What a week

Well it’s been a very busy/strange week if not two weeks.

What I thought was going to be a straightforward first PAD cycle has turned out to be anything but!

After having the the PICC line fitted and my first doxorubicin I thought it went ok, but then as you know my arm started to swell up at the top on Saturday although I felt it slightly irritating throughout the week. The Saturday evening after talking to the out of ours ward, they advised me to go to A&E (accident and emergency) to get it checked if I was concerned. Obviously I was concerned, hence my phone call, so took myself off to A&E. Now I have learned my lesson with going to the hospital in the past and now I keep a set of PJ’s in the car just in case they keep me in (well prepared :) )

I didn’t have to wait too long before seeing someone and they examine my arm and didn’t really know what to do with me and took some blood from my other arm and kept well away from the PICC line. Now I’m sure she was a good nurse, but she didn’t know the hospital very well. She had spoken to someone on another ward and they told her to take me to AMU (Acute Medical Unit) I had been their before and quite familiar with the layout of the hospital, but she insisted that we go another way, even though I said to her are we having a tour of the hospital! once we got the ward where she was taking me they told her that it wasn’t the AMU ward  (which I knew) and so I suggested I take her as I knew where it was. I went straight there after backtracking down the corridors she had just taken me! So that was the first worrying thing.

Then when I was on the AMU they started to ask the usual list of question, with all the technology they have, you would think that they could just type in my medical number and it would fill in the rest of the screen, but no they have to ask me a million questions. James noticed on one occasion that they had put … ‘he has a my loma’. No I don’t think you need to be a genius to realise that there are some obvious mistakes in that statement and the clearly have never heard of myeloma. Again a bit worrying for them to look after me. It is a very busy ward and they are very much target driven for getting a response and hitting targets to deal with patients and move them on. The next thing that happened was even more worrying is when one of the Dr’s came over (eventually) to look at me that he asked me where about it was! I think the puzzled look on my face must of said it all and I could see his embarrassment when I asked him ‘where my what is?’ …. I think he was asking where ‘my loma’ was that he had seen on the screen notes the nurse had scribbled down. What I really wanted to say was .. it’s all over Derrrr its in my blood! but I was feeling a bit forgiving as he seemed quite nice and gave him a bit of an out. Do you mean do I have any lytic lesions that are causing any problems…. errr yes that what I meant he said. So I told him I don’t have real issues with that at the moment as the myeloma is causing serious problems with my blood which is my main concern. I’m hoping he went away and looked Myeloma up somewhere before making the same mistake again.

It was finally decided to remove the PICC the line and to stop any more issues, this was done after speaking to specialist at another hospital (Clatterbridge) who advised them to remove it.

I was then moved from the ward I was on, after several hours to another side ward on my own, this was the second move. I can’t really remember what day it was by then as I had been up all night etc but I was moved again at some point to another side room, still on AMU. The first room had a toilet and shower in the room, but the toilet door didn’t lock the second room solve the door issue, by not having a toilet in it at all. So although I was in a room on my own because of infection risk, I still had to leave the room to go down the hall to the communal toilet, which sort of seems a bit pointless to me. The room I was in had no mirrors the lights were very dim and no clock, it was very depressing in deed. It was as if I had just been shoved in the corner and forgotten about, now keep in mind I was on my Dexamethasone as well, so I was high and low and my emotions are all mixed up and I was seriously thinking that I might never get out of the hospital and would die there in a yucky room.

They started me off on antibiotics in different forms from a drip and and injection that I had every few hours. The hours and days all blurred into one and I wasn’t sleeping on a two hours a day. At one point I got to see a doctor again, another one, not the same one I had seen before. I think I spoke to three different ones while I was there. I kept asking had they spoken to Dr Lee and the team that is dealing with me in the hospital. I think it as early Sunday morning now and I couldn’t wait for it to be Monday morning so that the full team would be in which they could speak to. After asking the the Dr have you spoken to Dr Lee he assured me that they were communication with her and that it was being dealt with. That nearly threw me over the edge as Dr Lee is a man  and not a her,  I just wanted to be rescued!!

Come Monday mid morning I got a great surprise my not only did one of the team come from haematology to see me but three of the senior members including Dr Lee came over. Gave me a proper examination and put things in motion to get it sorted. Within minutes and ultra sound of my arm was organised to check that I didn’t have a blood clot and blood was still flowing. I was put on the top of the list to get me moved into their ward as soon as a bed was available and we discussed about what I would do about my treatment, if I should hold off or continue etc as Monday I was supposed to have my Velcade. It was decided to continue as I had had the first cycle of doxorubicin and didn’t need the PICC until next time, but rather than I PICC being fitted we would organise a Hickman Line (central line).  The Velcade would go ahead after appropriate blood counts and platelets. All the team was wonderful and I felt like crying just to see them. (in fact I did quite a bit of crying while alone throughout the night), but at least this time it was because I was happy to get things sorted. Jen, one of the wonderful nurses that looks after me brought all of the equipment over to the ward to give me the Velcade even carrying the special disposable cytotoxic waste drum for any wastes with her. After looking at my arm and seeing the state of the cannula in my arm she had to remove that first as it was blood all around it and was safe to use for the Velcade. It was so dark in my room she couldn’t see what she was doing properly and decided in the end to escape with me to her day ward, which I was very grateful of, I didn’t really want to go back. She got hold of a wheelchair and took up over to the ward. Where it was very bright and she could see the mess of my arm. It was full of holes where they had taken numerous blood test and the cannula that she took out was in a right mess. She eventually got a new cannula in place that didn’t take the same track as one of the other holes and wouldn’t be infected in any way. She bandaged up the other parts of my arm and returned me to my room after successfully giving me my Velcade.

I had to have a few more units of blood and platelets one I finally got moved up to the correct ward at 2am in the morning but I was only there for the day while I had the blood and waited for my tablets. I was just so glad to get out of that horrible room!

Finally got home yesterday and did nothing but each some fish and chips and watch a film with my Son James. He came to stay with me for two week while on holiday .. not much of holiday for him!!!  I managed to get some sleep last night but was up at 5am. The steroids keeping me awake.

One think I forgot to mention is my hairy arms … I got sick of them ripping plasters off my arms and tearing my hair out, so today I shaved my arms. I have shaved my chest in preparation of my Hickman line being fitted so thought I would do it all at once. I had to go back into hospital today for my Velcade again, so a blood test and cannula fitted in the morning, wait for results and then get the Velcade mixed and injected before going home later on. My blood results showed that I was just on the border line for getting the Velcade as my platelets are low again, so I have to go back in to hospital for more tomorrow, but not until the afternoon, unless I have problems. So at least I get a few hours at home.

My next appointment (so far) after tomorrow is Tuesday for general check up and also I should know when my Central line is fitted.

So I will keep you updated.