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

I have a date and can parrots swim

I had my appointment at The Royal Liverpool hospital this morning. After have my blood taken, the usual process is that I then have to wait for about an hour before seeing the doctor and the results to be returned. So I had my blood taken and then went over to the G-clinic for my usual wait; however this time it was much more fun.

Paula (http://feresaknit.wordpress.com/) had already emailed me a couple of days previously saying that she was at Liverpool on Friday and that we might bump into each other again. Sure enough they were in G-Clinic when I got there. I went over to talk to them, but this time I was determined not to say anything wrong, like I did last time we met (see previous post about the keys). Paula had already had her bloods taken and she and her husband said they were going to get a cup of coffee (from the coffee shop just around the corner of G-Clinic). They asked if I wanted to go with them, but I said no, knowing that I might say something I shouldn’t again and I didn’t want to feel bad again and drop Paula in it. However after about five minutes talking with Bernard as he was telling me a funny story, they said are you sure you don’t want to come for a coffee. So I change my mind and went with them. I’m really glad I did, we never stopped laughing. They are both really fabulous people and have plenty of funny stories to tell. If you ever need cheering up, just spend some time with Paula and Bernard.

After the coffee we went back to clinic and waited for our names to be called. The rest of the people waiting must have thought we were nuts, as we just kept laughing. Apparently and during conversation in the past, I can’t remember which story this related to now, probably involved Paula’s skills at driving (all of the very funny), anyway it went something like this – Can Paula Drive? Bernard ‘Can Parrots Swim! As Paula was telling me this I thought, errr i’m not sure, can they. Then she said exactly the same thing that she wasn’t sure either.

Later on I received and email from Paul telling me apparently they couldn’t. However me being me, always being argumentative and not believing anything anyone says have Googled it and found a video clip of a parrot swimming.

 

 

So now when when Bernard uses that phrase Paula, you can say. ‘Yes they can’

The waiting went very quick and I have never enjoyed my time at a hospital as much as I have today. Thanks for the coffee Bernard next time I will buy.

On another point and the reason I was at the hospital today, I was waiting to see if they were going to give me a date for my stem cell engraftment (so called transplant). I’m glad to say that I now have a date (providing I don’t get told they have changed it). I’m going in on Monday the 23 August. Which means that I will be in hospital for Amy’s birthday and the parachute jump that is being organised for the end of the month. I want to see lots of pictures and videos.

Although it is still a number of weeks off yet, at least I have a date I know I am working to, rather than it should be next month or the month after. Providing everything goes to plan, which there is no reason to think it shouldn’t that is the date I will be going in.

I know I have written much in the last few weeks and thanks to everyone who has emailed and called to ask if I am ok. The only reason I haven’t written anything is that not much has gone on really. I had another does of Pentamidine at the hospital last week (yuck).

As I explained to Amy on the phone, the highlight of my life at the moment is what time is Big Brother on. (yes that is how bored and sad my life is at the moment). I get all excited when something new happens in BB (I think I’m turning into a woman)

I’m looking forward to tomorrow as it is Chris and Jodie’s birthday party next door. So I’m sure we wont be noisy or drink too much (believe that and you will believe anything). I would let my hair down, but I don’t have that much to do that with. My hair has grown back again but very thinly at the moment, but it’s only for the next few weeks, as I will definitely lose all of it when in hospital for the 3/4 week stay.

So even though the weather wasn’t good today and I got went in Liverpool town centre, I have had a good day and tomorrow is going to be even better.

Tai Chi and Qigong Health benefits

I ’ve been looking into alternative therapies for Myeloma, not that I’m going to change my treatment, but as a way to increase my life span. I found some information about Qigong (pronounced chi gong). Tai Chi is a moving form of Qigong – more info

The benefits are medically proven and I have looked into local courses and will hopefully manage to get some lessons before my engraftment. There is also a form of Qigong that can be done while sitting down –the eight Brocades, which is suitable for recuperating. There are various different forms, the eight brocades is one of them.

If it helps with myeloma and increases life span, then it is worth doing - Tai Chi And Qigong Show Significant Health Benefits

Lilies in the garden

I took Charito to the bus stop this morning and as we were getting into the car Charito pointed out that the Lilies had come out in the garden. When I got back home I took some pictures of them. There are more on my Flickr page, but I have added some below.

Hospital visit

Well I got up this morning and filled the last bit of my wee container (sorry Paula, only managed to fill one), then I had my shower and got ready to leave for the hospital. Charito and Pilar (Charito’s sister) were ready as well as they were coming with me. We set off at about 8:15 and after about five minutes Charito said to me – ‘Did you put your wee container in the boot’. Errr No! So I had to turn around and go and pick it up. So off we set again at about 8:30am.

We went up to 10Z as Edwina told us to and only had to wait about 5 minutes and she came in to see us. While waiting we had a chat with a lad called Chris who has Leukaemia and recently had a bone marrow transplant from his brother. He told us that he was only in for three weeks and it all went well. He even said the food was quite good, although he couldn’t taste it much as his taste had gone after his Chemo and transplant. One thing he did say though was that he lost a couple of stone while he was in (talk about a crash diet), so that is a good thing to look forward to as I have put on quite a bit of weight since last November.

Anyway Edina told us that it would be quicker if we went down stairs again to have the blood taken as it would be a while before they got around to seeing to me. First we sorted out with Edwina which blood test to complete. She gave me two forms when I was there last and I also received two in the post, which it turned out I didn’t really need. So we picked up my container of wee and started to walk towards the lift to back down to the ground floor from floor ten, when we saw Paula. For those of you that have been reading the comments on past posts you would have seen a message from Paula saying that she would be at the Royal at the same time.

Paula has already had her transplant and she has been keeping a blog of her own. If you get a chance take a read as it is very good and very encouraging to people like myself who have not gone through it yet. Paula’s blog is http://feresaknit.wordpress.com/ and is very witty. Also take a look at her Myeloma Buddies http://feresaknit.wordpress.com/myeloma-buddies/ 

I first came across her blog from a Myeloma Alert message things that I use and then started to read her blog. She has a good video of herself which I think really shows her personality – really positive and always smiling and giggling http://feresaknit.wordpress.com/2010/06/20/more-blood-results/

If your reading this Paula, sorry about dropping you in it with Bernard – I didn’t realise he still wasn’t aware about the Keys http://feresaknit.wordpress.com/2010/06/29/dont-tell-bernard/ trust me to open my big mouth.

It was really good to meet Paula and Bernard and I don’t think they realised how encouraging it is to meet a couple like them who are very positive. Paula was dropping off a gift for the nurses and we were chatting and engrossed that the lift doors had opened and closed without us realising it! doh!

Paula has been told that she doesn’t have to go back to the Royal anymore which is really good news. It means the transplant has gone ok and that she can eat what she wants now and doesn’t have to be as careful. I hope mine goes as well and and look as good as she does after only seven weeks.

We left them as they were going to get a coffee to celebrate (there was talk about a curry later on, so hopefully they enjoyed it – and kept it down)

I went to the Phlebotomist to have my blood taken. Fortunately there weren’t many people waiting so it only took about 15 minutes including the waiting time.

I also needed to have a few other tests done, but that wasn’t until about 11:30 so as Edwina suggested we went for a coffee before then next tests. It was only about 10am after the coffee, but we decided to go down again (the coffee shop is upstairs – good exercise). I had to tell them I was there on one reception, then go over to another reception, which is actually next to them (so close in fact that there seats are back to back). So after telling them I was there I sat down on the Cardio side to wait.

There were three test that I needed to have done. An Echocardiograph (ECG) a standard heart check (the one where they stick the stickers on your legs, arms and chest and monitor it for a few minutes) and a lung/breathing test. Oh they also take your height and weight. They called me in to have my heart check which took a few minutes and while going to another room, Charito shouted me and told me that they had called my name on the other side as well. (it’s good to be in demand!). They had to wait until I had my lung/breathing test done and my weight and height taken before going to see them. I knew what they wanted though from previous visits, they only shouted my name to have my weight taken, which is normal prior to having to weight before going in to see the Doctor.

So it is a bit ridiculous that you have your height and weight taken on one side of the room and then get called to have it taken again on the other side. (I’m not sure if I lost weight from one side of the room to the other though).

I then had to wait for my ECG for about 20 minutes. When they called me in, he asked me if I have had and ECG in the past. I told he him no. He said well its very similar to a baby scan. I told him I haven’t had one of those either! (I really do need to lose weight if I look pregnant!)

It takes about 20 minutes for the whole process of the ECG to be completed. One of the things they do is scan from in between the rib cage at the top of the stomach upwards towards the heart. Before doing this bit of the test, he asked if I had any pain there, which I didn’t. I do now though as he presses quite hard, I think I may end up with a bruise.

At one point during the test he asked me how old I was. Once I told him, he made some adjustments on the machine and then said ‘ah now that’s better and makes more sense. I asked if I had a heart of a 70 year old. He said quite the opposite, my heart is good. So I have finally proved to all of those that doubted it, I do have a heart and it isn’t made of stone :-)

Prior to finishing the ECG he said the results would be available for the Doctor at the end of the day and wondered when my next appointment to see the doctor was. Err actually I’m waiting to see them now! That’s when I realised I wasn’t going to get away from the hospital for quite a while.

So over to the other side to wait for the doctor and wait and wait and wait etc

Finally got to see the doctor after almost everyone else had left. I thought I was going to be given the date exactly when I go in, but it wasn’t to be.

I’ve been told it will be about six week, which is disappointing, I was hoping it would be in a couple of weeks. I have another appointment in 4 weeks for further blood tests prior to going in (if they don’t change the date again). The Doctor told me that it is taking longer than normal as they don’t have the beds available. The reason being that they don’t have the staff to look after the patients, not through funding, but not having qualified staff. It takes a long time to train staff up to manage the transplant unit unfortunately.

I was originally told it would be April then May or June, now it is mid August (hopefully). I really am fed up with waiting and just want it over and done with. I’m surprised how long it is taking and it will be nearly a year by the time I’m feeling OK after the transplant (back in Nov 09).

Another Gallon of Pee

I had to start Peeing in two half gallon containers again today (not at the same time, that would be quite skilful, they gave me two in case I fill the first half gallon container) . I think it is the same test that they did at the start of my treatment back in Nov 09, but I can’t be sure called the Creatinine Clearence Test.

I have to collect the urine I pass in 24 hours in the containers and take them with me to the hospital tomorrow. I’m also having a couple of blood tests and an echocardiogram in preparation for my trip into hospital.