April 18, 2012

Clinical trials day 2

A long day yesterday not home until teatime. First dose of drugs given at hospital at 2-30 the  second at home at 9.15pm. Supposed to be 12 hours between and not too near bedtime as it may keep Mr Mog awake. However on reading the bumph that came with it it said leave least 6 hours between doses so we compromised at 9.15 Good nights sleep except that Mr M kept getting hot sweats, very hot sweats.
New regime started of drugs 7am and 7pm which hopefully will not impact on sleep. He has been fine today thankfully.


April 17, 2012

Day one drug trial

Been at hospital almost all day. Lots of blood taken, bp etc. forms filled in and now ,late afternoon ,first drug dose taken. Now a wait for half an hour for more bloods to be taken then we can go home. A long day for mr Mog and despite books, knitting and iPads the time has dragged. It will be good to go home and I suppose to know that the next stage of cancer treatment has been started. We have another appointment in 4 weeks time for progress report.

April 15, 2012

drug trials

Hi BW, I am not sure why it is called a millennium trial I must check and see how long the trial has been going. Yes we do have a dedicated nurse and we were given her direct number to use.  Mr Mog will be seen each month and have scans every 2 months while on this trial. A friend on Ravelry informed me that they can work round stuff such as the infection so it wouldn't necessarily preclude Mr Mog from going on the trial. My trouble now is that I've been googling(as you do) and some earlier trial results are in. It seems that of 26 on an earlier trial, 23 experienced side effects. I haven't told Mr M yet, I need to do more research and at this stage I don't want to be giving him possibly false information if for example they have altered dosage or something similar. He is worried enough over going into the trial. But as I wrote earlier they really haven't given us any feasible alternatives.

Rheged WOW

Wonder of wool and the art of stitch if you wondered what the title meant. But also Wow  as in what a great day we had. We very nearly didn't go because of  Mr Mog being quite ill yesterday.  A dreadful night was had by both as he really couldn't keep a settled temperature and varied from freezing with shivers to red hot with shivers.
However this morning he was insistent that he wanted to go to Penrith to meet up with many friends who were also going to the fair.
I drove, the first time in quite a while and although it was quite a nervy journey I managed it ok:)
This was the first time we had been to Rheged and what a surprise it was, far bigger than I expected. From the minute we arrived we were surrounded by friends and fellow yarn addicts. It was wonderful to see so many smiling faces, some of the people I had only spoken to online and putting faces to names was fun.
We didn't go into the exhibition . To be honest the fair itself was more than enough and poor Mr M was very shaky and tired with it all. He assures me that it did him the world of good being among friends though so that is good.
What did we see?
we saw these:-


We also saw plenty of yarn and fibre. The hall was full of colour and very inspiring.
What did I buy?
A lucet, never tried one of these before but Graham on Coastal colours stand was playing with one when we went by and I was intrigued. It is easy to use one and a great way to use up oddments of yarn as well. Coastal colours were new to me but the yarns were lovely, he has a great eye for colour and I am sure they will do well. They were both chatty and very friendly and this was their first fair. I'm certain it won't be their last.
I found a lovely oak shawl pin on Ripples crafts stand. Helen always has interesting things to see, not just yarn and fibre. I managed to resist the fibre as I am waiting for when she goes to Wonderwool Wales.
That would have been it on purchases if we hadn't spotted some braids of fibre at the corner of Krafty Koalas stand. Mr Mog  chose some Wensleydale and I found some BFL.

While eating lunch we caught up with Angela and her husband,  Rebs, Tattyknits, Lob and many many more. Angela and her husband Paul gave us all pens which Paul had made and mine is oak:) He also makes the most fabulous buttons and I had to buy 2 of them. A large one for a hat I think and a smaller one for a bag.
There were friends from both guilds we now go to and the one we used to attend. Just a wealth of lovely people and so much positive energy forthcoming.
I loved the mix of stands, there was something for everyone. Lots of felting and information on courses if you wanted to make the things you saw.. Fibre and fleece for those who spin and felt, then yarn of every colour and fibre from merino through to stainless steel. I was tempted to try some stainless steel Habu but didn't. Maybe another time. There was a bookseller with old books and magazines including old vogue magazines from the 1930s. It is always nice to go to these events and to chat with the friendly stall holders. They never push you to buy but are very knowledgeable if you just want to ask about something. I think when you see them working on craft items and smiling you want to go over and ask what they are making or just say hello. If Rheged put this event on again I'd recommend a visit.

April 14, 2012

Drugs trial etc

I am going to try and keep some kind of online diary for Mr Mogs millennium drugs trial. I will try not to bore anyone but thought it would be beneficial for us both to keep a note of what is happening. I will try and label accordingly. I had to get doctor for Mr Mog today, well we actually went to the primary care as of course weekend doctors don't come out if they can help it. Mr Mog woke up feeling quite off this morning and a walk around the newt pond didn't help. In fact he started to shiver and become spacey and light headed as we drove home. It didn't get better, he went to bed completely flaked out and continually hot then cold. Everything hurt including his hair and the palms of his hands. The primary care told us to come to the hospital where they take surgery at 3-30 over 3 hours after the phone call. The upshot is that he has a water infection and was given 6 tablets to take over next 3 days. They are apparently vstrong ones. He is back in bed and I am keeping him supplied with lots of fluids. I can't believe how quickly it started and how speedily it worsened. Frightening stuff. Hopefully he will be feeling better tomorrow. They said if he gets worse we have to ring immediately, glad they told us that because of course I wouldn't think to do so ;(

April 13, 2012

ISPs and Virgin

I emailed the CEO of Virgin and let him know all about my problems with them. I didn't really expect a response but was pleasantly surprised. I had an email within half an hour of mine explaining that the CEO wasn't there but they would check into it. The very next morning a phone call from his assistant asking what had happened and offering to help. I replied that it was too late I had moved providers but had wanted to let them know why. Her response? you should have rung the CEO earlier and we could have helped. I did try to tell her that I had been unable to get past customer services or tech support but there you go.
At least they respond, albeit too late.

A little colour

I wasn't sure what shawls I had shown you so I thought you may like a little colour as a change from my moaning:)
This one I have just finished, it is Pamuya and the yarn is zauberball sock in cranberry colour way


 Then Mr Mog was playing with the camera the other night when the sky was clear and kindly took some moon photos for me
 These are part of our garden solar lights
 not easy to take through the window
 This shawl was made with yarn I dyed and the pattern was out of my head.
 This is Hitchhiker a mindless knit and I can't remember what the yarn was. This was gifted to a good friend.
 the new bulbs we planted last autumn have started to flower adding colour to the garden.
 isn't this glorious?
 This was another finished shawl. The pattern is afternoon tea from the latest knitty
 the yarn is crazy zauberball,colour way Wolke7
A very easy knit but quite a small shawl even blocked fiercely. I want to make another but will do more repeats of the pattern as I do prefer knitting larger shawls.
I had my doctors appointment this morning at 8am. However when we arrived at 7-55 the doors were firmly closed and the receptionist didn't open them until exactly 8. What is the point of an early appointment if you aren't going to be seen on time? By the time she had checked in ,or made appointments for, 5 others in front of us it was ten past eight. Granted I was called after just a couple of minutes but that starts their day behind already.
We have decided that I am not depressed just anxious and as she said it was no wonder with all that is going on.
The numb fingers every morning appear to be a result of carpal tunnel trouble and in both hands which isn't good. I have to wear hand splints at night and in the day if it is too painful.The knees? She did ask do I want to see the rheumatologist but as she said "I don't suppose you want to be going for operations at the moment" Quite right . So some painkillers to try initially and try to lose a little more weight.
I'm not having any medication for the anxiety or counselling, again a joint decision. I'm going to try to meditate more regularly and see if that helps.
I've to go back in 4 weeks for progress report but with the proviso I can make an immediate appointment if things worsen.
Then when we got home there was a telephone call from the trials nurse. Mr Mog has been accepted on the millennium drug trial. Back to hospital, again, Tuesday for more bloods to begin the trial and then hour and half later appointment with oncologist and the first lot of drugs. I really don't know whether to be pleased or not. I'm apprehensive as it is an unknown and he is relatively well at the moment.
But he is trying the drugs and we will see how they go. Or should I say he is trying a steroid plus a 50% chance of the new drug.
Time will tell.
And you? How has your day been so far?

Oh and on another note. The new ISP - router arrived yesterday and we followed instructions on the box, up and running in 5 minutes and nearly 50% faster than Virgin was.

April 11, 2012

Dear Virgin media

After I don't know how many years, probably well over 10 I am finally leaving Virgin media. For the past 6 months or so my Internet connection has been abysmal and technical support has been no use at all. I've had 3 routers and each one has been worse than the previous.Your company do not support the  iPad despite the amount now in use. They do reluctantly support the Mac but even there when I mention wireless connection I get the "we support PCs " response.
Why in this day and age are Virgin lagging behind on supporting a popular product? Why is the service so bad?
I've had hours and hours of technical support including taking over my imac to try and fix the problem. Each technician says it is fixed then a few hours later no wireless once more.
I am disabled and rely on my computer so much to keep in touch with family and friends world wide, especially now with a terminally ill husband.
So you win (or lose) Virgin I am giving up and moving on to someone who  supports apple products which you don't

April 10, 2012

sigh

Blog post
Finding it very hard at the moment to get through . Really stressed with all the hospital appointments and constant worry over Mr Mog.
Being very sore doesn't help but it is the constant worry over his health that gets me at the minute. I want to work a magic spell to make him better. I want to wave a wand and say abracadabra it is all ok.
I can't and it makes me feel helpless. I want to scream and shout. I want to do something . I feel angry I feel furious even. It isn't fair, it shouldn't be happening to such a lovely man, a gentle soul and my soul mate. I waited all these years and lived through 2 abusive marriages and a very bad childhood to find him.
It was worth it, more than worth it and I want many more years of his company and his love.
Yes I am selfish, I am glad to be so.


Today as you can probably tell is a bad one.
I have made a doctors appointment for Friday partly for my joint problems but also for my mental health.
The PMA is still very much here it's not gone away I am feeling vulnerable that's all.

April 03, 2012

Still here

I know, I know it is a long time between posts. I'm sorry but I've been totally overwhelmed  with health stuff both physical and mental.
The physical? Constant pain in all my joints that pain killers just aren't helping.
The mental? Really struggling to stay positive and sane, I feel very vulnerable at the moment and low. I know why, I know its the pain and the cancer stuff all becoming a wee bit too much.
I've been working on the PMA and most of the time I cope, but lately its become harder and harder.
Yesterday I decided enough was enough. Breaking into tears for no reason is reason enough to try and do something about it. I've hung on from visiting the doctors as it seemed a little bit of a cop out to do so.
BUT my ill health isn't helping either of us. I know I can't be upbeat all the time and indeed I don't expect to be so. I just want to be able to cope better than I have been doing.
So I've done something about it, I've made an appointment with the doctor, the best doctor in the practice in my opinion. She only works part time so the appointment is next Friday the 13th. I'd rather wait and see a sympathetic person who knows my history and knows what is going on with my life.
Just making the move has helped me, knowing I'm not ignoring a problem but trying to do something about it.

I need to be well to help Mr Mog, but also to help myself.

The past 2 weeks have been horrendous, the hospital visits have been ok but the reason for them isn't. Add to the Mr Mog worries this pain and weariness for me that would be enough but there is also family stuff going on and that compounds the worry.
I know I can't help everyone but it is hard to stand back.

Anyway that's off my chest so lets move on shall we?
Oh just one other thing, this morning our next but one neighbour died suddenly. We are good friends with all the family so it was a great shock for us both. We have just come home from paying our condolences and it was so hard:( They were a very close couple, a very close family and they are devastated. You never know what to say on these occasions do you? But I think it is important to be there for people and just let them know your door is open.

What else can one do?
I haven't done much spinning due to the pain and not too much knitting but socks are on the go once more to accompany the hospital visits.
So thats good isn't it?