Family Day with Grandchildren

 

It has been a while since Amy and the grandchildren (Brandon on the left and Kai on the right above) have been here. They have all had colds over the last few months, passing it from one person to another. To save me getting an infection, they have stayed away. It was really good to have them here for the day. Although I had forgotten how noisy and how much you have to keep an eye on them all the time especially when they are that young.

Amy has another one on the way in a a couple of months so she will have three young ones (hopefully a girl). I’m glad I don’t have to go through all that again. Coping with Steven, Amy and James was enough when I was younger. I know I couldn’t cope with it now, regardless of the cancer. I think I would pull my hair out let alone it falling out with the Chemo!.

I look forward to seeing them again and taking some photos of the new baby (girl) when born.

That’s if I’m not in hospital at the time.

Digital barcode clock .. I love it.

I just love this clock

Pictures working again now

Google Picasa problems seems to working again now. It wont have done Google any good to have it not working the publicity will be really bad. It just shouldn’t happen for a company like Google. Something very serious has happened and I’m sure someone will be getting a good talking too. We will have to wait and see what they have to say.

pics not working at the moment because of google

images are temporally not working as google picasa is down! it just shouldn’t happen!!!

Pentamidine and Dexamethasone

Today I’m on my first day of four of the Dexamethasone and also had my pentamidine at the hospital.

I’m feeling quite good today overall, but the Pentamidine tastes horrible as usual. There is still a bit of confusion over when I should have it. Even when I have stopped this cycle apparently I still need to continue with this (doh!) I have to contact Liverpool to find out exactly which I should stop and which I should continue. I think I need to continue with my Bonefos but not the usual CTD treatment. Unfortunately I didn’t get a direct line for the team in Liverpool so I need to source that from someone. I have Edwinas number who is looking after the Stem Cell transpant, but not the Dr so I will give her a call to get his number.

Liverpool Hospital Appointment

I had my appointment at the Royal Liverpool Hospital today. I now have more details about my transplant and the timescales and process that I will be going through.

Without going into the fine details etc the process will be:

• Finish the Cycle I am currently on. – Ends 7 April
• Wait approx 6 weeks
• Start Extract process (more details below) 14 May
• Wait a couple of weeks after extract
• Start Stem Cell insertion (month in hospital) June.

The waiting after the Cycle is to make sure that my bone marrow isn’t contaminated and is the best it can be before extracting.

The extraction isn’t as I thought it was going to be. I did think I was going to have my hip drilled into again and then they suck out the bone marrow from there. The Professor explained that isn’t how they do it anymore. They used to give people a general anaesthetic and drill into both hips and suck out the bone marrow until they have about a litre of bone marrow. Now they use a method of drugs that releases the bone marrow into the blood stream and then via a machine similar to a kidney dialysis the blood is passed through and the marrow harvested. To get to this stage though take about 7 to 10 days of other drugs. A high dose of chemo followed by the other drugs to release marrow into the blood stream monitored every other day until there is enough in the blood. This is when I will probably lose my hair, prior to going into hospital. So although it takes longer to harvest the stem cells, I personally would rather have this than go through the pain I had the first time I had the sample of marrow taken from my hip at the start (very painful) saying that, I would have been asleep this time!

The worst part comes in June or there about. It might be earlier, depending on how it goes. They explained the risks involved and said that there is a 3% chance that I could die during the transplant. I like to think of it as a 97% chance of success, which sounds much better.

I will be in isolation and need to make sure that nobody comes to visit with any infections as my immune system will be non existent. If I do catch something, then I am like to be part of that 3% which I would like to avoid if at all possible!

I feel a bit happier now knowing the next step and timescales I hate not being able to plan ahead or at least know what is coming. He went over my life expectancy details again and said that the last statistics they have were that life expectancy is on average about 5 years, although that is prior to the use of the new drugs including Thalidomide. So the statistics are out of date and many people live a lot longer than that some 10 or more years. Fingers crossed I’m one of them.  I’m thinking about taking some long term loans out ….. now where is that brochure for the Ferrari.

Looking on the bright side – at least I don’t have terminal cancer. I do have years rather than months or weeks.  was that really on the bright side.

If you have any questions, just ask and I will be happy to answer them, as long as they are related to this blog post and not general ones like ‘what are the winning lottery numbers’.

New look for my blog

I thought I would give the blog a bit of a make over. I might change the picture in the background from time to time, depending on my mood.

Leukaemia & Lymphoma night out at Chester Racecourse

Below is an email that Keri has sent out to members of the ‘You, Me, Us Support Group’  Please support the event if you can. I have attached a link to the document – View document

Dear all,

It was nice to see you at the last meeting.

I had mentioned at the meeting about a fundraising event that is being organised by Sally and her husband Gary.  Sally was also treated at the Countess in the haemotology unit for leukaemia.  They are organsing a dinner at the race course on 23rd April to raise money for Leukaemia and Lymphoma Research who fund research into blood cancers including Myeloma.

I would be really grateful if you are able to put this poster up anywhere that you may think is appropriate.  If anyone requires any further information about the dinner they can contact Gary whose details are below:

Name: Gary O' Reilly

Email: garyomcfc@sky.com

Tel: 07973 657 470

Chester Racecourse Document

Early night

I had an early night last night. I was very tired and went to bed at about 8pm. I had some very odd dreams as well for some reason. I woke up at about 12am. It was a good job I did wake up though … I forgot to take my tablets before going to bed! So I had to get up again and get my Thalidomide and Bonefos.

Then of course I couldn’t get back to sleep, at least not for a while. The last few days I have been very tired. I’ve been aching all over and hardly had any energy to anything. Hopefully tomorrow I will be ok, as I have to go to the Chester hospital for my Pentamidine and then Liverpool on Friday.

Family - Magic

It’s been good to see Steven the last few weeks. He has started to cycle up to see me every Monday. It takes him about an hour on his bicycle, but at least it keeps him fit. He has been helping me around the house with a few things and we have been going through some of the things in the attic.

He’s keen on learning some of the Magic that I used to do, so while I can I’m going through and teaching him a few things. Hopefully he will pick it up and get some enjoyment out of it and who knows, he may even make some money out of it as well.

I need lie down now

I didn’t get much sleep last night, I was up till 4am the Dex kept me awake.

I just had some post delivered, but it wasn’t for this address. By the time I managed to get the door open the postman was further up the street. I debated with myself if I should wait and try and catch him going back to his van or take a walk to try and catch him up. I decided to take a walk. He wasn’t that far away, but by the time I got there and back, it felt like I had just ran a marathon (not that I ever have but going by the looks on people faces etc on TV). I was totally out of breath and my body was shaking. I’ve just sat down and rested for a while and now got myself some water. Under normal circumstances it shouldn’t be a problem, but I think it has just brought it home to me even more how little I can do of the normal everyday things. If I took my time walking up the road I would have been ok, but because I was going a little faster to try and catch him up it was too much for me.

I think I just broke foursquare!

Cycle Seven

I had my visit to the Chester Hospital today. I wasn’t sure if I was going to have another cycle, but after the doctor discussed it with the consultant they decided it was probably best to have another one as it wouldn’t do any harm and would only help.

So at least another three weeks of chemo, unless the Liverpool Hospital changes it. I have my appointment in Liverpool next week so will see what they say.

Just Giving

Thanks to everyone who has donated so far to the Just Giving. I had to chuckle to myself last night to Jims comment on his donation. It was good to hear from you Jim still the same sense of humour as me. :)

At least it has now moved off the 1% mark, not sure if it will ever hit the 100% although the sponsored parachute jump in August is going to help.

Thanks again

A little bit better

I’m feeling a little bit better this morning. My back and  legs are still aching, but not as bad as I was yesterday.

I didn’t have much to eat yesterday, if anything really. I’ve just had some cereal  which I've managed to eat without feeling sick. Yesterday everything tasted awful! Nothing to do with Charito’s cooking, it was my taste that was affected again. I didn’t even have any coffee as I couldn’t stomach it.

I did think I was going to end up in hospital again with a temperature, which I didn’t want. I checked my temperature a few time and although it was a little higher than normal, it wasn’t anything to worry about.

Yesterday wasn’t good for me, but today is looking better so far, apart from the aching.

Feeling a bit rough

The last few  days have been a little rough.  Been very tired and unlike last week the chemo seems to have knocked it out of me at the moment.  I’m aching all over and generally feel bad. Charito is looking after me as usual and putting up with my mood swings. I don’t know why some days I am ok and others feel really bad.

I just want the transplant to be over and done with so I can start thinking about getting better and back to some kind of normality for a while!

Was this the last of my Cyclophosphamide for now?

  I have taken my last of the Cyclophosphamide today (the oval shiny ones with no markings in the pic), at least of my cycle 6. I’m not sure if I will be having a cycle 7 as I was supposed to have been to Liverpool prior to going back to Chester. Last time I spoke to Dr Lee (in Chester) he said that I was only going to have 6 cycles, but an appointment was made by Dave, so I’m not quite sure what will be happening until my appointment in Chester next Wednesday on the 17th.

I will have to wait and see. I think they will probably just start me on another cycle until I have been to see the Professor at Liverpool and then leave it up to them to see how they deal with it.

not getting much sleep

I’m on my Dexamethasone at the moment, but it is keeping me awake at nights. I went to bed last night but had to get up again as I couldn’t sleep. Finally went back to bed at 4am but had to get up again early to take Charito to work. This is the second day I have done that. I just never know how it is going to affect me when I take these tablets.

I’m not sure now if this is going to be my last cycle now that they have changed my appointment at Liverpool so I might have to have another three weeks cycle. I will have to wait and see. My next appointment at Chester Hospital is on the 17th so I will find out then.

Disappointed

I’m disappointed today. I’ve just received a letter from the Royal Liverpool hospital and they have changed my appointment date from the 12 March to the 26 March.

I know its only a couple of weeks, but I just want to find out the time scale for my transplant. I was expecting to find out on the 12th, now I have to wait another two weeks!

Dear Mr Tiernan

I regret that your appointment for the Clinical Haematology clinic of Prof R E Clark has been cancelled on Friday 12th March 2010 at 10:00 am.  Another appointment has been made for you on Friday 26th March 2010 at 10: am ……

I will just have to be patient (no pun intended … or was there!).

You Me Us Support

Yesterday evening I went to a support group that is being set up. It is being organised by local people affected by Cancer. Liz Taylor from Macmillan is helping us set it up. I missed the first meeting last month as I wasn’t well enough to go with it being on my Chemo Thursday. However as I felt ok yesterday Charito and managed to get there.

We had a good evening, the group is only just being set up and we haven’t got a regular venue yet. We met in Hoole in Chester in one of the hotels, but it wasn’t really private enough. Ideally we could do with a place that can offer us a free room that isn’t too formal once a month for a couple of hours. The group is being set up to support people of working age affected by Cancer. The people that attend can either be Cancer patients themselves or relatives of a patient. The age range for the group we have classed as ‘of working age’ We had a bit of discussion about this, but basically there are groups already available for young people and for old people (when I say old I mean those that have retired etc) but there was nothing for people like myself, in mid 40’s. So this group is ideal for people like me. We want it to be a friendly environment offering support to anyone who attends.

Last nights meeting was held at Bawn Lodge in Hoole. I really liked the place, but as mentioned the environment wasn’t really ideal as it was in the lounge and was open to the public. So if you know of anywhere that has a room available for free, that isn’t too formal for about 20 people that has a bar available, let me know. We need to get a permanent meeting place before creating and distributing any of the literature to the various Hospitals and patients etc.

Chemo Thursday Surprise

As usual Thursday was my Chemo day. Now usually when I have my Cyclophosphamide it knocks me for six and I am very tired and have no energy at all. For some reason yesterday it wasn’t like that. I don’t know why, as I wasn’t taking anything different than usual with it, but most of the day and well into the evening I felt ok. When I say OK I mean not the usual total exhaustion and feeling sick. I still have the aches and pains and tiredness, but nowhere near as bad as a usual Chemo day, so it was a good surprise.

Not much blogging lately

You may be wondering why I haven’t been blogging much lately! Well everything is OK, nothing to worry about. I’ve generally been resting since stopping going to work. I certainly don’t feel as stressed and it is helping. I’ve tried not to worry about work at all and it seems to be going ok. I’ve checked my emails, but that about it. I realised when I was looking through my emails how easy it is to start worrying about things, so I quickly gave up on that before I ended up getting dragged into quick emails bouncing back and too.

Most of the time at home I have been reading or resting. It’s good to be able to sit down or lie down and just do nothing when I feel tired and exhausted. Some days it wears me out just getting out of my chair and other I’m ok to go for a walk around town, it just depends on what tablets I’m on and how I’m feeling during the hour of that day.

It isn’t good to just sit around, I need to motivate myself to move around as much as I can really. Two reasons, 1) I have put on quite a bit of weight since starting the Cancer treatment, partly because of the tablets and partly because of not being active and eating far too much junk food (cakes and chocolate over Christmas). 2) The thalidomide can cause DVT (Deep Vein Thrombosis) the same type of things that you get on long haul flights if your sitting down for a long time. I currently have to have the daily injection of Tinzaparin to thin my blood to help stop it, but that isn’t a good enough reason to sit there and do nothing!

So again it is finding the right balance between resting and doing things that don’t wear me out too much.

The good news is that I know that I am getting closer to my Transplant and although I know it will be difficult to get through, it will be worth it to get on the road of recovery the other site. At least for a good number of years.