Not just man flu

I’ve had my usual Friday visit to Liverpool hospital today and I was told that the results of one of the viral checks had come back positive for Influenza A.

No wonder I haven’t been feeling very well over the last few weeks! I’m still coughing through the night and they have given me some medicine that I have to breath in like a Ventolin for Asthma to take twice a day. Hopefully that will help clear it up quicker.

Another problem that I have is more Graft V Host Disease. I mentioned the rash on my last post, well even though I put my double base cream on this morning before going to the hospital, by the time I got to see them, my skin had dried up and the rash was clearly visible. By the time I got home my skin was flaking all over the place. I smothered myself in the cream again and I have some Eumovate steroid cream for the worst areas, which is my arms at the moment. Normally I would have 40mg of steroids tomorrow as part of my Lenalidomide regime, but they have suggested I take 10mg over four days to see if that helps with the GVHD.

So I’m not having a good time at the moment, I could do with a few weeks of at least feeling OK. It seems that I get some good news and then something else happens. I keep having to remind myself that it can’t last forever, it will eventually go and and then I might get some kind of normality back.

One of the hardest things about blogging

OK, it might not be that difficult, but I always get stuck when I have to think of a title for these posts. I’m not that creative with my writing skill to come up with snappy tag lines and if I was writing them for SEO (Search Engine Optimisation) then I would probably think a lot more about them. I think I spend more time thinking about the title than I do about writing the post!

I’ve not posted for a few days, so thought I should at least write something, in case you thought I had died! incidentally when I do die, I wont leave you guessing, I have put things in place so that my brother Nigel has access to my blog and will let everyone know. So no need to worry if I have popped my clogs if I don’t post for a while, I’m NDY!

On a more cheery note, my bloods from last Tuesday were good again.

HB 9.2
PLTS 104
Neuts 5

They didn’t do a U & E blood test, so I can’t tell you my kidney results. I should get those tomorrow though at Liverpool. I’ve finished my course of antibiotics, but I still keep coughing! I will get the Dr to check me over tomorrow. Hopefully it wont result in a stay in hospital.

Thanks to all the people that are emailing me saying that they are following my blog. It’s good to know that we can help each other. I will get around to emailing you all, but just not been fully 100% this week, so still trying to catch up on things.

Chest infection

I’ve not been too good this week.

I started off with a bit of a chest infection and asked for some antibiotics at Chester hospital. Now call me a bit cynical, but there is a new doctor at Chester and to be honest I think it is going to be a while before I trust him like I do the others. Maybe its because he is new, but I think it’s more likely because he didn’t even exam me, normally if I have a problem with my chest, they would take listen to make sure it is clear before giving me their opinion. This guy just said no I’m not giving you anything, but if you have a high temperature, make sure you come back in. Great I thought you want me to have the possibility of getting pneumonia and then dying before I start to get treated! Anyway I couldn’t force him to give me anything, so I went away still coughing. I knew that I was going to Liverpool on Friday where I would probably get a prescription after a thorough examination, even though Dr Salim my main Dr was on holiday. Oddly enough I was seeing another new Dr. The reason being is that they all change around about the same time. This one though spent his time with me and went through the history that he wasn’t sure of and then examined me and even went to get a second opinion on a rash that I have as well. I was given some antibiotics as well as some topical steroid cream if the rash doesn’t clear up after using antihistamine. It was totally different. And he wasn’t just doing this because of what happened in Chester as I never mentioned it.

Now you know how lucky I am …. mmm ok maybe not and this was one of those times again. When I got home, my temperature started to rise. slowly but surely it went up over 38c. So I put the fan on to cool myself down as well as took my tablets which included Paracetamol which reduces your temp. By this time I was in bed with no covers on my with the fan blowing and constantly coughing. So do I ring the ward and go into hospital, if so, where do I call, Chester or Liverpool (something I need to ask) it did go down below 38, but took a while after peeking at 38.7. I knew if I called the hospital I would have to go through the rigmarole of going to A&E then AMU before finally getting on the ward, at least that’s what would happen in Chester. I don’t know about Liverpool, as I’ve never gone straight onto the ward from home. Then once I was on the ward I would be put on antibiotics intravenously and would end up staying for a week or two. The other option was to stick it out over night to see if my temperature goes down. Guess which one I chose .. yep stick it out.  Sure enough even though I didn’t get much sleep if any with coughing and spitting most of the night, having trying to sleep whilst sitting up as every time a lay down I got worse, my temperature did go down. I’ve not had a temperature today and it has been normal at 36.6c so hopefully I’ve avoided the hospital stay.

I’m still coughing but hopefully the antibiotics have started to work and my temp wont go up again; I’m keeping a close eye on it and checking it regularly.

I’m not the only one who has had this Chest infection (or the only one who had the Chester experience either with the same Doctor). There have been a number of patients at Liverpool who have got it as we all sit together near each other on the day ward. In fact Gill was doing a good job of isolating us all as she managed to take our bloods on Friday. Trying not to let others catch it. Hopefully by next Friday I should be clear and the other will be feeling better as well.

And the results are in

Yes that is a 12.9 for my paraprotein. The chart shows the progress since the 1/07/2010 at 17.8. 12.9 is the lowest it has been. I’ve only has one cycle of the Lenalidomide since my transplant. Can I say for definite that it is the Lenalidomide, no as it might be the other things that I am taking that is making a difference, but there again it might be combination of the two. To be honest I don’t care which it is as long as it is working.

I start my second cycle tomorrow, I’ve been given all of the tablets today, but I don’t want to start taking the dexamethasone tonight, so I will start tomorrow on cycle 2 (officially cycle three including the one I had prior to transplant).

Tired and Stick

Since finishing my first cycle of Lenodlidomide (Revlimid) on Friday, I’ve been feeling more and more exhausted, I’m not sure why though. Maybe it’s just because I have been doing more than usual lately, with sorting out the things from the attic and trying to do a general tidy up.

I’ve had my brother come over and visit it me with his son on Saturday, which was really nice. I haven’t seen them both for a very long time. We spent most of the time talking and having a general laugh, but by the time we had, had something to eat, I was ready to just fall asleep in my food. I could hardly keep my eyes open. I felt guilty as they had travelled to see me and felt as though I couldn’t stay awake long enough for them. I know they understood though. They needed to travel across the country though to get back home and Saturday was the worst day to do it with the snow falling! I was really lucky that they made it over in the first place as they weren’t sure if it was going to snow on the way here. They had been told it was snowing where they lived, so setting off early to get home wasn’t a real issue anyway and it was safer for them to do that than wait around for me to wake up and have a bit of energy. I got a message on my phone later that evening to say they had arrived home safely and managed to avoid most of the major road problems caused by the snow.

Today (Sunday) I’ve again felt tired most of the day and struggled getting up and down the stairs. My legs seem very week and I’ve even been using a stick to help me get up and down, when I say stick, I mean a monopod for my camera as I don’t have a proper stick. It’s been the first time as though I have needed anything to help me with my walking etc and it feels as though I have been defeated in some way. I’ve been thinking about buying a stick for when I go out, but again it feels as though I am giving in to the cancer if I need a stick to assist me or rather to make sure I don’t fall over because I haven’t got the overall strength to get up and and about. Maybe I shouldn’t be so vein and just get one, it is better to be safe than risk falling over and maybe breaking some bones etc.

I am hoping though that it is just a passing phase and that my energy levels will pick back up again.

Bloods good again

Another busy day today. I’ve had my car in to be fixed and serviced and so in  courtesy car at the moment why jobs are being done on it. Having to have quite a bit done to bring it up to a safe standard. I’ve only just bough it second hand, but as usual as soon as you buy something it goes wrong. A few days after buying it the engine warning light light came on. I’ve been waiting to get it connected up to the computer and see what it was that was causing it, still not sure now, but will find out tomorrow exactly what it was. I know I need two new tyres and discs and Chris next door notices that my near side rear light casing was holding on by a thread, so I also need that doing. Brake pads have needed changing as well as some other small jobs. So in all in all it is going to be few hundred pounds that I could do without having to fork out for. Let hope lots of people bid on my dark matter I found

After dropping the car and Charito off this morning I drove over to Liverpool, parked up and took the small walk across the road to the hospital. I realised though that when I parked up that I didn’t have my man-bag with me that I usually carry my notepad and things in. I’m still not sure where it is, but I think I left it in the back of my own car. I called the garage to see if I left it in the office, but they hadn’t seen it, so hopefully it is still in the car somewhere.

It was good to find when I got to the outpatients that Gill the regular nurse who looks after the patients was back sorting out everything. It was a real nightmare when she was away. I understand that the other nurses weren’t able to put in 100% to us on the outpatients while they were looking after their own patients on the ward as well as trying to take care of us, but perhaps they should realise how much work Gill does and how good she is at her job. She was really missed by us regulars and could definitely see the difference.

Gill does a wonderful job of organising things and wont stop until we have all been looked after, sometimes, in fact most of the time being left on her own without getting a drink or a break for many hours as she constantly whips from from room to room organising Pentamadine or setting up bloods, cleaning dressing, podding results, etc, etc the list goes on. She needs help and assistance, so if anyone is reading this from the ward, don’t forget about Gill in outpatients, just because she is on her own, doesn’t mean she should be. Let get the new rooms sorted that we have all been looking forward to seeing that we have been promised and make it into something special, just like Gill.

Well after Gill had looked after me and I had a list of jobs for her to do… FBC, Full Profile, Paraprotein, Cross Match, Chimerism and dressing replaced with new statlock I was off back down from the 10th floor to the ground again to wait for my results. I did the normal thing of Checking in at the desk, getting weighed and then nip back out again to the cafe just outside (the room that is not the building) to have a coffee and a cake to pass the normal hour at least while the blood waiting for the blood results. There were a few familiar faces around, but none of the ones I usually chat too, Adam was on the ward, he may be home for the weekend (hopefully) and Paula was I think on the ward as well, unless she had managed to go home, which I’m pretty sure she would have done as she seems to be doing really well at the moment. After having my drink I went back in an Pete, one of the younger patients, well a lot younger than me, ok a lot lot lot younger than me was there, so I had a chat to him, but as he didn’t need to wait for the results he nipped in before I did.

It eventually came my turn to go and see Dr Salim and although I had left my bag somewhere with my notebook in I think I managed to cover everything I normally would. I wont get the results from the Chimerism for about a couple of weeks, this will show me how much of my DNA has turned into Nigels DNA and how well the graft has gone. I’m going to have my T-Cells checked next week to check my Immune system, which is part of the same process, so that will be another test I’m looking forward to getting the results from, hopefully they will be good, they do expect them to be really low at the moment though which is normal at this stage (I have a sneaky feeling though that I might surprise them!). The paraprotein levels I wont know until next week, so a bit of waiting game with that one. I’m eager to see the results of that one as it is the main one I like to go by for obvious reasons, too much of this and I die quicker, but I’m hoping that it has lowered or at the very least holding an not pouring into my blood stream, I’m not up to dying just yet, I still haven’t sorted out all the things from the attic

My main blood results came back while I was there and yet again they are really good and I don’t need anything doing.

HB: 9.5
Platelets:47
WBC:4.6
Neutrophils: 3.4 the highest they have been for ages, in fact I can’t remember when they were last that high!

I even had some more good news, Dr Salim was suggesting that after next weeks visit I may only have to go to the hospital once a week and after that even fortnightly. That would make such a difference to my life not having to attend the hospital most days and to cut out all of the travelling and expense that I have incurred going backwards and forward to the hospital in Liverpool. Let hope everything holds up and they go as well as they are doing. I feel as though things are finally going my way and that with the vitamins and new drugs I’m on as well as trying to manage my diet is having  a seriously positive effect on the Myeloma and it’s something that I personally can influence, rather than just taking tablets that some pharmaceutical company has recommended that I take or try.

The temperature outside is dropping and I hope it doesn’t snow. My brother Nigel was supposed to be travelling over to see me tomorrow with his son, but it might be safer to cancel that if it snows as they may get stuck or just spend the whole day waiting in traffic.

I will let you know any further development on all things as soon as I do.  Keep warm in this cold weather wherever you are in the world.