Category Archives: Buddy

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!

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Still in my own bed

I’ve not managed to wangle a holiday at the Royal yet this week.  There wasn’t a bed available when I rang yesterday morning.  The young lady I spoke to said I should ring that afternoon or this morning.  I said that last time they’d just called me when everything was set up and she said that would be fine – which means I’m not mithering them AND I don’t have to remember to ring!  I know how could I forget but a little bit of distraction on the way to the phone and it’s next Tuesday I’m ringing in!

I do need to ring the dentist tomorrow.  I’ve got a check-up booked shortly but a tooth bothered me about a week ago – only a twinge but today I’ve developed a numb bit on my lip and chin and when I bite down my teeth feel funny.  I don’t know whether this is just me or its the same for everyone,  because I’ve never thought to ask before, but I have real trouble pinpointing where toothache is.  What I mean is the exact tooth and sometimes (not that I get it a lot but I did have a spell of it a few years ago) although the main pain is at the top it seems like the  bottom hurts – maybe that is just me.   I started thinking that I had a numbness in the right hand side of my chin last September at the same time I had the numbness in my thumb and down my right forearm however it disappeared shortly after – as they all did.  Even though the MRI didn’t show up any myeloma lesions in my jaw where the nerve that would cause it is located I just figured it was related however now I’m thinking that maybe it was a tooth infection that was cleared up by the antibiotics I got at the time so I better get this checked out just in case.  I mean how would it look going in for my next lot of chemotherapy and saying ‘I don’t need to get an infection while I’m in as I brought my own’.

In the meantime I got to go to yoga this afternoon (oh, and I had my last two stitches out today) which I can’t refer to as Armchair Yoga today as we actually did more that just the balance standing up – STANDING UP!  It was very nearly exercise – not really but it was as close to exercise as I get.  I would also point out that I was the only member of the group today who was under 60.

And yesterday I made a Buddy.  It needed to be a vibrant Buddy.  It was to be a get well gift for a lady in hospital and as flowers are no longer allowed the gifter (is that a word) wanted something bright to raise the giftee’s (what the heck it matches) spirits when she looked at it.  I mentioned a bright pink and that was acceptable and went with an equally bright green.

I just wasn’t happy with the Buddy’s mouth so I had to unstuff his head and re-do it.  I was much happier with the expression and I think he looks happier too.

I had a little assistant for the Buddy photography session.  My assistant would have liked to get to know the knitted Buddy a bit better.

 

It was after it was  requested that ‘by Easter’ was mentioned and I didn’t realise Easter was so close.  I didn’t think I’d get it done but as it is it’s looking like I might manage it  – once I’ve undone the cast off edge of the button band and cast off with a smaller needle because I’m not happy or even satisfied with the wibbly-ness of it.

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.

Hiccy Burpy to me

Hiccy Burpy was on a card I got a friend years and years ago – it featured drunken frogs.  It really amused me.  B says it doesn’t take much but I found this particularly amusing.

Its been a lovely bright sunny day

(photo does not do it justice)

B and I went to a friends for tea yesterday where I got a cake with four candles in it and a rousing rendition of Happy Birthday by a quartet – minus the one member of the house who’s actually in a choir.

We discussed going out for tea ie, I suggested we go to the one pub within walking distance, take Bud and sit outside – B thought this idea sucked as it was so nice we wouldn’t get a seat outside so we decided on an Indian takeaway, after neighbours and eldest nephew suggested newish Indian restaurant we decided on this, we didn’t know opening times, they weren’t open when I phoned, B and Bud got back from their walk and I suggested we call on the way back from dialysis tomorrow and have an Indian takeaway tonight!

Bud got to have the chicken tikka but everyone declined the salad

Here’s some other pics…

 

Yoga Frog – The Tree

After an inquisitive visit from the small furry family member…

it was a fallen tree – making him jump.  Bud did like the box too

‘I just caught it, it was trying to escape’

I felt bad taking a chunk out of Tatty Ted but he tasted yummy

Wonder whose legs those are

These were off Bud.  I tapped B on the arm nine times and asked if that was how Bud has requested them.  B looked at me quizzically – ‘Nine times.  After eight.’  Not as funny as I thought apparently.

New shawl, PJ bottoms and socks

Look I’ve got five o’clock shadow – not to worry we’ll get rid of that next DT-PACE

‘What are you doing?’

‘Come here my pretty’

 

‘Hey! That’s my behind – get your own.’

‘I’m not very happy about this – you know I don’t pose’

My sister in law is improving her crochet skills daily – like this tag.  It’s really funny/strange watching her crochet left handed.

Sheep – the source of hours of pleasure and not just for the Welsh

On Friday when Prof realised it was my birthday today he said ‘Well done’ and I nearly piped up ‘What for getting to another one?’ but although I’ve been taking the Thalidomide earlier (7.30pm to 8.00 pm) and this has made me perkier earlier in the day, I still need a bit of a run up to get to smart a*se mode.

Then today when all three of us were sitting on the settee and I’d finished opening the presents and cards I had at the time I sat there and started getting teary – I did leak a little bit.  B asked me why I was crying, was it because of the cancer.  I said no.  He said ‘You wouldn’t be crying if you didn’t have myeloma.’   When I could trust myself to speak without bawling I said ‘I know no-one knows what will happen and lots of people don’t make their next birthday but I’m just so grateful that I did.’


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.