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Saturday, 31 December 2011

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

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


The Future Plans

Myeloma Treatments mind map_High

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. Smile

Monday, 26 December 2011

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.

Sunday, 25 December 2011


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.

Saturday, 24 December 2011


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!

Kinobe – Lucidity

I love this.

Friday, 23 December 2011

VLOG–Christmas Hair Growth

Another VLOG for you this time full of Christmas Cheer.

Happy Christmas Everyone Smile

Thursday, 22 December 2011

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.

Sunday, 18 December 2011

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 Winking smile)

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 Open-mouthed smile.

Friday, 16 December 2011

A few pics from 10z Outpatients

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

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.

Thursday, 15 December 2011

Birthday VLOG

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



Marco Panacia


Friday, 9 December 2011

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.


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.

Thursday, 8 December 2011

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!

Monday, 5 December 2011

Escape from Chester Hospital

I think I'm going crazy stuck in here!

Watch "Escape from Chester Hospital" on YouTube

Sunday, 4 December 2011

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!

Friday, 2 December 2011

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!

Thursday, 1 December 2011

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.

Wednesday, 30 November 2011

Hospital - First night

After settling in to my room I continued with my fluids and later on that evening I was given two lots of antibiotics, the names of which fail me. My tablets have been changed again upon the advice of Liverpool.

I couldn't understand though why my spike in temperature always happened in the evening and not during the day. As on the other night, last night was the same, my temp started rising in the evening. After speaking to the doctor this morning she explained that the body naturally secretes steroids into the blood stream during the day, which is helping with fighting the temperature, however as the day/evening goes on this natural defence mechanism reduces, hence my temp will start to rise again. At least I have that one explained!

I'm still not eating properly and have diarhea in fact I've not eaten anything yesterday apart from a couple of spoon fulls of soup, that just virtually went through me! I'm going to see the diatician later so I can get some milkshake supplements.

They are going to do some peripheral culture tests later on. These are similar to the blood cultures taken from my Hickman line, but straight from my arm instead of from the line. This will hopefully see if the infection is in the line or just in my body.

It's now 10am and if anything else happens I will try and let you know.

Tuesday, 29 November 2011

Hospital stay

Well after a long wait I'm finally on a ward. Its 17:35 and I've just settlled into my side room. So its been a rather long day after arriving at about 11:00 am approximately. It hasn't been anyone's fault really, its just been one of those things, waiting for blood results to come bacck and having to liason with Liverpool hospital as well as trying to find me a bed!

There really not sure what the problem is, but are treating it as a possible infection. I will probably be in for at least a couple of days. I was asked if I wanted to go to Liverpool or stay in Chester. Chester is much better for me, it's closer to home and easier for Charito to come and see me, she works on the same road as the hospital, only five minute walk away. If I wading Liverpool she wouldn't be able to come and visit me at all!

Update again

A few things have happened over the last week or so. Ive started to come out with a bit of graft V host desease. At least thats what they think it is the start of. I have a slight rash on my hands and legs.

Ive started to drive again, locally first and ive driven once to liverpool.

The last few days i havent been too good. Last Thursday my temp was up and down  and spiked in the evening at 38 but that was with paracetamol, so it would have been higher.

I told the doctor at my friday appointment and he said I should have gone in to the ward to get checked.

My temperature was down to normal at my appointment on the Friday but I had to arrange for two units of blood at Chester on Monday.

Friday night my temp started to creep up again but didnt go over 38. I was very tired on the Saturday and Sunday and what felt like my bones in my neck, chest and legs were really aching. I put this down to needing blood though on the monday.

I was tired coming into Chester on the monday and my temp was climbing again the night before. I had the two units of blood and later on that evening my temp started climbing and I had a bad headache.

My temp went up to 38.1 with paracetamol and I had to have the fan on for most of the night. I didnt feel well at all.

I was supposed to be at Liverpool for my appointment but after speaking to a doctor on the phone and telling them that I didnt feel up to driving the long distance to liverpool they arranged for me to be checked out in Chester.

Im at Chester hospital now blogging from my phone. Im not sure if im staying in or not yet. I have a bag packed just in case!

Thursday, 24 November 2011

Marine sgt supporting occupy wall street

This video is of the marine who verbally tackles the police as to why they are being violent to towards the unarmed and unaggresive occupy wall street supporters, the very people he went war to protect!

Watch "[Orignal full version] 1 Marine vs. 30 Cops (By. J. handy)" on YouTube

Sunday, 20 November 2011

Pepper Spray Police Brutality Again!

When will this stop, how long must it go on for? I have blogged in the past about the violence that the police use against peaceful protesters. Why are they allowed to continue with such methods without being stopped.

The video below shows the police again attacking innocent people. This time students at a university.

The second video shows the Chancellor of the university doing the ‘Walk of Shame’ – this video also shows again the restraint of the protesters after the violent acts towards them.

I have also included some other incidents of the violence that is being committed on a daily basis towards these innocent non violent protesters across the US.

Police Pepper Spray Peaceful UC Davis Students

Pepper sprayed UC Davis student leads peaceful shaming of Chancellor

84 Year Old Woman Soaked In Pepper Spray By Seattle Cops

The aftermath , a priest and a blind woman getting maced by the SPD
NYPD Police Pepper Spray Occupy Wall Street Protesters (Anthony Balogna)

Wednesday, 16 November 2011

Day 41–Family

Yesterday I had my appointment at Liverpool. Every was fine and they have reduced some of my tablets again. So far everything is going to plan. The results from the second culture test from my line was back and showed that both lines were clear and OK, so no removing of the line – Yippee.

Early evening Nigel and his partner Ann came over. It was really good to see them and have a laugh. Charito was working (as usual) but then when she was home she cooked for everyone. What a wonderful wife she is.

We had a lovely curry. I enjoy the curries, because is one of the things I can actually taste. Not only that, it actually tastes like the things it’s supposed too! They had to travel back over to Barnsley , so they didn’t stay too late as it was getting a bit cold and it would probably be frosty or at list foggy on the way back.

I had a nice surprise today when Amy came around to give me some school photos of the the three grandchildren. For once the pictures are actually OK. Last time Jason the youngest, looked like he was just dropped like a sack of potatoes into the photo, lying on the table. This time they are all looking at the camera and smiling (sort of). I was also given a picture of them on a key ring, so I can carry it around with me every where I go.

I’m feeling good today, as I was yesterday. I’m still trying to drink more water.

I have another appointment on Friday, but that is just for bloods to be taken, I don’t have an appointment with the Doctor, so that’s another good sign of things progressing in the right direction.

Saturday, 12 November 2011

Day 37–Gumbling Temperature

The last week has been a bit of an odd one, sorry for not blogging, but I haven’t been well off and on. It’s not been anything serious, my temperature has been going up and down and peeking now and again at 38, what the doctor called a grumbling temperature.

The hospital took cultures from my line and discovered I had a bit of an infection, but so far the results are showing it isn’t that bad and I don’t have any serious effects from it. At the beginning of the week I had a headache and a bit of sickness, but again only slight.

They have took cultures again yesterday (Friday) and hopefully this time it will show clear. I will have to wait till my next appointment on Tuesday to find out.

They hare reduced a couple of tables to try and balance things out as my body excepts and adjust to accepting Nigels Bone Marrow.

I’ve had some good news, I had a test a few weeks ago called the Chimera test (of which there are different types) the results from this test showed that my T-Cells (CD3) which are the cells that help fight against viral infection are now at 89% and another type of cells (CD13) that also helps fight against viral infections are at 93%. So that shows that the cells I have had from Nigel are now working on fighting infections.

On a non medical theme now: Nigel coincidentally had an appointment at Liverpool yesterday, so it was good to see him. He had to get up at 4am to be at Liverpool for 10am, so he was very tired after the journey and couldn’t wait to get home and relax.

Another good surprise was that Paula and Bernard turned up as well and as usual we had a good laugh. We got a few looks from the other patients for laughing so much, but I would rather be happy than miserable. I think I will get some T-Shirts made with the slogan: Yes I have CANCER, but I’m ‘not dead yet!’

It was good to see everyone and cheered me up as I haven’t really spoken to anyone properly for the last few weeks.

I hope the next few weeks just keep getting better. I slept in today till 11:30am I still have bags under my eyes as I haven’t been sleeping properly in the night. Hopefully I will be able to get back into a proper sleep pattern.

Monday, 7 November 2011

Days 30 & 31–Temp and 2 Years

Although I did write something on here on the 30, It was to cover day 29. I think I was too sleepy and shaky to recall that it was the 5th of November, not that I love Guy  Fawkes Night, but rather it was two years exactly that I was told that I had cancer. So for the last two years I have been in treatment. The first year to get my first transplant using my own stem cells. I was told just before Christmas 2010 that it didn’t work and started my second treatment straight away which was very intense and as you all know I have just had my second transplant.

I’m hoping that this one has worked, as they wont know properly for another couple of months, this time I’m hoping the tell me that it has worked well and I can enjoy Christmas for once and start to  have some kind of quality of life!

Saturday started off OK but as the evening went on my temp started to climb it didn’t go tremendously high, but it just touched 38c as I went to bed. So to cool down I slept with the covers off me and put the fan on that Jody (my wonderful next door neighbour, who I call my sister) gave me. I left it on all night and kept checking it through out the night. Charito goes to the toilet about a million time a night, well it feels like that anyway. She made sure I checked my temp in case it had gone up any further, but fortunately it started to come down and by morning it was at about 37.2 which is OK. I kept monitoring it throughout the day, but it was normal, so I didn’t worry about it. I’m not sure why it went up and if it stayed at 38c I probably would have had to go into the Liverpool hospital for them to keep an eye on me. I will mention it to the doctor tomorrow at my next appointment.

Sunday was spent relaxing with Charito and watching lots of the Fringe episodes back to back. It’s one of the best series I’ve seen. It’s a bit like the X-Files and keeps you wanting more with each episode. I’m coming to the end of series 3 now. I hope series 4 is available soon, as they only have series 1,2 & 3 available on BT on Demand.

For the first time this winter we have had a bit of frost overnight only slightly, but it felt like the proper winter had started with it being so cold.

Saturday, 5 November 2011

Day 29 (Yesterday)–paraprotein shaking and tired

I didn’t write this yesterday, which is Day 29. I’m writing this now on day 30 and it’s 8:30am.

I was at the Royal Liverpool Hospital yesterday and had my bloods taken. Once the bloods were done I went down to the clinic to see the Doctor. Now I thought I was to go to J-K clinic which is were I went on Tuesday, now when you go to J-K clinic, you just sit and wait for the doctor to come out after seeing the the last patient, there is no receptionist to ask. So I sat down and waited and waited some more until it got to the point were I thought this isn’t quite right. So I knocked on the doctors door and opened it and nobody was there. I went around the corner and into another room where there was a doctor, but not one of mine (at least I think she was a doctor) I asked if Doctor Salim was running a clinic and she had no idea.

I went back upstairs and asked the nurse if I should be on J-K or G clinic and she said, oh sorry it’s on J-K on a Tuesday and G Clinic on a Friday. I didn’t mind the waiting and the confusion as I still had to wait for my bloods to come back, which takes about an hour.

I went down to G clinic and they had no record of me and had to go and asked Dr Salim who told them that they would fit me in with one of his colleagues. The then had to find my notes as they didn’t have them. Eventually they found them up on 10z where I had my blood taken and they were sent down, 10z being on the tenth floor and G clinic on the ground.

When I got in to see the doctor, he went through the usual question. Also as usual he told me that I need to drink more as my urea test is showing low.

With him telling me this I knew that my blood results must be back from today. Last Tuesday I had the test to tell me what my paraprotein was. He brought the results up on screen and pointed out that they are showing 200 (OMG). Thank goodness though he was telling me the Kappa Light Chain reading. I said that doesn’t mean anything to me, as I’m normally told the paraprotein level, after him giving me a little speech about the Kappa Light Chain reading, I had to ask again does he have the paraprotein level. Eventually he told me that it was 55. If you remember prior to my transplant it was in the 20’s so it has gone up over double. Thankfully though he told me that it was too soon to tell as it will go up and down and then it is the average of the Kappa Light Chain and the Free Lambda over a period of time. He reassured me that it was nothing to worry about. I wasn’t really convinced, but I will have to wait probably another couple of months before I can find out for sure. I suppose I was asking too much to find out after only 5 weeks of having a transplant, most people are still in hospital still.

Now onto the other issue I’ve been having. I’ve been very tires as I mentioned in my other blog post. I’ve also had the shakes, with my whole body shaking at times. My hands would twitch as well. It was making it difficult to type or use my Tablet computer as my fingers would involuntarily press random keys and tap the screen. I felt as though I wasn’t in control. I told the Doctor about this and he told me that it was quite normal and I would feel very tired for several months as my body needs to recover.

cyclizineWhen I got home I was taking my tablets the first ones being the cyclizine which is the new anti-sickness drug they gave me last week. That’s when alarm bells rang and the connection with when I started to feel very sleepy. I looked at the label on the bottle and it says it may caused drowsiness and a warning not to drive. Mmmm that’s also the time the shakes started, so I didn’t take the cyclizine, but too the ondansetron instead, which is another anti-sickness that I know I’m ok with. After taking my other medications, I went strait to the computer to find out what side effects the cyclizine has. Although on the first medical sites it didn’t list any of the shaking, I then found a user forum with feedback from patients who had been on the cyclizine. There were a couple where they were saying that it worked OK, but there were more that were saying not to touch the drug as it nearly killed them! This is the link so you can read it yourself, rather than me list them.

Cyclizine user experiences

I decided after reading this that I would no longer use the cyclizine and go back to the Ondansetron which I felt much happier with. The result this morning, well I no longer have the shakes and don’t feel as sleepy as I have done over this week. So hopefully I will have a better week this week and wont be shaking or having to go to bed all of the time. All just because of a drug that I used as an alternative, to see if it worked better.

I will blog latter on today, which will be Day 30 and let you know how I feel after having a day without it.

Thursday, 3 November 2011

Day 28 Post Transplant–Very Tired (Day 27 as well)

I can’t believe how tired I am. I don’t normally fall asleep in the chair, but over the last couple of days I have been dropping off to sleep while watching TV, which isn’t like me at all.

Yesterday I was too tired to do much, hence I didn’t even get to blog, I went to bed instead!

I’m having trouble staying awake and concentrating on anything at the moment. I’m just so tired, I want to sleep all of the time. I think I could sleep most of the day and night at the moment.

I’m forcing myself to do things, like writing on the blog, just to keep me occupied so I don’t fall asleep.

On another point, Sandy raised a point via Twitter:

sandy_parot@sean_tiernan Aren't you at day 30? It will be another cuppla weeks before you begin to see real energy upswings, I suspect. Intending it!!

The way the days are worked out is the day you have your transplant, they call Day 0 and each day after is consecutive starting at day 1. So my transplant occurred on the 6 October then day 1 was on the 7 and so on to today which is 3 November, Day 28.

I hope that clears things up.

Right I’m off, lets hope I don’t fall asleep and hit my keyboard with my head!

Tuesday, 1 November 2011

Day 26 post transplant–Hospital Visit

I was off to the Royal Liverpool Hospital again today.

Nothing really exciting happened, I had my blood taken, dressing changed and it was fortnightly (shouldn’t that be fortdaily?) dose of Pentamidine. After my bloods were taken and there was a lot taken today as they took blood for SFLCA, which is a test to find out about various things, including my paraprotein levels. Also they took a Chimera test, which will show if my DNA has changed to Nigel’s yet.

I’m back again at Liverpool on Friday and will know my paraprotein level then. I won’t know the results of the Chimera test for about two weeks, as that takes longer for the results to get back.

I waited for my blood results to return after seeing the doctor on clinic and getting a big bag full of tablets to replace the ones I had used at home.

They results are:

HB: 9.3
PLTS: 103
WBC: 2.7
Neuts: 1.2

As you can see my Neutrophils are very low, there was a discussion to give me some GCSF injections, but they decided to see how it was on Friday, before doing that.

Getting the Taxi/Ambulance home was a bit of pain today, the driver who took my had to go to another job and I had to wait nearly an hour at the doors for another car to pick me up. I was supposed to meet him outside, but after a while standing up outside in the cold I decided to go inside and keep an eye out for him through the window wear it was warmer. I still very tired though standing up for that long and couldn’t wait to get home.

Once I got home, I made something to eat and sat down in front of the TV. I couldn’t keep my eyes open though and kept nodding off in the chair, which isn’t like me.  So I decided to go to bed for a rest.

I hope tomorrow can be another good day, I suppose like always I will just have to wait and see what tomorrow brings.

Sunday, 30 October 2011

Day 24 post transplant–Climbing the mountain called stairs

Yesterday was a good day for me especially when I had to go upstairs to the toilet. I know exciting isn’t it, but I actually managed to walk up the stairs relatively easy. I still held onto the banister, just in case, but I managed to get to the top. I didn’t have to take crawl on my hands and knees to get to the top, which I have done in the past. I didn’t have to take one step at a time, by that I mean put my left foot on the first step, then my right foot on the first step and carry on up the stairs in the same fashion. No, this was a proper walk up the stairs and getting to the top without being that much out of breath and without having to virtually pull myself up by the banister.

cup-for-walking-upstairsI felt as though I had really achieved something, I didn’t get a medal awarded to me or a cup though, which was a shame. It was enough to know that I had the energy to make it to the top.

Today though is a different story. I’m back to taking it slow up the stairs and being tired when I get to the top. It was good while the energy lasted and I hope to have more days like that. I know I’m going to have my good days and bad days. As time goes by I’m sure I will have more good than bad until I can eventually get to some kind of normality again and start to get out of the house etc. Who knows, I may even be able to run up the stairs one day!

Saturday, 29 October 2011

Day 23 - catch up talking about day 21 & 22

I thought I should catch up on the last few days.

Thursday day 21 post transplant:

I went to the hospital for 11am via the taxi ambulance. It was just for a blood test to see how I was doing. I also wanted to find out about my sore eyes, the lung issue that Chester hospital had mentioned and what I call my Hobit it feet (my swollen feet). It turns out that my eyes stinging and feet problem are nothing to worry about, its quite common and due to my body being very tired. My feet get gradually worse during the day, but are OK once I have rested them overnight. They listened to my chest and also heard what the doctor heard in Chester. My right lung was taking in less air than my left. They couldn't hear any fluid, but with my feet swelling, there could be a possibility of it being the start of fluid up, so they sent me for an X-ray. The doctor examined the results and compared the X-ray with a previous chest X-ray. It turns out my right lung is slightly smaller than my right as it is being pushed up by my other internal organs. Apparently not that unusual! Certainly nothing to worry about which is good. I'm glad I checked on these things though as I think it is always best to make sure, rather than worry about them.

My next appointment is on Tuesday, so a few day off, which is another sign everything is going OK. I also have to have my pentamidine which I have every two weeks now, rather than monthly.

Friday day 22 post transplant:

I didn't do anything yesterday, I felt rather tired most of the day. My brother and sister in law went home early afternoon. Talking about that, my brother Nigel rang me in the evening, and asked when did my other brother Nick get married, as I said my brother and sister in law! I meant my brother in law and my sister in law, not my brother! They are still my brother and sister in law, and I'm pretty sure that is how you write it when reffering to them. It is charitos sister and her husband. Pilar (her sister) along with her husband Chris hence, my brother and sister in law. It doesn't seem right to refer to them as brother in law and sister in law; maybe I should to stop an confusion!

Today, day 23 post transplant:

It's only early morning, but I'm feeling relatively OK today. Not that I have done much as usual apart from, get up out of bed, have a shower, take tablets, eat breakfast and write on blog. I might wright more later, if anything exciting happens, who knows I might win the lottery!

Thursday, 27 October 2011

Day 20 - Family

Today has been a day off from the hospital visits. I spent the morning doing nothing really; watched some TV and browsed on the internet.

After lunch I felt like I needed a sleep, so went to bed at about 2:30pm. I didn't wake up until gone 5pm.

My brother and sister in law arrived at about 7pm and so spent the evening talking to them. They are stopping a few days, but won't see much of them as I am off to Liverpool tomorrow.

I have a few things to ask/tell/discuss with the doctor. My eyes have been stinging and are a bit blood shot. The doctor at Chester examined me and told me that my right lung wasn't working as well as the left; although she couldn't hear any bubling or sign of infection, it needed to be kept an eye on. Now just before going to bed after struggling up the stairs, I got undressed for bed and noticed that my feet and legs are swollen. At least I will have something to talk about with the doctor!

Tuesday, 25 October 2011

Day 19 – Blood

There isn’t that much to say today, I’ve spent all day at Chester Hospital receiving two units of blood.

I feel much better after receiving it, more energy than I had before.

One thing that did become clear is that Liverpool and Chester need to calibrate how they measure the bloods. I had a different HB count in the afternoon than I did in the morning yesterday. The other blood counts were different as well. Chester reports them higher than Liverpool.

I was going to ask them about this when they last took an Igs count, which measure my paraprotein it was different than the one I got at Liverpool. My paraprotein levels are lower at Liverpool. As I said to Dr Salim, I’m better off going to Liverpool as my levers are lower and therefore have a better chance of the STC working! Really this shouldn’t happen and I’m sure that both Hospitals will say that they have the correct results, but the both can’t be right. I’m not sure how often the equipment is calibrated, but for someone like me, the different between a paraprotein level of 15 and 22 is a big jump. I can’t remember the exact figure, but it was something like that!

It was good to chat the staff at Chester and to meet the new nurse Caroline. I always have  laugh with the staff and I’m sure some of them are as mad as me. They have a good sense of humour.

I don’t know when I will be back there again, it will depend on how often I need to have blood or platelets etc.

Monday, 24 October 2011

Day 17 & 18 More Hospitals and wonderful friends.

Yesterday the 23 October was my Day 17 post  transplant. I was feeling much better after the fiasco of being sick and dehydrated. The IV fluids made me much better and I had been eating and drinking OK, but still need to drink more. I found that I can drink fruits of the forest cordial as almost everything else makes me feel a bit sick.

My sister Carol and her husband Mike came all the way up to Chester from Southampton and stopped off at our house for a few hours before going on for short breaks in various hotels.

It was lovely to see them and to catch up as we don’t get that much of chance to see each other, being so far apart. They didn’t stay too long, as they realised I was getting very tired and needed my rest, which I was grateful for.

Today (Monday) I had an appointment at Liverpool at 10am again and the Taxi/Ambulance turned up perfectly on time. The driver was a lovely guy and full of stories from his life and experiences. To be honest I could have spent ages just chatting to him. The only thing I was worried about the the cleanliness of his car, although he said he cleaned it regularly, I’m not sure how regular it was! Once a year is regular isn’t it!!! We had the same driver take us home and Charito fell asleep as usual, whichever vehicle she is in, she falls asleep, I can’t blame her, she does so much I’m not surprised she takes every opportunity to catch up on her sleep. Not quite sure how she managed to sleep through the drivers anecdotes, of which there were many, but she did.

Whilst at the Liverpool hospital, they took my blood and said I could go home, which I was surprised about, but they said they would call me if I need anything done and could come back in. I don’t think they realised how far away we lived and it wasn’t just a 10 drive in. As my bloods were relatively low on the last count, 8.1, I said I would rather wait and see if I needed any blood. Thinking that they would get the result and if I needed any blood, give it me while I was there, yet again though, I was wrong. My blood results showed that my HB level had dropped to 7.1 and I would need a transfusion. However they said I could come back tomorrow as they would need to do a cross-match and arrange the bloods. So even though I waited, they weren’t going to do the transfusion on the day anyway? Wish they told me that before I waited though.

Anyway with me needing blood and having to come back in, I asked if I could have that done in Chester as it is nearer to me, only 10 or 15 minutes away from were I live. So they said that shouldn’t be a problem and they would give them a call to see if they could arrange it. She went away and came back about 10 minutes later to let me know that would be OK and it’s been arranged for first thing on Tuesday morning.

I asked about my next appointment at Liverpool and that’s been arranged for Thursday at 11am. So I have tomorrow off I thought.

We got home safely and Charito woke up just before we got home, not quite sure how she does that, but she always manages to wake up just before she is supposed to, even when on a bus or train!

Not long after having something to eat, I got a phone call from Chester Hospital, it was one of the my regular nurses and it was good to hear from her. She was confirming the Tuesdays appointment and also wanted to know if I could go in today, so that they could take some bloods and do a complete blood test and match ready for my bloods. They have to treat me as a new patient now that I have a complete new blood system ( a working one hopefully). If I didn’t have it done today I would have been at the hospital for a very long time tomorrow.

So all I had to think about now, was how do I get there? I couldn’t arrange an ambulance at such short notice, I definitely couldn’t drive myself and Amy my daughter is on holiday this week. So I turned to my adopted family and close friends who live next door, Chris and Jodie. I wasn’t sure if they were in or not as their car wasn’t in the drive, but Chris was in but Jodie was out. I asked Chris if he could give me a lift to the hospital and without hesitation he said yes. They have always told me to give them a call if I need to, but I don’t like relying on people even though I know they don’t mind. Not only did Chris give me a lift to the hospital, he insisted that I give him a call when I finished and he would come and pick me up. Sometimes friends are better than family, but I wont go into that (I will write about that in my book, My Life with Myeloma the true story).

I can’t wait to win the lottery so I can thank Chris and Jodie for everything have done and do for me. They both mean the world to me and Charito and I hope they know how much we love them both.

Tomorrow I’m off to Chester, probably all day for two units of blood and then Thursday back at Liverpool. I must remember to book the Ambulance/Taxi for Thursday.

Saturday, 22 October 2011

Day 15 and 16 - Hospital and home

Sorry for not posting anything yesterday, but I wasn't very well. After being sick most of Thursday and throughout night, I couldn't drink anything and I was very dehydrated. My first appointment at Liverpool was at 10am and the taxi ambulance picked me up at 9am to take me to the hospital. I was very exhausted and use a wheel chair once I got to the hospital to get up to the day ward. Once I was there and they asked how I was and I told them about the sickness andthatI would need some IV fluids if they could give me some. Normally You have to wait for the blood results to come back before they give you anything, but as It was clear I was dehydrated and Ben sick, they put some fluids on a drip for me over four hours.

They took the usual bloods and I had to wait about an hour for the results to come back, as expected they showed my eurea levels were low and I needed to drink more! Apart from that my levels were good

HB 8.1
PL 90
WBC 12.1
Neuts 9.3

As you can see my neutsaresky high. After the doctors had reviewed my bloods, I was told not to take the ciclosporin until Monday as my levels were too high again. To me that was good news as they are horrible to take!

After feeling a bit better after the fluids, I arrived home and received a phone call from the doctor telling me that they had reviewed my bloods from an earlier test and my ciclosporin levels were OK and should take them as normal. So my elation about not taking them didn't last long.

The night went relatively OK without sickness, it helped after they gave me the fluids they also gave me some IV anti sickness. The nurse recommended I take the anti sickness tablet on its own first about half an hour before taking the others and that seemed to help.

Today has been a good day and I have managed to eat and drink and feel much stronger. Hopefully I will get a good nights rest and feel even better tomorrow.

My Sister and brother in law are coming to visit tomorrow so I have something to look forward to as I haven't seen them for ages.

Thursday, 20 October 2011

Day 14 - First night at home

I don't know if it was because I was more relaxed at home or some other reason, but I wasn't well last night. After coming home and settling down after charitio made me something to eat, I caught up on a bit of TV.

After I sorted all of my tablets out for the night and went to bed. The one thing I didn't do was take the anti sickness ones. The reason being is that I wasn't on the anti sickness pump yesterday at at all and I didn't feel sick, so thought I could get away with out them, I was wrong!

I was sick two or three times in the night and haven't felt well most of today. Spent the morning on the sofa and went to get a drink and immediately was sick. I've taken the anti sickness today but obviously it isn't as good as a pump as I was sick. My temperature has been fine, so just need to get over this sickness and I will be OK.

I just had to have a break from writing this, to be sick again! Thank goodness for plastic bowls.

Apart from the sickness I'm doing ok. The pain in my back and ribs was quite bad this morning after the rough night though. I did discover though that if charitio rubbed my back it made it feel much better which enabled me to go down stairs to take my tablets.

I haven't eaten anything so far today and not sure I will while I keep being sick, but will try and drink some more. The problem is at the moment it just keeps coming back up, I will just take it easy and slow.

Wednesday, 19 October 2011

Day 13 - Tablets to take home

I just had to take a picture of these. My tablets to take home with me.

Mmmm yummy!

Day 13 post transplant – Home

Well I can’t believe how well I have done got through this transplant without any issues (yet). I’m going home today at about 3 or 4pm, I have to wait for  Amy my daughter and Charito to finish work before they can pick me up.

This morning I woke up with the pain in my back again, which is hardly surprising the way my bloods are working overtime at the moment, so that was expected.

I have my Cyclosporin reduced again to 275 as my levels were too high, another good sign thing are working properly. I had my shower before having my bloods taken today, I will wait to see what they bring back today. I’ve also had my Pentamidine which I have to go into a room on my own for as it is yucky stuff for anyone else to breathe in. I knew I was having all of this done this morning, so I wanted to get up early and get showered so I had everything sorted. I even had another good breakfast ready for me once I had finished my Pentamidine.

The staff here have all been wonderful as usual and I can’t thank them enough, I know I haven’t been one of these patients that keeps pestering them (I think!), but they have always made sure that they apologise if they couldn’t get to me straight away after buzzing etc. I know they have had some very ill people in and not everyone is going through the transplant process as well as I have, some people get all of the symptoms, such as sickness, mouth sore etc and I didn’t mind waiting while they sorted out the more sick patients.

It was funny this morning when I buzzed at 7:30ish for some pain killers. I was one if not the first to start the buzzing off this morning (once one starts everybody buzzes as usual). I said about being the first and the nurse asked if I had a good nights sleep, which in all fairness I did, apart from waking up a few times in pain with my back. We didn’t have the buzzing all night from the usual culprits, I know that one of the nurses was going to mention it to this particular patient about showing some respect for others and trying not to buzz throughout the night and keeping everyone awake. There had been a few people complain, including myself about not being able to sleep because of the constant buzzing going off. I have no idea who it was or which room they are in as confidentiality is very important here and they really do stick to it. So even if I knew every patient from the day ward, I would know if they were on this ward with me. I have told them though that I don’t mind people knowing or contacting me and to feel free if they wanted to let them know about my blog. If it provides some help in any way to someone else, then it has been worth writing all of this that I do. Back to the story, this morning when the nurse brought in my pain killers I asked for at 7:30 I mentioned again about my Pentamidine and I was going to have it yesterday, but then arranged it for this morning and wanted to make sure that the morning staff knew I was going to have it, so it wasn’t delayed and possible stop me going home this afternoon. I just had in mind exactly what I wanted to do today.   Alarm went off at 7, take pain killers, wait for them to kick in, have shower, take breakfast then Pentamidine, all sorted. I said this too the nurse and she said and manage the nurses schedule, or something similar. …. I really wasn’t trying to organise them, but I know how easy things get lost in the mix, so if did seem as though I was trying to organise them as well, I am sorry. I must be feeling OK to jump back into my managers head and go through check lists in my brain etc. Am I the only one that does this and write to do etc or am I really that strange… rhetorical question and doesn’t really need an answer before I get lots of ‘Yes’s’ in my comment box ;-)

One other thing I must comment on as well that I have mentioned and even complained about in the past. The cupboard room that they normally put people, you know the one I’ve mentioned that had the old TV’s  and Christmas decoration as well as a couple of bed for chairs for patients. Well I’m glad to say that has had some improvement and is looking more like a waiting/medical room now. It has some new chairs and all of the old stuff that was stored their has been removed. I was talking to the ward sister and have been told there are more changes going on with more storage space available to them.So I’m glad to see things moving along and getting better for the patients. It does make a difference knowing that we are in a nice clean proper place and not just stuck in a room that feels like a cupboard and pushed out of the way until required. It was almost a pleasure to have my Pentamidine in their today, in one of the relaxing chairs listening to music as I breathed Pentamidine in.

So now all I’m waiting for is my dressing to be changed on my line, my blood results to come back OK which I’m pretty sure they will and then to get picked up.

I will sort out all of my things soon as well, although that wont take long and I really need to the suitcase to do it properly so I might just wait.I will see how I feel after.

My next blog message should be from home where I will have a proper internet connection – Hooray – I’ve had nothing but problems with it here, having to disconnect and reconnect through tethering and wireless etc. How did we manager without the internet before!

See you at home x 

Tuesday, 18 October 2011

Day 12 Blood Count

They took my bloods today, just in case I needed to have a cross match tomorrow; however the blood results have come back and they are even better than I had thought they would be.

HB: 10.2 up 1.0
PL: 39 up 15
WH: 12.0 up 4.2
Neuts: 7.6 up 3.2

I really can’t believe my Neutrophils they are better than they have been for a very long time. When I came in, they were at 0.7, now 7,6 WOW The normal (Normal as in doesn’t have cancer) is 7.5, I am better than most people at the moment! I think that deserves a double WOW WOW. I’m under no delusion though that they will no doubt drop again. The are in the position they are due to the GCSF and the reason why my back has been hurting. I’m sure they will drop right down again pretty soon; however for now I’m happy they are up to a level where I can go home without needing any bloods etc.


Day 12 Post Transplant

Well just had all of my connections taken off, no longer tethered to my anti-sickness and the octopus has been taken off, no not a real octopus, the little device that splits the line so they can add more things to  it like saline and and anti-sickness and of course if they need to add more, they just put another splitter on and hence it ends up looking like an Octopus. The red line they keep on it’s own for taking bloods. So now I just have the basic line set up with the two connections if I need them usually one for blood and one for other things lings like saline, but they can use it for other things as well as blood and platelets if need be.

I didn’t get much sleep last night, but I know others didn’t as well as the buzzer kept going off throughout the night, particularly one patient I think. I’m the type of person that if I get woken up I find it really difficult to go back to sleep again, so I was reading blogs and the news off and on throughout the night to try and wear myself out to the point of falling asleep, needless to say it didn’t really work, so I will probably be knackered throughout the day to day. I just hope it doesn’t happen again, not for my sake, but I am allowed out of my room now and I’m sure I can’t find a big stick from somewhere …. (Message for the Nurses here reading this at the Royal, I wouldn’t really do that …. it would just be a slight slap honest ;-) )

Talking about the nurses reading my blog, I found out today that most of them are reading it now, so Hi everyone. It was mentioned that they are going to point other patients to it as they think it would be useful, particularly the list of things to bring in with you that I wrote about on my first transplant. A patients guide to an Autologous Stem Cell Transplant to be honest I wouldn’t put anything different in it for this type of transplant. I would like to hear from anyone else who has gone through them and would like to add to the list.

I wondered why my medication was coming a bit more regular and I didn’t need to to really mention anything to the nurses, it’s because they have read the blog! Oh the power of the written word.

I was also talking to a couple of nurses about my photography, the conversation started off by asking what I did before I left work, as most of them know here that I now do photography, but were surprised to hear that I was an Ecommerce manager and been working in IT for over 26 years. It helped them to understand why I knew so much about technology etc. After explaining that the photography was only really taken up once I was diagnosed with cancer. I knew at some point I would have to give up work and wanted to do something that I could do during my treatment. I’ve always been one to study and do research and though the photography would be an ideal thing that I could work around during my treatment. The plan was that after my first transplant I would start the business properly to make a few pounds to keep me going until I pop my clogs. As it turned out I needed to have this transplant which involved intensive treatment and very regular visits to the hospital almost on a daily basis, so couldn’t start the business as I wanted too. Everything is set up though for me to do so as soon as I can after this transplant, so if you fancy some new photos and help support me financially once I can get then let me know. If you register your interest now, I will give you a discount. My web site for the photography is easy to find, although as usual it hasn’t got the latest pics on there, yet, but that is something I will be doing while recuperating at home is: see I told you it was easy. I will be doing mainly portraiture or commission work, such as flowers of your chosen colour or type that will be suitable for your home decor. Unique photos just for you. I’m putting together a package as most photographers do of one large A4  and four 6.x4 for a standard price or you can upgrade to a quality Gallery Framed Print, which look really lovely in any environment.

Anyway, sales speech over with if you just want to look at my general pics I have a flickr account you can browse view which contain all sorts of pics, some I have printed off as gifts for friends and nurses, so don’t be afraid to leave comments, you never know I might be feeling generous and give you one as a gift :-) 

I had a lovely cooked English breakfast this morning and will probably have the same tomorrow … yummy, I’ve put on weight since I’ve been here, when I really thought I was going to lose my appetite like last time and lose it. I was told though that I still might not feel like eating at home, which is what happened last time and not worry about it. I was also advised to each chocolate and high in calorie foods, so I still have a good excuse at the moment.

Back to medical things, I’ve made sure that I have arranged to have all of my bloods and platelets checked ready for tomorrow, blood matches done today, so I don’t have to wait for them to come back tomorrow before ordering them, which may end up with me having to stay another night, which I want to avoid or coming back in again on the Thursday which would also be inconvenient. I’m having my Pentamidine today as well to get that out of the way, moved to separate room because of the usual yuckyness (is that a word!)

So everything is ready for me to go home, although after me surprising Charito at the entrance and telling her that I would be home on Wednesday, she did her usual panicking of I haven’t cleaned the house! I know that having the environment clean is important, but Charito insisted on getting up at 5:30am today to clean the house prior to going to work! I just don’t know how she does it .. I love her to bits for everything she does for me and putting up with my horrible mood swings, that I continue to blame on any little bit of steroid that I have in my body, but as I know and she keeps reminding me, I was like that before I even got cancer!! – She doesn’t read the blog anymore as she says it makes her sad at time, and I know others that have blogs where there partner doesn’t read their blogs either, so it isn’t unusual, so if you read this this and know Charito in person, please let her know that I am telling others how much I love her and appreciate her help. Sometimes I think she isn’t aware of home much I care for her and know how hard she works, even if I do get frustrated at her working three jobs when I know she used to manage one of the top restaurants in Peru and should stop using her language as an excuse for not getting a better job, she speaks better English that half the people I know, including my own grown up children!

Anyway what was going to be a short blog message has turned out to be another long one again, I don’t have any Dexamethasone in me now as an excuse.

Monday, 17 October 2011

Today’s blood counts

These are my latest blood counts:

HB: 9.2
PL: 24
WBC: 7.8
Neuts: 4.4

As can be seen my HB and PL are dropping, but that is to be expected, I may need blood and platelets soon, but the good news is that my White Blood Cells up and and amazingly my Neutrophiles are up to 4.4. which is higher than the have been for ages and no wonder my back has been hurting today, my bone marrow must be working overtime :-)


Day 11 post transplant – Some really good news

I’ve had a visit from my Doctor and his team this morning and I’m doing really well, when he asked me how I was feeling, I jokingly said I was going for a jog and he thought I might be telling the truth as I am doing so well, I wasn’t off course. This morning I woke up with a bit of pain in my back, but that is probably caused by the GCSF.

The good news is that I can now go out of my room for a wander around the hospital and stretch my legs and even go down to the canteen for a drink if I want. I’m going to take up one of the nurses suggestions here and surprise Charito later on when she arrives at the hospital, she wont be expecting me to meet her at the entrance as she hasn’t been told yet.

The other REALLY GOOD NEWS – If everything goes well, which there is no reason why not, I will be going home on Wednesday :) :)

I couldn’t have hoped for it to go any better. I will have to return to the hospital for monitoring every other day for the first couple of weeks, then drop off to twice a week. If I need just bloods or platelets they are going to try and arrange for me to attend Chester, rather than come all the way over to Liverpool. The sooner I get back to Chester the better for me as it is much closer. At the initial stages though I’m happier to come here as they aren’t used to monitor patients after the this type of transplant and they know my case better here with my Cyclosporine levels etc.

I’m having my anti-sickness pump removed tomorrow and today having it without any Dex in it, just to make sure I’m ok without and Dex and not sick, but I don’t think I will be ill as I haven’t been for a number of days yet.

I’m looking forward to going home Wednesday a really big YIPPEEE!

Thanks to everyone who has prayed and sent their love and Reiki support, I really appreciate all your thoughts x x x

Saturday, 15 October 2011

Occupy Wall Street Protesters – Arrested for Closing Citybank accounts

I’ve just managed to catch up with what has been going on with the #OccupyWallStreet demonstrations. I’ve only watched one video and the first one I watched was just after about thirty people have been arrested for closing their accounts. A group of people cued up to close their accounts and were asked to leave the Citybank after walking out of the door they were approached by under-cover police and against their will arrested, even after they explained they were customers of the bank and wanting to close their account.

Occupy the world has been going on throughout the day with demonstrations all over the world including the UK at the stock exchange. You may have seen a brief news update on BBC, but as usual they are playing it down and even only said about a few demonstrators at Wall Street when in fact their are thousands! At least they are mentioning it, even if it isn’t full the truth.

If you get a chance, watch the videos at and see for yourself, then ask the BBC and other news agencies why they aren’t reporting it correctly.

View the world map of the demonstrations at: 

Also if you get the opportunity to watch one of the videos how they communicate with each other as mics are not permitted, they should Mic Check and then everyone repeats what has been said, so the rest of the thousands can hear what they have to say. A great idea.

Global revolution are setting up a temp news room where they are bringing live feed from all over the world, include the UK to let people know what is really going on. All this is non violent and over the last month since it was started and I’ve been watching the live feeds, none of the demonstrators have been violent in any way, they have made it more of a festival with music and singing. On the other other hand the police have been violent, spraying innocent people with chemical weapons (pepper spray) and dragging them across the road with hands bound behind their backs as their wrists bleed, behind led into the roads by the police and then cornered off and arrested for being their after being led their by the police. Police chiefs spraying the innocent with pepper spray as protesters walk innocently in front of them on the pavement.

If you weren’t aware that this was in the US and it was a news report of innocent people being attached by the local authorities, you would think it was Libya or Egypt it would be all over our news media. Why isn’t the US and UK letting people know what is really going on, how long will they continue with this misinformation – is the UK and US just as bad as Gaddafi, we have to ask ourselves the question, Why?

Day 9 post transplant

Well I’m doing really well, the doctor came around earlier and said that he isn’t going to change anything at the moment, my bloods are rising which is what we want after the dip.


The platelets in Orange they are not too concerned about dropping or my Bloods in red on graph. They can always give me a transfusion of blood or platelets if they drop too low. I will be having appointments every other day at Liverpool once I go home. Also if I need to have any more GCSF injections, I will be taking some home with me and they will give me a call at home to tell me to inject myself the night before.

I’m trying to drink a lot more which seems to be going OK using a larger glass helps. If I am only taking a few tablets, I am making sure that I drink a full glass of water with it as well. They wont let me out of the hospital until I don’t need to be on any drips of any kind. The only one I have been on regularly is the saline to get some fluids into me, so I’m being a lot stricter with myself to make sure that my input and output of fluids is going well.

So like my little graphs above, I’m full of mainly smiley faces :-)

Friday, 14 October 2011

Day 8 Morning

It’s day 8 of my new stem cells from Nigel and I’m not sure if it is the dex the have added to my anti sickness pump of Ondansetron or something to do with the Granulocyt  colony-stimulating factor (GCSF for short). More likely to be the dex though that is making me a bit more lively than normal. Yesterday I felt really good and even had a vegetable curry for dinner which everyone was surprised about and very nice it was. I was still awake at 1am watching TV and on the internet and then went to bed about 1:30 and up at 5:30. So far after being to the loo and peeing more than double my usual amount I’ve cleaned all my room where I think could be at risk with Sani-Cloths. That includes my computer keyboard that I touch all of the outside of the computer any cables that go into it etc. As well as my glasses Tv controller, ipod and headphones, books, tablet, door handles, fridge top and handles, bed riser control and anywhere else I’ve seen someone else or myself touch that could cross contaminate me. Now is the time at the highest risk, so it is better to be safe and keep everywhere clean.

Charito and I are following the same rules as we did last time where we have no physical contact when she comes into visit, so no hugging or hand holding. Again it might seem a little overboard, but it worked last time and seems to be working this time as I haven’t as yet caught anything nasty. I know of other people in other rooms that have lots of visitor and even children visiting, I can only imagine that they haven’t read up enough on the risks and I have seen these type of people have a couple of cardiac arrest when going through the same procedure as me, so if it is the cleanliness that has helped then Charito and I don’t mind not having a hug for a month if it keeps me out of having to go through all of those nasty side effects.

If it is the dex that is keeping awake etc, which I think it is, then I like it, I would rather be like this than really tired all of the time. I will probably collapse and fall asleep later on for a couple of hours to recover during the day; that’s what usually happens when at home on the dex.

I will get my daily shower once I can get hold of some clean towels, I was going to have one before writing this, but thought I would give the nurses a longer rest rather than buzzing at about 6:45. It’s now 7:20am so will buzz someone to get them.

I will try and do a panorama picture of my room late for you and blog it for you so you can all see how big or small my room is.

Thursday, 13 October 2011

Quick blog message – Pain and do they really understand

I’ve just had a conversation with one of the nurses and I was just explaining to her that me: I hadn’t had my 2pm pain killers which I was due, (this was at 2:35), nurse:  I was told that they were due at the hand over that they were due at 2pm. me: (told but did she know I hadn’t had them at 2pm) but I haven’t had them yet nurse: I’m going to get them for you now.

I got them at 3pm an hour after I was due. Sometimes I don’t think they realise how much us patients rely upon the pain killers. For me and I’m sure other patients, they start to wear-off in about the last hour, so the pain gradually increases. For me the main part is in my feet with the Neuropathy, if left it just gets worse by the hour. The shingle pain is still there and unfortunately that’s the same, the longer you leave it without the pain killers the worse it feels. So although it might only seem 40 minutes or an hour later than they time it was due, the consequence for the patient can be very painful and I don’t think at times the really understand the situation that we are in and how much we really really upon them.

I did feel like screaming at her and shouting. DON’T YOU UNDERSTAND … I NEED THEM NOW, NOT IN AN HOURS TIME! but the good work that they do and I know they are very busy on the ward stop me doing that. Besides it just isn’t in my nature …… errr ok sometimes it is, but it just wouldn’t be appropriate here.

Thank goodness for my blog where I can have a rant and vent my anger!