T + 45 A Bit of A Funny Turn

Posted by raetsel at Friday, October 31, 2008

Has it really been four days since I posted a blog entry? Sorry about that, though I do have a good excuse for yesterday, more of which anon.

On Wednesday I went to the transplant clinic. It was fairly routine but my neutrophils had dropped from 1.1 to 0.8 and 1.0 is seen as a cut off value. So the doctor prescribed some GCSF injections to help boost my counts. Only two injections one Thursday and one Saturday so hopefully the bone pain I often get with GCSF shouldn't bee too bad.

It's perfectly normal for my neutrophils to fluctuate a bit, one of the drugs I take, septrin, depresses the count anyway and it's possible my body is just fighting a bit of an infection. Overall the doctor said my progress was fine and we had to remember this was only day 43 post transplant.

My haemoglobin was 9.6 and the cut off area for a transfusion is around 10.0 so the doc said he would need to keep an eye on that.

Well yesterday I had a bit of a funny turn. I was in the bathroom washing my hands after having gone to the loo and I start to feel feint, my heart rate went up, I felt like I was going to throw up and I came out in a cold sweat.

I had to sit down with a bowl in front of me for five or ten minutes until things settled down a bit. I had a few dry retches but wasn't actually sick however that did start to make me feel a bit better. The best way I can describe it is how you can feel when you have really exerted yourself at a sport and get that sick feeling ( not that I have done that for a long, long time).

I did my temperature ( normal ) and my blood pressure which was a little lower , 112/77 but not massively so. My pulse was 99 which was a bit high.

From then on it was like someone had flicked a switch and turned off all my energy. I felt really tired and simple tasks like putting my socks on got me really out of breath. I had a couple of naps during the day and just spent the rest of the time like a pink floppy sandbag on the sofa letting the TV wash over me.

Today I feel quite a bit better. I have a bit of a headache and my energy levels are not what that have been but more bearable than yesterday.

I'm not sure what caused my funny turn. Maybe I stood up a bit too quick and my blood pressure went wonky. It was 20 minutes after I had given myself my GCSF injection but I've never had a reaction like that before.

I think my haemoglobin may have dropped some more as I have that kind of tiredness now and maybe that is the main cause of the problem.

I'm at the day unit for regular blood tests on Monday so we will see what they show. I'll be taking it very easy over the weekend that's for sure.

All this has been a timely if unwelcome reminder that I'm still in the early days of a long process of recovery and I can't take for granted feeling fit and healthy every day.

T + 41 And Another Thing.........

Posted by raetsel at Monday, October 27, 2008

I went to the day unit today to have my blood tests done as usual then had lunch at Mom and Dad's whilst trying to fix his wireless router that is apparently no longer wireless. (Amazon are shipping a replacement out now. )

I've been thinking a bit more about this blog and the sort of stuff I put in it, particularly as at the moment things are ticking along very well and there is not too much to report on the medical front.

Therefore now and again I thought I might crave your indulgence and use this space to mention a few other things that I'd like to share with you that are not directly related to the lymphoma.

I'll try not to make this too much of a soap box or a "you know what really winds me up" sort of a grumpy old man page. ( Though I'm sure I'll feel the need to have the odd moan that I just can't keep to myself. As Stephen Fry recently said in one of his podgrams this is akin to Midas' Barber [ scroll right down to the last story on that link about Midas and Apollo] )

I'll always cover the medical stuff first and then have a separate sub-heading for the "op ed" piece so you know when to stop reading if you only want to know the lymphoma stuff.

And so......

Nuclear Insurance

I've had my Smart Car, Arthur ( for he is only 'alf a car ), for just under three years now and the extended warranty I took out at the time will expire in November. Therefore I contacted Mercedes Benz to see about extending the warranty. It took a couple of reminders but they eventually sent out the details for renewing the warranty for one year.

The cost for one year is £369 which to my mind is far from cheap. Reading through the list of exclusions I decided it didn't represent value for money and I am not going to extend the warranty. I will instead put my £369 into a fund for repairs should they arise.

One of the exclusions however did give me pause for thought:-

Loss or damage caused by the following:
  • Ionising radiation or radio active (sic) contamination from any nucelar fuel or the nuclear waste arising from burning nuclear fuel.
  • The radioactive, toxic, explosive or other dangerous properties of any explosive nuclear equipment or nuclear part of the equipment.
You just have to wonder what set of circumstances led the Mercedes Benz legal team to feel it necessary state this exclusion.

If Arthur were to be damaged by a nuclear explosion I doubt getting him repaired would be that high on my list of priorities. I suspect my own health might come first ( Hmm I wonder if BUPA cover me for nuclear damage? I bet not ).

Mind you maybe I should look at lining the garage with lead to be on the safe side.











T + 39 And Another Little Pill

Posted by raetsel at Saturday, October 25, 2008

I had a call late on Thursday from the main BMT doctor saying that my ciclosporin levels were a bit low so I have increased my doses from 150mg in the morning and 175mg in the evening to be 175mg for both. A small adjustment so I shouldn't notice any real difference.

Yesterday I cooked a very nice shepherds pie with lamb mince and we have some left over for tonight's supper.

If I tell you that today started with sausage baps for breakfast in bed at 10:30 then it gives you an idea of the sort of lazy day I have planned. Mind you I did get the washing and most of the ironing done yesterday.

T + 37 Another Little Pill

Posted by raetsel at Thursday, October 23, 2008

I went to the transplant clinic on my own yesterday and on the whole everything is going well, my haemoglobin is holding around 10.4 and my platelets have recovered to normal limits. My neutrophils are staying around 1.2 but one of the drugs I take, the anibiotic septrin, is known to suppress them. My white cells are around 2.1 and again the ciclosporin is responsible in part for keeping these values low.

The doctor has been checking my blood pressure each week and noting it was a little high, I also took along my own readings that I have been doing during the week. This increase is almost definitely caused by the ciclosporin I am taking so he decided to start me on a low dose (5mg) of a blood pressure drug called Amlodepine . I had some of this when I was in hospital and it was fine. It's known to work well with reducing blood pressure rises caused by ciclosporin.

There is one main possible side effect which is swollen ankles caused by fluid retention. Unfortunately this doesn't respond to diuretics so if this becomes a problen they will have to look at an alternative. Hopefully this won't be a problem for me but if I start to develop cankles then we'll have to take another look.

I was hoping to come off one of my drugs, acciclovir the anti-viral drug, as my leaflet said I would only be on that for 35 days after transplant, however the doc said that although I could come off it if I wanted there is some evidence to suggest that it helps protect against getting shingles .

Since I don't have any side effects from taking acciclovir I've decided to stay on it for the time being.

T + 35 On My Soap Box

Posted by raetsel at Tuesday, October 21, 2008

As things are ticking along ok so far on the whole lymphoma front perhaps you will indulge me a little whilst I get on my soap box a moment.

My friend Andy sent me a link about the Atheist Bus Campaign which, as explained here, aims to raise money to advertise an atheist/humanist slogan on some London buses to counter the religious advertising from things like the Alpha Course.

The slogan they are going with is “There’s probably no God. Now stop worrying and enjoy your life.” Now to my taste that is a little weak and I would prefer "There is almost definitely no God" even so I think this is a worthwhile cause.

You can help support the campaign by donating at JustGiving and read more about the campaign on the BBC News site, here

Two more quick plugs, check out this excellent book by Richard Dawkins, "The God Delusion" and check out RichardDawkins.net as a whole for thought provoking articles and videos.

Thank you for your time. ;o)

T + 34 Grab Yourself a Bargain

Posted by raetsel at Monday, October 20, 2008

Well the traffic was a little sticky but I drove to the hospital for my bloods today with Dad in tow. It was all fine and I was back at Mom and Dad's having a cup of coffee by 11:15

Since then I've been back at the flat doing some work in the despatch department of Gareths' CD Emporium. He's selling off some of his old CDs at Amazon. Check out Gareth's CDs to find a bargain, most are only 50p or a pound plus P&P.

Printing the postage and packing half a dozen CDs or so in jiffy bags each day is just a nice little activity for me and it means I get a walk to the postbox as well.

Wednesday is the transplant clinic and the plan is I'll go on my own this time.

T + 33 Domestic Weekend

Posted by raetsel at Sunday, October 19, 2008

Nothing much to report this weekend really, just a nice relaxing time at the flat, though the washing is all done and most of the ironing too. The food shopping is also done courtesy of Tesco.com due for delivery on Monday evening.

I'm off to Mom and Dad's for an evening meal rather than the usual Sunday Lunch.

Tomorrow I'm at the day unit for bloods in the morning.

T + 31 Activity Day

Posted by raetsel at Friday, October 17, 2008

Well I never got a call from the hospital about my ciclosporin levels yesterday or to confirm when I need to go to the day unit for bloods so I booked myself in for Monday bloods and later spoke to one of the haematology nurses to find out what was happening.

I didn't get a call about ciclosporin levels yesterday because my level had come back up to the right point based on my Wednesday blood test, (whereas it was a bit low from last Monday ). So it is steady as she goes and see if I am fluctuating still on Monday.

Aside from that today has been a bit of an activity day. I drove Arthur for the first time in about six weeks. Popped over to Mom and Dad's for a coffee and a chat ( and to scrounge an onion for tonight's spaghetti bolognaise ). The plan is that on Monday I'll drive and pick Dad up as we go to the day unit. This is a trial run before I go on my own so if for some reason I don't feel up to driving back Dad will be there to take over. Hopefully though it won't be a problem.

I've also been doing a little light exercise on the Wii Fit The balance games and yoga poses are just the right level of exercise for me at the moment and maybe I'll build up to the more aerobic exercises over time. I certainly enjoy doing yoga again. I used to do it quite regularly on my own and got quite flexible, it would be good to get back to that level again.

For great spoof trailer for the Wii Fit check out this You Tube Video

T + 29 So Far So Good

Posted by raetsel at Wednesday, October 15, 2008

Dad took me to the transplant clinic today and I saw the consultant in relatively quick time, only 30 minutes past my allotted time of 10:00

The consultant said that things were going along fine and my counts were where they should be. My haemoglobin has gone up to 10.4 thanks to the transfusion on Monday. He said the ciclosporin levels in my blood were a bit low so I will probably get a call tomorrow to increase the dose.

He also said we should be able to cut my hospital visits down to twice a week, Wednesday for the clinic and then either Monday or Friday for blood tests in the day unit but not both.

T + 28 Shake, Rattle and Roll

Posted by raetsel at Tuesday, October 14, 2008

Well the blood certainly seems to have helped out my energy levels. I managed to iron all the shirts last night finished off the other stuff this morning. I've also been for a walk up the hill to the post box by the post office without feeling too tired at all, whereas before the transfusion just getting upstairs into the flat was enough to tire me out.



I thought I'd say a little something about the medication I'm taking at the moment. Here's a pic ( click to embiggen if you really want to look at the pills in depth).


From top to bottom they are:-

  • Magnesium Oxide x 2 , three times a day to counteract magnesium loss caused by ciclosporin
  • Penicillin x 1 , twice a day to protect against bacterial infection
  • Co-trimoxazole ( aka Septrin) x 1 twice a day Monday, Wednesday and Friday only, another prophylactic antibiotic
  • Acciclovir x 1 four times a day to prevent viral infections, especially the cold sore virus
  • Ciclosporin 150mg Morning, 175mg Evening the anti-rejection drug to prevent Graft Versus Host Disease
Most of these I'll only be on for three to six months or so but the penicillin is something I will be on for life. A small price to pay really.

On top of this I use my celluvisc eye drops three or four times a day to help my dry eye syndrome and of course have to drink three litres of fluids a day to protect my kidneys from the ciclosporin.

I have a very handy multi-slot pill box labelled with the days of the week and the four times slots of morning, lunch, evening and night. I only fill this up one or two days in advance though so as to keep the tablets fresh.

It's transplant clinic tomorrow.

T + 27 Topped Up

Posted by raetsel at Monday, October 13, 2008

I'm just back from the day unit having had two units of red blood cells. I've now had 12 units in total since April of this year. ( You have considered becoming a blood donor, haven't you? ;o)

I'm still type O+ at the moment, the switch over to my donor's blood group ( A+ ) usually happens some time around 120 days after the transplant. Mind you since O+ is the universal donor, it wouldn't do any harm to have O+ when I do switch to A+

I'm back at the flat now just taking it easy, though I might see if the new red cells mean I can iron more than one and a half shirts at a time.

Next appointment is the transplant clinic on Wednesday.

T + 26 Plumber's Mate

Posted by raetsel at Monday, October 13, 2008

Just a quick note. Sunday was mostly taken up with a plumbing emergency after the flush on the loo broke so it wouldn't lift the bung to let the water out. Gareth stepped into the breach and fitted a complete new float based cistern set which he got from B & Q.

I'm typing this on Monday morning ( T + 27 ) so now I am off to the day unit for my two units of blood. I'll let you know how I get on later.

T + 25 Hair We Go Again

Posted by raetsel at Saturday, October 11, 2008

Oops forgot to do a blog entry for yesterday. Well it wasn't that exciting ( unlike all my other posts :o) Dad took me to the day unit to have my bloods taken including a cross-match for my blood transfusion on Monday.

I asked if I could take regular antacid and trapped wind remedies as I tend to suffer a bit with that in the evenings. They said yes over the counter stuff was fine so between Dad and Gareth I now have selection of Gavascon, Remagel, Tums etc. to see what helps.

After the day unit I had lunch at Mom and Dad's and then came back to the flat and just did a bit of pottering about , reading and napping.

I had a lie in this morning until 10:00 and then we had a visit from Andy about 11:00

Oh the other thing I meant to mention was that my hair has fallen out again. It started whilst I was in hospital and on the last Friday I was in hospital Dad brought my clippers in and trimmed it all off. Since then I have had a wet shave and got rid of the last of the patchy fuzz. I still have my eyebrows and eyelashes at the moment and hopefully in about four ot five weeks my hair should start to grow back.

The rest of the day is generally planned to be very lazy, well for me at least, Gareth is planning a cleaning spree, apparently.

T + 23 Steady as She Goes

Posted by raetsel at Thursday, October 09, 2008

I've had a quiet day at home today. I tried to do a bit of ironing but after one and half shirts I was defeated so I settled back on the sofa to read some more of the rather fun Oscar Wilde and The Candlelight Murders, which is a victorian murder mystery with Oscar Wilde as the detective.

I did manage a walk to the post box at the end of the road, a round trip of a hundred yards I would think, to post a couple of letters and it was nice to get a bit of fresh air in the Autumn sunshine.

I had a little nap in the afternoon for half an hour or so before Dad came to pick me up to go to Mom and Dad's for tea as Gareth was going to his Mom's tonight and won't be back until 22:00. I could have driven myself to Mom and Dad's but they have both said that for the first week or two they would rather Dad did the chauffeuring.

I'm at the day unit tomorrow for regular blood tests plus a cross match for my probable transfusion on Monday.

T + 22 Transplant Clinic

Posted by raetsel at Wednesday, October 08, 2008

Today was my first transplant clinic, something that will become a regular weekly Wednesday visit.

Dad took me up as I am still not feeling up to driving, especially in the morning when I have my morning crash for an hour or so.

We got there for 10:30 and were seen by about 11:30. I'd had blood taken and they are able to get reasonably accurate instant results right there. The consultant checked how I was doing and had a general chat about how I had been since I had come out.

He went over my counts, which were as follows ( figures in brackets are the normal ranges expected in a healthy person )

White Blood Cells 2.1 ( 4 - 11 )
Neutrophils 1.2 ( 2 - 7.5 )
Haemoglobin 8.6 ( 13 - 18 )
Platelents 126 ( 150 - 440 )

He said the neutrophil and white cells are just about where he would expect them to be at this stage, my platelets are ahead of the game and by haemoglobin is low, making me officially anaemic. This is quite common as red blood cells are the most sluggish to recover after a transplant.

The doctor arranged for me to have a blood cross match when I go to the day unit on Friday so that I can have a blood transfusion of two units of red cells on Monday as an outpatient.

The anaemia will go some way to explaining the tiredness. Mind you when I was discharged on Monday my haemoglobin was 10.6 and the cut off for a transfusion is 10.

One of the things that could effect the value is the amount of fluid I am taking in which will to some extent dilute reading in the blood. So we will see what my reading is on Friday and whether I need to proceed with the transfusion on Monday, but my guess is that I will.

After seeing the doc the nurse sorted me out a sick note, took off the dressing and removed the stitches from where I had my line removed last week.

I was all done by about 12:15 and back at Mom and Dad's having lunch about 13:00

T + 21 Full Day Home

Posted by raetsel at Tuesday, October 07, 2008

It was great to sleep in my own bed. I got up about 08:30 and had a shower and then had to have a rest because of my customary morning "crash". My blood pressure drops and I feel really, really tired so I just have to rest for a while.

I watched a couple of shows I had recorded whilst I was in hospital and then Mom and Dad came over for lunch and stayed for a couple of hours. In the afternoon I managed to iron three and half shirts before I felt tired again.

I also prepared the potatoes and veg for tonight's dinner. Gareth cooked Ikea Meat Balls and the mild curry sauce with potatoes, carrots and broccoli. It was very tasty, especially the veg which I always miss when in hospital.

I also ploughed my way through the requisite three, yes three, litres of fluids. This is to protect my kidneys from the effects of the ciclosporin.

In the morning in my first transplant clinic at the hospital. Dad is going to take me as I'm not feeling up to driving in the mornings.

T + 20 Home Run!

Posted by raetsel at Monday, October 06, 2008

The doctors came round this morning and gave me the all clear to go home. As you can imagine I was delighted and just a little bit surprised as I thought I'd be in another day.

I had to have some magnesium in a 500 ml saline drip and then Dad came and collected me and I was back at Mom and Dad's by about 14:45 .

Gareth had booked the day off work in anticipation of this being the date four weeks after my admission which worked out perfectly. He came over to Mom and Dad's for about 16:00 having been to Ikea for more things for the flat and to stock the fridge and freezer with food. I got back to the flat just after 17:00

Gareth has been working hard on decorating the flat over the last four weeks in what little spare time he has had and it looks really great.

For my tea I had a small portion of gnocci with a tomato sauce it was nice to have something with some texture and flavour. I'm still taking it easy with food but my appetite is returning.

I'll probably post more about my whole hospital experience over the next few days.

It's great to be back.

T + 19 Improving (PG)

Posted by raetsel at Sunday, October 05, 2008

I had an improving day yesterday, the diarrhoea continues to improve and last night my temperature didn't go above 37.4 which hardly counts as a temperature at all.

One of the down sides to having my line out is not having easy access for blood tests or antibiotic injections so there was a bit of stabbing yesterday as my veins are quite poor because of one of the chemo drugs I had a while back which causes them to constrict.

The nurses managed to get blood out after about 4 attempts and late last night the doctor put a canula in the back of my right hand so I can have my antibiotic injection. It's not the most convenient place for a canula but with a tubigrip bandage over it it's not too bad.

I'm going through quite a tired spell now. After I had a shower this morning it sort of came over me in a wave, the way it does sometimes. I shall just have to take it easy.

T + 18 Watchful Waiting (PG)

Posted by raetsel at Saturday, October 04, 2008

Well yesterday I had hardly any diarrhoea and when the doctor came back to see me about 17:00 she said it was unusual for a GVHD induced diarrhoea to clear up so quickly so it was a bit of a mystery as to what it was.

She put me back on a normal solid food diet and switched me back to tablets of ciclosporin instead of the drip.

I had a good night's sleep and feel quite good this morning, the diarrhoea has come back a little and I'm still getting a temperature overnight. The weekend doctor said they might want to scan my chest again in case I have picked up a fungal infection since the last one.

Not sure what all this means in terms of a release date except that it won't be before Monday and I suspect a little later in the week.

T + 17 Lights, Camera, Action! (PG)

Posted by raetsel at Friday, October 03, 2008

Yesterday the doctor explained the plan of action to deal with my diarrhoea. Firstly I was put on a clear fluid diet, i.e. water ( or black tea or coffee but I'm off hot drinks at the moment ) no food at all.

Secondly because inflammation of the gut can reduce it's efficiency at taking up ciclosporin I was switched back to having it in a drip twice a day. This meant having a canula fitted in my arm as I no longer have a Hickman line.

Saving the best until last the doc said she would arrange a bowel biopsy to confirm or not the diagnosis of graft versus host disease (GVHD). This involves having a camera with swiss army knife style attachments inserted up my bum to take some tissue samples.

When this will be is not certain but as soon as possible.

I didn't have any diarrhoea yesterday at all and only a little bit this morning which the doctor was pleased about and might mean things are settling down. Today I am allowed bread and soup to see if that sets anything off.

I still had a bit of a temperature over night at 37.7 . Although my blood cultures haven't come back yet to say if I have a bug my general blood tests do not show any infection markers. This is another indicator towards graft versus host disease as that can cause fevers on its own.

I'd say the balance of probabilities is that it is GVHD and will need a few days steroid treatment before I can go home, but you never know.

Sorry there is so much talk about diarrhoea in the blog of late, but at least you only have to read about it and not live it. :o)

T + 16 Not Going Home Just Yet (PG)

Posted by raetsel at Thursday, October 02, 2008

A bit of a set back yesterday as around 17:30 the diarrhoea came back and it kept me up every couple of hours throughout the night. My stool samples came back negative however so it's not a bug causing it.

There are a two basic possibilities causing the problem now, either it is the effects of the chemo or it is the start of Graft Versus Host Disease (GVHD) where the donor immune cells are attacking my own body. It would be quite early to have signs of GVHD but not unheard of. GVHD is usually treated with steroids. (yum).

I had two lo-peramide ( immodium ) tablets in with my usual meds so this should help stop the diarrhoea in the short term.

Another slight complication is that I had a temperature this morning so blood cultures have been sent off as a precaution. I'm pretty sure it was just a blip caused by sleeping with too many bed clothes but we'll see what the results are.

I'm waiting to see the doctor to find out what the plan of action is. I'm pretty certain I won't be going home today and I suspect it may be the weekend at the earliest.

I have to say I was feeling pretty down about all this first thing this morning especially as I had come so close to getting out, but I'm trying to be positive about it and my slightly raised energy levels are helping me combat the low feelings. I have been moping about a bit the last 2 or 3 days without even wanting the radio on because of my low energy levels so today I am going to try to get a bit more stimulation. I did manage a walk up and down the corridor yesterday and will try the same today.

T + 15 Just One More Thing (PG)

Posted by raetsel at Wednesday, October 01, 2008

Having my line out sorted my temperature problems as expected. Yesterday I was mostly just really really tired but today my energy levels are up a bit hence being able to do this blog entry.

The only issue now is that I have started to get diarrhoea again , it came on yesterday afternoon and got worse during early hours of this morning. It's settled down now so far today.

A sample has been sent off and it all depends on what the results of that show. It could show a bug in which case I need an appropriate antibiotic and I've been started on Metronidazole already as a precaution. If the sample is clear and I don't have any more bad episodes I should be able to go home tomorrow.

The pharmacist has been to see me to talk through all the different drugs I'll be taking for the next couple of months. I'll go through all that another time.

Finally thanks to Andy for updating the blog for me yesterday.