Friday afternoon and evening

After my hospital appointment in Liverpool we drove straight back to Chester and met up with my brother Nigel and spent the rest of the day and evening with him. I did the dirty thing and ate out at McDonalds, something I haven’t done for a very long time. Somehow it tasted really really nice, but only if I didn’t think about the people who where making it in the background and where their hands have been (eewwww).

We talk a walk around TK max and Charito came out with something for the kitchen as she usually does. She was concerned about the amount of walking I was doing, as I don’t normally do that much walking all in one day, both at the hospital and then around a few shops etc. I felt OK with not being on any of my tablets as I was due to start them the next day.

We left Nigel and his friend still shopping whilst we set off home and Nigel joined us later at our home. It was great to have him around and we had a good chat as usual. Again we did an unusual thing and order a pizza for tea, something that I haven’t had for a good few years, so the last few days I haven’t been eating healthy at all. This week it will be back on my veg and fruit and to be honest I much prefer the healthy diet than the junk food, even though it was convenient at the time. I didn’t want Charito in the the kitchen cooking all day. Charito has been busy all week decorating the bedroom, it’s still not finished as she has been taking her time over it as it’s the first time she has done any decorating – I’m doing my usual job of just supervising at the start and then leaving her too. She is doing a great job for  beginner.

So the junk food aloud Charito have a bit of the rest whilst she is on holiday from the School and hopefully next week we can get out a bit if the weather is ok and enjoy the weather.

I think Charito was right though, I did walk too much and even though I had taken sleeping tablets in that night I woke up pain with cramp again. I tried the suggestion of bananas as well, but they didn’t seem to help even though I rubbed them all over my legs! (I didn’t really before I get any silly emails… I ate them).

Something else I begging to associate with the Lenalidomide…. In the past I damaged my nerves in my feet with the Velcade and Thalidomide causing neuropathy and I currently take Gabapentin to stop the pain, which works really well. However during the week of my Lenalidomide the circulation in my feet seems to improve and feet are generally warm, but as soon as I start a new cycle my feet are really icy cold, particularly at the end of the day when I go to bed. I can’t feel my feet they are so cold. I’ve started using a hot water bottle to try and warm them up. It is too hot to touch with my hands, but I can rest my feet on it without even feeling it. Something to keep in mind for anyone that might be starting a similar regime.

Friday at Liverpool–CMV mystery

Charito and I went to Liverpool hospital together this week as she is off work during the school holidays, so we have been spending time together.

We were in an out of 10z outpatients very quickly as Gill was back off her holidays and there wasn’t a queue so everything was done and dusted and we were on a way downstairs with my bloods ready to hand them in and wait the hour for the results to come back before seeing the doctor. The usual receptionist must have been on holiday and the the relief one also as there was a new gentlemen trying to cope with all of the patients arriving and the que was all the way to the double dours about 4 meters away (13ft) but we finally got there in the end. Had my weight taken as usual and gave in my bloods to the nurse.

Heather was in the waiting area but we didn’t get to have a real chat as Charito and I went for a cup of tea and coffee in the restaurant whilst waiting. No soon as we got back that the doctor called us straight in which was unusual, normally I have to wait at least another half hour to an an hour.

Blood results still holding:

HB: 8.7
PL 94
WH 4.5
Neuts 2.3

So they aren’t too bad, but this has been my week off from my Lenalidomide cycle, started again on Saturday.

Something new had come up this week with my CMV check.

I was told that the results from last week were showing a CMV results of CMV+ with a reading of 500 (not sure what the of what the 500 means yet)

Both myself and my sibling donor (Nigel) are CMV- so I was told it was unusual in itself. The doctor is calling me on Monday, depending on the results from this Fridays tests to see if I need to be back in to Liverpool for an appointment this coming week. If it as has got worse he wants to see me!

From the initial search that I have done there seems to conflicting or at least too much information to search through that will give me a difinitive answer.

CMV (Cytomegalovirus) is a common virus that most people have when they are younger and don’t even realise they have had it. It’s part of the herpes virus and spread through bodily fluid such as urine or saliva and spread when someone coughs or sneezes.  It causes few symptoms and most people don’t even realise they have it.

In people like myself who have had a bone marrow transplant (SCT) it can lead to organ damage. What I would like to know is what is the process, which organs, probably liver and kidney and although I have been told it is 500 I have no idea if that is high or a low reading. They implied it was a really low reading and they just wanted to keep an eye on it. If anyone has got a good web site link to the reading and and possible outcome for a CMV+ change on two CMV- people then I would be appreciated it, it the meantime I will continue to try and dig something out and find out what the Doctor days tomorrow when he calls me.

Easter

I’m not one for celebrating Easter, either religiously or commercially. I think personally both a waste of time. Charito on the other hand is very religious and I wouldn’t take that away from her. So on the Friday I took her to town, where there was supposed be a silent walk from the Town Hall to the a local church, starting at 11am. After waiting for quite a while nobody seemed to have turned up so Charito went into the Chester Cathedral instead. I stayed in the car for a while and then noticed that people had started to turn up for the walk later than was advertised on their web site. I didn’t think it would be appropriate to try and ring Charito in the Cathedral so left her there whilst I would go for a coffee in Baristas, just at the moment an old work colleague text me as I had just used Instagram to take a photo of the cathedral and posted it on Twitter and he had seen it and was in Chester at the same time and asked if I wanted to go for a coffee. So we both met up and had a good chat. It’s been a while  since I’ve actually caught up with anyone that didn’t have cancer as most of my time has been in hospital socialising with fellow patients, so I really enjoyed it. It wasn’t until afterwards that I realised that it must be a couple of years since I had seen him face to face although we had spoken over Google Talk in the past on our tablets, were both a bit geeky.

I hope to catch up again with him soon so that we can carry on our conversation and solve the worlds problems as most men do when they start chatting. It beats talking about shoes and bags or jewellery as the women do!

After the coffee I caught up with Charito, who was guess where …in Accessorize looking at shoes, bags and Jewellery!

Blood count up

I had my appointment on Wednesday and I was expecting to have to have a couple of units of blood on the Thursday; however even though my blood count last Friday was 8.2, it had now gone up to 9.3 which is good news. Dr Lee examined me and listened to my chest again and he said it sounded as though I had some fluid on my right lung, which is the side that I have been having the pain with. The last time I was examined they though I had pulled a muscle and since then one evening whilst lying in bed I felt a crunch which was painful on my right side of my chest as I lay on my left side. It felt as though a bone was clicking back in place or muscle was pushing it’s way out of my ribs. Either way it felt a lot better afterwards although still aching slightly.

So it did come as a bit of surprise when Dr Lee said it was a bit of a fluid sound. So he ordered me an X-Ray probably the quickest X-Ray I had ever had. I walked into the X-Room and plonked myself in front of the screen (done many times before) deep breath in, all done and out. I was there for a about 30 seconds I think! The results sent via computer to Dr Lee which he reviewed once he returned from having something to eat. He apologised for keeping me waiting, but I wasn’t too bothered as I was having my Pentamidine later on anyway.

The X-Ray showed something a bit abnormal from the last one I had. I was shown two X-Rays one from beginning of March and this new one. For some reason my right lung has adjust and raised a few inches higher than my left. He couldn’t give me a definitive answer as to why this has happened but and put it down to the fact that I must have damaged the muscles whilst I had the flue. They sent an electronic copy over to Liverpool so that they have a record as well, maybe they can shed some light on it.

I was hoping it would be a quick visit Chester, but I’d forgotten about the Pentamidine although that wasn’t really due until the Thursday and as they could get it ready for the Wednesday it made sense to get it all done on one day. So after arriving at 11am I was out of the hospital by about 3:30pm so it wasn’t really that bad compared to some of the other long days.

I have to last till Friday without needing blood and it will interesting to see how I have done lasting over three weeks without a top up. This is now my week off the Lenalidomide (Revlimid) after cycle three and start cycle four next Saturday. I’m hoping my bloods are finally setting down and platelets don’t get too low.

Coconut Macaroon and blood

No I’m not suggesting that you mix the two things! eewww. I had my fortnightly appointment at Liverpool hospital and had my blood taken as usual on 10z Outpatients. The wait to have my bloods taken, isn’t very long at all and I’m usually out within about 20mins and yesterday was no exception. It was good to catch up with a few of the patients I hadn’t seen for a while. One of them being my fellow patient from Chester, Heather who had just come out of hospital after having her Stem Cell Transplant. She was her usual jolly self and looked well, but I’d be the first to admit that looking OK doesn’t necessarily been you are doing well, but she did assure me that she was OK and it’s good to know that her son was helping her at home during her recovery process. Hopefully I will see her again next time I’m there if our appointments cross again.

After having my bloods taken I went downstairs for my appointment with the Dr and unfortunately as usual I had to wait over an hour and half before being called in. I have to wait for the blood results to come back and like yesterday, sometimes they take ages. I was getting really bored and fed up of waiting, when another fellow patient and I’d like think a friend now Adam turned up, although he did look pretty tired as he’s having to visit the hospital three times a week for treatment for his liver. He told me he was going to get something to eat and would be back later and sure enough about 10 minutes later he came back, but not empty handed, as a very welcomed surprise to me, he bought some cakes, one of them being a coconut macaroon. As mentioned I’d been waiting ages to be seen, the cake was very much appreciated as I was getting pretty hungry.  We decided to go and sit outside the Dr’s room and wait to be called as he couldn’t miss us their when he came out to call any other patients.

Adam and I only had about 15 minutes to chat to each other and I wish I  could have spent more time chatting, but I got called in to see the Dr (at least sitting outside the door worked!) When Adam is a bit better I’d like to meet up with him in Chester (he is from Chester as well) and go for coffee and a proper discussion. We talk about all sorts and we seem to be on the same wave length and discuss things from religion to how to cook prawns.

My discussion with the Dr was relatively short as well, we ran through my blood results, which are:

HB 8.2
PL 53
Wh 4.8

My Haemoglobin is a bit low and I would normally have blood if it gets below 8, but as I back in Chester on Wednesday to get my bloods checked again, we decided to leave it, rather than try and arrange form something over the weekend. My platelets have dropped again, and we are going to keep and eye on that as well. If need be I may have a rest in between this cycle and my next of Lenalidomide as that could be causing it to drop.

I’m not having any major problems or side effects at the moment, although sleeping at night is still and issue and last night when I did eventually fall asleep I woke up in agony with cramp in my leg again. So I’ve not had much sleep again after being woken up at 2:30am.

I’m just going to take it easy over the next few days and try not to overdo it and hopefully make it to Wednesday without being too exhausted.

10 Reasons why I procrastinate

1. 

Doing OK

I’m feeling good again, I was only sick the once. I’m not sleeping again, but that might be because I have ran out of sleeping tablets, but it’s probably not worth taking them anyway even if I had them over the next couple of days, as I took my Dexamethasone (steroids) last night which always keep me awake. I’ve been up since 3:30am which came around sooner today as the clocks went forward; so it was actually equivalent to 2:30am.

The Dex always gives me a boost of energy and I don’t mind actually taking them. I’ve found the evening is best, if I take them in the morning, it just seems to send be a bit doolally (stupid, more than normal – is that a contradiction in terms) or I just start to cry for silly reasons, watch TV for example.

I’m going out to the shops again soon, maybe I’m a glutton for punishment! I wont over do it this time though (I hope!).

I must admit, it’s good to have finally got over the flu/chest infection. It’s taking a while for me to catch up on all of the things that I have been trying to do. I still haven’t sorted the things from the attic and put them on Ebay. I’m getting there though. Also still need to sell the Toyota Celica and catch up on emails and reading blogs. It all keeps me busy though and passes the time. I’m also going to try and get out and do some more photography as I haven’t done any shoots for ages. I can’t remember if I mentioned that I’m also doing a bit of programming again, this time for the iPhone/iPad. Yes I have finally given in and got myself a Mac. Obviously I’ve still got the PC, so my desk is a bit full with the Mac next to the PC which is next to the Android tablet. Now all I need is an iPhone and an iPad to test the apps on. So if you have any requests for applications that you think would be a good idea to have, let me know and I will put them down on my list of apps to have a go at.

I thought I was doing OK

I had my bloods checked at Chester on Thursday and everything came back OK. In fact I was really pleased with my HB as it was 10.4, which surprised me as I was expecting it be low again. I wasn’t feeling tired, but I’ve had to had blood in the past as it was getting low even though I was feeling relatively OK.  The Dr examined my chest and gave me the all clear and said the pain I was feeling on my right side of my rib cage was probably a muscle related and to just keep taking the pain killers and see how I feel in a few more days.

So over the last couple of days I’ve been feeling really good with my energy levels being high. The good weather we’ve had has also contributed to feeling better, as I’m sure it does with everyone, a bit of sun makes us all feel good.

Yesterday, after picking Charito up from work at about 2:30 we had to pop into the post office and as it was a nice day and I was feeling good, we (OK I) decided that we should go into town and have a look around some shops. It’s been ages since I walked around town, several months in fact, so although it was tiring, I enjoyed the afternoon. We popped into Starbucks for a coffee and a cake, which is where I think things started to go wrong!

By the time we got home I was a bit exhausted and was out of breath talking to my brother on the phone but I just put that down to fact that I just put a light bulb up in the kitchen (maybe I shouldn’t have done that either).

We a had a curry for our evening meal, homemade, not from a take away, we normally have one a week. I couldn’t finish mine though as I wasn’t feeling too good. By the time I took my tablets at about 7pm I was feeling even worse. I decided to go upstairs for a lie down, but never got to bed because by the time I got to the top of the stairs I had to up-chuck (puke, sick, vomit, whatever you want to call it). So the tablets I’d just taken came back up. For those that are used to being sick, e.g. anyone who has had to go through a stem cell transplant will know that you get used to when you have fully up-chucked everything in your stomach. This was one of those times when I knew it wasn’t everything. I think the curry just didn’t want’ to come up, which is a good thing sort of, but for the rest of the night I still felt ill as though I was going to be sick again and my temp had started to climb. I don’t know why I am writing this as though it is in the past, as it’s now 5:45am and I’ve been up most of the night, if not all of it. I just can’t sleep.

I’m going to try and get some sleep during the day and hopefully feel a bit better later on.

A few things to catch up on

Once again it has been a while since I have blogged. I’m feeling a lot better now than I was before. The only lingering thing I have now is some pain in my right ribs. I’m not sure if I have bruised my side through the amount of coughing I have done over the last four weeks or it is the start of my myeloma taking effect on my bones. I must get it checked out next time at at the hospital, if it is still hurting. I can’t lie on my right side at the moment because of the pain and it starts me off coughing again.

Appointments

My appointments have changed now for the hospitals. I used to go to Liverpool every Friday and Chester every Tuesday. That has now changed so that I go once a fortnight to Liverpool, still on a Friday and once a fortnight to Chester, but now on a Thursday. So this week (Thursday) at Chester and next week to Liverpool on Friday and so on. I’m not quite sure what will happen if they take my bloods at Liverpool and find out that I need a transfusion, probably the same as we did last time; Arrange to have it at Chester. But that means a group and save on the Monday and then transfusion on the Tuesday. Do I go back again on the Thursday? Who knows, I will just have to wait and see. It will be ok at Chester if they discover I need blood on the Thursday as I will just go back again on the Friday for the transfusion. Hopefully though that shouldn’t happen too often and I wont need any transfusion.

Paraprotein

I’ve had my paraprotein checked again and the good news is that it seems to have plateaued at the 13 mark. Last time was 12.9 and this time it is 13, which I’m happy with. As long as it doesn’t go up, that is good news.

The difference between dogs and horses!

I’m sure if you live in the UK then you are familiar with the laws regarding dogs fouling public walkways etc and used to seeing the red boxes for disposing of dog muck. If you don’t collect the dog muck that your hound has decided to excrete, then the owner faces a possible fine! However I’m not familiar with such a law for horses! The reason I mention this is that over a week ago a horse (along with it’s owner)  has obviously been trekking  along the public footpath near me and decided to dump it’s load right in the middle of the pavement where it has continued to stay for the last week. Now keep in mind the size of a dog compared to the size of a horse! Now this footpath is used by families with pushchairs and parents take their children to school along this route sometimes with their small children riding their bikes. The horse muck takes up most of the footpath and nobody has taken responsibility for clearing it up. There isn’t another footpath that people can cross over too, they have to avoid it by going onto the road. Maybe I should put a bit sign in it asking for the owner of the horse to please clear the mess away. Perhaps all horse riders should carry a back-pack with a shovel (poop scoop) and large pink bag to shovel the mess up and carry it away with them, just like dog owners have too!

About time

I can tell people are starting to get a little worried that I haven't written on my blog for a while or responded to emails and facebook messages, so thought it was about time I give you a quick update.

As I previously blogged I have had the flu and it has really taken it out of me. I've spent most of the last three weeks trying to recover from it. I'm still trying now. I still have an infection of some kind on my chest and I was expecting to be kept in hospital today on my weekly visit to Chester. My temperature has been going up and down over the last few days going over the 38 where I suppose to go into hospital, well at least thats what I used to have to do, hence the reason why I thought I would be kept in hospital today. I was anticipating them taking me in so much that I had already packed a bag and had it ready in the car! Fortunately I they didn't keep me in, I really hate staying in hospital. I can't think of anyone or why anyone would enjoy it, not the most exciting places to spend your time.

Rather than a stay in hospital, I got examined by the doctor, who seemed competent and friendly and he prescribed me some more antibiotics and sent me for another xray. I say another xray as I had one two weeks ago at Liverpool, but as the systems aren't connected I had to have another one. I didn't have to wait around for the results though. I'm back in again tomorrow for my monthy pentamidine, so I'm sure they will have a word with me then if there is a problem.

So I'm back home again still coughing up yucky stuff and don't get much sleep, even though I'm taking sleeping tablets to help me get some rest. It just seems like it is taking an age to get rid of it. It's been one thing after another for the last three weeks. The Graft V Host Desease (GVHD) has got a bit worse but manageble with my skin drying up all over my body but mainly on my knees this time. I keep leaving bits of me wherever I go, so don't invite me around unless you want me to leave a little bit of me behind!

This is the first time I have managed to write anything on the computer for ages, actually that's a lie! I'm actually in bed writing this on my tablet (hence all the spelling mistakes as it doesn't check like the computer does).

At least you got an update. .. Now I'm going to try and get some sleep. To sleep properly I have to sleep sitting up because as soon as I lie down I start coughing. .... Oh well I will give it another try and hopefull this lot of antibiotics I have will finally clear it up over the next seven days.