My three children are planning to do a parachute jump in aid of Myeloma awareness. I have contacted Myeloma UK about support material and promotion and will let you know what they say when I get a response back from Lawrence.
If you wish to get involved or sponsor them let me know and I will put you in touch with Amy who is organising it. I think they are looking at doing the jump in about August so you have plenty of time to get involved.
Myeloma.org.uk has an infoline that you can call with any questions you have. You don’t have to be a cancer sufferer to use it. It is free and they will provide help and advice to anyone. You can find more information here
I have two appointments arranged for the hospital. One on Friday 11 December and the other on the 23 December.
The 11 will be for blood test and the 23 to get the next cycle of treatment and meet with Dr Lee again.
Today has been a good day. No pain or sickness or anything else. I have felt almost normal today. Did a bit more at work and been shopping at ASDA.
All the decorating is finished and new carpet fitted today. So hopefully more days like today through the rest of my treatment will be good.
Well the aching leg/hip has gone; however I found out I am allergic to the paracetamol! While I was in hospital I came out in a rash. They thought it was the Antibiotoics and so change to a different type and gave me antihistamines to clear it, but I now know that it was the paracetimol. While I was in hospital they put me on a drip of paracetimol to reduce my temperature as well as the antibiotics. I have had paracetimol before without any problems, but it looks like the strong dose they gave has triggered a reaction. From the two tablets I took last night I woke up with my covered in a rash and my fingers swollen.
I called the hospital team to see what other pain killers I can use apart from the paracetimol. I told them about the pain in my leg and the problem with my hands turning into monkey hands (couldn’t grip properly as it felt like all my skin had tightened up and looked very chubby). I can’t just take any painkillers as they can effect my myeloma. They have given me a prescription for Codeine Phosphate, it was either that or Morphine.
The pain in my leg is no longer their today, but they have given me the Codeine in case I have any more pain, so I have it to hand when I need it. They will make me drowsy so I can’t drive when I take them. So any time I have bone pain I will need to stay at home and rest. Lets hope that doesn’t happen too often.
I have been taking the antihistamines throughout the day and the swelling and rash has almost gone now.
I also had a dentist appointment today and had three filling done. So today consisted of a numb face and monkey hands.
I forgot to mention that the questionnaire is completely anonymous so feel to ask any question you like. I wont know who has asked it. Someone has already asked a question about my sex drive which I will answer in a post at some point!
Typical … one of the questions Dr Lee asked me at my appointment this morning was if I had joint pain. I didn’t I actually felt really good. Went back to work and at about 4 O’clock I started to get some pain in my right leg/hip. I came home had my tea and tried to rest, but it was still aching. I went for a lie down and took some paracetamol to ease the pain, which helped for a while. It is still aching now but not as bad as I am just sitting here resting. If it continues tomorrow I might give the team a call at the hospital to get some advice.
I had my appointment at the hospital today with Dr Lee my consultant. I have just finished the first cycle of the CTD treatment so it was a catch up of how I am doing and what they will be doing for the second cycle.
When I arrived they took the usual bloods and then I had to wait about 20 mins before seeing Dr Lee. He brought up my case on the computer and already they had the results from the bloods they had just taken. That impressed me, I was surprised at how quickly they turned them around. He ran through the results and there were lots of them on the screen. One of the more interesting bit was a graph showing the paraprotein levels before starting the treatment to where it is now after 4 weeks. Dr Lee was very please with how the myeloma is responding to the CTD treatment. He explained that a normal persons (always knew I wasn’t normal) level for this reading was 35 (not quite sure what this reading but I was happy to listen) before starting the treatment I was 85; however already just after 4 weeks mine had reduce to 37.5 which was pretty impressive.
The minimum amount of treatment they give anyone is 4 cycles, normally it is at least 6. They are looking at only giving me the 4 as I am responding so well.
He has also made some alteration for this next cycle. One of the good things is that I only have to have one day of the cyclophosphomide (chemo). He has increased the Thalidamide from 100mg to 150mg a day. This is what is having the most dramatic effect on the myeloma. He has also started me on a cycle of Septrin (co-Trimoxazole) which I have to take on a Monday, Wednesday and Friday. Unfortunately this comes with side effects, which can be either sickness or a rash. Hopefully I wont get either, but knowing my luck I will get both! I am also on Bonefos (Sodium Clodronate) now which I have to take everyday for the rest of my life to strengthen my bones.
I have a new spreadsheet with all of the tablets on showing which ones I have to take on which days etc for this cycle. The list so far is:
I had to wait over an hour for the pharmacy to get the prescription together at the hospital, but I came away feeling really positive with the results so far. I hope to continue with the good progress so far and then look at getting the bone marrow transplant sorted in about 12 weeks time.
So far so good. A little tired but a good day today. Started getting back into the swing of things and dealing with a few issues. I’m not pushing myself too much at the moment as I have found that my concentration doesn’t last and I get tired quite quickly. So i’m having plenty of breaks and just taking it easy.
It is Rachel birthday (one of my staff) tomorrow, although she is off then so we have given her the present and card today along with lots of chocolate and cake. Which has been good and I feel a bit sick after stuffing my face with far too much cake !!! Don’t tell Charito though as she will tell me off :D
