Doggy Dermatologist yesterday for a follow up appointment with it being 12 weeks after he’d started getting his desensitising injections. As usual he didn’t disappoint and was the noisiest and most active dog there – ‘Talking’ at us to make his displeasure known and lying down for all of five seconds and then jumping back up to go under the chairs, whizz round our legs or pop his paws on our legs so he could ‘speak’ to us close up as we really weren’t getting the message.

There was a spaniel of some description quietly minding its own beeswax – actually it was sitting/standing on the plastic chairs next to its owner and Bud didn’t pay it any attention. A young lady arrived with a large black dog and B asked me what it was – I had no idea and the best I could do was say it looked like a BIG terrier but obviously that was no help, it turned out to be a Giant Schnauzer with very interesting ears – I asked – about the breed, Bud made enquiries about the ears which was so cute and funny.

Initially he didn’t really bother much about this dog, he did make a brief introduction but then went back to telling us he’d like to go but then a HUGE Newfoundland arrived and when the Schnauzer started paying attention to it (it had had a good Newfie friend until it moved) Bud decided he’d like to get in on the doggy action. Funnily enough he wasn’t too interested in the Newfie but was suddenly very interested in the Schnauzer and in particular his ears. Bud stood up on his back legs as this was the only way he could reach and started poking his nose in its ear. His owner said that a lot of dogs liked his ears. The next time Bud attempted it he decided there was an easier way than keeping his own balance and put his paws on the other dog’s neck – looking for all intents and purposes just like he was giving him a hug. The second time the Schnauzer thought this was too much and gave a little grumble, not much of one but Bud was being very familiar after all. The Schnauzer wasn’t too forceful however since when he lay down Bud didn’t hesitate to trot over and stick his nose in an ear without effort.

Fortunately we got called in soon after and Bud was able to hare around the vet’s consultation room off his lead. I’m pretty sure she didn’t believe us that he sometimes stayed still at home particularly as the nurse who Bud and B had been seeing for the injections had said how energetic he was. B popped him on the table and she snuck the injection in towards his rear end before he even noticed and he actually managed to stay on the table while his paws were checked, then B decided the easiest way to get him down was to let him go and he leaped onto the floor.

Everything was good and B decided that he’d take Bud back for the next injection at least. Well everything was good until we were waiting to pay and Bud cocked his leg up on the nice ‘free delivery’ display board. In the second before I poked B, as he was hold of the lead, Bud got a noticeable amount out but when I gushed about it to the receptionist she said it happened all the time. Indeed when I brought him back from out trip outside to let him finish off I noticed a puddle on another corner.

With me I’ve been having a bit of trouble over the past week and a bit with hand washing and a couple of other incidents which must be a result of the dexamethasone. It’s been bearable, only a shadow of what happened previously, and is probably worse because its brought back how bad it was last time (which was nearly three years ago) and which I couldn’t believe how much of the intensity I’d actually forgotten. There have been a few poo moments but I think its got easier today generally and I’ve still been able to knit every day, make butties and of course blog.

And today I accompanied Bud and B on their walk which slowed them down but Bud seemed to get quite excited about it and ran about like a loon and did a bit of barking at us, well mainly B, and he isn’t a barker – B and crackers, it turns out, being the only things he barks at, not the door bell . I managed it without a sit down which impressed B and I only had to ask him to slow down the once.

‘There’s nothing like a day out’

B was heard to say as we got back in the car today after going to Liverpool for our first kidney clinic appointment.  ‘Yes’ I replied ‘and that was nothing like a day out.’

I’d inadvertently cramped our dining possibilities by telling Auntie Eleanor at weekend that B would pick her up and bring her to visit this afternoon.  Since our appointment was 11.30 I didn’t think it was physically possible to get to the Asian restaurant that had been recommended, by a friend of Sean, eat and get back.  We’d only said on Friday it’s four months since we actually ate out and when we asked for my blood counts on Saturday my neutrophils were high enough to deal with bacteria laden restaurant food – though with all the spices potentially involved it would probably have been a safe bet anyway.  I’d had a GCSF injection on Friday and my neutrophils on Saturday were 12!  Yes 12 – normal range is 2.0 to 7.5 and I don’t know when mine have ever been near the higher end of this so it took a bit of digesting before I remembered the neutrophil boosting injection.  As it turned out I’d decided that I’d rather see Auntie En than eat out on this occasion so I wasn’t waiting for din dins.

I’d thought that after a long day yesterday we’d just nip out to the Royal today, have the appointment and get back home in under three hours.  Yesterday no ambulance transport had turned up by 7.00 to ferry me to dialysis so I rang and they confirmed that the team had left and I was on the list.  They then rang back at 7.30 and said they’d sent a taxi.  In the end I was only hooked up to the dialysis machine at quarter to nine so finished at quarter to one but didn’t have to wait that long at all for a lift home.  The trip home itself however involved a visit to a nearby hospital to collect and then drop off another patient and then a stop of an hour and a half at another hospital as the patient there couldn’t be located.  They or rather we, went to every conceivable collection point.  It turned out that another team had collected her hours ago but no-one had told our crew that she was no longer their responsibility.    At least I know that if I go AWOL at any point they won’t leave without me.  B had decided that he was going to come get me and when I rang him to say that we were finally on our way it turned out he was nearly there – although he didn’t tell me that.  The first I knew was when we pulled onto the main dual carriageway and stopped at traffic lights and my attention was caught by someone shouting outside.  My attention was peaked further as I thought ‘I know that voice’.  B was stopped at the side and was shouting to the driver ‘I’ll take Paula home’.  They pulled over at the nearby bus stop and one of the ambulance guys carried all my bags and coat to the car and explained/apologised to B.  So from being ready at just after six AM it was half three when we got back home.

As it turned out today we did do it in under three hours.  Well, we did the trip to the Royal and the trip home but we didn’t get the clinic appointment.  No, it wasn’t me, I had the right date/time.    We’d waited for a bit in a busy waiting area and then decided we’d go for a drink.  The receptionist said we should check with one of the nurses as there was only a few in front of me in the clinic I was in.  The nurse asked what time my appointment was (11.30), said that they were up to quarter to ten and gave me two free tea/coffee/cup of water tickets.

We had our free cup of tea/coffee/cup of water and in fact I hadn’t quite finished mine when our buzzer went off and we headed back to the clinic.  The receptionist said that the doctor had just left and the nurse would have a word with us.  As it happened a very apologetic health care assistant came over and explained that she’d weighed me and taken my wee sample but had put my file in the transplant pile rather than the renal pile and the consultant had gone without seeing my notes but they were going to see if one of the registrars would come down and see me.  About five minutes later we got called in and told that the registrar was in a meeting but either someone could see me on dialysis tomorrow or we could come back next week.  B is back at work next week so we opted for tomorrow.  I said ‘Well at least we got a free cup of coffee’ and she said ‘Well you would have got that anyway’.  WHAT! – we’ve never had a free cup of water let alone tea or coffee at the blood clinic and we have an ‘ology in waiting there.

On the upside all this transportation has meant imposed craftiness time and indeed after making a denim and white stripped Myeloma Buddy for a member of the Royal catering staff a friend of hers asked for two too…

and the catering lady asked for something else for her first grandson who is due in May.  She was telling me that her son and his girlfriend are going to give the baby her younger son’s name as a middle name since her younger son had died a few years ago at 19 after being ill since he was six weeks old.  You know that old saying about treating people considerately because you never know what things they are dealing with is sometimes so true.

Anyhoo, we opted for a little aran type jacket age six to nine months which I started yesterday…

but there’s a boo boo! I noticed something was amiss when the pattern on the front wasn’t finishing at the same point as the pattern on the back.  Now I had trouble working out where exactly I’d gone wrong and I’m pretty sure it’s not that noticeable and I could probably get away with it but could I live with that?   Probably not.

And here’s a photo of Bud that I’ve been meaning to take for ages but have never seemed to have the camera to hand at the right time…

he starts to get off the settee and then just stops with this front legs on the floor and back legs, stretched or bunched up, or in this case 50/50 still on the cushion and then just stands there for ages.  His Auntie Chris told him he looks like a dork but I find it quirkily endearing and it’s not like I’m biased or anything.

Zzzzzzzzzzzzzzzzzzzzz

SLEEP – Don’t you just love it? I know I do. Although B would probably say that I am fonder of it than most. I think I have very nearly caught up with the sleep I missed whilst on my short Royal-cation. I can’t remember having so many late nights – what with the dialysis and then the ‘deep clean’ on Thursday – I’ve never ever had such a late night out. I’m sure I could easily become nocturnal I certainly function better at night that in a morning.

We (me and two fellow patients) were relocated from the ward to the waiting area of the day unit when the patient who’d arrived on Tuesday night started having oxygen and blood pressure problems during a plasma exchange. We were camped out in the waiting area in our jim jams and with accompanying attachments (in my case two bags of chemo, my netbook and knitting) by about noon. It turned out that one of the people wearing clothes was actually waiting for the bed of the fellow patient due to go home that afternoon but who was at that moment in time still connected to a bag of blood which resulted in her companion telling a number of people over the phone that ‘No, she hasnt got a bed yet. The woman whose bed she’s having is currently sitting opposite.’

By five I’d decamped to one of the day unit treatment rooms, one fellow patient had managed to successfully get discharged and the other had wangled a side room all to herself. It turned out that she had bug related diarrhoea and the entire room needed cleaning. This entailed my stuff ending up in bags in the shower room while everything, including my cabinet, was deep cleaned (our washing powder smells very nice apparently as per the nurse who packed). Initially we thought I’d be back in the room about eight. Then the sign on the actual door said ‘No Entry until 10.30pm’. By eleven the night nurse had chased up where the cleaners were as the room needed tidying. Seriously it was a mess. I’d thought it would just involve making the beds but chairs and tables were all piled on the beds. I was tucking into a late night Pot Noodle at this point as I couldn’t get comfy with my back on the comfy recliner I was on by then. It then transpired that the button on the deep cleaning machine hadn’t been pressed and it needed to be done again – actually ‘again’s’ not right is it – it needed to be done!

I was provided with a bed in the day room but just couldn’t nod off despite looking forward to going to bed (a term that always amuses B when I use it when in hospital) from getting up that morning. I ended up watching two films and looking at the clock for the last time at four am. I woke up at ten to six as the night staff were about to roll me up the corridor to the ward. It was just as well that I was discharged on Friday as the new patient, even though she said she’d had two hours sleep and was really tired was waaaaaaaaaaaaaay too perky Friday morning. I thought ‘HELP! I’m not going to be able to cope with her first thing in a morning after a good night’s sleep!’

So I’ve been getting flashy lights and other visual disturbances, typical of a migraine, since last week and initially thought this was due to the unusual sleeping pattern but seem to remember reading somewhere about steroids and migraines. I’ve only had a small dose (80mg over eight days) and they finished Friday so if it is related hopefully it should abate shortly.

Generally other than being part comatose I’ve felt okay. I’m still taking anti sickness tablets (Ondansetron and Cyclyzine) and they certainly seem to be doing the job. I’m also being really diligent with the mouth care (mouth wash and Nystatin about four times a day) and so far my tongue is a teeny, tiny bit tender – resulting in me occasionally feeling like I have a lisp – and it looks a bit furry.

Speaking of tender, I have felt tender all over. Kinda like muscle soreness without the benefit of exercising. It’s fine unless I’m touched! I do remember feeling like this when having Doxorubicin this time last year. It’s a lot easier today but I admit when I was half asleep getting out of bed yesterday I gave myself a little start when I thought my dialysis line exit site was sore and then I remembered that everything was sore.

I managed to get my pre Royal-cation ‘To Do’ list done except for one thing – Auntie Ann and Uncle Ray’s Christmas present. What’s frustrating is that I know exactly what I want to get them but can’t find it. Anyhoo one of the items on the list was fabric for backing my Christmas embroideries. I found just what I wanted on ebay…

It arrived last week and B opened it.

B: ‘There was another package.’

Me: ‘Was it fabric?’

B: ‘Yes. Is it cleaning cloth?’

And look even Bud’s not impressed. Mind you with the migrainy eyes I don’t think I’ll be tackling the stripes any time soon.