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Friday, 30 July 2010

I have a date and can parrots swim

I had my appointment at The Royal Liverpool hospital this morning. After have my blood taken, the usual process is that I then have to wait for about an hour before seeing the doctor and the results to be returned. So I had my blood taken and then went over to the G-clinic for my usual wait; however this time it was much more fun.

Paula ( had already emailed me a couple of days previously saying that she was at Liverpool on Friday and that we might bump into each other again. Sure enough they were in G-Clinic when I got there. I went over to talk to them, but this time I was determined not to say anything wrong, like I did last time we met (see previous post about the keys). Paula had already had her bloods taken and she and her husband said they were going to get a cup of coffee (from the coffee shop just around the corner of G-Clinic). They asked if I wanted to go with them, but I said no, knowing that I might say something I shouldn’t again and I didn’t want to feel bad again and drop Paula in it. However after about five minutes talking with Bernard as he was telling me a funny story, they said are you sure you don’t want to come for a coffee. So I change my mind and went with them. I’m really glad I did, we never stopped laughing. They are both really fabulous people and have plenty of funny stories to tell. If you ever need cheering up, just spend some time with Paula and Bernard.

After the coffee we went back to clinic and waited for our names to be called. The rest of the people waiting must have thought we were nuts, as we just kept laughing. Apparently and during conversation in the past, I can’t remember which story this related to now, probably involved Paula’s skills at driving (all of the very funny), anyway it went something like this – Can Paula Drive? Bernard ‘Can Parrots Swim! As Paula was telling me this I thought, errr i’m not sure, can they. Then she said exactly the same thing that she wasn’t sure either.

Later on I received and email from Paul telling me apparently they couldn’t. However me being me, always being argumentative and not believing anything anyone says have Googled it and found a video clip of a parrot swimming.



So now when when Bernard uses that phrase Paula, you can say. ‘Yes they can’

The waiting went very quick and I have never enjoyed my time at a hospital as much as I have today. Thanks for the coffee Bernard next time I will buy.

On another point and the reason I was at the hospital today, I was waiting to see if they were going to give me a date for my stem cell engraftment (so called transplant). I’m glad to say that I now have a date (providing I don’t get told they have changed it). I’m going in on Monday the 23 August. Which means that I will be in hospital for Amy’s birthday and the parachute jump that is being organised for the end of the month. I want to see lots of pictures and videos.

Although it is still a number of weeks off yet, at least I have a date I know I am working to, rather than it should be next month or the month after. Providing everything goes to plan, which there is no reason to think it shouldn’t that is the date I will be going in.

I know I have written much in the last few weeks and thanks to everyone who has emailed and called to ask if I am ok. The only reason I haven’t written anything is that not much has gone on really. I had another does of Pentamidine at the hospital last week (yuck).

As I explained to Amy on the phone, the highlight of my life at the moment is what time is Big Brother on. (yes that is how bored and sad my life is at the moment). I get all excited when something new happens in BB (I think I’m turning into a woman)

I’m looking forward to tomorrow as it is Chris and Jodie’s birthday party next door. So I’m sure we wont be noisy or drink too much (believe that and you will believe anything). I would let my hair down, but I don’t have that much to do that with. My hair has grown back again but very thinly at the moment, but it’s only for the next few weeks, as I will definitely lose all of it when in hospital for the 3/4 week stay.

So even though the weather wasn’t good today and I got went in Liverpool town centre, I have had a good day and tomorrow is going to be even better.

Friday, 9 July 2010

Tai Chi and Qigong Health benefits

wondersofqigongI ’ve been looking into alternative therapies for Myeloma, not that I’m going to change my treatment, but as a way to increase my life span. I found some information about Qigong (pronounced chi gong). Tai Chi is a moving form of Qigong more info

The benefits are medically proven and I have looked into local courses and will hopefully manage to get some lessons before my engraftment. There is also a form of Qigong that can be done while sitting down –the eight Brocades, which is suitable for recuperating. There are various different forms, the eight brocades is one of them.

If it helps with myeloma and increases life span, then it is worth doing - Tai Chi And Qigong Show Significant Health Benefits

Wednesday, 7 July 2010

Lilies in the garden

I took Charito to the bus stop this morning and as we were getting into the car Charito pointed out that the Lilies had come out in the garden. When I got back home I took some pictures of them. There are more on my Flickr page, but I have added some below.

Orange Lilies on black

Orange Lilies on black 2

Orange Lilies Orange Lilies

Friday, 2 July 2010

Hospital visit

Well I got up this morning and filled the last bit of my wee container (sorry Paula, only managed to fill one), then I had my shower and got ready to leave for the hospital. Charito and Pilar (Charito’s sister) were ready as well as they were coming with me. We set off at about 8:15 and after about five minutes Charito said to me – ‘Did you put your wee container in the boot’. Errr No! So I had to turn around and go and pick it up. So off we set again at about 8:30am.

We went up to 10Z as Edwina told us to and only had to wait about 5 minutes and she came in to see us. While waiting we had a chat with a lad called Chris who has Leukaemia and recently had a bone marrow transplant from his brother. He told us that he was only in for three weeks and it all went well. He even said the food was quite good, although he couldn’t taste it much as his taste had gone after his Chemo and transplant. One thing he did say though was that he lost a couple of stone while he was in (talk about a crash diet), so that is a good thing to look forward to as I have put on quite a bit of weight since last November.

Anyway Edina told us that it would be quicker if we went down stairs again to have the blood taken as it would be a while before they got around to seeing to me. First we sorted out with Edwina which blood test to complete. She gave me two forms when I was there last and I also received two in the post, which it turned out I didn’t really need. So we picked up my container of wee and started to walk towards the lift to back down to the ground floor from floor ten, when we saw Paula. For those of you that have been reading the comments on past posts you would have seen a message from Paula saying that she would be at the Royal at the same time.

Paula has already had her transplant and she has been keeping a blog of her own. If you get a chance take a read as it is very good and very encouraging to people like myself who have not gone through it yet. Paula’s blog is and is very witty. Also take a look at her Myeloma Buddies 

I first came across her blog from a Myeloma Alert message things that I use and then started to read her blog. She has a good video of herself which I think really shows her personality – really positive and always smiling and giggling

If your reading this Paula, sorry about dropping you in it with Bernard – I didn’t realise he still wasn’t aware about the Keys trust me to open my big mouth.

It was really good to meet Paula and Bernard and I don’t think they realised how encouraging it is to meet a couple like them who are very positive. Paula was dropping off a gift for the nurses and we were chatting and engrossed that the lift doors had opened and closed without us realising it! doh!

Paula has been told that she doesn’t have to go back to the Royal anymore which is really good news. It means the transplant has gone ok and that she can eat what she wants now and doesn’t have to be as careful. I hope mine goes as well and and look as good as she does after only seven weeks.

We left them as they were going to get a coffee to celebrate (there was talk about a curry later on, so hopefully they enjoyed it – and kept it down)

I went to the Phlebotomist to have my blood taken. Fortunately there weren’t many people waiting so it only took about 15 minutes including the waiting time.

I also needed to have a few other tests done, but that wasn’t until about 11:30 so as Edwina suggested we went for a coffee before then next tests. It was only about 10am after the coffee, but we decided to go down again (the coffee shop is upstairs – good exercise). I had to tell them I was there on one reception, then go over to another reception, which is actually next to them (so close in fact that there seats are back to back). So after telling them I was there I sat down on the Cardio side to wait.

There were three test that I needed to have done. An Echocardiograph (ECG) a standard heart check (the one where they stick the stickers on your legs, arms and chest and monitor it for a few minutes) and a lung/breathing test. Oh they also take your height and weight. They called me in to have my heart check which took a few minutes and while going to another room, Charito shouted me and told me that they had called my name on the other side as well. (it’s good to be in demand!). They had to wait until I had my lung/breathing test done and my weight and height taken before going to see them. I knew what they wanted though from previous visits, they only shouted my name to have my weight taken, which is normal prior to having to weight before going in to see the Doctor.

So it is a bit ridiculous that you have your height and weight taken on one side of the room and then get called to have it taken again on the other side. (I’m not sure if I lost weight from one side of the room to the other though).

I then had to wait for my ECG for about 20 minutes. When they called me in, he asked me if I have had and ECG in the past. I told he him no. He said well its very similar to a baby scan. I told him I haven’t had one of those either! (I really do need to lose weight if I look pregnant!)

It takes about 20 minutes for the whole process of the ECG to be completed. One of the things they do is scan from in between the rib cage at the top of the stomach upwards towards the heart. Before doing this bit of the test, he asked if I had any pain there, which I didn’t. I do now though as he presses quite hard, I think I may end up with a bruise.

At one point during the test he asked me how old I was. Once I told him, he made some adjustments on the machine and then said ‘ah now that’s better and makes more sense. I asked if I had a heart of a 70 year old. He said quite the opposite, my heart is good. So I have finally proved to all of those that doubted it, I do have a heart and it isn’t made of stone :-)

Prior to finishing the ECG he said the results would be available for the Doctor at the end of the day and wondered when my next appointment to see the doctor was. Err actually I’m waiting to see them now! That’s when I realised I wasn’t going to get away from the hospital for quite a while.

So over to the other side to wait for the doctor and wait and wait and wait etc

Finally got to see the doctor after almost everyone else had left. I thought I was going to be given the date exactly when I go in, but it wasn’t to be.

I’ve been told it will be about six week, which is disappointing, I was hoping it would be in a couple of weeks. I have another appointment in 4 weeks for further blood tests prior to going in (if they don’t change the date again). The Doctor told me that it is taking longer than normal as they don’t have the beds available. The reason being that they don’t have the staff to look after the patients, not through funding, but not having qualified staff. It takes a long time to train staff up to manage the transplant unit unfortunately.

I was originally told it would be April then May or June, now it is mid August (hopefully). I really am fed up with waiting and just want it over and done with. I’m surprised how long it is taking and it will be nearly a year by the time I’m feeling OK after the transplant (back in Nov 09).

Thursday, 1 July 2010

Another Gallon of Pee

I had to start Peeing in two half gallon containers again today (not at the same time, that would be quite skilful, they gave me two in case I fill the first half gallon container) . I think it is the same test that they did at the start of my treatment back in Nov 09, but I can’t be sure called the Creatinine Clearence Test.

I have to collect the urine I pass in 24 hours in the containers and take them with me to the hospital tomorrow. I’m also having a couple of blood tests and an echocardiogram in preparation for my trip into hospital.