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 http://feresaknit.wordpress.com/ and is very witty. Also take a look at her Myeloma Buddies http://feresaknit.wordpress.com/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 http://feresaknit.wordpress.com/2010/06/20/more-blood-results/
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 http://feresaknit.wordpress.com/2010/06/29/dont-tell-bernard/ 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).