Cycle 6 at Hospital

Yesterday was my three weekly visit to the hospital to get my next cycle of medication. All straight forward, usual bloods taken and then go in to see the doctor. My blood results are still looking really good. My para protein level have reduced from 56 to 8 which is great and my blood count is up to 12.

I got my prescription and dropped it off at pharmacy and went for my usual cup of tea (yes tea! the coffee is horrible) at the hospital cafe while waiting. It normally take hours, but I though I would just go back and ask, just in case. Sure enough it was nearly ready, so I waited for them to finish it off. They do the usual instruction before handing over the large brown bad full of goodies. So back to the car and put them in the boot as usual. When I got home and started unpacking them to put them away in the cupboard I realised they hadn’t given me the Dexamethasone. I double checked they hadn’t fallen out in the boot (the boot is empty apart from a plastic basket to put things in). The boot was completely empty, so it was a trip back to the hospital again.

I told the person at the desk what had happened and handed over my copy of the prescription. She went away and another person came, the same person who handed me all of my medication in the brown bag. She said ‘Are you sure it isn’t in there, I checked them myself, it’s in a white box’. Err Derrrr all of the medication I receive are in white boxes!! Not that I said that to her of course. I wanted to say – Unless I was mugged by invisible Ninja’s, you didn’t put them in, but I refrained and simply stated again that they weren’t in their. So she gave me another box of Dex to take home – Guess what, they were in a white box and this time no Ninja attacks.

I’ve taken my Dexamethasone today along with my Cyclophosphamide (Chemo) and the usual bunch of tablets and injections.

Hopefully I only have three more weeks of this, but I will know more on the 12 March when I go to Liverpool for my first meeting with them.

Not a good day

Well today hasn’t been so good. Nothing to do with my Myeloma, it just seems that lots of things are going wrong. My computer completely failed this morning. I lost everything that was on there and had to re-install everything. I lost some photos but the rest I have had to reinstall. That has taken most of the day to get fixed. I’ve just re-installed live writer, which I use to write this blog so though while I’m here I will write something.

One of things I am annoyed about is that I have been using Picasa to tag all of the images with people so that every picture I have has the persons name associated with it. It makes it a lot easier to search for images and if I upload them to the internet an email is sent out to the people in the picture automatically. I have lot of pictures and it takes a long time to tag them all. Well I guess I’m just going to have to start again. This time though I will see if there is a way to back that information up.

Also my second pair of glasses broke today as well. The other pair broke last week. So it looks like I will need to go to the optician at some point as well.

It would be nice to have some good news for a change! For example I’d like to say I’ve won the lottery … now that would be nice – fingers crossed for tomorrow night. the way my luck is going though, I will get a call from the National Lottery telling me I owe them money!!!

Another day of feeling tired

Today has been very tiring for me. I haven’t really done anything, but after having the Chemo yesterday the next day I always feel tired. For some reason I feel more tired than usual. I’ve been for a rest in bed for a couple of hours. I couldn’t sleep but at least I was resting.

I get tired going up and down stairs and my breathing seems to be more difficult as well. Fortunately I’m not sick due to taking the Ondansetron anti sickness which seem to really work for me. Hopefully only one more 3 week cycle after this one and then one more big hit of Chemo in the hospital prior to the transplant. I keep having to remind myself that in about 2 or 3 months I will be well on the road to recovery although at times it is hard to keep that in mind.

Chemo day and Dex

Taken my Cyclophosphamide and my Dexamethasone today along with my various other drugs. It makes me feel really tired and and exhausted. I’m so glad I’m not at work!

I hate Mood swings

The treatment is giving me really bad mood swings. Some times I’m really sad and other times and really happy. But the one that is really difficulty to cope with at the moment is how snappy I am and how little patience I have. I don’t know how Charito puts up with me I seem to be causing her a lot of upset at the moment and she always copes very well with it and brings us both back up again.

I couldn’t do without her helping me get through this. I love her lots.

Te amo muchisimo mi amor por siempre.

sick leave

I have decided that after three months of Chemo therapy every week plus the daily regime of tablets and injections I have to take, it is time for me to go on the sick from work and concentrate more on my health.

I have received a letter from the Royal Liverpool hospital and have my initial appointment with Prof Clark on Friday 12 March. Being at home means that I can rest when I need to.

  The other day I fell asleep on the sofa for three hours during the day. I wouldn’t be able to do that while at work! I felt much better afterwards.

It was getting too much for me having to concentrate more and deal with daily tasks, so I know it is for the best and my Myeloma team have been advising me for a while not to do too much and have been surprised that I am still working.

I don’t like letting people down, but I’m sure they will understand at work….. I hope!

What’s in a name?

It probably confuses people when I speak about my wife as Maria or Charito, so I thought it was about time I try to explain why -  at least as I understand it!

First my wife’s full name prior to getting married was -

Maria del Rosario Egocheaga Casas

In Peru as with many Spanish names the last part of the name is the family name of the mother. So what we in the UK would call the surname would be the Egocheaga part. Peru is also a very religious country and as is the case with my wife people are given names like Maria del Rosario or in English – Maria of the Roses in fact her sisters name is Maria del Pilar and her other sister is Mary Luz.

So to differentiate between all of the Maria/Mary’s in the family they use the second part of the name e.g. Maria del Pilar is called Pilar. Maria del Rosario is called Charo! Hang on why not Rosario … well I’m not sure really, I know that Rosario is Rosary in English and apparently Charo is short (allegedly) for Rosario.

OK so far we have two names for my wife – Maria and Charo both of which she gets called by friends and family; however there is another one as well. This is the one that her close family call her and I call her all of the time. In fact I rarely call her Maria. It is Charito. Adding the – ‘ito’ bit to the end of names is a common practice and is a way of showing affection.

So the names that she uses and responds to are:

Maria – Used when first being introduced to someone or formally with work colleagues etc.

Charo – More familiar, used with people who have normally known her for a long time.

Charito – Affectionate name used by close friends and family and of course me.

Hopefully there should be a bit of understanding as to why she gets referred to by different names. I sometimes call her other names, but that’s another story … :-D

Pentamidine via nebuliser.

I had my monthly dose of Pentamidine (Septrin) yesterday as well as my Cyclophosphomide (Chemo). I wasn’t feeling sick from the Chemo which is a good thing as last time I had the Pentamidine I felt really sick while on the nebuliser. The Ondansetron (anti-sickness) work really well for me and although I still feel a little ill normally, I certainly don’t feel as bad while taking them. I take them the day before, the day I’m on the Cyclophosphomide and the day after. Wednesday evening, 3 times during the Thursday and then Friday morning. If need be, I take more during the Friday.

The Pentamidine was still as revolting as last time, but I knew what to expect this time. The did the usual thing of shutting me in the room and not permitting anyone to come in while I was taking it. Which I can understand, as it isn’t a very nice thing to inhale, but I’m told it is good for me! It is better than getting pneumonia and dying – which is the likely outcome if I didn’t have it, so putting up with the yuck factor is worth it in the end!

I also had to have some more blood taken yesterday as there was another test that they needed to do that they didn’t do when I was there last week. A bit of a wait while they organised that, but only two minutes to take the blood as usual.

So in all I was at the hospital about three hours, most of the time waiting around for things to get sorted, but I had no other plans so I didn’t mind too much. I know I have said it before, but they are all really good on the Oncology unit, they always remember my name and all the staff recognise the patients and speak to them using their first names. It does make a difference to know that they are aware of who you are and what you are there for – it demonstrates that your not just a number on a hospital board somewhere, but they do actually care for you.

I should only have to have one more dose of the Pentamidine prior to my stem cell transplant. So I only have to put up with the yuck factor one more time hopefully.

Tired and a bit iffy

Not been brilliant today. Been tired most of the day and had a bit of a sleep during the afternoon. My legs are aching and felt a bit sick.

Apart from that I’m OK. ;)

Told off for not blogging

I’m getting text messages about not updating my blog, people are starting to worry – Mention no names (Lisa x x). So to stop people worrying, I’m OK. Just not been spending time blogging as much as James is staying with us at the moment so have been doing other things.

I’ve enjoyed the first week off work and certainly don’t feel as stressed. I still have the usual ups and downs with aches and  pains and feeling sick on certain days, but they are easier to deal with at home rather than trying to do lots of other things at work at the same time, so feel much better at the moment.

James has been decorating for me in the Kitchen, his choice, not mine, but very much appreciated. He has a bit more to do, but shouldn’t take long.

He wont be lying in tomorrow, he is going to drop off some things at his house with my next door neighbour (Chris – CJS Couriers) so he has to be up at 5:30 tomorrow. I suppose it makes up for his 13 hour stay in bed on his first night here till 3pm.

He will probably be glad to go back home at the end of the week for a rest.

Next Cycle

Yesterday was my visit to the hospital to get the next 3 week cycle of my CDT treatment. A little bit of confusion with Dr Lee though. For some reason he thought the last time I saw him was on the 23 December. I explained that that I had seen him in January (13th) which he couldn’t recall. I tried to job his memory by telling him that it was when he increase my thalidomide to 200mg daily – he looked at the notes and said that was on 23 Dec! I started to doubt myself then as with the tablets I’m on, I do get confused at times … but I knew I had been in on the 13 Jan – after a little digging though and working it out from the original start date, we got to the bottom of it. He had written the wrong date on the notes last time. Not sure why he put the 23 Dec, but it should have been 13 Jan – All sorted in the end.

I don’t think I need to see Dr Lee anymore, I have two more cycles to go and everything is going OK so all I need next time is a repeat prescription which I am going to get from the Senior Nurses, rather than Dr Lee.

Dr Lee is referring me to the Royal Liverpool hospital, so should get an appointment through the post once they receive it. Then onto the next step of the transplant.

How much is enough sleep

James my youngest son is staying with me for two weeks while I’m on holiday. He was coming with myself and Charito to Peru, but decided to come and stay here since being unable to go.

This morning I got up at about 8am and took Charito to work. When I came back James was still in bed. I decided to leave him there and not disturb him as it is his holiday as well and I’m sure he will enjoy the lie in and the rest form work and college.

I must admit though by lunch time I was getting rather worried as he still wasn’t out of bed! – So I did what any sensible father would do … leave him there and get my lunch :D

Charito finishes work at 3pm and just before going out to pick her up, James finally appears.

Charito couldn’t believe that he had only just got up. I hope he enjoyed it, because he wont be getting away with it again. Tomorrow might be a shock to him when I wake him up early. I’m sure he will get used to it before the two weeks are over.

Personally I can’t stand staying in bed late I like to get up early and do some reading or studying first thing.

My routine at the moment is get up, have shower, take tablets, inject myself, make coffee, make cereal, sit down and watch the news. While I’m off work I like to catch up on some of the reading that I have neglected over the last few months. I have a few books that I am going to read.

I don’t think you need to have about 14 hours sleep be able to do a normal days activities not that there would be much of the day left.

So James has a busy day ahead of him tomorrow …. which reminds me I must tell him about that!!!

My Life with Myeloma http://mylifewithmyeloma.blogspot.com Sean Tiernan

Day 1 of Holiday

Well this is the first day of my  two week holiday, not really much of a holiday though. We’re supposed to be in Peru for these two weeks I had the time booked off work ages ago. But obviously had to cancel since finding out that I have cancer. Hopefully sort out going next year once I have recovered from the transplant and in remission (fingers crossed). Not sure about the travel insurance though, that might cost more than the actual trip! I will worry about that bit nearer the time.

I’m glad I’m not at work! I feel tired without the Dexamethazone and doubt I would cope very well having to deal with the day stresses of work. I don’t think it is going to be a difficult decision for me to decide if I go on the sick or not. I have an appointment at the hospital on Wednesday so will discuss with my Dr about signing me off work.