MCL and Me

Just settled in on ward East 3a. Different room this time. Room 5, bed 6. Just two beds in this room so only one other inmate. Seems a nice chap. We've done usual 'What you in for?' conversation. He's got myeloma and he's recently had chemo and then his own stem cells given back to him. He's now in the two or three week recovery phase before he can go home.

I've just had a call from the Ward East 3a so say they have a bed for me and could I come in this afternoon. I explained about not having my line in yet and the nurse said they could sort all that once I was in and in fact it would be easier to get done once I was admitted as an inmate. So I'm off to pack and Dad will take me in about 12:30

I called my keyworker today today to see where we are with getting a new line fitted. Unfortunately she has had to go off site this afternoon and she doesn't work Wednesdays. The nurse I spoke to said she would check with the doctors she thought would be dealing with this and get back to me. To her credit, 30 minutes later, I got the call back. The nurse said she had spoken to the doctors, they did not know anything about it but my keyworker might have organised it another way so it was best to wait until Thursday. You would think they would have some kind of booking system they could look things up in. I don't mind the delay if it is because the theatres or wards are busy, I'm more concerned that the process to get me booked hasn't actually started and this week has been wasted. So I guess Thursday it is. Rather frustrating but not a great deal I can do at the moment.

I rang my keyworker today to see about when I will be having a new line fitted and my next round of Chemo. It's been almost week since I saw my consultant. She said she would ring me back after 12:00 today as she was on her ward round. She hasn't rung back as of 17:15. I'll call her tomorrow after 12:00 so she won't be on rounds and I will see where the delay is. I'm just a little concerned about starting to lose momentum here. Every week's delay is another week on the length of an already lengthy process. If there are delays due to getting either a bed or a theatre booked I might look at having the Rituximab done on the day unit through a regular canula in the back of my hand. There was also the possibility of having a PICC line fitted instead of Hickman line. This is a line inserted via a vein in the arm. It's a bit more restrictive than a Hickman line but if there are going to be long delays then this is something I might consider having do ne. I'll ...

I last shaved my face and head on Tuesday ( before seeing my consultant). When I looked in the mirror today I could see a little bit of stubble on my face in a couple of areas and just a light ( mostly grey ) fuzz on a couple of places at the sides of my head. After five days normally I'd have a fairly good stubble on my face. I could have got away with not shaving at all but I decided I would do all over shave. Shaving my head is a rather nice sensation as it happens. It seems odd that I do still have have some hair growing but really, really slowly. I visited my friend Andy today and it was nice to get out of the house to somewhere different. For the last month it's most been my flat, Mom and Dad's or the hospital with occasional flits to Tesco's in the dead of night (well 21:00 on a Saturday). Tomorrow I'll chase my keyworker and see where we are with getting a new line fitted and getting on with the next round of chemo.

I've had a lazy morning after staying up late last night tinkering on my PC after upgrading to the latest version of Kubuntu . On the subject of relaxing, now that my counts are back to normal I can afford to relax a little on my general anti-infection regime. I still need to be careful. If I was to catch a bug or a cold now it would probably delay my next round of chemo until I had got over it. What would be worse would be getting something that has an incubation period and not being aware of it that could then flare up in the midst of chemo or whilst my counts were dropping again. Still Gareth is up from Portsmouth so he was able to visit and stop over on Wednesday night and tomorrow the plan is to visit Andy and see his new iMac and the new internal doors he has had fitted in his house. Now I've promised myself I'll finish doing the ironing before any more tinkering

......saves being poked about by nurses. After being logged on to work this morning I went to the clinic in the afternoon to have my dressing changed and the wound examined where my line used to be. The nurse I saw said removing stitches was one of her favourite jobs (says a lot perhaps ;o) but I said I didn't think there was a stitch in there as I didn't recall one being done after the line was removed. (Though as I couldn't look down easily whilst it was being removed I couldn't say for sure). The nurse said "well there should have been one". However on removing the dressing it just showed a nice clean dry scab and no sign of a stitch. She had a gentle feel and decided that there wasn't a stitch in there after all, which surprised her somewhat. She put another dressing on but said the wound is pretty much healed so I can just take this one off whenever I want. To be on the safe side I'll leave this one on for a couple of days and then maybe switch to...

I had a letter from the hospital, from the Bone Marrow Transplant co-ordinator in fact, inviting me for a series of tests on the 5th June. This is basically an MOT to check I'm doing ok and will be healthy enough to have the donor stem cell transfusion, well more specifically be healthy enough to have the conditioning treatment before the transfusion. So on the 5th June I'll have a lung function test, a ECG and echocardiogram and a GFR Kidney Test. The heart and kidney tests I've had done recently and they were fine so hopefully they'll be no problem. I've not had a lung function test but assume it involved some huffing and puffing. As someone who has never even tried a cigarette hopefully this will be fine too. It'll be a long day with much toing and froing between departments but my long suffering, never complaining Dad will be there to keep me company.

No clinic for bloods today so a full day working from home. I'll prolly go on Friday to have my dressing change on the hole where my line was. One of the things my consultant discussed with me was the plan for the next couple of months and the options for my stem cell transplant. Quite soon I'll be going in for the second half of my chemo treatment. I'm guessing the recovery period will be similar so it will be about two or three weeks after the chemo that my counts will have recovered for the next cycle. So by the end of May I will have completed one cycle of HyperCVAD, the A part and the B part. The plan is then to do another complete cycle so that would be cycle 2 parts A and B completed by end of July. At that point I'll have a CT scan and we will review the progress. The plan is for me to be well in remission by this point so I can then go for the donor stem cell transplant. For the transplant I will have what is known as a conditioning therapy. The purpose of this...

I saw my consultant this morning and we went over the current situation and what happens next. Unlike in Zimbabwe my counts have been completed and the results released. My blood counts have now returned to normal but they did get pretty low. My overall white cell count went to 0.2 when the normal range is between 4 and 10. ( This is between 4 and 10 billion cells per litre of blood and I was down to 0.2 billion or 200 million [ this is an American Billion i.e. a 1000 million ] ) My neutrophil count actually went down to zero. These are the cells that deal with bacteria so that might explain why I got bacteria in my line. Apart from the bugs in the line I've not had any problems while I have been neutropenic so this is re-assuring that the various precautions about food, hand washing avoiding crowds etc. have been effective. The other good news is that NICE have approved my Rituximab therapy. This a drug that latches on to the cancerous mantle cells and triggers an immune response ...

I slept ok but my chest is a little sore this morning. The doctor said this might be the case as she had been "poking around in it." Which I take to be a medical term. I went to the clinic this morning and had bloods taken the old fashioned way with a needle in the arm. My old faithful vein on the edge of my left arm came out of retirement without complaint. Tomorrow I go to see my consultant ( or one of her team ) to discuss the next steps. Aside from a song by the Searchers , I also have needles and pins, or pins and needles if you prefer in the tips of my fingers. This peripheral neuropathy is one of the side effects of the vincristine. It's not too bad , they tingle and feel a little bit "raw". They should go back to normal a few months after the last dose of vincristine.

Well this has been an interesting day. I'm now back home at Mom and Dad's for the night and will hopefully return to my flat tomorrow. I went on the the ward and they removed my line under a local anaesthetic. It wasn't painful but it did feel a bit weird. It turns out that the particular bug that I have is my line is what is known as a gram-negative bacteria. They don't know the exact type but being gram-negative is enough to know how to treat it. The teicoplanin injections and flucloxacilin tablets are only good against gram-positive bacteria so that is why my blood cultures were still showing bugs. Interestingly I wasn't showing any infection markers in my blood from the bacteria and had no symptoms like fever. The bugs were just sitting there minding their own business. However that is unusual for that type and the doctors doesn't didn't want to take the risk of a real infection flaring up, which I completely agree with. It is because I didn't hav...

I was just opening the gate to my garage this morning when my mobile rang and it was the sister on the ward. I thought she was going to say either to come later or that the bugs were clear from the results and not to come in. Sadly not, quite the opposite in fact. The latest cultures show a bug and the docs have decided I have to have my line taken out. So I'll be admitted on the ward and be staying in while the line is taken out. It's a bit of a blow but it is not uncommon. When I was having my line fitted the woman coming out of theatre was on her third. Hopefully they'll be able to fit me with another line at some point; whether that is straight away or in a few days I don't know at this point. Now I have to go pack.

I went up to ward East 3a to get my teicoplanin injection and they put me in the bed opposite where I was when I was having chemo. Well not in the bed but in the chair at the side whilst they sorted out my injection. It took a while because the doctor has not written up my prescription but they got it sorted in about an hour. It was nice to see the nurses again and they remembered me and asked me how I was getting on. It seemed a little quieter on the ward than before and there was only one actual inmate in Room 6, in my old bed. So maybe when I come to be admitted for my next round of chemo in a couple of weeks I won't have trouble getting in. Back to the ward tomorrow for another injection into my line then clinic for bloods as normal on Monday.

Not leaves , bugs. I went to the clinic this morning and they had the results of the blood cultures they took on Wednesday. The lab have confirmed I have a bug, some type of bacteria. The doctor prescribed another antibiotic injection of teicoplanin and the nurse took more blood for cultures to see how things are progressing. I'm feeling fine and don't have a temperature so they are not too concerned. I have to keep taking the course of flucloxacillin tablets and go to the ward I was on before on Saturday and Sunday to have another teicoplanin injection each day. ( The day unit where I normally go isn't open on weekends ) It's hard not to initially feel like I have not looked after my line and the wound site properly but I asked the nurse about the cause of the infection and she said when you are nutropenic ( low blood counts ) the normal flora that live on your skin can get in to your line or the wound site and it is almost impossible to stop it happening. The good th...

As they say in greyhound racing circles. Well my plans to have a grade 2 cut and keep my hair loss under control for a couple of weeks didn't quite work out. Firstly my moustache and beard started to fall out really badly so I shaved them off yesterday morning and then when I checked the back of my head the hair loss had accelerated and it was beginning to look a bit like badger's arse. So last night I took the clippers and the razor to it and now have the full Kojak. My eyebrows seem to be hanging on well so far. I quite like it though I think I'll need to do a bit of shopping here

I started to feel much better from yesterday evening onwards and this morning I felt as right as rain again. It was a long day at the clinic today, firstly they were quite busy so I got there for 10:00 but didn't get seen until 11:00. The doctor took a look at my line and the wound site which is still red ( though not as sore as it was ) and he decided I should have some antibiotics both injected in my line and to take orally for a week. This is just a precaution in case there are bugs in it, he also asked for blood cultures to be taken to check for anything specific. As he said sometimes people just have some irritation at the site but we'll treat it like an infection until we get results to the contrary just to be on the safe side. This meant it was another hour wait for the pharmacy to prepare my take home meds. I took this opportunity to have lunch in the Cellar Restaurant. I left the hospital just after 13:00 I don't mind the waiting around as I always have a book and ...

I started to feel a bit "off" late yesterday afternoon and despite and early night I still felt quite rough when I first woke about 06:30 this morning. I have a headache behind my eyes and feel quite tired and generally "under the weather". My temperature and blood pressure are fine so it's nothing too serious. Paracetamol are helping with the head. I've decided to take it very easy today and not log in to work. I was able to snooze until about 09:00 and I'm feeling better now though still quite tired. Hopefully a restful day will set me back up ok.

I went to the clinic this morning for bloods and also my central line got a full MOT. The bio-ends were changed and a new dressing was put on. Also as it is looking a little red and feeling a little sore the nurse took a swab to be developed in the lab to check if there are any bugs in it. Hopefully not. I also got a consultant appointment for Tuesday 22nd April to discuss progress and my next admission to hospital. In theory this is week commencing 28th April. Back to the clinic on Wednesday for more bloods. So far the doctor has said my counts are "not too bad". I'm sure that's a specific med Publish Post ical term.

..........not quite gone tomorrow but certainly on its way. Over the last couple of days I've noticed my hair is getting thinner and it is quite easy to pull small tufts out. Now there's wasn't that much on my head to start with but by keeping it cut short I think it'll look ok for another couple of weeks maybe. The first sign of proper bald patches and it will be out with the clippers and razor. I had my usual grade 2 done over at my Mom and Dad's today and the results are shown below. In theory I could lose all my hair including eyebrows, chest, arms, legs etcetera but so far that's all ok , including the hair on my etcera ;o)

I slept ok and the bone aches are too bad this morning. I had some paracetamol at about 07:00 and haven't had to have any since then. There's nothing medical going on this weekend (I'm pleased to say) and in theory I'll just be ticking along to the clinic every Monday , Wednesday and Friday for blood tests. I've gotten into the habit of posting a blog entry every day and I think this is a useful routine to have so, even when there isn't much going on, I'll find something to write about just so people can see I'm still about. Last night I cooked a most delicious Sag Aloo spinach and potato curry using a kit from http://kitchenguru.co.uk The company is run by a relative of a guy I work with and the kits are really great. They have all the spices you need for a particular meal in the right proportions and simple recipe card. You can order them online or get from places like Waitrose. This morning I have been doing geeky things with my computer keyboard and...

When I woke up this morning my back was a little sore and I thought maybe I had slept awkwardly but as I started to move around I realised it was a bit more than that. I actually had quite a bit of pain in my bones particularly round my hips and pelvis and bit in my sternum. The worst part was the pulsing pain I got round my lower back. I recognised the pain as being very similar to when I was having GCSF to stimulate my bone marrow stem cells to allow them to be harvested. Clearly the chemo is having an effect on things. Walking across from the car park to the clinic I was shuffling like a little old man. I had my blood tests and explained about the pains and it is "just one of those things". I can take paracetamol for it and if it is still bad on Monday they can try prescribing some stronger pain killers. ( Aspirin and Ibuprofen are off the agenda ). I've taken some paracetamol and it has settled down a bit. I coped ok with it when I was having the stem cell harvest so...

Whilst I'm out of hospital I have to keep taking the anti-fungal, anti-gout, anti-acid reflux tablets and the anti-bacterial mouthwash. The hospital gave me seven days supply and sent details to my GP so I can get the rest on prescription. So that is four items at £7.10 per item. A month's supply is normally what is issued to make it £28.40 a month. To reduce the cost of this I have applied for a three month pre-paid subscription from the NHS website ( you can also do it over the 'phone or fill in a form and post it). The cost for 3 months is £27.85 so that is a "saving" of £57.35 over the three months. The NHS, free at the point of delivery. Now in Wales prescriptions are free but then I probably would have to be travelling much further to get the excellent care I get from University Hospital Birmingham Queen Elizabeth so it is swings and roundabouts as they say. I slept ok last night. Woke about 02:30 and didn't get off again until 03:15 but then slept thr...

Slept well and went to clinic this morning. Had bloods taken and a chat with the doctor. My white cell count is down just a little according to the tests on Monday but they are expecting it to drop more steadily over the next few days then pick back up. I'll go for tests every Monday, Wednesday and Friday at the clinic. They will let my counts recover and then leave me for a week before looking at the next admission to hospital for part B of this cycle of Chemo so that would be w/c 28th April or there abouts. Meanwhile here is a pic of me and Ivy with the two pumps on running drugs into me when I was in hospital. Sorry I'm looking a bit serious in the pic, no reason why I should be.

First night back in the flat for two weeks and it was nice to have a double bed to sleep in. Slept well and feel ready to try a day logged on to work. Last of the steroids today. Blood tests tomorrow at the clinic.

I slept much better last night and then went to the clinic to have my blood samples taken to test my cell count and also my blood sugar ( something that steroids can affect). The blood sugar was fine and the cell count will be reviewed by the docs tomorrow when the results are back. This will be the pattern from now on; at the clinic every Monday, Wednesday and Friday to have blood tests and see what my count is doing. Anything urgent they'll call me but other than that no news is good news. So I've moved back home to my flat after staying with Mom and Dad since I got out of hospital last Wednesday and this afternoon I logged on to work and did a few hours. I was able to clear out my email, only 2600 messages waiting but most were automated alerts I could just delete It felt good to be productive again and I was able to help resolve a problem on a server so I am feeling useful. Tomorrow I will log on to work in the morning with the aim of doing a full day and see how things go.

I'm on my second day of steroids or 'roids as we druggies say. The dexamthasone tablets are powerful drugs and the lump by my ear has already reduced even more. Down from a the size of walnut to a pea on my last dose and now down from that to a lentil this time round. As you can see from the information at cancer backup 'roids are not without their side effects and I have been having periods of mood elevation or a little 'high' which is actually quite pleasant. However last night I struggled to drop off to sleep at 23:00 and didn't do so until close on midnight. That is very unusual for me as usually I am off in 10 or 15 minutes. I had a few things running through my mind but it wasn't racing like it sometimes does when I am stressing over something. I just didn't feel that I could drop off even though I did feel sleepy. I then woke about 02:30 and felt like I could get up and start my day. I put the radio on and listened to BBC 7 from 03:00 to 04:30 th...

As my blood counts drop and I become neutropenic I become more prone to infection. If my counts go very low then I'll be admitted to hospital so they can keep and eye on me and possibly keep me in semi-isolation. However I should be able to be at large in the community with counts lowered to a point. To be able to do this I have to follow a few guidelines and have a "clean diet". Firstly I have to take my temperature twice a day and if it gets near 38 I have to 'phone the ward even if I feel fine. This could be the start of an infection. Then I have to avoid people who have colds or tummy bugs, ensure visitors wash their hands etc. and avoid crowded public places like shops, cinemas and offices. The "clean diet" sheet has general advice about eating food within date and kitchen hygiene etc. but also prohibits several types of foods to avoid exposure to bacteria and other microbes including:- Salad vegetables Fruit that can't be peeled Soft cheeses Soft I...

Today I went back to the hospital for a GFR kidney function test and a dose of chemo (vincristine). It has been a day of toing and froing. I had an appointment at the department of Nuclear Medicine for 10:15 where they inject me with a radioactive isotope and then monitor its levels in my blood over the next few hours. The kidneys should filter the isotope out so by measuring what was left in my blood each time they can assess how well the kidneys are doing. I didn't get that injection until 11:00 and had to be back at 13:00 for my first blood sample. I then went up to the Haematology Day Unit to have my Chemo. They were really busy so it didn't happen in time before I had to go back for the first blood sample for the GFR. After this Dad and I went and had some lunch and then went back for my 14:00 GFR blood sample. Once the 14:00 sample was taken I went back to the day unit and had my chemo through my central line. The vincristine is only in 100ml of saline so doesn't take...

Dad picked me up at about 14:00 yesterday and I spent the night at Mom and Dad's. It was great to get out in the fresh air but it did feel a bit strange walking up to the car park and feeling the breeze on my face, it's surprising how quickly you become habituated to things. Mind you I have stopped checking where the line to a non-existant drip stand is when I stand up now. I slept much better overnight and that seems to have helped my tiredness today. My energy levels are still a fair bit less than 100% but I'm better than I was. I think I shall keep up the institution of an afternoon nap. My stomach is feeling a little delicate and my mouth has a nasty taste in it but I've not got any real nausea at the moment. Tomorrow I go to the clinic for a check , have some kidney function tests and another dose of Chemotherapy. The expectation is that my blood counts should start to drop after the weekend and then it will be a case of monitoring them regularly. I may need blood ...

I saw the doc this morning and I have been given the ok to go home. :o) I have to come in to the day unit on Friday for another dose of chemo ( vincristine I think ) and also have some kidney function tests in the dept. of nuclear medicine. I'll be monitored in the clinic every couple of days there after while they expect my white cell count to drop and at home I 'll have the various antifungal, antigout meds etc to take each day. This is the next stage I need to get used to, being at home and not getting too paranoid about seeing microbes everywhere. In a week or two I'll be back in for phase two with some different drugs. I was feeling really tired this morning but it is amazing what the prospect of going home can do :o) Just waiting to get my tablets and other info sorted.

I had an ok night, a bit restless and I got an air block in my pump about midnight that took a couple of mins to clear ( with attendant beeping alarms from Ivy - the nickname I have given my drip stand and pumps). I'm still pretty tired but two naps yesterday helped and I expect that will be the way of things for a while. I'm just waiting for the last couple of hundred mils of doxorubicin to be pumped in and then all being well I should be released today. So come on Ivy, pump, pump like the wind!

Apart from a little tiredness and fluid retention up to now I've not had any bad side effects from the chemo. However it looks like these two new drugs the doxorubicin and vincristine may have a little sting in the tail for this final part of this stay in hospital. ( Plus delayed effects of the other drugs is quite possible) . I've been feeling much more tired and had a two hour nap yesterday afternoon. My fluid balance has sorted itself out naturally but that meant I was up 4 times in the night to pee so that hasn't helped the tiredness today. Still so far so good the whole chemo has gone very well.