Oh **** the flowers in Swansea

I have no idea why some of those words came me to at 2am this morning while sleeping and other I definitely do. However these are the words that came into my mind as I was suddenly woken up!!! I realised I was passing wind three times uncontrollably in bed. Not a major problem for someone at home, but a huge problem form me at the moment who can’t go for a wee without having a secret attack from the other end!

I jumped up (as quickly as I could, realising what I might have just done), turned the light on above my bed, the call buzzer went off, I’m not sure if that was me or not so tried cancelling it, I didn’t want someone walking into my room with me on all fours pointing my bum at the door stretching over to start flashing lights and say look at what I have done! So it quickly went off (if it was more or not, took no chances). Got out of bed trying to discover as I walk if my bum was wet or was it the cream they gave me to stop it being sore because of the sandpaper tissue. Moved delicately to my cupboard where I store my extra underpants (worn especially for hospital by the way – just in case of emergencies like this). Make my way to the toilet and dropped and checked as you do …….

…. I was like a little boy again, I wanted to shout out ‘Mummy’' I’ve been a good boy and I haven’t pood in pants! (not sure if I said that out aloud or not)  Did the usual checks again and when back to bed a happy boy.

So where did the Swansea bit come into it I have no idea, but I new one things….

4am …. The flowers have arrived…

Yes sure enough I woke up again with the same stupid thought of Swansea in my head and this time my stomach was rumbling like mad. Taking no chances this time, up and to the look. This was not a practice run.

Made it ok,  it’s a good job loo’s are reinforced, the flowers were arriving complete with the fertilizer they were stored in.

I wonder if the vegetable soup came from Swansea and contained cauliflower?

Chemo – Transplant – New Day 2

First off I need to say happy birthday to Amy – Sorry I can’t come and see you for obvious reasons …. your away in a caravan …. oh and I’m a bit busy at the moment as well. Your card should be at home when you get back and sorry for waking you up this morning when you was trying to have a lie in.

Anyway … back to the important issue ME

Last night I was sick before going to get some sleep, not that I could because of the steroids you have pumped into you. So I was awake most of the night and for some reason all I could think about was work and planning what to do when I get back. Every time I nodded off my little pump would kick in that spurts out the ant sickness + additional stuff. For some strange reason in my tiny head I thought this was my alarm to get up for work! So every time it made a noise I swung my legs over the bed thinking I was getting up for work. …. I lost count of hour many times I did this.

I had a coffee at about 3am which was good for my fluid counts as I need to take in more than I am doing at the moment.

I managed to keep some cornflakes down this morning which was a good start, but when it came to lunch I though I would try the spaghetti hoops with some toast fingers. I was really hungry and was looking forward to eating them, they seemed to be going down OK at first, but then ….. up chuck they came. Into one of my regular cardboard up chuck bowls…. again in the usual process of walking to the loo so I could sit down as well just in case (as usual good job I did). When the nurse came I told her couldn’t eat it, but it did look like it came back up the way it went in if she wanted to recycle it …. (I don’t think she appreciated my sick sense of humour - no pun inteded )

For dinner I had ordered sausage and mash, which I ate a little bit of and managed to keep down; followed by two tubs of ice cream …. mmmm yummy!

I’ve drank plenty of water since and got my quota back up and hopefully get some sleep letter on as they gave me the steroids early this morning to see if that helps.

I haven’t seen many nursed today checking up on me as they have been very busy with the other patients and apparently I’m doing the best so far, although I have a funny feeling that might change next week when my blood counts fall.

On another point from Paul, I too wondered where I was supposed to stick that huge spike they gave me in my hand when they first wanted to take my temperature. I had to ask them where I was supposed to stick it, as I was used to have my temp taken in my ear. If I put this thing in my ear it would poke out of the other side without anything stopping it in between. Fortunately it went under my tongue so that wasn’t too bad, although I have had it under my arm as well – not during the temp measure though … that would be yucky!

Chemo and Transplant day zero – Happy Birthday

I haven’t been too good the last few days to blog so a bit of catching up to do.

I had the high dose chemo as mentioned in last post on Wednesday and I have been sick throughout the Thusday and diarrhea (look away now if you are squeamish).

They gave me all the different anti-sickness drugs they could to try and control it, none of them seemed to work brilliantly but I could manage. Thanks for the advice about lots of underwear and PJ’s Paula – I was caught out and surprised when I was being sick and… well fill in the details yourself!

I had my Transplant yesterday Thursday at 2:15 approx. Seven bags of stem cells which took about 2 hours. I vomited during the process on bag 5 (not literally, that would be a bit messy, it was in a bowl). The count this day as day zero or as the nurse said ‘my new birthday’. Does that mean that I get two cards and two lots of presents a year now?

Last night was a night of being sick again, I worked out a system to get to the loo, sit down and puke in a bowl, just in case I had any surprises while puking. Helen the nurse that was looking after me over night was very good and we tried different anti sickness ideas. The last one was injected into my Hickman and seem to do the trick after being sick at about 6am I managed to get a few hours sleep and felt much better by 9am this morning.

I managed my shower and got cleaned up and performed the strict mouth wash regime as normal, which consists of brushing teeth, mouth wash rinse, droplet rinse around mouth.

There going to put an addition into my pump to see if it help reduce the sickness. As I’m writing this my stomach is churning again. I’ve eat half a slice of toast this morning and had a cup of tea. I haven’t eaten for the last couple of days as not felt like it. Just need to see how it goes.

The next stage is my blood count to drop to zero, which is expected, that’s when I have no immune system and will no doubt be ill and get a temperature. I will probably get Rigors again, which I have previously had when I first started my treatment and ended up in hospital for a week. It’s where you body shakes uncontrollably because of the high temp. Although I felt really cold the way to reduce it is to cool you down. Not looking forward to that bit again as it wasn’t nice, at least I know what to expect this time though.

I will write more when I can…..

High dose chemo

Today was my high dose chemo (Melphalan). I had to have lots of fluids via a drip to make sure my kidneys are working which consisted of a litre of fluids every hour at first and then measuring how much urine I passed, which I need to pee in a jug to measure every time. …. talking of which, back in a minute ……

…. back now another 300ml registered on my chart. The chemo is given in two large syringes attached to my Hickman line, which they inject in at the same time as a drip is running with some other stuff to protect the liver. It took about 5-10mins to inject in. Prior to administering they had to go through all the checks to make sure that they have the right person etc, which is good that they check so thoroughly they wouldn’t want to give that to the wrong person! She also told me that during the process of it going it, I may feel hot flushes, my face may go red and it will feel like you are eating a very hot curry! Fortunately I didn’t feel any of those symptom as I don’t like hot curries. Everything went ok and I was passing enough water, so my kidneys were flushing it through ok. I still have to be on fluid drips over night as well as the anti sickness that I have been having through the the portable mini drip.

Tomorrow will be my stem cells going back in and I will let you know how that went.

On another point I must say how wonderful the staff are here, nothing is too much trouble. They even offered to change my room for me today to a bigger one if I wanted and went on to explain that the day that I cam in they were really busy and had 8 people on the ward, which may not sound a lot, but when you consider this is a specialist unit it is quite a lot. There are now 5 people here, of which I am the only male, not that it makes that much difference, I don’t get a chance to leave the room, let alone flirt with anyone (as if I would!). One of the women is Marilyn who had her stem cells extracted at the same time as me.

I was also talking to the staff about Paula (Feresaknit's Blog), they were saying how lovely she was and how infectious her laugh is. this is where I wondered if we were talking about the same person …… only joking Paula don’t hit me the next time we meet. Paula makes some lovely things out of wool and if you get a chance take a look at her myeloma buddies which you can buy online. Paula made some buddies for one of the nurses here and she was saying how lovely they were. I think they were surprised a little how people with Myeloma keep in touch and read each others blogs (our own mini community)

Well that will do for this blog post, more later or tomorrow. If you have any questions, just leave a comment. Oh if you are going to do an anonymous message, I’m ok with that, but I think some of you that have left messages expect me to know who it is. Although I’m good, I still haven’t mastered my psychic ability to know who you are without you telling me.

:D

Hickman line fitted

I am now have a Hickman line fitted. I went down to have it fitted at about 10am. This is the first time that I have had one of these and wasn’t quite sure of the procedure. It is a small mini operation with local anaesthetic. You lie on your back with your head resting in a little well, it feels like its resting on a small dish. They clean your neck and chest area with Alcohol (which had a very strong smell). They then cover your face with a surgical sheet so you can see what is going on. Then they number the neck area with local anaesthetic ( I had to have two shots as the first didn’t numb it completely). They cut into the jugular vein (not juggler as Paula kindly pointed out – unless of course you have multiple veins that you can throw up in the air all at the same time, only to land neatly back in your neck!)  and feed a wire down through the chest close to the heart. They next part was uncomfortable as they insert the central line in place they have to force the tube into the neck. They use quite a bit of pressure to do this!

It takes about an hour from start to finish and I was able to sit up and get back into the wheel chair ready to be taken back upstairs to the ward. It felt OK at first, but as the day has gone on the anaesthetic has worn off. It now aches as I move my arm and neck and I’m sure I’m going to be black and blue tomorrow.

I have a drip fitted to the line at the moment, which they connected at 2pm it is a little portable unit with a syringe attached that slowly releases a fixed amount. I have the anti sickness in it at the moment at this one will take 24 hours to complete and will be finished by about 2pm tomorrow. This is in preparation of the Chemo (Melphalan) tomorrow to help reduce the sickness. It’s unlikely it will stop me being sick all together as it is such a high dose.

Prep for Hickman Line

I didn’t get much sleep last night – with it being a strange room and noises bleeping and air con etc. I must remember to ask for an extra pillow tonight as well as the two I have are about as thick as one of my pillows at home when combined.

I’m having my Hickman line put into this morning at about 10am so I’m not able to eat anything after for a couple of hours prior. They asked me yesterday if I wanted to be woken up early to have a light breakfast, which I said yes too. It would be about 6:30am or 7am, which is fine as I am usually up by that time anyway. Sure enough 6:30 a nurse called Rachel came in and explained what was happening today and asked what I wanted for breakfast (I chose cornflakes, I know I like to push the boat out a bit when staying away!).

She gave me some soap that I’m to wash and shower with while I’m here and to make sure that I wash my chest with it prio to the Hickman line going in. I wasn’t sure what the process was for having one of these fitted so I asked Rachel to explain. First washing with the soap provided then putting one of the fancy hospital gowns on. Fortunately for them I’m allowed to wear underwear otherwise everyone would see my hairy bum (I wonder if I will lose my hair off my bum!), anyway …. I will be taken downstairs by a porter to somewhere where they do these type of mini procedures. Local anaesthetic and they will then insert the line near one of my collar bones which will lead just under my skin to my chest. It might be a bit uncomfortable while they push and shove the line in but bearable (good job). It’s normal apparently for it to bleed a little at first and they will just put another dressing over it and then change it tomorrow once it has settled down.

I should be changing rooms later on today at some point as well (fingers crossed) so I can unpack my things and settle in properly.

In hospital

Well I’m finally in Hospital. Chris brought me and Charito to the hospital and we arrived at about 1:50pm. I told to be here between 2pm and 3pm so we were 10mins early, not worry, I thought!!!

We were asked to wait in the cupboard, sorry the small waiting room that I have described earlier, we had a new addition to the room this time though, along with the Christmas decoration a wheel chair old TV’s and repaired machinery was an exercise bike. I’m not quite sure what we were supposed to do with that, unless they were trying to tell us something. Oh and it does have a kitchen sink as well (honestly).

After a while… about about 2:20 a nurse came to see us and said she had a proposition for me …. eh up I thought my lucks in! not the case though. She told me that the person in the room I’m going in wasn’t leaving till about 6pm and would we mind going home and coming back in tomorrow. I’d rather not I said. I would have to re-arrange for someone to take me home and then for another lift back to Liverpool again from Chester. I suggested we stay and wait, we would have to wait for the room to be prepared which would take till about 8pm.  I decided to do that rather than go home and have to go through all the planning again and delay my schedule by a day.

We had to be back for 4pm to speak to one of the doctors, so we went across the road to Starbucks for a coffee, which passed some time. We arrived back by 4pm as requested and by about 5pm we saw the doctor. Filled in some consent forms and discussed the procedure, again this was done in the cupboard. He was good enough to sit on the bed that was stored in the corner.

six o’clock came and went and at about seven we saw the people leaving. I had a quick chat with them as we had met before and she lives near to me in Hawarden and both go to Chester Hospital. She has been in three weeks and the second week was her worst but picked up well in the third (sounds like a horse race doesn’t it). I had pretty much been told that would happen with me by the doctor earlier on. We wished each other good luck and said our goodbyes.

Nurse arrived to take further details and do some observation and MRSA tests, in the cupboard of course. Very nice person, which I’m sure they all will be, can’t fault the attitude (so far :D). Turns out she is fluent in Spanish which pleased Charito. Her mother is Spanish and has friends from Peru. So after 10 minutes gabbing I decided to disconnect my own blood pressure equipment and pulse monitor. She did apologise though, I didn’t mind though, it was good to see Charito engaging someone in her own language.

The Nurse went away to see if my room was ready. 8:30 she came back and said she was putting me in a temporary room just for tonight as they (who ever they are) hadn’t been to prepare the room. So I’m currently in someone else's room, apparently they are over at Clatterbridge hospital today. So I haven’t unpacked as there is no point as I will be moving to another room and would only have to cart all my things over.

I’m having my Hickman line put in tomorrow, but in the meantime I have a canular put in  right hand. I’m not quite sure what I’m going to have in it prior to my Hickman going in at 10am tomorrow. I will have to wait and see.

In this room I have a TV that belongs to the person staying here, but unfortunately I can’t seem to get Big Brother…. thank goodness for the internet (yes I know that is pretty sad, before anyone says anything)

Getting Ready

I have been getting ready for my stay in hospital. I go into the Royal tomorrow at about 2pm, Chris (next door) has kindly offered to take me in. We went around to Chris and Jodie’s last night, Jodie prepared some lovely food as usual and is doing very well with her not smoking (keep up the good work Jodie, I don’t want to come out and find out you have given in – Chris don’t make it any more difficult  than it is, you know what you are like winding  people up!).

Thanks to everyone who has sent me good wishes etc. I will have access to the internet while I am away, not sure how often I will be blogging, I suppose it depend on how I feel. I will try as much as I can. I’m also taking in a headset and webcam to chat to family, probably through gtalk. So if you want the details, let me know your gmail address. Of course these plans all may go to pot if I find out I can’t use them or I’m too i’ll.

I’ve decided to shave my head again before going in. I gather it will take a couple of weeks after the chemo before it will fall out anyway, but i’d rather not have to bother with getting my head shaved after it begins to fall out.

It’s typical though, I woke up this morning with a sore throat and ear ache, I’m just hoping that this wont cause any delays with the planned process. It’s probably just caused by me worrying though and hopefully nothing to be too concerned about.

I will blog tomorrow once I have settled in.

The plan of action, as far as I am aware is:

Monday: Settle in.
Tuesday: Central line put in chest
Wednesday: Chemo day
Thursday: Previously harvested stem cells put back into me (Engraftment)
Rest of the time: recovery process.

Update for those on Facebook

To bring everyone up to date as to how I am doing...

After a number of months of chemo and various other drugs all in preparation of my stem cell (bone marrow) transplant, I finally have a date.
There are two stages to the the transplant:
a) the extraction of stem cells.
b) engraftment - putting the stem cells back in.

I'm having what is called an autologous transplant, which means they take my own stem cells and re-insert them back into me at a later date. I have already had the extraction process and that went successfully after two days on the machine they finally had enough for the next stage.

The engraftment process takes longer and is more dangerous. I will have to have about a 3 to 4 week stay in hospital that requires a very high dose of chemo that will destroy all of my bone marrow/stem cells in my body. They then re-insert (engraftment) the stem cells previously stored. I wont have any immune system during this process and it will take about 3 to 4 weeks for my body to recover enough to be able to come out of isolation and return home. It takes a number of months for the body to recover completely and the immune system to return to normal, so I will have to be careful what I eat and do once I get home.

Oh the date for this to take place starts on Monday 23 August.

To answer another question that people keep asking as well: After the transplant will I be OK?
Well I hopefully should be OK for a number of years, but it will eventually return as Myeloma is incurable. It depends what is available at that time as to the process I go through, but at the moment I will would have to go through this again. Fingers crossed though that is a while off :D