MCL and Me

The main drug regime I am on is called HyperCVAD ( pronounced hyper-see-vad). The hyper bit relates to the intensity and the fact multiple drugs are given ( hyperfractionated ) . The CVAD relates to the drugs themselves. Upto today I'd had the C for cyclophosphamide and the D for dexamethasone. This morning I was given the V for vincristine ( just 2mg in 100ml saline over 10 mins) Now I am on 55mg of doxorubicin in a whole litre of saline over 24 hours. This is the A in CVAD. How so? Well the proprietary name for the drug when this regime was first trialled was Adriamycin but it is now known by the generic name of Doxorubicin So really I am on HyperCVDD but how would you pronounce that? The good news is that when I have finished 2 days of the doxorubicin I can go home so this should be Wednesday if everything goes to plan. I had a nice nap yesterday afternoon and Mom and Dad came to see me in the evening. Last night was the usual really, about 4-5 hours solid sleep with some dozing...

My mom was asking if I was getting bored or lonely while being in hospital and it hasn't been too bad at all. Not least because there is always something going on. I kept a little diary for Friday here's how it went: 06:00 Blood pressure and temperature taken (obs) 06:45 Cyclophospamide put on drip 07:15 Drinks trolley 08:15 Breakfast and drinks trolley again 09:00 Drugs trolley (allopurinol + lansoprazole) 09:15 Bed linen changed 09:45 Newspaper trolley 10:15 Obs 10:30 Doctor's round 11:00 Cyclophosphamide drip ends and central line flushed. 12:00 Cleaners 12:15 Lunch and drinks trolley 13:30 Drugs trolley ( fluconazole + dexamethasone ) 14:00 Obs ( and visiting time ) 14:30 Drinks trolley 16:00 Visiting ends 17:30 Drinks trolley 17:45 Dinner 18:15 Obs 18:30 Visiting time ( Mom + Dad ) 19:00 Next batch of cyclophosphamide fitted 19:30 Gareth arrives 20:30 Visiting ends 21:00 Drinks trolley 22:0...

I mentioned yesterday that I had a bit of fluid retention and you may be wondering how they monitor this. Well it's a pretty basic equation measure what fluids you have taken in and what comes out. Input is a matter of keeping track of how many jugs of water and cups of tea you have drunk plus any fluids in your drip (more of which anon). To get the output figure everytime you go for a wee you have to do it in a bottle, put your name on it and leave it in the bathroom, the nurses can then weigh the bottles and convert that to a volume in litres. The bottles are actually those cardboard vases so the bathroom isn't quite 'ten green bottles hanging on the wall' My fluid balance was +3litres at midnight Saturday and this is a bit high. I mentioned my slight breathless to the doctor and he listened to my chest and checked my ankles this was all fine but he wanted to shift that fluid balance as a precaution. I was weeing well ( 4.7 litres ) the problem was I had drunk a bit t...

The drug regime is certainly picking up. Starting yesterday at 07:00 I was given 660mg of cyclophosphamide in 500ml of saline infused over three hours in my drip. Then another dose of the same at 19:00 This is a powerful cytotoxin ( literal translation cell killer ) to attack the cancer cells. This along with the dexamethasone steroids are two of the drugs to attack the cancer. The steroids are pretty impressive in how quick they work. 24 hours after 1 dose the largish lump at the side of my ear that you could feel is pea sized instead of walnut sized. To counteract the side effects of these drugs I am now taking:- Allopurinol - one tablet a day to prevent gout caused by vincristine I'll be taking shortly Lansoprazole - one tablet a day to reduce acid reflux and protect stomach because lining is damaged by the cyclophosphamide Fluconazole - two tablets a day to prevent fungal infections in the mouth while my immune system is being suppressed Chlorhexadine Gluconate - mouthwash fou...

I had a visit from Gareth, Andy and Paul in the afternoon and from Mom, Dad and Gareth in the evening yesterday. Dad had popped round to my flat to pick up a few things for me and he spoke to my downstairs neighbours to let them know what was going on. They said they thought something might be up and wished me all the best. I must drop them a note to explain the details of being in and out of hospitals or at mom and dad's now and then. I was planning to let them know in the gap between having my line fitted and coming in for my first cycle of chemo, but of course there was no gap. At about 19:15 last night my central line was connected to a pump on a drip stand to be able to give meds intravenously. I was then given 1 litre of saline to infuse over 10 hours. This just to fully hydrate me ready for the cytotoxins that will start attacking my lymphoma cells. It also gave me a chance to practise walking round with a drip stand before they connect anything expensive. There is a definit...

Just a quickie for the techno geeks amongst you. Having seen the style this bedside terminal uses to display messages I figured it was using X windows and Linux. Sure enough the system is called Medivista by a company called Lincor and it runs Linux. How apt for me. Just google for medivista and Lincor if you want to know more.

Had my first visitors last night, first Mom and Dad then Gareth. It was great to see them though overall I kept myself quite busy during the day and can chat to fellow patients. I didn't start my chemo yesterday after all. The drug i was going to have called retuximab is a new fangled mono-clonal antibody and because of the cost they need to do 'named patient' funding i.e. only apply for drug once patient is definitely ready. having been snuck on the ward as it were , the docs tried their best to rush the paperwork through but did not succeed. I wonder if some accountant wants to get it in the new budget that starts in April? The retuximab is one part of my treatment the other part is the more traditional hyperCVAD so they will start that today. the doctors don't seem too concerned about the order of the treatments. I've just had my first drug, a tablet that is a preventative to gout that could be caused by the hyperCvad. It's called allopurinol , not sure of ...

Just heard from the doctor that my heart tests from last week are all fine. The 24 hour tape did record a few extra beats but that is fine. At least I wasn't hallucinating. So chemo can proceed as planned.

Live from ward East 3a First of all apologies in advance if the spelling and punctuation on this post is worse than usual. That's because I am typing it on the Premier Bedside terminal on an on screen touch keyboard which is less than brilliant. i spent the night at mom and dad's and didn't sleep too badly. My neck is not as stiff as yesterday . It was another early start for dad to bring me to the ward and we got here for 0715. I got settled in and then one of the nurses took some bloodsamples from my central line. That all works fine and was completely painless. The blood comes out quite quick mind you. The doctors should be round about 10:30 today according to one of the veterans in my room. The internet access works pretty well so if you want drop me an email please feel free.

I went into the Planned Investigation unit at 08:00 this morning. I went down to the X Ray theatre at about 10:30 and I was back on the ward by 12:00. The process of having line in was not too bad. I had some very light sedation that just made me care a little less about what was going on. There were some odd feelings and at one point it felt like the doctor had his knee on my neck, which I'm sure he didn't. I was monitored for a few hours back on the ward and then, whilst waiting for the ok from the doctor, was told to get dressed ready to go at about 16:00. Ten minutes later I was asked to come to 'phone to talk to the doctor. I thought I was going to be discharged by 'phone and perhaps given a clinic date for next week, but instead the doctor said she had some good news for me. They had a bed for me in the Haematology Ward right now and would I like to get booked in to start my treatment. Well it was a bit of a shock but given how hard it proved to get a bed a couple...

I was at the hospital for 08:50 today and went up to the haematology ward. They had a little trouble sorting out what I needed but I was down in the diary and within a few minutes I had had my blood samples taken. Whilst I was waiting in the side ward I had chance to look at the "infamous" PatientLine terminal by the bed. This provides Radio, TV , Phone and Internet access. They have come under criticism for their charges ( particularly for people 'phone in to speak to patients ) so I was keen to see what it was like. I only had a few moments to check but you get Radio free and as long as it has Radio 4 then I'll be sorted. The Internet Access is 60p for 20 minutes but with a maximum charge of £3.60 for 24 hours so hopefully I'll be able to use that to update this blog and generally communicate with the outside world. Other details of charges can be seen here The big "gotcha" is 39p a minute off peak to ring in to a patient. It might seem odd that I we...

I handed in my heart monitor yesterday. In total I had about 10 instances of palpitations which is more than I would have said if it were not for the fact I had to record them in a diary. I was very brave when they removed the tape that held the electrodes on. I didn't even need sedation. The nurse said the tape would be analysed by the end of today and results passed on to my consultant. One more little step completed. On now to blood tests on Monday and CVC line on Tuesday.

I went to the hospital today to have my echo-cardiogram ultrasound of the heart and my 24 hour monitor fitted. The ultrasound was done first and took about 15 minutes. The probe ( with that cold jelly they use ) was run over different parts of my chest whilst my heart was also monitored electronically via three leads. At one point to get a different angle the probe was placed at the top of my belly. Despite my outward appearance being to the contrary I am not pregnant. Then I went to have my 24 hour monitor fitted. They had to shave a small patch of my chest for one of the three electrodes they attach. The recording unit is a small box about the size of my mobile 'phone ( which I'll be keeping in a different pocket to avoid any odd readings being recorded: "Mr Stanford your heart seems to be playing the Nokia ring tone...." ). I have to make a note of the time of any symptoms i.e. palpitations and what activity I was doing at the time. I have three occurrences so fa...

I had a call from my Key Worker Nurse today to say she had more exact details for having my CVC line fitted. I now have to go to a different ward on Tuesday 25th March and be there before 08:00 to have the line fitted and I'll be sent home later that day if everything goes ok. So from "out patient" to "no patient" to "day patient". I have to pop into th e old ward on Easter Monday (24th) to have some blood tests done. I'll plan to work from home on the day after the line has has been fitted whilst I get used to my new plumbing and then back to work as normal on the Thursday all being well.

In the post today were two letters with the familiar "University Hospitals" postmark. I was expecting one, that being the out-patient appointment for my 24 hour heart monitor. Given all the various 'phone calls about being admitted etc. I was guessing the other letter would just be a duplicate. The two letters were in fact both from the Cardiology department, one for my 24 hour monitor, 18th March at 12:30 and the other for my echocardiogram same day 40 minutes beforehand. I wasn't expecting the echocardiogram as I thought that was going to be done when I go in to have the central line fitted. I'm really pleased to be having both done before I go in. I'm keen to get the heart thing bottomed out as soon as possible so I know where I stand with my Chemo. Hopefully this will also mean a shorter stay in hospital as I'll only be having the one procedure done.

...........24 little hours . I went to work as planned this morning and rang the ward at 11:30 not expecting anything and they did tease me by saying nothing at the moment but ring back about 15:00. I wasn't taken in by their little game and sure enough when I rang later I was told no bed available. Meanwhile I was able to get hold of my Key Worker and since then everything has changed. I won't go into all the reasons but the new plan is:- Thursday 18th March have 24 hour heart monitor fitted as an in-patient Monday 24th March go in to have central line fitted and echo cardiogram Quite a change round but at least I don't have to keep ringing up to ask for a bed. Hopefully by Easter ( 24th March ) the bed situation will have eased. No one wants to be in hospital on a Bank Holiday but it will do for me.

It's business as usual. I've just rung the ward and there are still no beds available. The nurse I spoke to said it wasn't looking likely that they would have any discharges this week. He suggested I call my Key Worker Nurse to discuss options. I've tried her extension but it is ringing out at the moment so I'll try later this afternoon. I think I will go in to work tomorrow morning and ring the ward from there at lunch time. I can be at the hospital within about two hours from work anyway so it's not really an issue for my initial admittance.

Same story as yesterday, unfortunately. Called the hospital at 09:30 was told to ring at 11:30 and have just done that to be told no bed today. ( At least I didn't get asked to ring a third time after 13:00 ). It is rather frustrating but at least I wasn't going in for major surgery and getting all psyched up for it. The irony is I don't really need to be on the haematology ward as I'm not having treatment just cardio tests and a line fitted which is done in the x-ray department. Any bed would do but I guess the system doesn't cope with that and you can't have doctors running all over the hospital to see their patients I guess. Part three of this gripping saga tomorrow...........

Just rang the ward and they have confirmed there is no bed available for me today. I have to ring back in the morning. At least I can work from home so it's not too disruptive for me. It does mean I have to cook my own tea tonight though.

I rang the ward at 09:15 and was asked to ring back at 10:30 when the doctors had finished their rounds. I just rang again and got a different person who said there was no bed free at the moment but the doctors are doing their rounds and could I ring back after 13:00. It's a bit frustrating but there's still a chance I might get in today. What is perhaps more of an annoyance is that you get different answers from different people. Still musn't grumble the service I have had from the NHS so far has been very good. This is another post via email but with rich formatting and hopefully better line breaks.

One of the reasons I chose blogspot/blogger rather than wordpress for my blog is that you can email posts direct to your blog and sometimes this might be easier for me than using a web browser. So here is my first email blog post sent from my gmail account. It's currently 08:20 on Monday 3rd of March and I am waiting to ring the ward to see if they have a bed for me to come in to have my heart tests and my CVC fitted.