NOROVIRUS

Yesterday evening my husband and I went for a meal with friends. It had been booked some weeks before and we were all looking forward to it. Because of the length of time I have been ill and the fact that my immune system is so compromised, my friends know that if they have been ill they must telephone me straight away and then I will not see them until they are completely well. So you can imagine my horror when reaching the restaurant, that after the usual hugging and kissing, one of my friends loudly said that she had been unwell all week with Gastroenteritis! Being sick on Sunday and Monday with diahrrea(yesterday was Saturday) and ill enough to warrant a home visit from her GP as she had collapsed. Norovirus is still infectious upto 3 days from the disappearance of symptoms and she was still complaining of a sore tummy. I just didn't believe what I was hearing! If you have the norovirus you MUST STAY AWAY FROM IMMUNO COMPROMISED people for at least a week.

CHRISTMAS 2009

I omitted to blog about Christmas. How could not have done???? Call it chemobrain.

Well, we managed to travel to North Wales to see our daughter, son-in-law and 2 granddaughters for a few days. It was a wonderful time for me....I'm not sure if anyone realised how much it meant to me to see my family. Now that I am so far along the CLL bench I always wonder when or if I will see them again. That's not being too emotional I think....it's just true. I love my daughter and granddaughters more than they would ever guess and time spent with them is very precious to me. Distance means we can't see them often but there isn't a day goes by without I don't think of them. I look forward to phone calls and emails and of course, I look forward to seeing them again soon. They are loved.

DEPRESSION

A new year. A time I always thought of as being a new start with everything to look forward to.

But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.

I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.

CHRISTMAS SPIRIT

I must have the best husband ever. He has decided to make this the best Christmas ever for us all. We are hoping to go to North Wales to stay with our daughter, son-in-law and 2 granddaughters. We don't want them to have to 'do everything' so Neil has been cooking for days. So far he has made a Christmas pudding, A Christmas Cake, mince pies, vegetarian sausage rolls and ordinary sausage rolls. He has done the shopping for the ingredients and learned much from scratch from Delia Smith's new book. No one but Neil and I know the effort and love that has gone into this, but surely this is the spirit of Christmas!!

WHITE BLOOD CELL DOUBLING

21 November WBC 2,700
24 November WBC 4,000
7 December WBC 9,400

Is this a doubling of WBC? Or will it plateau out in normal range? My gut feeling is that its a doubling but I will know on 21st December when I have another blood test. This is such a ******* of a disease. It seems never to be still. I prepare myself for some good news and I get bad. I prepare myself for some bad news and I get good......trouble is that I am an old hand and this and I don't believe the Junior Consultant. I am an emotional mess.

When the counts are reasonably good and my scan is good, my family and friends think I am back to my old self (pre-illness). This is just a paper reading and my body does not reflect this at all. I do not believe for one moment that the AIHA is sleeping....dozing maybe, but if I were a gambling person I would put money on it waking within one month.

TEN YEARS AFTER MY DIAGNOSIS OF CLL

Four rounds of FC and 3 of Rituxan later and it was feared the Rituxan wasn't working as my spleen refused to shink. My doctor told me to be ready to have my spleen removed in the New Year 2010. The AIHA has been up and down for a whole 12 months now and I've been on a varying dosage of Prednisolone. It seems as if the moment the dose drops to 5 or 10mg a day then the hemolysing starts again. Before the last round of FCR I was feeling very tired and ill. Afterwards I just continued to feel sick and couldn't sit or stand upstraight without feeling ill. I didn't want to eat or drink anything either. I was admitted to hospital again on 19 November with Neutropenic Sepsis and back on 50mg Prednisolone as the hemolysing roared in again. That evening I was ready for the body wagon. I felt so ill I would have climbed in myself and checked out. There was much concern among the doctors that the AIHA could not be controlled. My husband was totally worn out with all the worry and so was I. However, 3 bags of blood and several days later and I was feeling more myself (whoever myself is......is it the patient? Where is Soapy in all of this...is she still here? Who is the person I see in the mirror? That person is NOT ME. She is just a shadow who bears a faint resembance to me.

I was discharged after 6 days.
Two weeks later and my doctor is on holiday. I saw a junior consultant who knew nothing about me. He says my blood counts are normal and my CT scan shows nothing abnormal. He also says there is no sign of hemolysing. Why is it that my bloodwork never reflects the way I feel. I still feel weak, shaky and exhausted and a bit of a burden on those who love me.

LYDIA

Yesterday was a 'red letter' day.....another long letter from Lydia (My youngest Granddaughter)aged 13. One day I am determined to publish her letters in a book and call it 'Letters From Lydia'. Much news is passed on....this letter deals again with the guineapig situation and how 2 pet guineapigs were (unknowingly) pregnant when given to Lydia by a friend. So far a 3 month old guineapig has had 5 babies. One has died which was most traumatic! Now the other guineapig is about to give birth and the question is......
Who Is the Father?????
Lydia at first thought it must be the father of these 2 guineapigs, but now is sure it is the brother. Such goings on and I haven't met any of the gps yet. Together with long newsy letter is the 2nd part of the cartoon drawings detailing the story of the guineapigs. Lydia is an excellent cartoonist and I'm sure one day could have a career drawing if she would like to. She is also planning a 12 mile cycle ride for Children in Need (UK) and needs sponsors. Of course I am absolutely sure I have no readers out in the ether, but I am sure you will like to hear of her progress as she gets into training.
Lydia, if ever you read this let me say that your letters are the very best. I have told you this often. When a letter arrives we sit down with tea and biscuits and have time with Lydia (its the next best thing to being with you) and you know how very much we love you. Now I have to plan my reply (with love and hugs, Grandma).