Pain in my chest

I went to the hospital this morning first thing. I’d had a cross match of my blood on Friday so today the process was going to be, have a blood test, wait for results and then see if I needed to have the blood that was ordered on Friday, possibly two units and maybe some platelets. However it didn’t quite work out like that.

Over the weekend my chest has been hurting, actually it’s been aching all last week on and of, but I just putting it down to indigestion, as that’s what it felt like when it started. My ribs have started to hurt on the left side. It’s got progressively worse and now it hurts when I breath in or stretch or even more so when I lie down, which makes it uncomfortable to sleep! I mentioned this to the Nurse on arrival and she spoke to doctor and others etc to get me checked out. My bloods were taken and sent off to see what the counts were and if I needed any blood or platelets.

After an hour or so, someone (Laura) came to see me about my chest and she had my blood results as well. The result:

HB: 9.1
Platelets 19
Neuts: 0.6 (yes that is point 6)

Again I was disappointed in Neutrophils I thought they would have climbed, but it looks like I’m still recovering from the last dose of Chemo and Velcade, but I would expect them to start climbing again this week, ready for the next dose on Monday. The platelets are low and Laura has ordered some for me. An X-Ray was arranged for my Chest, so I nipped out of the ward, down the corridor for an X-Ray and then back to the ward. I was seen by Dr Lee afterwards and he examined my chest and gave me a few thumps on the back as well (a little too hard for my liking, not that I like being hit on the back of course, but you know what I mean). Hopefully I wont bruise with my platelets being low! He couldn’t see anything wrong and examined the X-Ray which didn’t show anything up. They are arranging for another test, I can’t quite remember what it was but I know it had a CT in it somewhere. The test will be sometime this week (hopefully), it is to make sure I haven’t got any kind of blood clot (at least I think that’s what it is – I will get more details tomorrow). So I’m back again tomorrow for two units of blood and my platelets. As they had to order the platelets in, they wouldn’t be ready till tomorrow and with the time passing having to have my chest examined I would have only had time to have one unit of blood today. So the decision was made to go home and at least have the afternoon away from the Hospital and then go back again first thing to have two units of blood and the platelets. So that’s my day sorted again tomorrow.

There was talk of giving me the Growth Factor injections but I think there going to see if my Neutrophils increase on their own first. I will just have to wait and see how it goes.

Not Dead Yet

I’ve been thinking about starting my own campaign for people who are similar to me. That is people who have cancer and want to carry on life as much as they can. This  includes people who know that they are going to die of cancer like me, but just don’t know when and those that are going through treatment but have a positive attitude.

When you tell people that you have cancer it always gets a different reaction, their never sure what to say, and I understand that. There not going to come straight out and say ‘are you going to die!’ although you know really that’s what they want to know. Personally I just tell them straight, so they don’t have to ask - ‘I have cancer, I will die of it, but don’t know when, hopefully I have a good few years, but it might only be a couple, if that.’ but the important thing is I’m Not Dead Yet’

Since I started writing this blog I’ve read and been contacted by people who are similar to me that carry on with their lives and some that are not just carrying on, but doing amazing things. So to let everyone know that we have cancer, but we are able to carry on I’m starting my own little Not Dead Yet campaign.

If you have cancer and want to join in to let people know that you are still alive and able to do things, simple add the logo that I have created below to either your emails or your blog/website and if you want to,  link it back to here to explain what it is or write you own explanation.

Lets make people aware, that just because we have cancer, doesn’t mean we are dead just yet! We are alive and probably more keen on living than most people and determined to continue to do as much as we can when we can.

Link to this address: http://mylifewithmyeloma.blogspot.com/2011/03/not-dead-yet.html

Keep smiling :)

Friday Velcade

I hade my Velcade again on Friday although the blood counts were a bit disappointing.

Platelets  46
HB 9.6
Neuts 1.1

So I’m Neutropenic again! I was hoping they were climbing as last time they were over 3, oh well I don’t think I will get to see Brie with a glass of wine for quite some time.

I’m probably going to have a couple of units of blood on Monday and possible some platelets as well, depending on the blood results.

Nice day

It’s been a lovely day, both in the weather and how I have felt, although I think  the latter has been influenced by the former.

Did the usual and dropped Charito off at work and travelled down the road (literally it’s on the same road) to the hospital. When I arrived at the car park, the there was a car trying to open the barrier to the car park trying desperately to swipe their card in front of the sensor to lift the barrier, but it was clearly not going to open. I recognised the vehicle as the staff from Clatterbridge Hospital that use Chester as a base to on a few days a week for chemo treatment on the same day ward as me. Not that I remember their faces, although I would probably recognise them, it was clear that this Vehicle was the staff from Claterbride as it is written on the side of the car in big letters. So I got out of my car and walked over to try my card. Sure enough it opened first time, which the staff were grateful for and to be honest even it wasn’t the clatterbride staff I would have let them! Why because I would have been stuck behind them for ages if they had to wait for some kind of assistance to open the barrier,  so it wasn’t through any selfless act of kindness, more a selfish act of not wanting to hang around waiting, sorry guys!

Once on the ward I settled in to my usual seat, but only for about 15 mins as I was asked to move to the other side of the room as the side I was sitting was being used by Clatterbridge for the day, yes the same people I let into the car park. So another selfless act of kindness I moved to the other chair, I think it must have been the sun shining that made me do these things without any complaint, or maybe I’m just a really nice guy :)

The staff were their usual selfless selves and helping everyone in their usual jolly manner, I don’t think I could be nice to all of the patients all of the time. Sarah made me and James laugh with the stories of Laura having a flat tyre after a lecture in Liverpool and how she was asked to follow Laura home to make sure she didn’t break down again, only to end up going through the wrong Tunnel and then wondering where Laura was. Laura went through the Wallasy tunnel and Sarah through the Birkenhead tunnel. Somehow I don’t think that Sarah would ever be a good stalker!

After the bloods came back:

HB 10.3
Platelets 38
Neuts 3.10

I was given my Velcade but as my Platelets have dropped I have to go back tomorrow for a bag or two or platelets.

We were out of the hospital quite early and was away by 12:30pm, so home for lunch. After lunch we decided to clean the car as it was so nice out. So we put some music on in the house, opened the windows so we could hear it outside and made the car look lovely and shiny. James did the bucket lifting with the water, we both did a bit of the the washing/glass cleaning, but the vacuuming I left to James. The car was lovely and clean once we finished and I took some pics. It was too bright to get any really good pics of me inside the car as the lighting was all wrong, but we managed to get a few that turned out ok.

This is me sporting my new hair cut, I cut it shorter again as it was looking rather patchy and as Jodie (next door) told me, ‘as a friend I’m telling you this, cut your hair, it looks dreadful’ – so I shaved it a grade shorter. So here I am making cancer look cool in my shades and car.

And a montage of shiny bits after being cleaned.

Friday and the weekend catch up

I just realised I never blogged on Friday, so here it is on the Sunday and you get the weekend bits all in one go, aren’t you the lucky ones!

Friday was red nose day and I had planned to take the camera to the hospital to catch all the exciting things that were going on. I was going on my own today as James was bored sitting with me all day waiting around, I don’t blame him, I would be as well. So he stayed at home and did some jobs around the house, which was really good, he managed to get the garden sorted for Charito as well, she wanted to get rid of some of the old roses that were taking over the planet … ok not the planet, just the drive, but left unchecked, who knows where it would end.

So off I went with back of magazines, sandwiches (for lunch) and camera bag. As well as my red nose to join in the fun. Well it was a little disappointed when I got there, nobody was wearing their red nose and nobody dressed up. They did have a raffle for red nose day, but nothing special, despite my suggestion of a calendar girl theme! One of the nurse has made an effort an was sporting her Vivian Westwood Shakespeare t-shirt, but that was about it. I was hoping to get some photos of them dressed up in some way. I realise it would of been difficult to work in anything elaborate, especially with the type of work they have to do, administering bloods etc, but a simple bit I’m sure they could have done better…. I will put down, ‘must try harder’ on their report card, now that sounds familiar. So my camera stayed in my bag as it was even worth getting out.

Back to the medical side, I had two units of blood and my chemo pump removed as well as my stitches taken out of my chest. The pump finished earlier and I never had any issues with the alarm going over, which was good. Next time I have it I’m going to be trying a different type of pump. Not sure which one yet, but I think it will end up being whichever one they can fill the quickest as the one I had takes forever and they have problems filling it without getting air into it. So something to look forward to as what I will get (oh the joyous things we have to contend with). I had no problem with the bloods going in, especially with my line, it just connects and pumps into me. For some, like the lady opposite me it isn’t always easy to get a line in for them to use for transfusions. I see her most times I am in and it is getting harder and harder for the nurses to attach a cannula. I was trying to help convince her that having a PICC line was the way forward and it is, if they can’t get blood into her then it would damager her health, so putting up with the discomfort and of the line going in and the day to day life with it in your arm, has to be worth while. Although saying that I would recommend the hickman rather than the PICC, but I wasn’t sure if that was option for her or even if the nurses wanted me to suggest it to her, so I avoided it.  The nurses suggested suggested they talk to me about it as I have had one fitted. She did and hopefully she will decided to have one, I will let you know if she does.

Pump off and bloods in, it was nearly time to go home, just my stitches out. Now it can’t just be me, why do I always have things go wrong when they should be as simple as possible. The stitches were put in an unusual way (apparently) and the nurse had to go and get someone else to have a look as well, just to make sure. They tried cutting them out, but had difficulty with the scissors that they were using in the kit, so had to send out for another kit with a knife/blade and tweesers  etc. After much fiddling around, they were still unclear as to how it was attached to my line, if indeed it was. They did manage to cut it in the end after a bit of a struggle, none of this hurt by the way, just a bit awkward. All done and removed, but it turns out that it wasn’t attached to the line, just into my skin! so that means that Jen was right the other week and my line was just floating around and not attached in any way, no wonder it was bleeding and I was having problems with it healing. It’s all OK now though, nice and clean and settled in without any issues. I would have liked it tucked up again a bit further before putting on the plaster as it is just a tiny bit too long. I will make sure that next time it has a nice ‘S’ shape bend in it to make it easier for me.

By the time it was all finished it was about 2pm and I decided to go and visit James’ aunt that lives very close by to the hospital. I had planned to take some photos of them on the Saturday as I knew that my bloods were good and my energy levels should be ok as I was fully topped up with a couple of units of blood to keep me going.

I went to their apartment and relaxed with a cup of coffee talking to Chel and as I took my camera up with me I though I would take some pics of the lizard that they have in a tank. So I got my camera out and turned it on …….. errrrrr something was missing!!! It was a good job nothing was going on at the hospital as I had forgot to put the memory card back in the camera and the spares I had that I normally let in the camera bad I had taken out as well. Good job none of it was important, but I learned a lesson and I like to say it wont happen again …… but who knows how stupid I can be (answers on a postcard).

Sorry about this long blog … I could split it into lots, but you would still have to read it so it’s staying as one ;-)

Saturday James and I went to Ness (the aunt) and Chel’s (the husband) to take the photos. We took all of the lighting equipment, backgrounds etc. It was a tiring day as we took lots and lots of images. I will post some up here once I have done the post editing on them. It ended up being and all day shoot as there were lots of ideas and themes, including Vikings and muppets, not together, although that would have made an interesting photo … maybe next time.

I was tottally exhausted by the time we got home and after I had something to eat I decided I need to go for a lie down for a couple of hours. The couple of hours turned out to be all night and after having to get up in the night with a really bad stomach, I felt refreshed enough to carry on today.  James helped out in the garden again today and we got rid of some weeds as well as put some wood chipping down that we got from a the old tree that was cut down on the estate. It looks nice and tidy now and will look even better when I get a bit of colour in the flower beds, but at least it is ready.

Lots of editing to do on my images which will keep me busy and a bit of busy day tomorrow (Monday) .. oh my Velcade has been changed to Tuesday for this week as I have something planned for tomorrow so a day behind at the hospital.

I will write more soon….. i’m sure your looking forward to more of my ramblings :-) until then, enjoy life, no matter how short or long.

Velcade day

Arrived first thing, well just after nine this morning after dropping Charito off at work up the road.

Line flushed and bloods taken to await results to see if I can go ahead with the Velcade. In the meantime I was speaking to Sarah and Dee about my blog (hi guys, your probably reading this now). There now followers of my blog, not that it will we stop me writing about them! I have never had anything bad to say about them anyway, only praise for the way that they deal with all of their patients.

It’s been suggested that I should promote it further for other patients to benefit from my experience, I’m quite happy for anyone to read it and hopefully gain something from it. The only thing I don’t want to do is put people off having any treatment because they may read something on here that gives them a bit of doubt. I know from passed emails I’ve had from some people that it has given them doubts as to their own treatment that they are receiving. The only thing I would say to those is that everyone is different and if I had read my own blog prior to my stem cell treatment, it wouldn’t put me off going for it as it is the first line of defence and has to be tried – if it doesn’t work then there is always something else, such as the PAD I’m on now. The thing with Myeloma is that the treatment is selected to best suit the individual and you may not even have the option of a stem cell for what ever reason.

So if anyone has any ideas how to promote to other patients, feel free to make any suggestions. One idea that James had, was to get some business cards done with my blog address on. I have business cards with my phone numbers and twitter account, but it doesn’t have my blog on it. So maybe I get some some with the blog on just for Cancer patients etc. I don’t mind talking to anyone about it and discussing it with others, so another option maybe to see if Liz (McMillian support) or any of the nurses would like me to talk to anyone on an individual basis about it I’m happy to do that as well. Especially when your first diagnosed and unsure about how things are done and what to expect. Sometimes I think it is better to talk to a patient than a nurse who looks at it from a medical point of view and not necessarily from a patients point of view. Not that they wouldn’t want too, but that they can’t as they don’t have myeloma … although I’m quite happy to swap with any of them if they would like to at any point ;-)

Anyway I got my blood test results back an they are:

HB = 8.4 (dropped again as expected)
Platelets= 76
Neutrophils = 5.9 (Up and really good)

So there mostly as expected, but the Neutrophils was a pleasant surprise. The low blood count means I have to have a couple of units of blood. I was asked if I wanted it today, but that would have meant a long wait etc and I was hoping to get some things done at home this afternoon and as I’m back again at the hospital tomorrow so it made more sense to have it organised for then. Although I was just expecting to have my chemo pump removed tomorrow and was planning an afternoon trip to the hospital it’s now turned out to be an all day event again with bloods in the morning and then get the  pump removed later on the afternoon once it has finished. Not a real problem though as long as I know what I’m doing and where I’m supposed to be. I think James is staying at home tomorrow, rather than getting bored sitting next to me without internet connection. He’s still looking for a computer job somewhere local if anyone knows of any jobs going, he’s sent off lots of CV’s and visited lots of places in Chester yesterday dropping his CV off, so hopefully not too long before he gets a Job.

Red nose day tomorrow and I forgot to ask if the nurses are getting dressed up or doing anything as I was thinking of taking in my camera to take some pictures if they let me. If anyone gets a chance at Chester to read this and knows, let me know.

One last thing that I was discussing with Sarah was the formal letter of compliment  that I submitted a few weeks ago, about the fabulous work that they do and I was wondering if they heard anything as I had not had a reply either. She said she hadn’t … but when I got home what should I have through my door but a letter from Peter Herring the Cheif Executive of the Trust thanking me for my letter and letting me know that he will ensure that my comments are passed on accordingly.

Some special news coming soon, so watch this space!

Various ways to follow me and my blog

The best way to keep up to date with my blog is to sign up for my weekly newsletter fill in the form on the right.

 

Follow me with google connect

Don’t click on the image above as it’s just a pic, but click the button in the right column

Every time I blog I sent a message to Twitter.

You can follow my twitter post by adding sean_tiernan to your twitter account if you have one. If you don’t, you can sign up at Twitter.com

Along with my auto post to twiter with tags for #myeloma and #cancer there is another auto tweet from my feedblitz, which is the application that I use for my newletter as well as auto tweets.

If you wish to find out where about I am and you have a smart phone using Android phone or an iPhone, then you can follow me on Foursquare.com

the above is a QRcode to the website – if you have a bar code scanner on you smart phone just scan the code and it will take you to the site.

So lots of ways to follow me and my blog.

I’m also on facebook, but I rarely update it or log on.

If your a business person I have a linked in account, just search for my name.

For now I think that’s enough to get on with.

Any question, just ask.

Dexamethasone keeping me awake

Arrrrrhhhh – I didn’t get to take my Dex until about 3pm yesterday at the hospital as I had to wait for them to be prescribed. Now I can’t sleep.

I’ve been up since 3am. Catching up on blogs, doing some spreadsheets and catching up on emails that I have needed to write. So at least I’ve been making some good use of it. I can’t just lie in bed awake. I did try, but I started to think about work and that wasn’t a good thing. I end up getting stressed when I think about work. I think it’s because I worry too much. I was lying in bed thinking about what I had achieved over the last six years at work. Where it was when I started and where it was when I was initially signed off work and to be honest I don’t really know where it is up to now, but anyway needless to say I was getting stressed over it, so I just had to get up and did something else.

Going to get Charito up for work in a few minutes so thought I would just give a quick blog update before I do.

I’m going to write about about how you can follow me on Twitter etc later for those that don’t know how,  plus other ways to follow that I use to currently update family and friends. So if I don’t get around to it, leave me a comment and remind me as my memory isn’t working very well at the moment.

Anyway good news about this cycle and Dex is that I only have to be on it for four days and that’s it, which I think will be good. I also only have to take the Lansoprazole which is to stop stomach problems on the days I have the dex so another tablet I don’t need to take. So my tablet consumption is now only about 4 or 5 a day when not on the dex and 26 when I am. I still have to take the fluconazole on a daily basis, two tablets which is for fungal infections in the mouth (thrush). I’m suffering with sensitive gums at the moment and I’ve been prescribed some mouth wash to help as well. I bought some Listarine, but that was too harsh. I couldn’t eat any meet as I found it hard to chew over the weekend so I ended up having a meal of Mash and other veg with gravy and apple sauce! I’m also still taking my bonefos (sodium clodranate)

enough for now…. more later

Second PAD Cycle

Arrived at the hospital at about 9:15am, everything  was OK, my line was checked and cleaned and new dressing added, bloods taken and sent off, then settled down to wait.

I knew today was going to be a long day at the hospital from my last experience with Cycle one. The process is have bloods taken, wait for results, depending results, have bloods/platelets. Wait for Velcade to be made, wait for doxorubicin to made and then administer both if I’ve been given the go ahead from the Dr.

This time though I got the blood results back and it was good news. My counts were HB 9.3, so I still didn’t need to have blood, but my platelets were really good and have climed to 90, so no platelets needs. Even better was my Neutrophils which have now climed to 2.1, yippee. So overall it seems that the process is going well.

I still had to wait for the Doxorubicin to be made up, which for some reason take a very long time, I know that it is a slow process and they need to make sure that there is no air in it, but it took over 3 to 4 hours!

I finally got out of the hospital at 4:30pm.

I have the pump fitted over four days, so it will be removed on Friday afternoon. I’m also back in Thursday for more Velcade. So I have two days off from the hospital. :)

Old addition to the family

I was going to put the title of this one as New addition to the family, but though people might think me and Charito have had a baby!!!!

No this one is definitely an Old addition. James my youngest son (previous marriage) has moved in with me and Charito. He used to live near me in Chester with his Mum and moved down to Shrewsbury to study there. Now no longer studying, I asked if he would like to move in with myself and Charito to help me out when I needed it. I’m glad to say he said yes and moved in on Wednesday.

James has already made a difference around the house as he has been helping me sort out some of the things in the attic and done all the lifting for me. Charito also appreciates the help with the house work that James is doing and she has given him regular chores to do which has helped Charito immensely, giving her that bit more time to do all the other things she is having to do at the moment (I will blog about those when I have more news about it, but watch this space..)

James has brought all of my magic equipment down from the attic and gathered all of my magic books together. For those that don’t know I have been doing Magic from a very early age, not the horrible witchy type of magic… the Close-Up magic that you see on TV with cards and coins etc. The problem with this hobby is that it takes a long time to practice to get things perfect so that it looks good. A two minute trick could take many hours, days even years to perfect. Now  I’ve accumulated quite a bit over the years and obviously I’m not really going to get a chance to use it now. So I thought why not benefit from it in some way. So everything is going on Ebay. James and I are currently cataloguing everything and taking photos, which will take us a while! Then a big part of my life will go on sale. I will have a reserve on it as I’m not willing for it to go for nothing. I will keep you informed of how it is going and let everyone know the link in case they know of someone that would be interested in it.

Oh nearly forgot to mention, James is looking for a job at the moment as well, so if you know of any Jobs in the Chester area let myself or James know. Shop work or Computing, even if it Part time at the moment it will help.

Thanks everyone, but mainly thanks to James for making such a move and helping his Dad so much. 

PAD on Monday going ahead

I’ve realised I haven’t given an update on how I got on at Thursdays hospital appointment, so here it is. I arrived usual 9am ish and went down to the ward. They did usual check and obs and examined my line to make sure it was ok, no problems with that. Took some bloods and sent them off. Then it was a matter of waiting to see what the results were.

For some reason all of the doctors were on a ward round in the next ward and nobody was available to have a look at any of the results, not just mine, but anyone else that was waiting. I’d asked for a printout of the results so that I could see what was happening to my bloods so I would have a good idea. I knew that if my neutrophils had gone up, there was good chance of everything going ahead on Monday. Although it took a while to get the printout, in fact only about half an hour before seeing the Doctor, they were looking good. My Neutrophils had gone up as predicted to 1.5, platelets 57  and my HB count was 9.1.  So things were looking OK. I didn’t need platelets as that was fine; however the blood count was on the border line and the nurse wasn’t sure if I would need blood or not. Anyway the answer soon arrived in Dr Lee, although it was more a case of him nodding and shaking his head when talking to the nurse that was updating my notes and referring back to him with them.  It was felt no blood was needed so I could go home and come back again on Monday for a busy day.

So Monday is my next appointment and providing nothing happens between now and then to stop me having my second cycle of Doxorubicin that we be attached to me for the next week in the pump. I will also have my Velcade on monday, which is easy to administer, just a an injection into my line – they have to make sure all of the usual blood counts are ok first and see if I need any bloods or platelets prior to the dox and velcade, so it’s a lot of waiting around for everything to be checked, mixed and administered. I will also start back on the Dexamethasone once I get a prescription for it, which is a bit of a pain (not literally) as I prefer to take that in the morning rather than the evening, but Monday I will have to take them when I get home.

Something to try at your next party!!!

Becky has just sent me this on email ….. Just watch … this is definitely the type of thing that I would have got up to! I’m not sure it is good health wise, but funny as hell.

PAD Postponed

I’ve been to the hospital this morning expecting to start the next cycle of my PAD and have the pump fitted, but I’m home again after only being there for the morning without it. The reason being that my Neutrophils are too low at .6 they have to be higher. So it’s been decided to leave it this week and start it next Monday.

I’m back at the hospital Thursday to have by usual checks, to make sure that everything is OK.

I mentioned in my last post about not being too well over the weekend with a cough, well I’ve had a chest X-Ray this morning and everything is OK. I’ve been given some antibiotics to clear anything up that I might have so I’m in tip top condition for the Doxorubicin Monday.

I’ve had my line cleaned up again and it is much better than it was. It looks like it has finally stopped leaking and started healing really well. It took a while to get all of the dry blood and clots removed as it looked like black tar stuck on my chest. The wound in my neck where I have the hidden excess loop was cleaned up and the steri strips removed. The restriction that I was having in the movement of my neck turned out to be because of the steri strips, so I can actually move my neck again now without any restriction, which is great, I wasn’t looking forward to having to put up with that for the next few month. Now that the line is clean and my neck is normal I feel much better, just knowing that things are OK.

Charito was worried about my cough as last night I didn’t get much sleep as it was hindering my breathing and I was making funny noises all night. I only slept on and off as it was a bit of struggle to get a proper sleep. I spoke to Charito at work to let her know that everything was OK and there was nothing to worry about. She hates going to work and leaving me at the hospital on my own, I know she worries about me and to be honest I wasn’t sure if they would end up keeping me in today if they found out I had got an infection on my chest, but as it turns out everything is fine. Charito can relax now knowing that I’m OK and back at home resting.

I’m not sure how the I’m going to be feeling without the Dexamethasone this week though. I’ve been told not to take anything, so a sudden stop again. Although I had already taken them this morning as I was expecting to start the PAD … oh well up and down …yesterday was a bit of a spaced out day and today I feel quite normal.

What’s my body up to

Well I’m about to start the second cycle of the PAD regime. I wasn’t sure how it was going to effect me as everyone is different. I’m not on my Dex at the moment and have come right down from the high I have when on them. I don’  have much energy at today for doing much. My Hickman line is still a bit funny, I got it checked last thing on Friday at the hospital before they all went home. It had been bleeding again after it was cleaned up on the Thursday and by Thursday night it was the same as it was in the morning, so I just wanted to make sure it was ok. After speaking to Jen and the others it was felt to leave it as it was, as messing around with it, would only make it bleed again. It’s bled more over the weekend, I can see the blood filling up under the clear plaster, but I think it is just spread over a wider area and has finally started to dry up.

The wound in my neck where they have tucked the loop of excess line in is irritating me and a bit sore. I’m sure that when I move my neck it pulls on the line further down in my chest and is what keeps making it bleed a bit. It restricts my turning and looking up, but I will just have to put up with that for the next few months.

My stomach hasn’t been doing too good, probably because of all of the tablets I’ve been taking, but as some of the side effects are constipation or diarrhoea I’m never too sure if I should take Movicol to make me go to the loo or not. I’ve steered away from it at the moment and just seeing how it goes, and I think I have made the right choice!!! I will leave the rest to your imagination….

My hair is starting to fall out, only a little bit at the moment, but I think by next week it will be gone. The info I read said it will start to fall out in three weeks, and there not wrong, it is exactly three weeks since starting on the PAD. I’ve noticed that when I shave it isn’t as much and if I can pull bits of my hair out. The first bit of my hair to fall out is the same as last time, which, lets just say I notice when I go to the loo!

I’ve also had a bit of a cough the last couple of days, but I think it is a good cough. With my neutrophils being low and my immune system not working properly, I’m always worried if I am getting and infection. Although I’m not coughing as much today, yesterday it was most of the day. So how could I tell if it was a good cough or a bad cough. Well I found out that if your coughing up sputum and it is just clear, then it is normally the sign of a start of an infection, however if your coughing up any yellow/green sputum it means that the body is fighting any attack and that yucky stuff has done it’s job, just don’t try swallowing it again … errr yuck. So as my sputum wasn’t white, I think I’m on to a winner and it is my body trying to fight back whatever it is that is attacking today. I was obviously worried when it started because of the problems with my line that I have. At least it is Sunday today and I will be back at the hospital tomorrow to get it all checked out.

I hate going in to Hospital to stay and I worry that things are always going to go wrong at the weekend and then I have to go in again, which ends up being a nightmare!

Tomorrow I have the chemo pump again for the next 4 or 5 days as well as my Velcade, dex and the rest of my usual stuff. It will be interesting to see how my platelets are as I was fully topped up prior to the weekend and my blood count I’m hoping is OK as well.

Let’s see what this weeks challenges are….

Becky’s first blog post

I’m sure you would all like to welcome Becky on her first blog post and my first guessed blogger:

Becky I’m sure will have plenty to say once she gets used to it and will provide us with lots of laughs and tears along the way, but hey that’s what blogs are for. For me it gives a great way to vent any frustrations I may have and to write about the funny things that go on and in general just waffle.

I know Becky can type for england when she gets going so expect to see some long blog post which make great reading as well as the odd funny story and jokes.  I spent most of one day last week trying to keep up with all of the emails I was getting and it made my time in the hospital ward pass with ease, although I did get some funny looks laughing to myself when I was reading some of joke ones Beck sent about things children had said in the classroom.

If you missed her post as I’ve posted a few since then, you can view Becky’s first Blog post here – Greetings Everyone

Posting comments

Although I have mentioned this before, I thought I would say it again.

When writing posting comments  if you choose ‘Name/URL’ and just fill in your name, you don’t need the URL unless you want a link to your website, then the comment will be marked with your name.

You only choose Anonymous if you indeed want to be Anonymous. It’s life so much easier if we know who is leaving comments.

The first click will give you a preview and then submit your message if your happy with it.

Alternatively you can use your google account to log in if you have one or any of the other options available in the drop down.

Thanks

Sean

Tattoo

OK I have had quite a few comments and emails about my tattoo on my cheste! Lots of people didn’t know I had one or were surprised I did!

Well I don’t, I added the tattoo in Photoshop and it didn’t hurt a bit :) It was nearly a red nose, but I decided at the last minute to make it look a bit more like a real one. At least it distracted people from my sexy body! I’m not sure they would cope with the intensity of staring at my shaved chest.

Don’t forget the camera never lies ….. yeah right!

Greatings everyone

Sean has kindly invited me to be his guest blogger. Sean, I thank you, and many happy returns for yesterdays wedding anniversary. I have so much to tell, so to get my sea legs, thought I would just summarise what is going on with me first of all, then bore you to death in future blogs - I have a book to write, and many stories to tell. I, like Sean, am not frightened of telling people how I feel, what I have been through, and will in future blogs, explain in detail (perhaps a little too much at times) of what is going on, and what has happened to me.

The year I became Ill. I had completed my first ever Triathalon in the May, turned 40 in the August, and on September 3rd, a chest infection, that just wouldnt budge, got hold of me (it is very strange how certain dates now stick in my head).

Inbetween then and now, I have had a huge journey, some good, some bad.

People say "oh your so brave", but its my hubby and children (aged 6 and 8), who are the bravest of all. I, in reality, have no choice. Its do or die!!

My illness, was first diagnosed as Non-Hodgkins Lymphoma; then the Docs changed their mind to Intravascular Lymphoma. I have or had no lumps or bumps, so its been a pretty rough ride.

My chemos have been R-Chop, Eschap, Beam followed by a bone marrow transplant, and then 6 months later, the BMT obviously failed, I am now undergoing more chemo. The main poison of this one is Methatrexate. But for the first time also, I still have my hair, only loosing the grey hairs!! The Docs call me a medical mystery, on more than one front.

So I have just had my 2nd Eidoram chemo, and on Thursday I had a bone marrow biopsy, as an out-patient, to see how my poor body is coping, and if need be, to take more chemo. For the first time I was asked if I wanted 'sedation'. I refused, as this was now my 5th, I think I will manage, thanks. Well it was the fastest extraction I have ever had, over and done with in 5 minutes. Yes there is pain involved. But once the anastetic wears off, you feel like you have been kicked in the back by a horse (Im still looking for that damm horse!).

The next morning was the sweetest, My 6 year old daughter saw I was struggling putting on my boots, and she took over, then as I was putting the house alarm on, and Daddy was getting them into the car, she ran round and opened my door!!!

I have not had too many days of crying over all of this - but that one made me cry!! Oh and also, that now that they actually can see this blummin thing quite clearly in my frontal lobe, I am not allowed to drive for 2 years. That hurt - its like the straw that broke the camels back!!

I will leave on a funny note. I had a couple of friends visit the other day, and I was moaning about the food (even tho I have been left with no sense of taste or smell - a story for another day); one suggested I take my own microwave into hospital!!!

To my wonderful wife

Today is our anniversary and although we have a had a busy day today and things didn’t go quite as planned, I just want everyone to know how much I love my wife.

Charito is my Rock. She keeps me going on a daily basis and I’m not quite sure how she puts up with me at times, especially when when I am on so many sterioids (Dex) and my emotions are all of the place. The past five years have been wonderful and I hope that we have many more years together after this treatment.

 

Tu es mi vida, te amo más diaria. Seremos siempre juntos, hoy y por siempre.

Hickman line cleaned up

I went to the hospital today (for a change!) Had my blood taken from my new line, worked a treat, blood on tap. The dressing needed changing as I was bleeding last night and it dripped it’s way down the line. Jenny did a good job of cleaning it up, but she was a little worried that it wasn’t fixed (suited) in properly and she wasn’t sure if it was moving when she cleaned it, which it shouldn’t. I couldn’t tell looking down on it. She put a few strips on it and patched it up and got some advice from Dee and others and it was it was agreed it looked ok. I know they stiched it when they did it, because they were the stitches that I felt and with Sarah watching on she assured us that it was.

I was a little concerned about it just dangling there the way it was and was worried that I might pull it out by accident if I got it caught in my sleep. So that have put a loop in it which just lifts it out of the way and  secures it for me.

Just looking at it now, it has bled down the line again, but not quite as much. I’m not back at the hospital until Monday, so I will keep an eye on it. Jen said if I have any problems over the weekend to make sure I call to get it checked. I will see how it is tomorrow though and if need be nip in to get it checked out, although I have to go to Liverpool tomorrow in the afternoon.

My blood results came back and they were good.

HB 9.5 which should do me till Monday
Platelets 74 which is really high, the two units yesterday did me good, although still not clotting where the line is fitted!
Neutrophils are low at .8 put have increased from the .3 that they were, so going in the right direction.

Second cycle of doxorubicin on Monday again over four days.

I’m back on the pentamidine which I had today. So after spending time in the little room on my own while I had that I was able to go home, so I was away by about 2pm today, which was good.

Cheerios hickman line

Today I had my hickman line fitted. When I got to the hospital this morning Sarah asked me if I had eaten anything this morning as I was supposed to be nil by mouth because I was going to general anaesthetic, which was new to me, as I thought I was just going to have the local the same as last time! I told her I had some breakfast this morning at about 7am. When I told her that I had Cheerios, she laughed as it is a child’s breakfast and had great delight in letting everyone else know. I don’t care I like them :-) So with me having a breakfast I couldn’t have the general, which was fine by me. They were going to give me some Valium, but after I told them that I had my last line fitted with just the local they agreed it would be ok and probably better if I was fully compus mentus, although I’m not sure I’m ever that.

I had to wait to be told when I was going down as there was another person in front of me and then platelets were started. No sooner had I started on the platelets when the wheel chair arrived to take me down. Sarah came with and stayed throughout the procedure as she had never seen a Hickman line fitted before, even though she had been at the hospital for a number of years, so it was an ideal opportunity to see exactly what was involved and I didn’t mind at all.

I was expecting the local to hurt like hell as usual when first going in but it didn’t really hurt at all. In fact the whole procedure was the easiest and least painful that I had undergone. However as usual with me nothing ever goes perfectly and when he measure the line and inserted it, it was too long and actually went into my heart (so I was told by Sarah afterwards). So they had to pull it back slightly, they couldn’t take it out and start again, not sure why, but anyway the excess line had to go somewhere and he decided that he would put it into a loop and insert it under the skin and sew it up. You can see where about on the pic under the white plaster near my shoulder. I’m sure I will have some bruising come up soon. The only bit that I really felt was when he was stitching me up at the end which was only slightly painful as I think the local anaesthetic was wearing off.

It was flipping freezing in Surgery and I couldn’t wait to get back in the warm and stop shivering and go to the loo as I was bursting, I had to pee in a bottle as Sarah wanted me to stay in the bed, although I had to stand up to pee anyway so it didn’t really make any difference to me. I just hate using those bottles.

Sarah said to me afterwards that it was horrendous to watch and she didn’t realise how much was involved and she would recommend that all the nurses go and observe one to see what we have to go through. I was also told by Jayne another nurse later on that the actual nurse in the theatre told her that it was the worst one she had see as well. I would have loved to have seen a video of it afterward, shame they don’t do that, as I was covered by a blue sheet all of the time and couldn’t see a thing. At least I didn’t feel anything apart from the usual pushing and shoving.

Once I was back on the ward I just had to rest and have my obs taken every 30 mins or so to make sure I was ok. No problems though and I was able to go home at about 3:30pm.

Had a good laugh at the hospital and chatted to the guy in the next bed who happened to have myeloma as well. Although I’ve been going to the hospital most day, I actually quite enjoy getting out of the house and being around other people. It’s the only bit of interaction I get lately since not being at work, so I secretly look forward to it. I’d love to take my camera in and take some pictures, but I’m not sure they would allow it. I might ask at some point so I can post some pictures of the people I speak about.

I’m looking forward to my Cheerios tomorrow :-)

Neutropenic

  I’ve been to the hospital today for my usual checks on bloods etc. I didn’t need any platelets or bloods today, but they have ordered a couple of bags of platelets for tomorrow prior to having my hickman line fitted.

The blood results showed that my neutrophils have plummeted so I’m at risk of infections again, more so than normal. I have to go on the Neutropenic diet again and watch what I eat. The baked potato I had last night with tuna and mayonnaise, probably wasn’t the best meal for me!

I forgot it was Monday yesterday and didn’t take my dexamethasone, I asked the doctor about it and he said to just take it an extra day. So nothing to worry about really apart from my lack of concentration.

Personally I put the blame on Becky who distracted me all day with funny email and pictures. Becky has given me permission to post a photo of her on here…

Doesn’t she look pretty in her shiny wig :D

Becky currently doesn’t have a blog but sends out emails on a regular basis keeping people informed. I will try and get her to be a guessed blogger on here so you can get to know her a little. You never know you I may even persuade her to set up her own blog :)