Day 3: Dec 31

Still on dilautid for mouth and throat pain. It works fairly well but forget about walking today. I will figure out something tomorrow. Doing additional breathing exercises to prevent pneumonia. Days are passing way too slow for me, I gotta get busy! Had sooo many naps today, due to pain meds, but that’s ok.
White blood cell count I think was .01 today. Can’t wait for them to kick in!!!

Oh hey everybody, Happy New Years Eve!!! I might see some poppers out of my window tonite.

Me Balls are too Big

I thought it was about time we had a craft related post.  I’ll start with what I did while on my five week Royal-cation.

I did 20 fancy crocheted squares – I had 63 to choose from in the booklet which was just as well as there were a number I undid, either because I had too many or too few chains left at the end of the base row or it didn’t turn out the right size.  I must apologise for the picture quality but I took some of them on my phone.

I had plenty of yarn left over from making the fancy squares so I made another 45 (I already had five made at home) for Share a Square.  Shelly was a little short of contributors, as every square in an afghan should come from someone different, so it was suggested that if you crocheted them you could put a friend/family member on the tag that accompanies them.  So I did this batch from my Auntie Ann  – needless to say I had to handwrite the tags.

This was one of the squares I’d already done.  This and the other 45 squares are in Red Heart aran/worsted and this one is called Bikini.  I have  to say I was very impressed with Red Heart’s service.  I ordered on a Saturday night, the order was processed on the Monday and I received it Friday – all the way from the US.

Now we’ll get onto the subject of big balls and me being a tad (read that as very) slow.  I selected some yarn for a blanket from my local yarn store over the phone and a friend picked it up.  B brought the book in I needed – Comfort Knitting and Crochet Afghans and off I went.  I have to admit that the last week in the hospital I didn’t do any knitting at all.  Yes, I felt somewhat crappy but if I’d had something to do that didn’t involve four colours in a row I might have been more inclined to do some but I had already managed a fair bit…

Plus the balls were all 400g and actually seemed to be getting bigger rather than smaller, as they loosened up, so it was really a mither to untangle the yarn part way through.  I started knitting again on Wednesday and saw the light – why didn’t I just wrap smaller balls to make it easier – Doh!

The pattern itself is really clever, well I think so, in that you start with a straight row of stitches…

and because of the decreases in the middle it forms a square when finished.

On Tuesday this week I decided I’d like to do some crochet and thought I’d start a blanket for the creche/hospital in South Africa that our GPs’ receptionist, and husband, are involved with using the bag of tiny balls that one of the other receptionists gave me.  I also had quite a few bits hanging about myself.

I crocheted them together as I went along otherwise I would have crocheted round each square in the same colour, say cream, to unite it more.  Now my sister in law, Gill, rang on Tuesday to ask if I had a crochet hook that she could borrow for some double knit yarn she’d bought.  She’s never crocheted before but is having trouble sleeping so she thought it might be an idea to learn so that she could crochet when she’s awake in the middle of the night.  She’s left handed but had found an instructional video for left handed people on the internet. I said no problem, I have lots of crochet hooks.  Turns out I only have one 4.5mm which was the size I was using for the blanket so after I’d lent it to Gill I needed something else to do in dialysis on Wednesday, so I did these…

They are in a chunky yarn, which I wouldn’t usually use, but was given two bags full by a friend from Armchair Yoga so I thought I’d use that as it would crochet up quickly.

And finally, I actually finished my second Stephen West Knitalong shawl, for a friend for Christmas, just before I went into hospital.  I hadn’t blocked it though I had left it to dry flat and I was so annoyed with myself on Christmas Eve.  Chris called round with my present (and we had a chat with me in the vestibule and her in the porch – as she had a cold) and I hadn’t had chance to block the shawl.  After she’d gone I went upstairs and when I looked at the shawl it would have been fine – I could have just wrapped it up.  Double doh!

I have to say I really like the colours particularly as I wasn’t too sure how they would look together.

And one little departure from crafting – when I went to dialysis yesterday both the doctor and dietitian called in to see me.  The dietitian was asking me how my mouth was and I said it was loads better, the only thing that really made it sting was the potassium tablets I’d been given to take when I left the hospital.  It turned out that my potassium was too high on Wednesday but this would be the reason and since I took the last ones on Wednesday it should settle back down.

My phosphate had also been low prompting a phone call from one of the doctors on Monday afternoon but since I didn’t feel nauseous and was eating it wasn’t too much cause for concern and it had gone up a little by Wednesday.

The other thing was the 24 hour wee collection I’d taken in on Monday – 1.8 litres!  Just a tad different from the 200 to 300ml I was producing at first.  When analysed it didn’t have that many toxins in it which would have showed that my kidneys were recovering and dialysis could be stopped at some point,  but it did have some.  The doctor said though that there is still a little hope that they will pick up and I need to do a monthly collection.  It was just as well that I hadn’t got my hopes up but then again you never know, stranger things have happened at sea.

Day 2: Dec 30

Day 2: Dec 30
Fighting major mouth pain right now and just cant eat much. Just got my first shot of delautid, not sure what’s gonna happen …

Oh yeah, that worked. I can swallow now
Happy times!

White blood cell count: 0.6

Day 1: Dec 29


Woke up nauseated but got meds for it. Mucositis is making it haerd to eat also, so mouthwashes are necessary. I can’t taste anything, so I kind of depend on Boost milkshakes.

On a downward trend but I do feel ok at times. I did walk down the hall today, and mom is on caretaker duty again. Sis left yesterday, did a great job.

A time for consideration

After a busy Christmas, we have got the house to ourselves again and that tends to lead to a bit of time to reflect.

This time last year, I found Christmas and New Year really really tough. As much as I knew that my transplant was unlikely to be an issue, you can’t help but worry going into something like that, and we just didn’t know how the pre-transplant treatment would affect me, or how long it would take me to get over the transplant. I remember writing Christmas cards and feeling fairly bitter with every one that I wrote Happy New Year in. Christmas was tricky as I felt so ill. And New Year. Well that was horrendous. We went to a party and both of us just knew we had to leave before midnight as I couldn’t pretend to be happy at midnight.

But this year feels very different. Despite being ill, I feel like I’ve not found Christmas emotionally draining at all. In fact, it’s actually been pretty enjoyable. And I don’t dread New Year either. Nick and I are just going to stay home and have it together, but I feel like there is still lots of opportunity for 2012 to be a good year. Assuming I can shake all the bugs and illnesses I’ve had recently anyway! I hope I still feel like this in a few days time, but it’s good to feel like it now anyway.

So I’m looking forward to a few days of playing on the Wii with the kids and having some fun. I don’t often do that and we’ve got a couple of days with nothing planned…..bliss!

Christmas on hold

Ok, so I’ve held off posting for the past couple of weeks because I am so conscious that all I ever seem to do on here is winge about how rubbish things are going. And the last two weeks have been pretty awful. But at least now, I’m not quite as depressed about it as I was a couple of days ago, so whilst I might not be full of Christmas cheer, I might not make you totally miserable

So what’s been going on? Well, starting nearly two weeks ago, I came down with a terrible fluey feeling. I was totally wiped out, felt achey all over and just couldn’t stay out of bed. I’d hoped it would just be a 24 hour thing, but it looks like someone has other plans for me as I’m still ill now. I’m not quite so bad, but have basically been housebound since then, Christmas shopping is on hold (thank god I’d done most of it beforehand!) and none of the local christmas cards have been given out.

I did go to the hospital on Tuesday to get checked over, but with no temperature and no other cold symptoms, and after xrays and an ECG, all they could say was that they felt it was viral. On Friday the results for that came back negative. I can’t tell you how awful that felt. I just wanted to know what was wrong with me. Apparently it could still be viral and be something they haven’t tested for. Hmmm. So I’ve been made to promise that I’ll go back down on Monday if I’m still ill with it…..looking sadly possible. It’s just not ideal as I can’t really expect Nick to take time off work, but it isn’t particularly safe me driving a 3 hour round trip on the M25 when I feel so bad.

I feel pretty terrible because the poor kids haven’t been able to do any of the things I’d planned for them. I’d been so organised so that we could do loads of stuff in December, and to date that has hardly happened. I know that they’ll forget pretty quick, but I sort of want them to remember Christmas as being a fun time – I mean, for gods sake, it’s the only time I get the arts and crafts stuff out in the year! lol!

Anyway, today Nick has taken the kids down to MY family Christmas do while I stay at home sat on the sofa. I’ve felt ever so slightly better today, but am flagging now so perhaps an expectation to wake up and it all to be gone, is slightly unrealistic. I have to remember that I have a compromised immune system now, and that even though I might have the same number of white blood cells etc as the rest of you, that they aren’t quite tip top in quality. So fighting infections is tougher. And recovery is going to be longer. But it has really drummed home to me for the first time, how important it is that I stay away from ill people wherever possible. When I catch something, boy do I catch it!

The only other thing to say though is how great Nick and the kids have been. Nick was ill too last weekend and has had an awful hacking cough this week. But despite that, he has managed to go to work, sort out the kids for school, cook, iron and do the packed lunches! As my lovely friend and I would say…TLN (The lovely Nick) has been promoted to TELN – just add the word extremely!! I am so so lucky to have such an amazing friend as my husband. He is such a support to me, and deals with what is thrown at us in the most extraordinary way. As corny as it may sound, he is the thing that keeps me going through the thick and thin, and he is the person that pulls me back from the darkest depths when I need that. I love him to pieces and just wish I didn’t have to put him through it all.

So Christmas is still on hold and people might not be getting the homemade goodies from the kids this year, but hopefully it won’t be held against us. And crossed fingers, this horrible viral thing is going to slowly disappear this week so that we can have some time to enjoy as a family this Christmas.

Irene’s Journey

Welcome to my world! And boy do I have a world!! It makes my head spin sometimes. I am setting up this blog so that everyone that wants to keep up with my status can as I go through another one of Irene’s journeys. Exactly a month from today I will be starting a life changing allogenic stem cell transplant. That is I am going to try and grow my dear brothers stem cells as my new cells in my bone marrow. They are going to kill off all my cells (they are worthless now) and give me millions upon millions of his cells that will hopefully take up residency in my bone marrow. It is a long drawn out procedure but I report my progress here and you all can log on anytime and check up on me. I may not report everyday but I will try to keep as current as possible. You can leave me comments. I am still learning how to use this and I will be adding different things to my page. I will post pictures from time to time. The toughest part of this journey is the waiting and of course waiting to get strong again! Three months in Durham is going to run me bonkers!! How many movies can one watch!!? I will let you know because I will be watching a lot of movies and reading a lot of books. I can place my books on my IPad so I don’t have to cart too many of them with me.
So basically I am preparing for my transformation by getting as strong as I can be and of course preparing for Christmas. My favorite time of year! So sit back and enjoy my newest journey of my world! Again, welcome!

Why is it so complicated?

I had my appointment on Tuesday and things are still ok. My paraprotein has come down again from 3 to 2 – only 2 more and I’d be classed as being in complete remission! So that is all good. The only slightly unnerving thing is that my neutrophils are very low which means that I am really prone to infections and illnesses. Great at this time of year when everyone around is snivelling and snotty! So one plea is that now I know this, if you are coming to see us or visa versa, please don’t if you have an illness of any kind! I’d rather re-arrange. It is quite common on the drugs I’m on- nothing to worry about and just means they’d lower the dose if it continues. I suppose in the long run it could mean me being taken off the drugs.

But in terms of life being complicated, I am just finding it tough at the moment. I should be relieved and shouting from the rooftops about how good things are now, but instead I feel really low. I have thrown myself into things but am now shattered from that and feeling ropey again for the first time in weeks. I slept for 2 hours this morning and still felt terrible…it feels like when you are fluey.

So I don’t really know what’s going on or why. I don’t know whether to pull out of everything and just focus on the family, but I’m scared then it will remind me of what I’m living with. But doing all the voluntary stuff etc means I get stressed that I’m not looking after means home enough. There doesn’t seem to be a right answer.

Nick said tonight that he wondered if it was because for the first time since I was diagnosed, I have really had an insight into how our life may look in the future…that now I have had one transplant it is like a timebomb has started ticking. And funnily, I think that dream the other night really affected me. Stupid or what. For the first time in ages I just want to run away from everything and everyone, curl up in a ball and be on my own. And feel free to cry. I don’t feel I have been putting on a front ( until recently) but somehow it all hits me at once and then I feel awful like I have done today. The poor kiddies had me in tears in the car this evening and then saw me crying with nick later. Bless sam though, he came and gave me his favourite teddies to make me feel better- he doesn’t often do that for someone!!!

It is so weird knowing this cancer is likely to be back to haunt me. For so many there are cures. Or at least very long term remissions. Not with MM unless you are remarkably lucky. I hear of friends ahead of me in their journey and it reminds me of what might and probably will come my way. And sometimes it reminds me of how MM is such a horrid cancer to die from. How it is likely to be a long painful time….and I can’t bear that to be what happens to me or how the kids and nick remember me. I hope desperately we are many years off that though…..but please don’t go on about cures and research – I can’t tell you hard it is to hear those comments. In some ways I’d rather people said nothing at all.

A bit of a morbid post today. Sorry. Tired and feeling so miserable I just needed to get it all out.

Falling flat

I don’t know quite how to explain how I’m feeling at the moment. Maybe it’s all becoming a real anticlimax and that’s the issue. I just seem to be getting cross and frustrated so easily at the moment and I don’t know why. And worst still, I’m taking it out on the people I love the most….Nick and the kids. After all they put up with over the summer, none of them deserve this.

I am just so tired at the moment. My fault though. I totally overdid it with the tabletop sale and I haven’t properly stopped since. With that and only just having got over a cold, I’m pretty exhausted.

As I’m writing I’m thinking though. I have my first post-revlimid appointment tomorrow. I didn’t think I was worried about it; I’m not! But now I wonder if sub-consciously I am because this is how I used to be after I was diagnosed but before I started treatment – tetchy a few days before each appointment. Also, a couple of nights ago I dreamt that I was told I had relapsed! Now I know it was only a dream but I woke up pretty upset by it – one of those dreams where it takes a while to realise it wasn’t true. I’m not sure I can deal with this again every month. It is so horrid to feel out of control of my emotions. I’ll have to decide whether it’s bad enough to pull out if the trial and come off the maintenance therapy. I hope not. If I did and then I relapsed I’m not sure I could forgive myself for what I would have caused. I think I need to give it a few months anyway….and speak to them about whether revlimid can turn you into a stroppy cow (what a great excuse for everything if so!!!!)

On a happier note our neighbour had a gorgeous little boy yesterday. I got to have a cuddle with him today which was just lovely. Even sam seemed quite loved up with him at times. It is so good to have positive things to think about. We had my sister’s 50th at the weekend too which was just great. It was my second oldest sister who had come over from Beijing to look after the kids while I’d been in hospital. Luckily for us she and her husband had decided to come back again to celebrate it!! I’d gone shopping in Bicester with my 4 sisters on the Wednesday and then on the Friday we all went to Sutton where she was staying for champagne and a great Thai meal out. My brother joined us as did all the partners and I can’t remember as good a night for a long long time :-)

The other piece of great news since I last wrote is that another of my sisters is a match for me!! I have a choice!! Well the hospital do anyway!! I keep joking that they’ll be fighting over me now….lol!! It is great news as it takes the pressure off the others in the family who would have been tested but who have really good reasons for holding back. So we’re all really pleased with how it all is. Hopefully I won’t need them for a long time yet!!