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Monday, 28 February 2011

Photo time

It’s been a while since I posted some photos, so I thought I would share some that I have taken over the last few weeks. While James was staying with me for a couple of weeks we arranged for a photoshoot so that he could help me out and set the studio up for me. I think he enjoyed helping for some reason …..




My big brother…

Nigel and Anne

Nigel and Anne

New Friends

I’ve mentioned before how it’s good to make new friends on here that are going through similar things as me. This week I’ve been in touch with a couple of people. The first is Walter which I have mentioned in a previous blog post. Now I had no idea who Walter was or where in the world he was or indeed anything about him, apart from the message in the comments.

From the name I assumed that he would be an older guy as it doesn’t seem to be a young persons name and I’ve since found out that Walter is 64 years young. Walter is an amazing guy and an inspiration. Not only does he have Myeloma and had a Stem Cell Transplant but amazingly Walter will be running in the Boston Marathon and has run in 10 previous marathons! All I can say is WOW somedays I think I will struggle to get up the stairs and there is Walter brushing the disease aside and getting on with his life and making a difference to others by getting support for Multiple Myeloma Research Foundation. I will leave it up to you Walter to post a link to your support page if you wish, I haven’t posted it here in light of our email conversation! (that sounds a bit cryptic doesn’t it lol).

Another person that has left a few messages in the past and I received a nice long email from today is Becky. I’m waiting to hear back from Becky with a link to her blog to let you know all about her, but from the email I’m sure I will be posting a few comments. Becky sounds like a like minded person…. when I say like minded, she seems to have the same sense of humour and isn’t afraid to tell people what she thinks when asked … Just like me :D   Always best to be honest I think. … Don’t ask me ‘Does my bum look big in this’ as I will probably tell you … oh yes it huge you fat cow, lose some weight! ;)

After my post about my experience in the hospital and being stuck in different wards, Becky emailed me to tell me about her similar experience. Honestly the similarities are uncanny .. doctors not knowing what to do … being moved from room to room being stuck with lots of needles by people who shouldn’t be allowed sharp objects in case they hurt themselves.  Unlike Walter, Becky is in the UK I think Birmingham from her telephone number, but I have yet to speak to her.  When I can I would like to meet some of the people that read the blog after this lot of treatment I’m going to make it my goal to visit as many as I can – So Becky expect me to turn up at your door one day and say ‘SURPRISE’ put the kettle on .. or rather get your hubby to put the kettle on ;) us myeloma patients have to rest you know.

Hickman line

I had a phone call today from the hospital to let me know that I will be having my Hickman line fitted on Wednesday. I have to be at the hospital at 9am for the usual test etc prior to having it fitted. I’m not overly concerned about it as I have had one before. Although it was uncomfortable as they had to push hard to get it in, which caused quite a bit of bruising, it didn’t hurt as much as the PICC line in my arm. I might regret saying that now, as it will probably hurt like hell!

I’m at the hospital tomorrow again for them to check my bloods and see if I need more platelets etc.

The weekend has gone OK although I can feel my body trying to cope with the various drugs. I’ve been very tired and have fallen asleep in the chair a couple of time, which is very unusual for me. I’ve been getting up early still and had what feels like trapped wind all of the time. I’m not sure if it’s been a combination of having the various chemo/Velcade/Bloods/Platelets or antibiotics that have made feel like this. I’m still on the antibiotics for the next couple of days to make sure that everything has cleared up prior to having the Hickman fitted.

Friday, 25 February 2011

Platelets and gifts

Today has been a quite a good day. This morning my son James helped me move the photography equipment and sort a few things out. Nigel our postman delivered a present from Paula ( It is some special clingfilm that I can use to cover my hickman line once fitted so that I don’t get it too wet while having a shower. It also comes in useful if I want to wrap my body up and cook myself. :)

I didn’t have to go the hospital today until about 2pm to have some platelets, which didn’t take too long to administer, I think I was only there for just over an hour, my shortest visit yet. Yesterday I treated the staff to some Cadburys Heroes, which I thought was appropriate as they are my heroes. They are all great people and I get on really well with them – I know I have complained about other areas of the hospital on my blogs, but these people really do look after their patients and go beyond what is expected of them on a daily basis. They seem to know every patient by their first names and take an active interest in getting to know them. In fact writing this down here is inspiring me to write a formal letter to the trust to tell them. I’m sure they get lots of letters of complaint and not enough of thanks going to the hospital, while I am good I will write a letter of thanks while I can.

My next appointment at the hospital isn’t until Tuesday, so hopefully I won’t have to have any interim visits and will get this weekend off from any hospital visits :)

Thursday, 24 February 2011

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.

Wednesday, 23 February 2011

hooray back home

I got home today at about 4:40pm. bought a film and some fish and chips and pigged out watching TV.

I have to go back to the Hospital tomorrow for my Velcade appointment tomorrow but at least I get chance of sleep and a proper shower.

Moved wards

I was moved early this morning at about 2:30am to ward 50. this is the ward i wanted to be on which all of the haematology patients are on and the team who look after me are next door and do the rounds on here.

Tuesday, 22 February 2011

Still in hospital

Those that have heard i am out of hospital, sorry to inform you but the rumours are wrong. Im still here at least for another night. I may be home tomorrow after having a couple of units of blood and they may send me home with some more antibiotics in tablet form. I have to be back again on Thursday for my velcade.


Had a couple of hours sleep last night. I can't sleep properly in someone else bed when im perfectly Ok,so i don't have much chance of a good nights sleep at the moment.

I went back on my dexamethasone yesterday as it was day eight of my regime. Taking 20 dex a day (40Mg) is going to have me running around at silly times. I've already started crying for silly reasons , i was like this when i was on the dex last time.

So if you meet me and i burst into tears, don't worry it isn't something you said its just the meds.  :-)

Monday, 21 February 2011

Still here

Im still here, in hospital that is! Im still alive as well, which is always a bonus.

Im feeling much better after seeing the team who normally look after me from oncology . It was like having very close family surprise you. I had the my Dr and assisting doctor as well as the specialist nurse come and see me. It was only after them visiting that things started to get done properly. They organised an ultrasound, arranged for the correct drugs, sorted out my platelets etc. Jenny came later on to sort out the mess that was left in my arm with all the needle attempts and was annoyed at the room and mess my arms were in. Although she brought all the equipment from her ward to deal with me, she decided it was was better to take me back in a chair to do it properly in good lighting where she had all of the equipment to replace the cannular and administer the velcade.

It was really nice to get onto my usual ward and it was like going home to visit. As usual they looked after me really well and did a brilliant job. I tried my hardest to get them to let me go home but i listened to the advice they gave and will have to stay in until at least tomorrow. The plan at the moment is to continue with the regime on PAD and after next week sort out having a hickman line fitted rather than a picc. If i had a picc fitted it could go bad in that arm as well, which would leave me with a bit of a problem!

The ultrasound on my arm showed there wasn't a blood clot, which is what they were worried about and would have been a major concern.

The swelling has gone down and it isn't as red on my arm. Im in an isolation ward to keep any people with nasty bugs away or was that to keep nasty people away :-) .

I have toxic wee at the moment so have to make sure that i flush the loo twice having a wee in case i poison someone!

Walter - thanks for your message its good to know people are reading my posts. I hope your treatment is going ok. Everyone is different and reacts differently to treatment and i think that is why we can never get a crystal clear answer to the question we all really want to know. Will this work and for how long. Do i have a year or five or ten or are they trying to tell you it is now a few months! The thing is it can change from one day to the next especially as new treatment is coming out all of the time. I try to take onboard the various options and way up what is best for me to provide the so called quality of life balanced with the treatment that will be the less invasive. At the moment for me the options are a bit limited due to the myeloma being so aggressive, but Im hoping that will change after the next few PAD cycles.  If you want to email me directly you are welcome to do so. My email is as you can probably tell from my posts i don't mind talking about any of the issues.

I will try and blog again tomorrow.  Im sorry if there are a few mistakes on this blog as Im writing them from my phone!

In hospital

Well been busy all week at the hospital daily apart from Wednesday. I've had numerous platelets and blood along with my first doxorubicin over a four day period. James has spent a boring week of his holiday with me waiting in the hospital, but put up with it well.

Friday i had the doxorubicin line and pump removed from the picc line line had it cleaned. All looked well.

I've been teaching James about the photography and arranged a photoshoot on the Saturday, my arm was sore a bit Friday night but thought that was just because of the cleaning. By the Saturday night the top of my arm was swollen and sore. I called the hospital to get advice and they advised i go to accident and emergency to get it checked.

To cut it short I've been in hospital since Saturday and had the picc line removed as it is infected and on antibiotics.  Im full of holes where they have drawn blood etc.

Hopefully home today.

Tuesday, 15 February 2011

Platelets – air in pump

Arrived at the hospital a bit later today at 10am rather than the usual 9am. When I took the pump off and put it on the table, James noticed quite a big air bubble in the line. We pointed it out to the nurse which then started a bit of investigation as to why and how it got there and how they were going to clear it. The pump has an air detection system built in that will set the alram off and it was set to high. The concern was that the air may reach my heart and cause problems (possible death). As it was near the begging of the pump I was also worried about it occurring during the night without me knowing. So we had to get to the bottom of it. After talking to various people from pharmacy who set it up and to more experienced nurses etc we finally got it sorted with an answer I was happy to go with, rather than have to worry all night watching the pump.  The air was drained out just in case (after a bit of confusion how to do it) the amount of air in the tube was minimum when compared to a usual line that they put in, so although it looked like quite a bit at 6cm the thickness of line was very thin and didn’t really amount to that much air that could cause a problem. So all is well now.

1502_platelets_james_0011By the time the platelets arrived it coincided with the fixing of the pump; I though I would have a short day in the hospital today, but I ended up leaving at about 2pm. I get tomorrow off from the hospital and back in again on Thursday to have more velcade and have my pump disconnected. They will also do a complete blood count to see if I need more blood or platelets. Having low platelets has caused bruising in different place over my body and I have large red spots coming out as well. James has taken a picture of my knee cap with a couple of bruises on it. We both agree that it looks a bit like a face, just missing the outline of the nose and mouth.


On another point, just to prove that James can do something else besides play on the X-Box and the computer. He has started to read a book! Yes I know unbelievable. He has been reading it in the hospital while waiting with me and at home.


Monday, 14 February 2011

Chemo Pump

Another day at the hospital, this time to have my pump fitted for the Chemo (Doxorubicin). I had to wait a while for everything to be made up, including the velcade. I had another blood test to see my levels and I have to have another transfusion of platelets tomorrow.


As can be seen in the pic, the pump is quite large. I will have to get used to it when going to sleep and it making a noise each time it pumps. They don’t often use these pumps, so they wanted to make sure that it was all set up correctly after me having it fitted and ask me to stay another 20 minutes to make sure the alarm didn’t go off. If the alarm goes off during the night I have to call them and they will come out to have a look at it. So they were pretty keen for it to work so they didn’t get called out tonight. On the way home though the alarm started to go off! so I turned around and went back into the hospital. They were a little surprised to see me, but after looking at the pump, they found that the clam was still on and stopping it flowing. Apparently it will work for a couple of pumps (about 20 mins) until it reaches the clamp and starts to bleep. I thought that I had maybe inadvertently pressed the clamp on, but it would have been quite difficult to do that. One of the senior nurses wanted to demonstrate how it works to one of the wards that I would have to call in the night as they weren’t used to the pumps and they also showed me how to reset it and stop the alarm going (if I need to again).

tablets_2I was also given my first dose of Velcade and provided with my tablets for the first cycle. 25 tablets on some days. Mainly due to the Dexamethasone only being in 2mg tablet form, so I have to take 20 of them!

I met an elderly gentleman and his daughter while on the Oncology ward. He is 85 years old and I had to laugh when the nurse said to him - ‘Are you cold’ and he replied ‘I don’t get cold’. What makes it funny is that he had a woolly hat on, a scarf and gloves. I don’t think anyone would have got cold with all the clothes he was wearing. I was in my T-Shirt it was quite warm. His daughter was chatty and me and James tried to help her with the crossword. I might have to look at the paper tomorrow to find out the answers to the ones we were stuck on. It’s a good job the ward provides newspapers for patients to read whilst waiting.

Sunday, 13 February 2011

Picc line

On Friday I had to go back into hospital as they had arranged for me to have my picc line fitted as they had a cancellation. The tablets I was supplied with on the Thursday I was told not to take as they would probably start the treatment earlier now. I was going to have the picc line fited on Monday and they had given me some Dexamethasone and a few other tablets to get me started while I waited and then start the treatment on the Thursday. Now that has all changed.

Friday I first thing I had a cannula fitted to my right wrist. They put it there as so that they could fit the picc line to my left arm and if they couldn’t get it in they could still use my right arm. With the cannula fitted I had to wait for some platelets to arrive, which they gave to me through the cannula afterwards they gave me a unit of blood. Not long after starting the blood the Nurse found out I was having my picc line fitted at about one (which in hospital time means anywhere between one and a couple of hours). She increased the flow of the blood to see if she could get it in before going into theatre, but was unable to, so I had to go into theatre with the blood attached to the cannula on my right arm. It was better to do that, otherwise they would have had to waste it and as I am a rare blood group (trust me A-Neg) they would rather get it into me if they could.

I lay on the bed and had my left arm extended on a support. The Dr (I’m not sure if she was a doctor or surgeon, but I will call her a doctor) asked me if I wanted to have some local anaesthetic or just let her do it with out. I did think about it for almost two milliseconds! If she is asking if I want it, it means it will probably hurt! – Yes please as I am a bit of a wimp when it comes to pain. The pain alone from the local was enough to make me wince. She said that sometimes that having the local anaesthetic is more painful than having the picc line fitted. Which made me relax a bit knowing that at least it wouldn’t hurt that much. You would think I should have learned by now that the nurses/doctors have probably never had these things done to them, so they are only going off what people have told them, people who probably have a much better pain threshold than me!

picc_line She waited a minute or two for the anaesthetic to work (I don’t think it ever works on me) and then sliced into my arm. It stung, but I could bear it. The type of picc line I was having was thicker than usual as I was having one with two tubes in rather than the one. They use an ultra-sound scan to check the veins to see if they are thick enough and then pass the line up through it all the way to the heart (at least that is the plan). As usual though, nothing goes to plan and it got stuck at the top of my arm and they were struggling to get it any further. By this time it was really painful and only just managing to cope without screaming out loud.  To try and get it passed the vein they cut into the top of my arm to try and manoeuvre it through, but couldn’t. They then used the ultra sound again to find a different route through and so had to pull it back out and then back through another route. I think it was this point that the other nurse was holding my shoulders down and I was again using my panting method to try and get over the pain. The nurse telling me not to move my arm – easy for them to say. Another thing I’ve learned is never believe a nurse when they say ‘Nearly done’! I think they told me that about 20 times. I could feel the blood dripping down my arm from the various holes they had put in, which was a bit surreal having the blood connected coming in on one arm and squirting out of the other. As they are nearly done they take some X-Rays to see how close they are to the heart and then adjust it accordingly.

It was finally over and I could feel them stitching it up etc. Next time I think I will take my own anaesthetic in with me in the form of a few bottles of wine, I’m sure I would feel the pain less.

Back at the ward I had to wait for the blood to run through  and as they got the first bag through quicker than normal I still had time for the second back before the end of the day; which took me up to just after 4 O’clock.

I’m back at the hospital on Monday to have my chemo pump bag fitted, start the Velcade and the Dexamethasone. That is of course providing there are no further complications.

Thursday, 10 February 2011

PAD News

Another visit to the hospital and more bad news. I was told today that the treatment that I was going to start, the velcade and dexamethasone, probably wouldn’t work and only give me a partial remission due to the fact that the Myeloma is now attacking my body very aggressively. I asked about another transplant and was told that it’s likely it wouldn’t work and could cause irreparable damage that they then wouldn’t be able to treat. The answer at the moment it to fight the myeloma the same way as it is attacking me, with more aggressively treatment to combat it. I will be starting on a PAD regime, which is made up of Bortezomid (Velcade), Doxorubicin (another Chemo) and Dexamethasone.

I will be having a picc line fitted (probably tomorrow) and the Doxorubicin is administered through a slow release pump that I will have to wear and is released slowly over 96 hours. I will also be receiving the Velcade on a Monday and Thursday, so lots of visits to the hospital. I may also need to receive more platelets or blood at times as well.

Side effects include: Sickness, Hair loss, possibly become neutropenic, low platelets and low immune system, which means no work again for a while, if at all.

Tuesday, 8 February 2011

How to pass the time in hospital

James showed me this and I thought it really funny. For those that have had to stay in hospital for any lengthy of time will appreciate it.

Monday, 7 February 2011

Start of Velcade … or not

Well I arrived at the hospital this morning at 9am expecting to receive my first injection of Velcade. I had a cannula put in my arm and blood taken and sent of to somewhere else in the building to check my levels and match for blood and platelets. I had to wait a while before the results came back so I spent a few hours just sitting and waiting and reading a magazine. At about 11am I got the results. My blood count was 7.2 (should be 14) and my platelets were 11 (should be 55) so they had dropped since my last visit again. The Doctor came around to see me and told me that he wasn’t going to start me on the Velcade today as they had done further test on the bone marrow they extracted during my biopsy and it was showing a significant percentage that was not plasma related. He explained that he wasn’t sure if the bad measurement that he was picking up in the test was paraprotein (the bad stuff I don’t want) or something else (bad that I didn’t want) so before giving me the Velcade he wanted to discuss it with one of the specialist to find out if I have something else wrong with me as well. It probably wouldn’t change the method of treating the myeloma, but he may need to start something else at the same time, depending on what it was.

From my blood results and the bruises I have on my body they decided to give me three units of blood and one unit of platelets. This took all day and didn’t finish till 5:30pm. Just before I finished the platelets Dr Lee wanted to see me again. He ran through the options available to me again and told me that he found out that the clinical trials he told me was an option last time, aren’t and option as for me to go on the trail I needed to be at least 18 after a stem cell transplant. His colleagues had told him to make sure that I was informed that the Velcade/Dexamethazone has a risk of relapse quite quickly. The other option was another transplant, but as no data was available to show if it would work or not the risk would be the same, if not worse as I could go through all the trouble of a transplant only for it to fail again. This option is still open to me at a later date though, so I’m sticking with the Velcade and Dex. If there is no significant results after a few cycles, I can try Velcade + something else that I can’t remember the name of. This would be more aggressive to the body and my hair would fall out again and I definitely wouldn’t be able to work. On the work point of view, he seemed to imply that I would be spending quite a bit of time at the hospital regardless of what treatment I go for and that working might be impractical anyway. I will approach this though when it becomes a problem.

I feel as though I have more energy already and should feel strong as the hours pass. I’m back again on Thursday for more blood and platelets and to start the Velcade (hopefully). I’m hoping that I will get some good news at some point in the treatment – so far it has only be going from bad to worse!

Saturday, 5 February 2011

More Flowers

Charito went to work this morning, so unfortunately she wasn’t in to receive the lovely flowers that one of her jobs had sent her. These are flowers that the Queens Lower School staff bought for Charito as a gift with a lovely card inside.




Friday, 4 February 2011

Charitos Friends


I haven’t done much over the last few days but rest. I’ve been out to the doctors and to get a few things such as food. Charito has been off work this week, which has been great to have her around. A few of her friends from work have dropped by to give encouragement and to drop some flowers off. Charito was upset last Wednesday when I found out that I was much worse than expected, so it was really good for her to know that friends are concerned about her as well. I know she always puts a brave face on things as we both do, but she really needs to find someone to talk to as well.

Wednesday, 2 February 2011

Amy’s Suggestion

After talking to Amy (my daughter) about my appointment today and how I have to be careful until next monday, this is what she suggested.


To wrap myself up in bubble wrap!

Velcade Starts Monday

I had my appointment at the hospital today. The usual blood test were taken, I call it a blood test; however the way my blood is at the moment I might as well call it a red sludge test. My paraprotein has climbed again and my platelets are 17. If you remember If it went below 22 I was susceptible to spontaneous bleeding!

The doctor went through all the usual things and I’m starting the Velcade on Monday. As my platelets are low I’m going to have a bag of platelets and some blood, as I said my blood at the moment isn’t working well at all and is more like sludge. With my platelets being very low he suggested I don’t do anything dangerous over the weekend like bungee jumping… and I was going to go out busking juggling my knives this weekend as well. It was a bit worrying when he said – ‘ as your platelets are 17 you should be ok till Monday’. Errrr what if I’m not ok till Monday! They are getting the platelets ready, just in case I don’t make it till Monday, e.g. I chop my finger off.

It will be all day at the hospital on Monday as it will take a while for everything to get sorted.

Oh and now that I am having my treatment again, they have renewed my car parking card – woo hoo free parking again rather than £2.40 a time, it soon mounts up.

I will have to go to the hospital on a Monday and Thursday plus other appointments, such as when I see the doctor. It will be two weeks of Velcade, then a week off, normally see the doc that week and then repeat for as many cycles as needs be.

I will also be having the Dexamethasone (steroids) that I’ve had before. Not sure what dose yet, so I may be up and down like last time. One day happy and the next day in tears.

Hopefully though I should be able to get to grips with how the treatment effects me and work around it, with the end result of it making me at least feel better for a while.