Family

 

I’m enjoying Steven coming around each week. He helps around the house when I need little jobs doing and he seems to be enjoying learning about the photography with me. Sometimes I get him doing so much there needs to be more than one of him.

Grape Hyacinths

Well I have just found out what the pictures is of.  I was looking for something else on Flickr and just happened to see a picture similar to the one I took, well at least of the same type of plant.

Muscari

From Wikipedia

The genus Muscari, commonly and collectively known as grape hyacinths, are a group of perennial plants native to Eurasia that produce urn-shaped spikes of dense, most commonly blue, flowers resembling bunches of grapes in the spring. White cultivars also exist.

When is a bluebell not a bluebell

It turns out that what I thought was a bluebell that I was taking a picture of isn’t. (see picture below) As far as I know it is a weed of some kind. So if anyone knows if it is a weed or some kind of flower, leave a comment and let me know.

Pentamidine time again

I went to the hospital yesterday for my monthly pentamidine. One of the disadvantages (sort of) of stopping the my medication in preparation for the stem cell transplant is that my taste is working again. Which is really good news, most of the time. It just isn’t good when I have to have the pentamidine! It really is yucky!

The first time they set up the nebuliser it wasn’t working properly. I have Ventolin first to open up my airways, but it was coming through the properly. After replacing the bit where the liquid goes into (not sure what the proper name of it is called) and throwing away the old one and the ventolin, everything seems to work ok.

Once I have used up the Ventolin I then went onto the Pentamidine. The usual small room and doors closed without anyone allowed to enter why I am taking it was carried out. I have a cup of water to help take the taste away and the burning of the back of the throat. I have to take this for a few months after my transplant as well.

It’s one of those things that tastes horrible, but worth taking. I’d rather put up with the taste than suffer with Pneumonia.

At least with my taste working again I can taste Charitos lovely Peruvian food again. MMmmmm lomo saltado y estafaldo con pollo.

Green Water Droplets

Water Droplet Green, originally uploaded by Sean Tiernan.

Playing around in the sink! Not literally, I couldn't fit ...

... Anyway this picture was taken of some droplets of water from the tap and then I took a close up of fairy liquid bottle and then put the two images over the top of each other.

Bluebell

Bluebell, originally uploaded by Sean Tiernan.

Heres another one of a blue bell that turned out really well. These were taken last week. I'm not sure what we will be doing this week. Maybe some more flowers or some portrait work. If you click on the image it take you to my flickr page that has some other ones on there for you to see as well.

Garden Daisy

Daisy, originally uploaded by Sean Tiernan.

This is a daisy that Steven and I took a picture of from the garden. I'll start posting some of the photos I take and put them on here. I will hopefully start to take more photos and probably after my transplant start to take a photo a day and then at the end of each year of survival create a book with them in.

Trying to Keep busy and confusion at the doctors

It seems as though I have been neglecting the blog recently. It’s not that I have forgotten about it, but I don’t have much to write about. Nothing has changed, I just waiting for the extraction process in a couple of weeks.

I’ve had a bit of an ear infection (I think) it has been aching all week and my throat has been sore on one side. If it still hurts on Monday I’m going to go to my local Doctor. Talking of which, that is something that I had a bit of a problem with this week…

I needed to renew my Bonefos tablets, so I dropped off a request for the repeat prescription at my doctors a week ago on the Friday and they told me it would be ready for collection on the Monday. So sure enough on Monday I went back in the morning to collect it, only to be told that it wasn’t done as I no longer have the ability to request these tablets on repeat prescription! I asked why. Well you haven’t requested them for the last couple of months, the receptionist said. I explained that the hospital provided the last couple of months supply along with my last two cycles of chemo therapy tablets etc.

Bear in mind that these are the tablets that I have to take for the rest of my life.  Perhaps they knew something I didn’t !!!

The receptionist said she would speak to one of the Doctors and would I be able to call in later to collect it. ‘OK’ I said and went back later on to collect it. However; it wasn’t ready (again). For some reason they couldn’t write me the prescription and wanted to know the name of the people that wrote the last lot at the hospital (perhaps they thought I was selling them on the black market or was a secret drug smuggler). I didn’t remember the surnames but only the first names of those at the Oncology unit at the hospital, which I provided to them. After waiting for about half an hour in the waiting room, I was then told that they need to have faxed confirmation from the hospital before providing the prescription. Guess what … they apologised and asked if I wanted to wait (which could be some time) or call back later on. With the risk of catching an infection in the waiting area, I decided to go home and yet again go back later on.

I also said I would call the oncology unit to see if I could speed the process up. So as soon as I got in, which is only about 5 minutes away I called the hospital and spoke to Dee and explained the situation. Dee wasn’t aware of any request for a fax, but would speak to the receptionist who was away from her desk and let me know if there was a problem. They are very efficient at the hospital and nothing is too much trouble for them. (why can’t everywhere be the same). When I put the phone down I realised there was a message waiting for me, so I called 1571 and had a listen. It was left about 2 minutes after leaving the doctors to say that they had received the fax and the prescription was now ready. So I finally got my prescription later on  that afternoon.

The Chemist is only around the corner so I took the prescription there to collect, only to be told that they only had half of them in stock and gave me  a slip to collect the rest another day. The pharmacist was very helpful though and I have now arranged for them to collect the prescription from the Doctor for me and prepare for collection in advance. It wasn’t too much trouble to collect the rest of the tablets another day as I had to go back to the doctors to collect some paper work that I was waiting for them to complete that was taking them over three weeks to organise, but that’s another story!

So apart from that bit of a problem, nothing much has happened. I do feel a lot better not being on the rest of my medication and chemo, but obviously that is short lived and I know that I have a lot to go through in the next few weeks once the extraction process starts.

I’m trying to do as much as I can physically as well at the moment, but although I feel as though my mind thinks that I can do as things as normal, my body doesn’t. When I try to do the things I used to do like do some jobs around the house etc I get tired really quickly and sometimes need to go for a lie down afterwards for rest. I don’t want to end up just sitting on the sofa all day, so when I can I go for short walks and rest when I feel tired.  That might be me just getting old though and nothing to do with my illness!

I will be glad when I am the other side of the transplant and can concentrate on getting back to a normal life (well nearly) for while.

One week without the medication

Well it’s been a week that I have been off the medication now in preparation for my stem cell transplant. I’m feeling much better at the moment that I have been. I’m not having the days where I am totally exhausted. I still get tired when I try to do too much as my brain thinks it can do more than my body can cope with. Overall though I’m doing ok.

It’s been a good week. Steven has been down to see me a couple of times and my sister and brother have been up from Southampton. I haven’t seen them for a number of years and it was good to see them again.

So I’m going to enjoy feeling a bit better over these next few weeks before starting the extraction process which will make me feel quite bad.

A Catch-up

I’ve not written anything for a while, so I thought I would give a quick catch up of this weeks events, before the week is over.

We went to Nigel’s house (my brother), over Easter. I was hoping to have three good days, but unfortunately I was rather tired on one of them and got exhausted quite quickly. We did have a good time though and we managed to go to the pictures to see Kick-Ass. It isn’t really a young kids film as there is lots of violence and swearing in it. We enjoyed it though and funny as well.

I’ve been to Chester hospital this week as well and confirmed which tablets to stop and which to continue. The only tablets I am taking now is my bonefos in the evenings. These are the ones I have to take for the rest of my life to strengthen my bones as much as possible. I still have to take the pentamidine on the nebuliser every month and will continue to do so for three months after the transplant as well. Yesterday was my first day with any medication and without having to inject myself as well. My side should get better now as they are black and blue with having to inject myself everyday for the last five months.

I went to bed last night but couldn’t sleep I went back to bed at 5am but still couldn’t sleep, so I haven’t been to sleep all night. I will no doubt fall asleep later on today. That’s probably caused by not having the tablets at night I’m sure they will be other effects as well as it is a bit like going cold turkey from having all sorts of drugs in my system to suddenly having none!

Charito and I have been to the opticians and had our eyes tested. We both use glasses for reading and noticed our eyes getting worse. I wanted to get a test and new glasses before going into hospital for a month as I will be doing a lot of reading as there wont be much else I can do. So we picked up a new pair of glasses each yesterday and another pair in a week or so. They make such a difference. My last ones I could read and see the TV in them, but these one I can only read in them, the TV and anything further than arms length is blurred.

Lets hope the sun stays out – that alone makes me feel better, rather than the miserable cold and rain.

Time to come clean

Well some of you may have gathered that I wasn’t completely telling the truth on Thursday. If you remember it was 1st April. When I was younger I used to spend quite a bit of time with my mum helping her out with her crosswords, she used to love her anagrams. As I have had a bit of time to think about things I thought I would create an Aprils Fools Day post that was feasible and contained and anagram.

Have you worked it out yet? ‘Salad If Poorly is and anagram of April Fools Day.

Sorry to all those that fell for it! I based it on some of the known info such as spinach being good for cancer etc and there are some tests that show that eating such greens can help prevent cancers, but I dread to think what it would do to your body if you really did eat nothing but spinach etc for a month!

I have a whole year to think up the next one ….

Halfords Disaster

What should have been an easy day today, ended up being a bit of a disaster. I have my Chemo today and didn’t want to do much apart from rest. Unfortunately I needed a new headlight bulb for my car. So I thought I would drive down the road to Halfords and get them to fit the bulb for me. While I’m there I thought I might as well get them to check my oil and Coolant. I have also had a bit of problem with my rear wiper arm being a bit loose and I asked if they could tighten that up as well. That I way I could get all of the little jobs done for me in one go, as I don’t have the energy to do any of them at the moment.

The fitting of the bulb went ok, although I little bit of struggle as usual as there isn’t much room to play around to get the bulb in. The young lad managed it in the end though. When I say young lad, he was about 20 I think! (sign of getting old).  While he had he tools there he had a look at the rear wiper arm for me. Flipped up the cap on the top to get to the nut and used his socket set on it to tighten it up. He asked me to try it and I said ‘yep it seems fine’, but he wanted to tighten it a bit more. So he asked if I could hold the blade while he tightened it to stop it moving and began to turn more. I bet you can guess what happened next! As he was turning it was going through my head that he seemed to be turning more than he should. He wasn’t using a ratchet, he just kept turning. Sure enough. SNAP, He broke the spindle and the nut came of with the other bit in it!!

He didn’t know what to say or do. So I suggested he goes and speaks to someone inside and asks for advice. He came back and said he has spoken to his manager and could I go inside to fill out some forms.

To cut a really long story short,  they can’t fix it today because they have to get the part from Toyota. After talking to the Toyota dealer it is going to cost them about £350 to fix it as they will need to get a new motor that has the spindle is part of. Because of the cost of the part it has to be authorised by Halfords head office, which the guy in the shop said would take about 7 days to sort out.

So a simple 10 minute trip to Halfords ended up taking me over an hour to sort out the problem and at least a week without any wiper blade on the rear of my car.

Apparently the young lad will get a slap on the wrists for snapping it. Hopefully he has learned a lesson and wont try that again.

I didn’t have the energy to argue or shout and scream, which is probably good for them. I had enough trouble just standing up and talking to them for that long. I gave him the key to go and get the details from the car himself as I couldn’t keep walking back and too to the car with him just to unlock it and lock it again while he got engine numbers etc.

So if the weather gets really bad and I can’t see out of the rear window while driving, I will just have to ask Charito to open the window, crawl out over the back and wipe the window for me.  Do you think that is safe at 70 miles an hour on the motorway?

Medical Trial For One Month

The hospital asked me to go in and see them today. They have been looking for someone assist in a new Cancer research program. When I was first diagnosed with Cancer I agreed to be notified of any medical trials that were available. I will try anything if it helps.

Anyway, they wanted to know if I would try this new diet regime that is currently being trialled in the the US with some success and currently undergoing research here in the UK. It isn’t something instead of my current treatment, but as part of it.

What is it? well it is basically a new diet. For one month they have asked me to eat nothing but Green Salads. Lots of Spinach and Cabbage (it might smell a bit in the house, for a number of reasons). Although eating only greens might sound a bit horrible, for me it doesn’t make much difference as I can’t really taste anything anyway. I can have cereal in the morning, but for lunch I can only have vegetable soup and for evening meal mainly boiled spinach. As I’m writing this it sounds really bad and bland, but if it helps it has got to be worth it. In the US they have been trialling this ‘Salad if Poorly’ diet for the last 18 months with other cancers and proven to reduce the risk of the Cancer spreading. They have also tried it as an Anti-Cancer Salad. People have been on the ‘Salad if Poorly’ diet even when they are not poorly to prevent the risk of getting cancer and although it can’t be conclusive the initial results are promising.

So starting tomorrow I will be on the ‘Salad If Poorly’ diet for 30 days. I will let you know how I get on.