To keep myself up to date with news dealing with Myeloma I have set up google alerts for key words dealing with Myeloma. Imagine my surprise when on todays update I saw my own name. This is thanks to Myeloma Beacon
http://www.myelomabeacon.com/links/2010/09/28/my-life-with-myeloma/
The Myeloma Beacon has some great articles dealing with Myeloma and is a good site to follow for anyone wanting to find out more about the disease.
I just found this site with the perfect solution for people similar to me who have lost their hair through Chemo or just generally bald for any other reason.
http://www.knitty.com/ISSUEfall04/PATThallowig.html
I have passed this info on to Paula and if you ask her nicely she may even make you one for a small fee. What a great Christmas present they would make. I think they look much cooler than the general head scarves.
Would I wear one …. If there was one suitable for a man, probably, I’m daft like that. I do honestly think that they look trendy though, especially for young girls who have to deal with hair loss through chemo treatment.
What do you think, let me know?
I planned this picture a while ago, before going in for my transplant. click on the picture to view it at full size.
I realised I haven’t written anything for a few days, so here is an update from last Fridays appointment at the hospital.
I took some painkillers first thing in the morning, yes my arm is still hurting, and drove to Liverpool. Driving has been OK and I have been out a couple of times taking Charito to work to get used to it. My arm aches a little, but as long as I time it right with the pain killers, I can get away with it. Anyway … I got there at about 9am and waited to have my bloods taken and then went around to G-Clinic. Thankfully this time I only had to wait about an hour for the results to come back before going in to see the doctor.
As was in with him for what seemed about an hour, but was probably only half an hour. I had a good chat with him and went through lots of different things, but mainly about the pain I was still experiencing in my arm. He examined me and went through option for changes of medication. The septrin that I was put on the week before has now been taken off my list of things to take, as he thinks it may be affecting my bloods in some way. My neutrophiles have dropped, they went up to 3.2 but are now 1.6. He said it is usual for them to up and down, but just in case he would take me off them especially as I am ok taking the pentamidine, which I have been taking for months and my body is used too. Also got some new pain killers and different anti sickness.
I also needed to have that X-Ray that I didn’t have the week before as well as have the pentamidine while I was there. So after seeing the doctor I went on my travels around the hospital. First to the X-Ray department (another wait), while there I helped a woman get a glass of water from one of the many water boxes, scattered around the waiting area. As it was the same tap control on a box of wine, I was quite skilled in how to use them. The woman, whose name was Susan went on to tell me that she couldn’t use her hand properly as she had fallen over about seven weeks ago. When she showed her hand to me it was all twisted and swollen as if she had only just done it. Apparently when she did it they put it in a cast and that is how it set and now they are telling her that there is nothing wrong with her hand! She had argued with them that there was and that her hand didn’t even look normal and she couldn’t use it properly and insisted on getting it X-Rayed again. I don’t think I helped build her confidence up when I told her that it looked more like a foot than a hand! Oh well I hope she gets it sorted as I doubt I will see her again to find out.
After the X-Ray I had to make my way up to 10Z to have my Pentamidine and also to get one of the doctors to have a look at my X-Ray results which would be on the system for them to examine. Oh prior to that I dropped off my prescription at the chemist. While waiting for my Pentamidine there were a couple of people in the waiting area (broom cupboard) I didn’t know one of them, but the other person was a woman called Jennine. Jennine is the woman that was in the next room to me during my stay in hospital. Although I never met her during my stay, I knew of her and was aware how ill she was during her stay. It was good to meet her and know she was ok. I knew of a few times that the crash team were buzzed in the night and was thankful that I didn’t have to go through what she went through. I also found out that she had her stem cells from a donor, rather than her own, which is what I have had. Having stem cells from a donor is more difficult than having the autologous transplant, which is what I have had.
When I was on my own they locked me in the room as usual and I had my pentamidine, afterwards another nurse came in and told me that she had spoken to the doctor and my X-Ray was fine and wasn’t showing anything unusual. So now I have to wait until I have the MRI scan to see what that shows up.
I picked up my prescription on the way out and also bought a drink and a snack as I was shaking a little with not having anything to eat or drink all morning. By the time I got to the car in the car park I was absolutely shattered and sat there for a few minutes having my drink and snack, which consisted of a bueno bar. I was conscious that I couldn’t see there too long as I had already paid for the car park and I wasn’t sure what the time limit was from actually paying for your ticket to leaving the car park. Fortunately I was ok and got out without any trouble. Oh forgot, I took some more tablets before leaving the hospital as the previous ones had worn off. I was in more pain driving home than I was driving in, as the tablets hadn’t fully kicked in by the time I left.
Since then I have been resting and trying different times of taking my tablets and I seem to have found a routine that works. I can now manage to get at least 5 hours sleep each night if I time it right. I have even managed a whole night from 12am till 7:30am one night, which was great.
I have to mention again Chris and Jodie (next door) and thank them for helping me. Jodie has looked after my garden and cut the grass (again) and cut down all of the bushes in the front which now looks a lot more respectable and Chris has washed my car (again). I really appreciate having such good neighbours. Thanks :)
While I’m thanking people I should mention Pilar my sister in law who has been staying with us for the last 5 months (from Peru) she has been making sure that I have everything I need and been cleaning everywhere for me to make sure I don’t catch any germs as well as preparing my lunch and generally taking care of me when Charito hasn’t been here. Which has allowed Charito to relax when she gets home from her Jobs.
I woke up again at 4am this morning in pain again. I’m trying not to take too many paracetamol so I just took one dihydrocodeine it wasn’t as affective as taking both of them together, but I managed to get back to sleep. Up at 7am and took both lots of tablets as the pain was too much to bear.
One of the questions I asked last Friday at the clinic was - ‘how soon can I drive again’. I was a little surprised by the answer as I thought she was going to say about 4 weeks or more, but actually she told me that I could drive now if I felt safe to do so. Obviously if I felt sick or drowsy or couldn’t use the controls because of the pain then don’t do it. So today after waiting for the pain killers to kick in and the car sanitised I took Charito to work. Although felt a little strange at first, not driving for over a month, I managed ok.
If only this pain would go away, I would feel so much better. I have pain in my neck now as well, so it’s looking more like a trapped nerve. I felt better for a while today after I got home from taking Charito to work I had a really hot bath that seemed to ease it for a while. I’ve managed to go up till 4pm without any pain killers, which is good as previously I’ve been clock watching to see when I can take the next lot every 4 hours.
Every four hours.
8am = 2 paracetamol
12pm = total 4 paracetamol
4pm = total 6 paracetamol
8pm = total 8 paracetamol
12am = total 10 paracetamol
4am = total 12 paracetamol
All of the above times are plus a dihydrocodeine.
As the maximum dose in 24 hours should be 8 tablets, you can see why I try and miss a few of those out, although I am in pain when not taking them. Taking a bath and trying to get some sleep during the day seems to help get through a few hours, so I might start to do that on a daily basis until it eases off as it’s driving me mad!
I was picked up early Friday from home by the North Wales Ambulance Taxi to take me to the Royal Liverpool hospital. Arrived about 9:45 ish. I had to go up to 10z first before going to G-Clinic. 10z is on the the tenth floor and G-Clinic is on the Ground. I only had to wait about 30 minutes in 10z to get my bloods taken. I was waiting for with someone else called Robert who I had a good chat with. I was encouraged when he asked me how long ago it was since my transplant, when I told him and his wife, they were shocked and thought it was about three months ago. He said that he was much worse than I am when he came out and he was similar to me and didn’t have any infections or sore throat/mouth. So that made me feel a bit better.
I’ve still been in a lot of pain with my shoulder and explained that to the nurse at the hospital, but they can’t really do anything and I needed to discuss it with the doctor when I got to see them in G-Clinic later.
The nurse took my blood and then gave me the vials and paper work to take down with me to G-clinc. So off I went down in the lift again to G-clinic. registered in and handed over my bloods, which were promptly given to a nurse who took them straight over to the department to get the results. This process normally takes about an hour for the results to come back, so I went and sat down and started to twiddle my thumbs knowing that I was in for a wait.
Robert came down about 20 minutes later and I saw some other familiar faces, I managed to catch up with Marilyn, who if you remember was the person I had my extraction process with, she was also having her engraftment at the same time as me, although she went in a week earlier. She came into G-Clinic after me and was seen before me as well, so was Robert and goodness knows how many other people came and went and I was still waiting. I asked the nurses if my blood results were back yet, but they were still waiting. There was one point were the doctors couldn’t see anyone as the blood results weren’t back. The nurses were trying there best to chase up where they were, even going down to the department with a list of names that they were waiting for.
The time was ticking away. The ambulance taxi driver and already informed me that he had to go and do some other jobs and had text me to let me know that he would be picking me up at 1pm. Plenty of time I thought, but looking at the time it was creeping towards 12pm, keep in mind I hadn’t had anything to eat or drink all morning as well, not that I was feeling up to eating much anyway, I couldn’t eat my breakfast in the morning as I felt a bit sick.
So by this time my thumbs are quite sore from all of the twiddling that I was doing. If I had the energy to get angry I would have done by now as even the people that hadn’t had their bloods returns and lab chased up had been seen. I’d received a phone call from Tony the ambulance man saying that he would be with me in 5 minutes. Yes it was 1pm now! I told him I shouldn’t be too long now as my folder was the last one on the desk so I had to be going in soon. He was shocked that I hadn’t even been seen yet (not as much as me).
I finally got in to see Gillian, who is the registrar (a specialist doctor assisting the chief specialist) and I complained to her about the 3 hour wait. She apologised and agreed it was ridiculous and explained that the lab had misplaced my bloods and showed me a printout that she had been given. They don’t normally get a printout, so she knew something had gone amiss. I knew it wasn’t her fault though as I was aware of the nurses trying desperately to find the results for myself and the other patients. It’s just typical though that mine had to be the one they completely misplace!
Anyway my bloods are OK and I didn’t need to have any blood transfusions, which is good, as I’ve managed to avoid them up to now. I get on well with Gillian as I have seen her a number of time and she was the one who took my Hickman line out and stitched me up (literally) afterwards. She has a good sense of humour and will always try and find out what is causing the problems. She’s also the one who made me the soup while I was in hospital. She asked me about the pain in my arms. It’s got worse, it isn’t so much both my arms now, but my right arm is very painful. She examined me again and did the usual pushing and pulling test. She was concerned that I now have no feeling in the top of my right arm and she didn’t think it was anything to do with my myeloma or the transplant, but that I may have a trapped nerve. I had to do some test with moving my head up and down and left and right to see if that caused me any pain, which it didn’t. She is arranging for me to have an MRI scan as I haven’t had one before and it will show up any problems. The normal course of action it to have an x-ray prior to MRI, which she wanted me to have then, which would mean another wait. I told her the taxi was waiting, but I agreed that if it needs to be done then he will have to wait or arrange to collect me later.
I also went through a list of questions that I had, one of them being about the stitches being removed. She said she would do it, but she didn’t have the equipment with her so would I be able to go back up to 10z and ask someone there to do it. I also need some more tablets which she gave me a prescription for. I’m going to be trying the Septrin tablets again, if you remember these were the ones they thought were causing the rash and itchiness, but actually it was the allopurinol. If I start to come out in a rash I obviously need to stop taking them. Not sure if I need to keep up with the pentamidine now though if I am taking the Septrin tablets, I will need to ask that next time.
Anyway …. So I was supposed to have x-ray, get stitches removed, get a prescription made up at pharmacy and explain to the ambulance man that he would have to wait! Thankfully Gillian changed her mind about the x-ray. It is a formality she said as she would be asked why she has arranged an expensive MRI scan without having an x-ray first, but she said she would deal with that. So that made it easier for me.
So after getting my blood forms for next Friday and handing in my forms to the receptionist to arrange next appointment I went upstairs to the pharmacy. Bumped into Tony the ambulance taxi drive and explained that I wouldn’t be too long (I hoped) dropped off the prescription, went down the escalator again, jumped in the lift (ok walked slowly) back up to 10z, didn’t have to wait too long, about 10 minutes, but felt like 20. No problem with stitches coming out, stung a little with one of them, but only slightly. Then back down the lift, up the escalator, nipped into smiths to buy a drink, before I collapsed. Picked up the prescription and back down escalators to meet Tony outside in the Ambulance car park.
Phew at last on the way home. Drank my drink in the car and chatted to Tony. Found out that they are all voluntary and they just claim back their expenses for petrol and tunnel fees. They do it because they enjoy helping others and meeting people. How wonderful is that, it’s good to know that there are still some kind genuine people out there.
Got home and Pilar (sister in law) made me some soup and a coffee. I was definitely ready for that! Fell asleep on the sofa for a couple of hours as I was totally shattered. Had some tea and took some more pain killers before trying to go to bed.
I woke up at 3am in terrible pain again, the tablets had worn off. Went down stairs and took some more. Sat around for a about 15 minutes as I was in too much pain to do anything else. I felt a bit sick as well, not sure if that was because of the pain or just because of the treatment, as I felt sick in the morning with my breakfast. I needed the loo, so decided to go back up stairs. As I was feeling a bit sick, I decided to take up one of the grey cardboard bowls that I got from the hospital (I took two home with me in case I was sick in the car on the way home). No sooner had I sat down on the toilet as I started to throw up, quite a bit! Charito got up and made sure I was ok and after cleaning up and brushing my teeth, sat on the bed for another 15 minutes or so, decided to try and lie down again. I couldn’t take any more pain killers, as I wasn’t sure how much my body had absorbed from the last lot I took before throwing them back up.
Didn’t get much sleep and got up and had my shower at 7am, came down and took some more pain killers. At the moment I’m feeling OK and as long as the pain keeps away, I’m doing really well.
If it is a trapped nerve, I’m hoping it will move out soon, not sure when the MRI appointment will come through, but Gillian seems to think it will be after next week. Until then I will just have to keep taking pain killers and putting up with it.
Well Monday night was even worse for the pain in my shoulders. I took some pain killers before going to bed, but woke up in absolute agony at 1am with pains in my shoulders. I couldn’t lie down at all. I went down stairs and decided to call the hospital to see if I could take some other pain killers that I had that were prescribed in Chester. Unfortunately I couldn’t as they didn’t know what my blood counts are and they could affect me. So I couldn’t do anything more about the pain. I ended up sitting upright on the sofa and trying to get some sleep like that, as it was far too painful for me to lie down.
Tuesdays I had to be at Liverpool hospital in the afternoon so that they could check my bloods. They took my blood and said that I could wait around or they could call me later and I might have to go back in the same day if I needed anything e.g. platelets, blood etc. As I had to arrange to get a lift in, I used the hospital ambulance-taxi service, it would be impossible to go home and come back again, so I had to wait. It wasn’t too bad I arrived at the hospital at about 1:30pm and I was home by about 4:30pm. The results came back and everything is fine, didn’t need anything doing. I got a prescription off the doctor and she examined my shoulders, but couldn’t see anything wrong. It’s very strange as it doesn’t hurt at all during the day. I even tried lying down on a bed to see if it hurt, but it didn’t. I don’t normally have pain in my shoulders and I don’t have myeloma problems with them, nothing showing on previous x-rays. So we have no idea why they would be hurting.
Last night was OK I took the tablets prior to going to bed, just in case, not sure if I needed to or not, I managed to have a reasonable nights sleep, only having to get up once in the night. Although I was sweating a lot, to point where I had to change my top during the night as it was soaking wet. My temperature is ok though, so it just might be my body getting used to the bone marrow.
In general I’m feeling OK, still very tired, which I’m sure will last for a while yet. I’m eating OK, but can’t each too much. I tried a lamb soup today, but couldn’t touch that at all as it reminded me too much of the Lamb Moussaka incident at the hospital, I don’t think I will be able to face eating anything remotely smelling like that for a while.
Last night I decided to stay up a bit later to see if I could manage to get a good nights sleep, rather than wake up in the middle of the night. It was about 1am before I went to bed.
It worked to a point, but at 6am I woke up with terrible pains in my arms (what did you think the * meant!), well actually it was the top of my arms. I couldn’t make out if it was my muscles or my bones, as it was so painful. I couldn’t lie down so I sat on the side of my bed. Charito got me some more pain killers, but obviously they don’t work instantly, wish they did. After about 30 minutes it seemed to calm down a bit, so thought I would try lying down again… bad idea as that just made it worse again. So I sat on the bed again. The alarm went off for Charito for work at 6:45 and once she was ready and left for work I jumped in the shower, well more of a crawl and slow climb than a jump, but you get the idea. I felt better after the shower and once I had settled down in my chair downstairs with my breakfast and coffee I felt much better.
So I’m sure again if it is just my muscles aching because of the way I am sleeping or it is something to do with my new bone marrow working it’s way through my joints that is making it ache, either way I know it hurt.
I wonder what tonight will be like, I will just have to wait and see what it brings…
Well I was released from hospital yesterday, although later than I though it would be as I had to wait for pharmacy to deliver my medication for home, which didn’t arrive until about 6:30pm
It was really nice to be home again and to has some peace and quiet. The first time I went upstairs I had to crawl as I didn’t have the energy to walk up properly.
Sleeping in my own bed made such a difference. I woke up at 4am, had a drink of water and then managed to go back to sleep until 8am. Although I must have hurt my shoulder in my sleep as I am in a lot of pain at the moment. It feels as though I have crushed my muscle in my arm. I must have tried sleeping in my side for the first time in three weeks and with me being in such a deep sleep stayed like that, but obviously it hasn’t done my arm any good. I’ve taken some paracetamol, but they don’t seem to have done much.
I’m totally exhausted and just moving around the house wears me down. Hopefully over the next few days I will gradually get some energy back.
I didn’t get much sleep last night, as there was lot of activity during the night with other patients who were very ill. I had my breakfast at about 6:30am and tried to eat shepherds pie for lunch. What I didn’t think about though was what I had last night for dinner, which was the Lamb Moussaka, which immediately came back up again as soon as it went down. The shepherds pie was the exact same mix, just with mash on top. I managed to eat the pees and carrots though. The registrar came in and noticed I hadn’t eaten it and after going through some medical things asks if I wanted to try some soup instead. I decided on chicken as I hadn’t had that on. So I had the registrar make me lunch, which I’m told is bit of an honour. I huge bowl of chicken soup as well and I ate it all ….mmm very nice.
Later on she was back, but this time with the doctor and three other trainees, all in my small room. The doctor discussed my bloods and how well I am doing and said ….. wait for it, this is the good news……. We are going to send you home tomorrow.
So things have started happening to get me on my way. I’ve been given a going home pack and had a discussion about what I can and cant eat and do. I’ve been on the nebuliser to have some pentamidine, which for some reason didn’t taste as bad as it normally does when I have it. Tomorrow I will be having my blood taken again in the morning, just to make sure everything is ok and they will be giving me some more platelets before leaving. I also need to have my Hickman line removed. They are expecting me to release late afternoon.
I still have to be very careful not to catch anything so anyone who has any type of cold or disease or not washed for while etc wont be allowed into my home.
So don’t be offended if I ask you to sanitise your hands or wash them, I just can’t take the risk of catching anything and ending up back in hospital.
So hopefully providing nothing goes wrong between now and tomorrow afternoon, the next blog post will be from home.
See you there …..
