Sick of having blood and Happy New Year.

Actually the title should be more like sick whilst having blood. I’ve been at the Royal Liverpool all day today, from about 9:30am till 5pm having two units of blood.

Now I have never had a reaction before to having blood but near the final second bag, I started to feel hot. I was on the Transplant Unit in one of the rooms, Charito was with me. I tried to fall asleep but couldn’t, even though I’ve not been sleeping very well. I’m not sure if my temp started to go up or I was just feeling hot, but then I started to feel sick.

I had to jump out of bed quite rapidly and rush to the toilet, which fortunately was right next to me in the room (not literally, but through a door into the bathroom, I’m sure you get the idea). Only just made it, by the time I unplugged the drip and manoeuvred the stand to get it into the bathroom. I threw-up the lunch I was provided and everything else I’d eaten. Not pretty!

They gave me some anti-sickness and took my obs, but my temp was normal, which was good. I felt a little better after being sick, but not perfect.

I thought that was it until I was about to go and I was putting my shoes back on and I was sick again! I just wanted to get outside to get a bit of fresh air.

I took a couple of cardboard bowls with me, just in case I felt like I was going to throw up on the way on. Bear in mind that I had to drive home from Liverpool which takes about 40 mins through a tunnel. Not sure what I would have done if I thought I was going to be sick in the the Mersey tunnel! Fortunately that didn’t happen, but I was feeling great all the way home. As soon as I parked up outside on the drive, I opened the car door and was sick in the garden, couldn’t be helped. Charito washed it all away for me later on though. Oh the joys of being ill.

I went straight to bed once I got in and had a few hours sleep. I still haven’t eaten anything and it’s now 11:50pm nearly the New Year and I’m writing on my blog.

So that just leaves me to say Happy New Year to everyone and thank you for your support in all the ways you do over the last year and I hope the New Year brings good things to everyone.

Would you buy my book?

I think I may of mentioned this before, but I am thinking about writing an EBook and selling it on the Amazon Kindle store.

It will be 'My Life With Myeloma'- I was wondering what peoples thoughts were on this. Is it something that people would buy and read. I wouldn't sell it for much a couple of pounds maybe.

Let me know what you think by writting in the comments or email me directly at sctiernan@gmail.com

I'd love to know what people think prior to writing it.

Thanks

The Future Plans

I had a long meeting and day at the hospital yesterday.

I was there for 9:30am and left at 4pm. In between I had my bloods taken, two cross matches, my Pentamidine a bag of platelets and a meeting with the Doctor.

I’m back again for another long day today and may even blog from the the Hospital today as well as I’m having two units of blood at Liverpool.

As you  have guessed my blood counts have dropped over the Christmas period. I’d started to come out in bruises, which is always a sign of low platelets for me. My platelets yesterday were 18 and my HB was 7.9. I normally start to feel tired when it get below the 8 and so I’m being topped up again before the New Year period.

After this I’m back in on Tuesday and then again next Friday.

I’m going to have another bone marrow biopsy done on the Friday as they want to find out a bit more about what’s going on. Is it the Myeloma that’s making my counts drop or the transplant or maybe it’s just the drugs. The biopsy should give them that information. You will recall though if you’ve been reading the blog from the start, that these biopsies in the past have been very (and I mean VERY) painful for me. This will be the first time that I have had one done in Liverpool and it’s going to be done by the the Transplant coordinator herself, so the challenge is on to see how painful it will be, if at all, here’s hoping it wont be.

The doctors have lowered my Cyclosporine to only 25mg now as he want’s me to come off them suppressants quite soon. The Lenalidomide treatment is still on the plans and just going to see what the marrow is up to before progressing with that.

I wanted to know about future plans as well – e.g. if it does work what are the plans long term, when I say long term I mean in six to twelve months if I survive that long or even longer hopefully. There were  few options including what is called a DLI, which is a mini transplant using the Siblings (Nigels) stem cells again that we may even consider as a sort of top up. That may even ben in just a matter of months. Lenalidomide is still the best option on the cards that we would want to try first though to see how I respond.

I also asked about the trials and the new drugs that are being tested in America and how long they would take before they would get over here. Being realistic it would take a couple of year, but it could be sooner or much longer. No guarantees there. Pomalidomide and Carfilzomib are the two that look promising at the moment and at least I know how long I need to hang on in here until they start to come through the main stream. There would even be a possibility of getting onto the trails here or getting hold of it or similar in some kind of compassionate (trail) format, again depending on how things go and my situation.

I left the hospital yesterday, feeling quite optimistic, knowing at least what my goals are over the next few months etc. I always like to know what the next step is so I can deal with and know what to expect, good or bad.

I should be in the Hospital today for at least 6 hours, so I will catch up on some reading and blog a little. I may even get a bit of sleep as I am having the blood on the transplant unit on in one of the rooms they currently aren’t using. Charito is coming with, but she will probably nod off as well in the chair. We are taking our gadgets, netbook, tablet and kindle, so I will be able to keep busy.

blog to you all soon.

Nearly another year gone.

Revlimid–Risk after failed SCT

I’ve just been doing a bit more research into the situation that I am in and came across this article on the MyelomaBeacon site.

Revlimid Maintenance Therapy After Donor Stem Cell Transplantation Is Not Recommended For Multiple Myeloma Patients

Although there are slight differences, I think it shows how risky this process is going to be for me.

I’m currently managing OK with the Acute GVHD that I have have, but come the new year when I start on Revlimid the risk of getting Chronic GVHD looks more likely, so I’m sure they will be monitoring me even more closely.

Crackers!

Just my luck, every cracker I pulled today I lost at. ;-)

Happy Christmas everyone.

Heres to a the coming new year and seeing what challenges it brings.

I've eaten far too much already, but I'm sue I can squeeze a mince pie or a chocolate or twenty in later on.

I got a new keyboard for my tablet, which I'm trying out now, so it will make it much easier to blog on the move - e.g.. When in hospital and I'm waiting around. Thanks Amy for the present it's great.

Love to everyone who follows the blog and Happy Christmas from myself and Charito.

Butterfly

If you was to interview a butterfly standing on a branch of a Sequoia tree…

Now a butterfly lives for only a few days, but a Sequoia tree can for over a thousand years.

If you was to ask the butterfly

“ Do you perceive the object upon which you are standing as being alive? ”

The butterfly would say:

“Of course not! I’ve lived here all of my life, which is all of five days and it hasn’t done a thing”

Well it’s the same problem with the human being.

If you was to ask a person, perhaps someone who has lived for over a hundred years..

“Do they perceive the earth, which is really five billion years old, as being alive?”

They would say..

“Of course not! I’ve lived here my whole life and it hasn’t done a thing!”

 

http://youtu.be/R-Qio28mhsM

Kinobe – Lucidity

I love this.

VLOG–Christmas Hair Growth

Another VLOG for you this time full of Christmas Cheer.

Happy Christmas Everyone

It didn’t work!

Well I had some bad news on Monday, it looks like my second transplant didn’t work! The transplant itself, seems to have gone OK, at least so far. I have started to experience the Graft V Host disease symptoms that they want to see such as the skin peeling on my hands and now as well as my feet. I woke up on Tuesday morning and the skin virtually just fell off my toes and souls of fee. It is very similar to sun burn pealing. They are monitoring my levels very carefully to make sure that they balance my immune system with ciclosporin and steroids at the moment. I will still have to be very careful that it doesn’t take over too much, so my body doesn’t reject it altogether, but so far so good.

The point of having the transplant though was to either reduce the para-protein or at the very least stop it in it’s tracks from climbing further. I knew from the start that my levels were unusually high to even have the transplant, they like them to be as low as possible. If you recall I started on the Lenalidomide for about three weeks prior to transplant to see if that halted it as the Velcade I was on had stopped having any effect and it was already climbing prior to going if of the SCT. As mentioned I was told on Monday that they had already started to climb. Something that shouldn’t happen if the the SCT had worked on the para-protein.

This puts me in a bit of a difficult position as to what to do next. They can’t just wait for my transplant to process to completed as the the para-protein could climb even higher and go completely out of control. If they start to treat the myeloma (para-protein) whilst I’m still going through the process of healing from the SCT it could effect the recovery in some way.

The plan at the moment is that the SCT team are going to discuss with the Myeloma team to see if they can come up with some kind of solution to try. It may involve going on the Lenalidomide or just maybe pulsing some Dexamethasone to see if they can hold it off for a few months/weeks.

There is no guarantee though that anything they try may work. I’m in unknown waters at the the moment and don’t know even after the SCT had taken completely and they tried me on the Lenalidomide that it will work at all on me. It may do or may not.

The last few days have been quite emotional, having to tell the family that yet again it hasn’t worked and of course people are feeling guilty that it is somehow there fault (i.e. my brother) but of course it isn’t in any way. The transplant has worked but because of the Myeloma being so aggressive and progressive in my body already it just hasn’t worked on the Myeloma, which is nobodies fault!

The prognosis now is unknown, but I’m going to try and stay as positive as I can. It’s been difficult, especially while on the the steroids, as they make me even more emotional than usual.

I do feel better after telling the family and everyone having a bit of a cry. My plans having changed and my usual statement stand's ‘I’m not dead yet’

It’s just another hurdle that I will have to get over and find out what the next step is to try to extend my life as much as possible and then deal with that.

I was at the Royal today to have bloods checked as usual and going to have a couple of units of blood tomorrow (actually today as I’m typing this – Thursday) at Chester and then back to the Royal on Friday for another check prior to Christmas. Hopefully I won’t have any issues and Charito and I can have a nice Christmas day together, with my body fully charged up etc.

True Friends

I’ve written about true friends in the past and how I consider my neighbours really true friends and even consider them part of the family, so much so that we send each other brother and sister birthday cards etc, which is great.

This time I’m going to have a winge!, not about me and my friends, but how Charito has had to learn a difficult lesson.

As you know I’m always praising my wife Charito for the effort that she has been putting in both physically, mentally and financially to help us both deal with the Myeloma cancer.

She works three Jobs and sometimes when it is her holiday from the other jobs, she will take on another small job for those few weeks she has to have off from the other ones. None of these Jobs are particular fantastic and to be honest she is far more intelligent than people take her for. For example, most people don’t know that she took a Journalism Degree in her own country for TV/Media or that she used to run one of the top restaurants as a Manager for many years.

She is one of the most dedicated people that you could employ, never being late no matter what, if she had to get up at 4am to walk to work in the freezing cold, she would do so rather than let someone down.

Charito has not had any time off really during the last two years of my treatment, it’s been difficult for us both; I’ve found it really hard to let her do so much work without resting and at times hardly seeing each other by the time she gets home from work.

All the hard work she has been doing has been taking it’s toll on her own body and I’ve tried to get her to slow down. A few weeks back she hurt her leg, which at first we thought was a pulled muscle due to riding her bicycle to work. After a week had gone past her leg was still hurting, but she continued to work. I tried to get her to go to the doctor to get it looked at, but she didn’t want to let anyone down at work by having the time off, even though she was in a lot of pain. When I could, I have been driving her to work, rather than her having to walk to a bus stop which isn’t that close or get a tax which end up being expensive. It nearly cost the amount in taxi/petrol than it does for the amount of time that she works in the part time jobs per day.

Charito’s leg didn’t seem to be getting better and it was clear to me that it was something more than just a muscle and I finally persuaded her to make an appointment with the doctor, which would mean she would have to have the morning off work, as appointment are made on the same day. We have to ring up at 8am and they tell you what time to come in that day.  She had already arranged with her manager of one of the jobs, that she would be going to the doctors on that day.

So on the Friday we called and made an appointment which happened to be at 11:40am, even though she had already informed her manager that she was going on the Friday, she had a phone call asking where she was! She then went on to complain and wanted to know why she couldn’t make the appointment for next week when she off! When I heard about this I was fuming, she had already been in pain for three weeks and her boss wanted to her go another week, because it was inconvenient for her to have Charito off for that one day. She needed to go to the doctor on that day as it was hurting now, not next week, (although it probably still would be hurting).

So that was the first thing that made me angry and more importantly upset Charito as she felt she was letting someone down. Even though I explained that her manager was in the wrong and she shouldn’t get upset over it.

When Charito had seen the doctor, it was confirmed that it was more than I pulled muscled, she had tendonitis, which is damage to the tendon in her upper and lower thigh. The doctor insists that she has complete rest of her leg and signed her off work for two weeks and she may need to go the physiotherapy, depending on the recovery.

This just proved the point to me that Charito has been doing too much and really needed to rest. As a previous manager, I also know that it would be illegal for her to continue to work once she had the doctor sign her off work, as if she went to work and did any further damage or had an accident, she would not be covered by any insurance by the company as she is not supposed to working on the premises as the doctor had signed her off.

I explained all of this to Charito and although she was upset still at letting people down, she insisted on going to see her Manager to give her the doctors note straight away, although when we got to where she was working, the manager was too busy to see her!!! (scream!) It was a good job I didn’t get to talk to her.

So that was point one of being angry, but that was not what Charito was most upset about. Previously to hurting her leg she had arranged to cover for a friend (I use that term very loosely here). It was to cover for a few weeks her friends job while her friend went home to Peru to see her family over Christmas. Again this was only a cleaning job, but she arranged to do it more of a favour than for the extra money as due to financial situation now, it wouldn’t really make any difference with tax credits etc. but that’s another story.

Charito said she would still go and do this job for her friend and I said she couldn’t for the same reasons, but really wanted too, we were both getting angry and stressed over it, but she realised in the end that she couldn’t and she agreed it would only make things worse for her leg and even though she would be losing out on some money, we could still cope. So she felt a little better about it, but wasn’t looking forward to letting her friend down.

When we were home and she called her friend to let her her know, she came off the phone very very upset, not only had her friend been shouting at her down the phone, she wanted to know why she arranged to help and then only to let her down, she accused her of basically doing it on purpose as she knew her leg was hurting. (obviously Charito didn’t know her leg was so bad at that time as she was pushing through the pain each day). The thing that hurt Charito the most was her so called friend calling her selfish! Something that Charito is definitely not. It took me a while to calm her down and make a realise that if she was a true friend she would have understood that her health comes first and that she would never be doing something like that on purpose, as if she could. How ridiculous.

I was so angry and stressed, but tried to stay calm and reassure Charito (which for those that know me well, will know that I would have been fuming inside and ready to verbally rip this friend to bits – can you tell I’m still a little angry )

This friend was supposed to be dropping a little parcel off for Charito’s family in Peru, as we did for her mother last time we were there. However friend (HA!) during the same phone call told her she couldn’t take the 1kg package as it was too much extra luggage. So Charito has agreed to get it back and we will send it in the post as normal.

It has been a hard lesson for Charito to learn that not all so called friends are real friends. She still has some other friends here, mostly polish, who are really lovely. We can’t stop making new friends and finding really true one, but it is a hard lesson to learn.

At least now Charito is feeling better after calming down and trying to de-stress. Even after a few days off work, she has started to realise how stressed and overworked she had become. These next two weeks she be really good for her.

I love you Charito and so do your family and true friends – I can never praise you enough for the help and support you have given me and even though some people don’t say it enough, in there hearts I know they appreciate and love you dearly.

Yes this has been a rant on my part, but if I don’t say it, nothing will be done. I haven’t named the person, but if they read the blog, not sure if they do. Then they will know how much hurt and pain they have caused to my wife and I’m not prepared just to sit back and say nothing. Charito doesn’t know I’ve written about this and I’m sure she will find out and she may not like it either, but I written it because I love Charito and I know you would never complain like I do .

A few pics from 10z Outpatients

These are the few snaps I took at the 10z Outpatients Christmas get together on the Outpatient ward.

10z Outpatients 2011 Christmas VIEW SLIDE SHOW DOWNLOAD ALL

Nobody will thank me for these, as most of the nurses were having their hair done for their night out and had them clipped up. Others they look drunk in, obviously no alcohol was involved. I didn’t get a chance to take any serious photos, oh well, maybe next time.

Birthday VLOG

Today is my birthday so I thought I would do  VLOG instead of a long blog.

 

Credits:

Marco Panacia

Oceanskies79

Graft v Host

I thought I would show you a few pics of my hand with the GvHD. I couldn't show you both hands as my other hand was busy .... taking the picture of course.

I've moved rooms now to room 1. This room has a window, but further away from the toilet, has no mirror, but I have a constant dripping tap to listen too!

A had a nice surprise before. Jill the nurse I regurlarly see on the day ward twice a week came down to see me and gave me an invite to a christmas party for those that attend the day ward. Its only for patients and if we all turn up it will be a bit crowded in the smalll room. There will be mince pies and a christmas bingo. I might still be on the ward here by the time it arrives so I will pop off the ward and go up a few floors.

Thanks for all of the comments and messages over the last two weeks (doesn't time fly) again its good to know that I have the support and encouragement of others and that my blog is also helping those who are just going through the process.

Linda I read your blog this morning I hope EZ has caught the shingles at the early stages and start the treatment staight away I wouldn't wish the pain on anyone. I love the workshop by the way and the steps looked great.

Paula

Just a quick note.

For those of you that follow Paulas blog, I have had a text from her and she will be hoping to blog latter on. She has had internet issues.

Whats been goin on

Im going to give a brief update as to what has been going on over the the last few day, well as brief as I can.

Added after posting for clarity:  The hospital refered to here is the Royal Liverpool Hospital ward 7y I've been put into one of there spare rooms with no windows, room 9. I don't mind the peace and quiet though.

I arrived here on the Tuesday about 5pm by ambulance, after a being taken to my room I was very thirsty and asked for some water. I filled in a long form of information, I don't know why as they have my records here anyway, but I played along! My mouth was really dry so I asked for a drink of water. Yes a second time to a second nurse. I asked another nurse for a pillow and a second blanket. I like to use the extra blanket during the day to keep my main bedsheet tidy for the night as well as covering me up during the night if I get cold. The pillow I got straight away, I'm still waiting for the blanket after asking 3 times and have given up hope. Did I mention I was thirsty... well the third nurse finally got me some

By this time it was about 6:30pm to 6:45pm I hadnt eaten properly since my breakfast which consisted of cornflakes, so I asked if I could have something to eat. The nurse came back and said unfortunately the kitchen is closed, but I can make you some toat, only tome come back again to tell me they had no bread! She had found some rolls in the kitchen if I wanted some bread rolls with jam. OK i said, as if I had a choice.I only eat one of them. Later on that night we had a shift change and one of nurses popped her head around the door and asked if I wanted some toat, sigh. I said I would but I dont think you have any bread. She said we migh have some hidded away.... sure enough she found some and I had some nice warm toast.

Another instance I wasn't happy about was when having one of my drips for antibiotics. The antibiotics had finished and a flush was set up which takes about twenty minutes to go through. The flush was set up at 2pm. I know this because I was in a middle of a phone call with Nigel when she came in to set the flush up and I said to Nigel I would call him back which I did a couple of minutes later at 2pm, as its recorded on my phone. I buzzed when it had finished and someone came around and said they would tell the nurse...... I waited ...... nobody came. OK their buzy, so I waited some more and then finaly decided to buzz again. Again someone arrived and told me they would get someone. Eventually the nurse who set it up arrived. I asked in a joking manner, 'did you forget about me?' She retorted quite sharply that she had seven other patient to see! It was now two hours later before she got around to me. Quite frankly I still think that is unacceptable. I had to have another antibiotic and flush straight afterwards and by the time it was all done, I was nearly due my next dose.

Charito came to visit tonight, not arrivving until 8pm she asked one on the nurses if she could stay the night in the room sleeping on the chair. She said she would have to check. The nuse she checked with said she couldn't do that, to which I replied, 'she has done it before'. We don't allow it. But we're in a sideroom not disturbing anyone, but it was still a no. She told us that the hospital has the facility to use the hotel opposite for when people have problems travelling. Its organised by the hospital security. They asked if they wanted us to see if there was a room available, to which we said yes. She came back and told us there was a room at a cost of £28. I thoght they would put her up for free, but after discussing it, it just wasn't worth it. We were told the visiting times were from 1pm till 8pm. So basically Charito arrived in time to go home! She stayed for 3/4 of an hour and then set off back home. Walking to the train station and then she decided to get a taxi home the rest of the way as it was very windy. I called her at each stage of the way to make sure she was safe as walking in the dark through Liverpool can be dangerous as well as in Chester.

About me

Im still spiking a temperature, although we thought that had sropped for a couple of days. Diarrhea has eased off. My hands are very red and I have moisturising cream as well as steroid cream to help deal with it. The doc has also put me on some anti fungal and some new steroids. He wants to see how I get on over the next few days before considering to send me home. I also need a couple of units of blood which I'm having one now and another at about 6:30am I need to have my antibiotics after this unit!

Escape from Chester Hospital

I think I'm going crazy stuck in here!

Watch "Escape from Chester Hospital" on YouTube

Chester Hospital

Well I'm still at Chester hospital, which I don't mind. I would only be waiting at Liverpool to see the doctors on Monday. I didn't have a high temperature yesterday, but I still have the diarrhea. As for sleeping I didn't get much last night the rash on my hands and legs were very itchy, the top of my legs more than anything.

The itchiness seems to wear of during the day and come back in the evening along with the temperature.

I hope when I get to Liverpool that my stay is only short!

Change of plan again

It's  too late to go over to Liverpool now, so either I might be going over tomorrow or waiting till Monday. Monday is best as the full team will be in. I'd rather stay here for the weekend where Charito can visit than go to Liverpool just to be waiting around till Monday.

All change

Yesterday, Thursday, I moved ward into another sideroom. I'm feeling slightly better, I've been eating a little bit and the diarrhea isn't as bad today. It looks like the antibiotics are begginning to work.

I'm being transferee to the Royal hospital later on so that they can do a thorough check. They want to be sure that it isn't graft v host desease taking over my body. Although this makes it awkward for me or rather for Charito, it is better to get checked over and be sure I'm OK.

Charito won't be able to visit me because of the time she finishes work and travels to Liverpool it will be time to travel back home again. As well as it being very late. She agrees though it is better to be safe than sorry!

Im sure my memory is going

I've had another night of the same thing, mornings my temp is OK night it keeps climbing although according to my chartlast night it didn't rise! The reason being is that by the time they come to take my temp its gone down again and the reason it has gone down is that I know that I should cool down so I open the window and throw the covers back.

I've just had a visit from the medical team from the oncology ward, the people who I usually see and who actually know what they are talking about unlike the ward I am on now which is normally the ward people are put on as a tempory thing until they move on to a specific ward. It helps with the stats of patients being seen to from A & E so they meet the targets that the government has set. Anyway I started to ramble on! Dee a member of the team suggested that when my temperature climbs to buzz the nurse and get them to record my high temp so its on the record.

The doctor was asking me various questions about dates and such as how long have I had the rash for and things like that thankfully Dee helped me out with some of them. The one I really struggled with was the date I came out of hospital. I just couldn't remember at all, the Doctor even simplified it by asking what month. My mind was just a blank, it got worse, Dee asked where was you on bonfire night. Something I should have remembered because of all of the fireworks and also it was Nov 5 2009 that I was told I had cancer. So we gave up on that question.

It wasn't until after the team had left that I wondered how Dee the answers to some of the questions, I thought at first she might be psychic, but then dismissed that idea ;)  and remembered (hooray I remembered something) that she reads my blog. I knew it would come in handy one day.

Oh and if your wondering, it was October 19 (day 13 post transplant) that I came out of hospital. I looked it up on my blog straight after they left.