This is where I'll be updating my progress through a course of R-DHAP, BEAM, stem-cell transplant therapy and radiotherpay between October 2009 and March 2010.
Friday 28th May
Got a phone call from the gastro people yesterday, it seems that my haematology specialists have intervened to get something sorted out sooner for me. Have therefore started a course of Predisolone (steroids) for Crohn's Disease today so we shall what effect that has. Still no word whether they actually think it is Crohn's following the contradictory results (described below) but as long as the pills work I don't mind!
Friday 21st May
Saw the gastro specialist yesterday and was hoping to get some treatment but it didn't work out that way! The biopsy results from the colonoscopy show that I have Crohn's Disease. However, when I had the colonoscopy there was no sign of this hence the two lots of results contradict each other. They won't start treatment therefore because they don't trust what the results say. The specialists want to get their heads together to try and work out what's going on. In the meantime it's another 4 weeks of waiting and wondering (and dashing to the loo and stomach cramps)!
Does anyone know Dr House's phone number from Sky 1?!
Friday, 23rd April - Happy St George's Day!
Week 13 of the trots... if only St George could slay those. Got the PET scan results yesterday which were a mixed lot. The good news is that the treatment appears to have worked on the areas affected by lymphoma where there are now no signs of activity.. yippee!
The not so good news is that I have unexplained swelling in my bowel which is likely the cause of my ongoing problem. They're going to biopsy this when they do the colonoscopy (whenever that is). The specialists won't be drawn on what this might be but infection and parasites have already been ruled out in earlier tests. Can't use the "remission" word yet because of this ongoing issue so it’s more waiting. At least the lymphoma box is ticked which is great news.
Thursday, 11th March to Thursday 8th April 10
Haven't updated the blog for a while because there's nothing new to report. Am still the same as below with no solution in sight. Was called into clinic yesterday and they've decided to send me for a PET scan earlier than planned (normally it's day 100 from date of last treatment). Have also been referred to a gastro specialist and they're going to do a colonoscopy (joy of joys!).
Friday, 19th February to Wednesday, 10th March 10
The past month or so has been very testing because for that whole period of time I've had the runs, terrible stomach cramps and a most annoying cough. All of this has left me feeling really weak and quite low becase I feel that I ought to be getting better but feel terrible instead. So far, despite a short stay in hospital (3rd-5th March) and several tests there's no explanation other than it being a side effect of BEAM chemo. Tests are ongoing and I'm hoping with all my heart that they can find out what it is and put a stop to it soon.
Radiotherapy has now finished and was very straightforward. I don't appear to have had any side effects at all, not even redness of the skin thankfully. Next planned visit to clinic is Thursday, 18th March so hopefully I will know what they plan to do with me next then.
Thursday, 18th February 10
Today I was zapped with radiotherapy for the first time; not sure what I expected but there was very little to it. The only thing that tells you something is happening is the fact that the machine moves around and occassionally makes a buzzing sound.
As yet I haven't noticed any super-powers but am hopeful that some sort of beam will issue from my eyes if I become irritated... time will tell!
Wednesday, 17th February 10
Had my final set-up session on the radiotherapy machine today. Nothing too onerous, had to wear the "mask" and then they took some pictures via the machine's scanning function. Been told that the radiotherapy will be given both in-front of my left arm-pit and from behind too. Been impressed on me how important it is to keep using the aqueous cream so I shall have super soft skin for the next few weeks!
Wednesday, 10th to Tuesday 16th February 10
Not had much to report this week other than I'm feeling under the weather still, tired and no energy. The cough is still very much with me too and I get varying comments as to whether it's a hang over from mucositis or a chest infection.
Have been lucky enough to have had a blue badge awarded as well as Disability Living Allowance. It was a bit upsetting to get these as it's another sign of being unwell. Having said that, it will help an awful lot.
Tuesday, 9th February 10
Well today I spent 6 hours at hospital for a 23 minute operation. Can't really complain as I was given my own room for the day (and very commodious it was too) so could at least relax in front of the telly. The operation itself was done under local anaesthetic in an operating theatre. True to form my body had formed a very tight knit bond with the dacron collar which they insert along with the line so it took some cutting out. An hour after the procedure was completed I was able to go home with a new war wound but minus my plastic dreadlocks. Am very much looking forward to a nice shower once the wound has healed.
Saturday, 6th - Monday, 8th February 10
Thought this cough was on the wane but it came back with a vengeance over the weekend. If it hasn't cleared by the time I go to clinic next Thursday I'll be asking for some to antibiotics to get rid of it as it's doing my head in now! On Monday (8th) I had to have a blood test to try and pinpoint why I'm retainning water. It was pretty much the first test of my veins and much to my relief the nurse found one first time. Maybe things won't be so bad once I wave goodbye to my Hickman line tomorrow.
Sunday, 31st January - Friday 5th February 10
Had a week of realisations, mainly having it physically demonstrated to me just how weak and low on energy I am. It was a hard lesson to learn and quite an upsetting one when it hits home.
Learnt on Wednesday that radiotherapy will start on the 17th and happen every day for three weeks, 10 minutes each day. Had a funky mask made for the treatment; it was made from a material that looks like chicken wire but comes out of a vat of warm water and is then placed over your head and chest where it hardens to your shape. They then did a scan with the mask in place to line me up and at this point I joined the "dotty" club as they did a tattoo dot on my chest so they can line the machine up on the same spot every time.
Having my line out next Tuesday so have to go in to hospital for the day. Will be great to have showers again but I'll miss the line when the time comes to have blood taken.
Saturday, 30th January 10
I can't believe that it's a month to the day that I went into hospital for the BEAM and auto stem-cell transplant, time seems to have flown over the last four or so weeks. I guess there some comfort in that for those of you about to undergo the same thing, time passes quickly if you have something to occupy your mind. Writing this blog helped me develop a daily routine which slotted in nicely with the daily schedule in hospital. Even if you haven't got a lap-top you can do your own personal commentary in a not-book. A friend of mine did that then turned it into a book and it sold like hot-cakes ("Fighting Captain Chemo")!!
The after effects of the mucositis are a real pain at the moment. I have the most horrid phlegmy cough which just won't budge no matter what I throw at it (confirmed by the consultant as a direct result of mucositis). Am slowly growing a large collection of different types of cough medicine as I try each one to see if that shifts the horrid choking stuff. Suppose having a voice that sounds as deep as Barry White's might be nice for the ladies but the novelty is wearing off for me!
Friday, 29th January 10
The Mac advisor that came to see me about benefits today was great and seems to feel that I'm entitled to DLA but not for the means tested benefits just at the moment. Going through the DLA application form was quite depressing though as she made me think really hard about what things I can and can't do. Having never thought this through before I realised that there are lots of silly thing which I've just dismissed as minor irritations. Things like feeling dizzy, not always being stable on my feet, being rather fogetful, that little shake that's crept in when I try to put a fork to my mouth etc. Will update with whether or not the application has been successful as soon as I find out.
On a brighter note I've been asked whether I'd like to attend a Royal Garden Party at Buckingham Palace!! The invite came from the Lord Chancellor and is in connection with work I do on a Tribunal related to information rights (such as Data Protection and Freedom of Information). Am delighted and will certainly be replying in the affirmitive!
Thursday, 28th January 10
Clinic day... felt just as I did yesterday and hence duly reported this to the specialists. Apparently the phlegmy cough is a reaction to the Melphalan chemo drug and is quite common. Being very tired and breathless is also a common after effect and may last up to 3 months. The best advice is to take things easy to allow your body sufficient time to recover.
Bumped into EmmJay at clinic who's had a torrifd time bless her. She uttered some words of wisdom, the gravity of which hadn't quite clicked with me. Basically EmmJay reminded me that I've had a whole new immune system put back in me and the old one removed and that this was bound to take its toll. Although I knew what BEAM did I hadn't quite thought about it that way and when you do you realise the enormous impact which it must have on your body, hence the side effects.
Next stages for me are to have a visit to radiotherapy in the next week to get set up for treatment (just had the call actually so will be going at noon on Wednesday 3rd Feb); also in two to three weeks I'll be having my Hickman line removed. Got mixed feelings about that as no doubt there'll still be a need for my precious blood at Clinic visits but it'll have to come from my reluctant veins.
All in all things are in very good shape according to the specialists so I'm very pleased. The only thing that's troubling me slightly is the length of time for recovery but as my wise colleagues on this board tell me, you simply can't hurry that.
Got a Mac advisor coming to see me today to tell me what benefits (if any) I'm entitled to. Now that my employer has put me onto half pay things are getting a bit tight so it will take a weight off my mind if I do qualify for anything. It's not a step that I've taken lightly but at the end of the day it won't do my recovery any good if I'm sat worrying about money. I'd advise everyone in the same position to look into this too, it costs nothing and might give you peace of mind. Will let you know how it goes.
Wednesday, 27th January 10
Had a terrible phlegmy cough and was even sick with it today. No temperature but saw my GP just in case anything sinister was lurking but it would seem that this is part of the curse of Melphalan. Felt very tired and rather out of breath at the slightest exertion (prticularly stairs which I haven't used in over 4 weeks). Going to mention all of this at clinic tomorrow.
Tuesday, 26th January 10 - I'M FREE !!!
If you hadn't guessed from the heading I'm finally home after four weeks in hospital. Got away for lunchtime today. Oddly I feel really tired now I'm home but nevertheless happy to be here. The doctors were happy that my counts were going in the right direction, particularly neutrophils which had jumped up to 0.47! Am under orders to take it easy but overall they're very pleased with how I've responded so it's looking good.
Re: the kosher menu yesterday... don't bother! Yeuk!
Will reply to your comments tomorrow as am so shattered after all the excitement today.
Monday, 25th January 10 (BEAM day +18)
Had another good day yesterday though again found it frustrating to be sitting around waiting for my counts to come up. Lost another 1.6kg overnight so that's a whopping 31lbs or 2 stone 3lbs since I came in... am delighted! Personally I think it's only right that BEAM should allow me to lose weight given that I gained nearly 3 stones when having R-CHOP.
Today I have shifted my attention to the kosher menu and will be having beef lasagne for lunch. A cullinary report will follow tomorrow.
Sunday, 24th January 10 (BEAM day +17)
If Sunny & Cher were singing "I've got you babe" on the radio this could well be Groundhog Day... same story, little to report except for Leeds' lucky scrape through to a replay of their FA Cup match against Tottignam (deliberately mis-spelt!). Had to have a platelets transfusion last night because the count had dipped so am expecting a good result in that respect today.
Yet another curry has been ordered! The mutton one from last night was very nice. I'd heartily recommend that if you're in hospital for ages and getting a bit too used to the meals on offer that you ask to see the halal, kosher or Carribean menus. Shakes things up a bit don't you know.
Today's counts have just come in and whilst white cells are up to 1.11, neuts are only up to 0.35... poo!
Saturday, 23rd January 10 (BEAM day +16)
Well the saag aloo curry was fab so nice in fact that I'm having mutton curry again tonight! Well why not eh? Feeling good again today and had a decent sleep. Lost yet another kilo so am now down by 13kg (that's 26lbs in old money) since I came in, delighted about that.
Today's counts were a bit better, white cells up to 0.98 and neutrophils up to 0.34. The Prof said yesterday that when the neuts get to 0.50 I can jigger off home and perhaps that might happen as early as Monday. Here's hoping.
Friday, 22nd January 10 (BEAM day +15)
Got an awful feeling that my blog is going to turn into a dull repetitive diatribe of "feeling ok, waiting for counts to come up". Not that I want anything to go wrong or occur simply so I have something interesting to write you understand. I suppose telling you that I'm having aloo saag curry from the halal menu tonight might be moderately amusing but that probably shows you more about how desparate I am to find interesting things to say!
Counts disappointing today, white cells up to 0.88 but neutrophils stayed the same... grrrr! Have had the last IV run of itraconozole so it's back to the foul oral version later today. From what I can gather there are no more IV treatments to come so it all points to being shown the exit door... woo-hoo!
Thursday, 21st January 10 (BEAM day +14)
Not much has changed since yesterday except that my mouth is a little less sore. Still feeling ok and now wondering just how long it'll take my counts to get to where they need to be. White cells up to 0.78 and nuetraphils up to 0.25 today so things still on track... or so I'm told.
Had a brill day yesterday and was made a fuss of by all and sundry. Got an appointment with some remaining birthday cake so you'll have to excuse me...
Wednesday, 20th January 10 (BEAM day +13) Go Paul, go Paul, it's ma birthday!!
Another year older and a little bit wiser today, 44 of your Earth years... where did it all go?! Thanks to all of you who've sent me kind wishes, very much appreciated.
Feeling good again today, no pain except for a little soreness when I swallow food and not even hooked up to the drip at the moment.. what a treat. Lost over 6lbs overnight thanks to more frusimide so am well pleased with that.
Doc told me yesterday that I might even be home by this time next week if things continue to go well. Not had my counts back yet but am eager to see how they're doing... in fact they were doing well, white cells up to 0.62 and neutraphils up to 0.21.
Tuesday, 19th January 10 (BEAM day +12)
Felt better again today and my blood counts continued on the upward so it's starting to look good for recovery. The key count (or so I'm told) is the neutrophils and I need to be heading for a count of 0.50; currently mine's 0.17 up from 0.06 yesterday so it's on the way there.
Throat is still sore but nothing like it has been and I can even manage to eat meals again, though it takes me a while... Perfect timing for my birthday tomorrow when I'll be able to have cake...yummy!
Monday, 18th January 10 (BEAM day +11)
The tests from yesterday showed that my Hickman line is infected (no idea how as I haven't been anywhere or done anything to it!) and that caused the high temperature and shivers. Have been given a different course of antibiotics to combat it and this seems to have done the trick already because I've felt much better today than I have for a while. Even my mouth doesn't feel as sore and although my throat still does, I've still managed to eat something today which has to be a good sign.
Fingers crossed that this is the start of the getting well curve.
Sunday, 17th January 10 (BEAM day +10)
What a hectic day! Woke up with a terribly sore throat so was given Difflam spray to numb it to try and help me to eat. By lunchtime I started to feel really cold and by the time my visitors arrived at 2 p.m. I was shivering and shaking. This I have realised is a sure sign of a temperature and true to form when checked it had risen to 39.3!! The doctor on call was sent for and having been examined it was decided to x-ray me and do a few other tests. The x-ray machine was actually brougt to me in my room and done whilst I sat in comfort...marvellous. No results as yet from that but as my platelettes were down again I had another transfusion.
So I can truly say that I'm ready for a good night's sleep... unfortunate then that I've been given a diuretic because of fluid retention... d'oh!
Saturday, 16th January 10 (BEAM day +9)
Feeling better again today though as per yesterday my mouth is still too painful for food so fortisip it is then. A nurse very kindly relieved me of my hair this morning so naturally I'm now being misidentified as Yul Brinner, Telly Savalas, Buster Bloodvessel and all sorts of other celebreties (though thankfully not Matt Lucas).
Needed more frusimide overnight due to heavy water retention... can't get over the flood gate effect that stuff has on me! Amazing to think that you can loose for pounds in an hour simply by going to the loo!
Friday, 15th January 10 (BEAM day +8)
Seems odd reading yesterday's blog about how much better my mouth was feeling. Things gradually went down hill after I'd written that and by the end of the day I was exhausted with it all. Am finding it hard to put any food in my mouth at all let alone swallow it because of the pain it causes. Have asked the doc to boost my pain relief as that seems the most sensible approach.
My hair has now started to fall out en-masse so before very long I shall need a supply of scalp wax once again...
Thursday, 14th January 10 (BEAM day +7)
The improving trend has continued again overnight and I'm pleased to report that the bomb-bay was only needed once for a bit of Ruhr pounding. My mouth is also feeling quite a bit better and I'm putting this down to the wonders of one particular nurse who made up a mouth-wash of bicarbonate of soda. This in tandem with the aromatherpay mouth-wash concocted by the alternative therapies technician here have made a huge difference so I would highly recommend the same for anyone else undergoing BEAM at Jimmies.
Feeling a lot brighter in myself and looking forward to a day of surfing t'internet whilst gazing out at the winter wonderland which has appeared overnight once again. Think I've timed this hospital stay just right!
Wednesday, 13th January 10 (BEAM day +6)
Ah finally some light relief... overnight wasn't quite as hectic as it has been so I managed a better and more comfortable night's sleep. The pain in my mouth is intensifying however but this is countered by the morphine. Interestingly I'm able to drink cola and in combination with the morphine it's almost like having a baccardi and coke without the ice and slice! Highly recommended if you happen to be in the same position one day.
Have started on fortisip today too because eating is just getting harder and harder. Anything rather than them shove a feeding tube up my nose... yeuk!! No thanks!!
Tuesday, 12th January 10 (BEAM day +5)
Lordy, I don't know how much longer I can take this constant bout of the "trotts", it's now very trying and very painful. My mouth is far worse today too and the sores mean that it's hard to swallow drink or food. The aromatherapist did a great job though and came up with a very palettable mouthwash which took the bulk of the sting out using essential oils. My breath smells a good deal better too!
Have opted for morphine based pain relief and am glad I did because it's far better to the co-codamol I was on. Here's looking up the Eiger anyway...
Monday, 11th January 10 (BEAM day +4)
Another night of Spanish tapwater syndrome last night so not had much sleep again. Soreness really starting to develop in my mouth too though there is talk of an aromatherpaist who can do wonders for that. The mind boggles! Still I might just give it a go given how things are.
Managed to scoff some soft toast at 8 a.m. and so far all quiet on the Western Front; let's hope we have Armistice Day at long last.
Sunday, 10th January 10 (BEAM day +3)
Anybody who has seen Billy Connolly's famous sketch where he describes what happened when his son filled up a water bottle from the tap in Spain will know how I feel this morning! Needless to say a certain part of me is in tatters...
According to form it's the melphalan behind the nastiness so it remains to be seen how long it can wreak havoc. Four days since I was given it now so hopefully not long to endure. Counts on their way down now too so am starting to feel tired although naturally the nocturnal dashing doesn't help that!
Saturday, 9th January 10 (BEAM day +2) Attack of the Melphalan!
I suppose the longer the days went by after Melphalan, the more I thought I might be getting away with few side effects. Alas they started last night so no escape for me it would seem. Had a very sore throat and found it hard to swallow, then I had a nosebleed (though the blood thinning injections probably mean that this is something I'm prone to), after that my bones started to ache like crazy. If I had to pick out the worst of them it'd be the sickliness and sore gullet tract.
No pain no gain as they say... at least the weight is still coming off!
Friday, 8th January 10 (BEAM day +1)
Well the major event finally came... and went in nothing more than a gross stench of sweetcorn and a sickly sweet taste in my mouth. Admittedly I only had three bags of my own cells but blimey the smell was strong, everyone was complaining about it! It didn't take long at all to give me them, perhaps five or ten minutes per bag so it was soon over.
The whole day did leave me feeling quite tired and a bit sick but all in all again nothing major to complain about. Have started to notice a bit of a sore throat and soreness in other areas too (!!) but again, nothing that a paracetamol can't handle... for now at least. Had bad swelling to my knees just before bed time so was on diuretic last night which meant yet more "teeming and ladelling" overnight. End result... 4kg of lost fluid by the time I woke up... cracking!!
Thursday, 7th January 10 (BEAM day 0!)
So today is day zero... wonder what happens after that... do I disappear or start living again, maybe I get reborn!!
Yesterday was melphalan day (as I've already bashed on about over and over) but thankfully I seem to have ridden out the first day of that ok with no major side effects. They ran it in over a short 10 minute period so I was rather light headed and advised to lay on the bed and rest... no argument from me on that front! The remainder of the day I felt sickly and tired but overall not too bad. Had lots of diuretics over the course of the day and had to keep a fluid balance chart so the bed rest was needed to cover the energy going to the loo all the time.
Have been told that if you try to keep eating that the risk of mucositis is reduced so am doing what I can, despite not havng a great appetite, at least the menus here show which meals are low fat, healthy eating etc so that helps a lot.
This afternoon I get the stem-cell transplant, four bags worth I think. Have been alerted that it will smell like sweetcorn... gross. Confirmation or otherwise will follow tomorrow, all being well.
Wednesday, 6th January 10 (BEAM day -1)
Another fairly uneventful day yesterday chemo wise at least, no side effects to speak of other than a few minor gripes. Can't say the same for the weather! Outrageous when one has to wash one's own smalls (yes ok my smalls are not actually that "small") due to a critical breakdown in the supply chain from home... still the snow looks nice out of the window.
Today I have melphalan to come in the afternoon and everyone is telling me that it's the one to watch out for so I'm on my guard. Apparently it's a 30 minute infusion with an hour's flush each side so hopefuly once that's done I can come off the drip for a while.
The more observant amongst you might have noticed a change in the numbering of days in the sub-titles. I had it clarified this morning that the countdown starts when you have the first lot of pills, not when the chemo actually starts so today is day -1 for me. Have also been told that the stem-cell transplant will go ahead tomorrow afternoon, 24 hours after the melphalan finshes. It's all go!
Tuesday, 5th January 10 (BEAM day -2)
Well the diaretic continued its magic overnight and I got rid of half a stone in fluid altogether (by appropriate lavatorial means rather than accidental mattress absorption... just in case you were wondering). Must admit that I feel better for it as all that weight was getting me down, still plenty more to go but am assured of further frusiside doses so at least they might help me to stay on top of it a bit better.
Lots of snow here today and it's quite odd being isolated away from it looking out on the world grinding to a halt. Still this is one time that I'm not complaining as I know what side my bread's buttered on!
Now if only I could get someone to pop outside and gather some snow up for me (though not yellow snow of course) ready for the melphalan tomorrow just in case nobody has any ice lollies stocked up at this time of year... According to FenTeacher that's the best way of fending off the mouth ulcers it can cause so am keen to follow his good advice.
Monday, 4th January 10 (BEAM day -3)
Third day of cytarabine and etoposide today so nothing new to report other than an increasing feeling of sickliness. That was countered with anti-emetics so not too bad by the end of the day. Have accumulated a lot of fluid so have been given a diaretic called "frusimide" (or something resembling that anyway!). Hopefully it'll start to shift the weight that's built up, already having an effect in that am galloping to the loo every ten minutes or so.
One more day of this combination and then on to melphalan... the nasty one!
Sunday, 3rd January 10 (BEAM day -4)
Same treatment again today so not a lot to report other than starting to feel a bit more sickly so they've upped my anti-emetics. Fingers crossed that should do the trick. Seem to be retaining a fair bit of fluid even though I'm drinking plenty so that's a bit annoying, still hopefully it'll start to go once chemo finishes. Ah yes and there are steroids in this regime so that won't help much with the weight... curses!
Blood pressure has behaved itself since Saturday so that's a good thing.
Had more surprise visitors last night, Brother Ian, Gillian and boyfriend Nick came to see me as did Daughter Victoria (though I knew Victoria was coming!). All of that positiveness was certainly boosted by the great victory secured by the mighty Leeds against Manchester Utd... tis good medicine!
Saturday, 2nd January 10 (BEAM day -5)
Today's treatment (as described yesterday) went well and I suffered no side effects save for looking very flushed in the face (or ruddy as some might say!). Had the drip on all day and night so it looks like it'll stay that way for a few days in a row given that I'm due the same chemo until Thursday when it changes to something different.
Plenty of snow outside and it felt odd not to be able to feel the cold or experience it fist hand. Mind you, shouldn't complain, at least I'm in a toasty warm room!
Friday, 1st January 10 (Happy New Year!!) (BEAM day -6)
Got my first dose of chemo today. This one is called "carmustine", which I haven't had before and which takes a couple of hours to run through the drip. All went fairly well although I had a few minor reactions such as hot flushes (before you say it, yes I know that's probably more to do with my age), a bit of a sore throat and a sensation like chapped lips. Oh yes and my heart was pounding like mad!
Am now gargling with saline four times a day to fend off mouth ucers and have been prescribed some pain relieving mouth wash for when required. Nothing too onerous thus far then but the worst side effects of the other chemo treatments I've had before have snuck up on me a week or so afterwards so we'll see.
Tomorrow it's on to two 30 minute doses of cytarabine (which I've had during R-DHAP chemo) and then a 2 hour stint of etopiside which I haven't had before. This is repeated over the next four days so I hope it's not a stinker!
To top the day off I had a wonderful surprise visit from My Dad and Brother Paul. I was blown away to see them again as they have to drive up from Chesterfield to get here and had been to see me on New Year's Day too. What a shot in the arm! Have had lots of lovely texts and phone messages too so am feeling well looked after.
So on to tomorrow then... eyes down for a full house!
Thursday, 31st December 09 (BEAM day -7)
Well today should have been BEAM day -7 on the countdown to the stem-cell autograft (which is due on day 0) but alas things never go to plan with me! Pharmacy identified a problem with the batch of carmustine (the first of the four chemo types in the BEAM treatment regime) so recalled it. As a result the treatment schedule clock was stoped until tomorrow (how fitting, 1st January!)
Nevertheless is was a very pleasant day of reading, tv, t'internet and visitors!
Wednesday, 30th December 09
Well, I'm back in hospital again ready for the next stage of treatment... the BEAM autograft! Am settling into my room which is one I've never been in before... must remember to ask if they have a map of the ward so that I can play room bingo! Must have been in most of them by now.
Blood pressure is up a bit but that's probably to do with coming into hospital more than anything else. Blood tests were ok so it looks like all systems go for tomorrow when the BEAM turns its light on me... we shall see how we go.
Monday, 21st - Tuesday 29th December 09
Had a lovely Christmas forgetting about what's around the corner as much as possible. Enjoyed the usual indulgencies and having my family around me.
Saturday, 19th - Sunday, 20th December 09
Spent the weekend visiting those family members who were germ free enough to see me and had a lovely time. It was great to recharge my batteries a bit and to see the snow.
Friday, 18th December 09
Had a lung function test today which is one of the checks they do prior to having the BEAM to make sure you're up to it. This entailed sitting ina little plastic box, much like those often seen with a miserable security guard inside. WIthin the box was a bendy pipe attacked to apparatus much akin to that in Monsters Inc. If you've seen the film you'll know the bit I mean... it's a machine invneted by the bad monster (Randall) designed to suck the scream out of victims... the test wasn't too dissimlar either!
After much blowing out of more air than I had in me, holding my breath and panting like a dog (which I'm convinced the practitioner did just for a laugh) it was over and I was declared fit enough.
Last (planned) hospital visit until clinic on Tuesday 22nd Dec. Yay!
Wednesday, 16th - Thursday 17th December 09
On Wednesday, after a short morning the vascular cannular was removed by staff on the ward and I was sent on my way around lunchtime. My neck felt like it had been munched on by Nosferatu!
Tried to indulge in a little Christmas shopping on Wednesday afternoon and Thursday but was soon sweating cobs and ready to go home, pale faced and washed out. Serial shoppers... I don't know how you do it!
Tuesday, 15th December 09
Had a blood test done first thing, the specimens being rushed over to Seacroft Hospital by taxi so that they could see whether there was any point me following them. Apparently there needs to be 10 stem-cells to a given volume of blood (don't know the exact volume); my results showed 188 stem-cells so hats off to my production department which had earned some Christmas overtime!
I followed the blood via taxi to Seacroft and was hooked up to a wierd looking machine, apparently invented by an engineer who had a Daughter that needed something seperating from her blood so he designed a solution. Clever chap. The staff were great and after a brief chat to the on-site doctor we got underway. Four hours later the procedure was over and I was taxid back to St James' to await the result of the harvest.
The nurse from Seacroft phoned me at 6.30 p.m. to let me know that enough stem-cells had been collected so my presence wasn't required for the remainder of the two booked days... hurrah!
Monday, 14th December 09
My date with the vascular cannular upon me I gritted my teeth as I headed for the operating theatre. When in the prep-room some kind surgeon chap told me that it would be far better to have it put in my neck instead so my groin survived to fight another day!
The procedure was much like the Hickman line but with less pushing and pulling. All in all it wasn't too bad, although the new appendige I found myself fitted with was rather cumbersome.
Started to feel rather like Darth Vader!
Sunday, 13th December 09
By the end of today I should be admitted into my usual haematology ward at St James' Hospital in Leeds ready for the vascular cannular fitting in my groin tomorrow (eek!!). At least I get to spend the bulk of the day at home.
My plan with the pain killers gave me a decent sleep last night, thank goodness. Would recommend it to anyone going through the same side effects of GCSF.
Saturday, 12th December 09
Had a cardiac ultrasound today to see whether my ticker is fit enough for the impending treatment regime. It was a very relaxing examination, well apart from the profuse amount of cold jelly which you find yourself covered with afterwards... gross! It was odd hearing my heart beating away as the last time I can remember hearing something like this was when my as yet unborn Daughter was being subject to ultrasound (via her Mum of course!).
The outcome of the test was that I have a fine heart in good condition and better still the two pulonary embolisms have caused it no damage. So, another box ticked and another day closer to the start of the "big" treatment.
Friday, 11th December 09
My theory was right... the pains in my spine did get stronger once I started GCSF injections this morning. That's another mystery solved! Odd though that nobody has been able to explain them before, I've been having them for at least 20 years and eventually you think you're going daft when nobody can tell you why you're having them!
Armed with this new discovery I set about making sure I had a good dose of pain killers in my system. Hopefully this way the effects won't be as bad and I can also blame my inane grin on them...
Wednesday, 9th December - Thursday 10th December 09
The tanzaparin injections continue to make my tummy look like I've spilled a bottle of ink all over it... each day we try to find a clear space for the next ones but it's getting more and more difficult as each day goes by!
Started having strong pulsing pains at the base of my spine but thanks to my mate Pete Vickers I now know why! Pete has written a book covering his experiences of Hodgkin lymphoma called "Fighting Captain Chemo". It's a great book which I'd recommend to anyone given its light hearted approach. Anyway, Pete describes the same pains which follow whenever he has GCSF injections. I concluded that mine must be a result of my body recognising that it has insufficient blood cells (it's the right length of time after chemo) so it goes into overdrive to produce them along with this pain. Will be able to test the theory tomorrow when I start GCSF injections by seeing if the pain gets any stronger.
Tuesday, 8th December 09
Clinic day! Today I learned about what's to happen to me next but first I had something of an epiphany...
What with all the excitement surrounding the news that I have no active lymphoma I admit that I got somewhat carried away and didn't quite put that in context. So when it dawned on me that actually I'm beyond cure and that "no active lymphoma" actually means "remission" it was something of a rude awakenening. Don't get me wrong, it's still wonderful news knowing that the monster isn't in there spreading itself about but rather is fast asleep courtesy of R-DHAP.
Much the same happened to my poor Dad when I told him what had been said at the clinic. He was devastated and I felt terrible for not having explained it properly to him. That said though, Dad had spoken with an oncology doctor who had been around whilst I was transferred from one ward to another last Saturday. This doctor had told him that the "tumours have gone". Obviously this didn't help much because Dad took it to mean that I was cured.
It's a lesson learned.
The specialist confirmed at clinic that the full planned treatment is to go ahead with stem-cell collection happening between 15th-17th December and then the BEAM starting on the 30 December.
Am delighted to be given Christmas at home...yay!
Thursday, 3rd December - Monday 7th December 09
Yet again I've been absent for a few days, this time the culprit was a double pulmonary embolism!! I had a staging CT scan on Thursday morning where it was picked up and so was admitted on that day and not allowed home until Saturday. Unfortunately my experience in hospital this time was not a good one, which is a shame given all the excellent treatment I've had so far.
Having been forgotten by the allocated doctor at the time the embolisms were picked up and left to sit around for 5 hours I was finally admitted into an oncology ward. Things didn't get any better though! I gave them my list of pills and potions four times and although each time they wrote them down, they never materialised, nor did the promised follow up scan planned for Friday (4th). Frustrated I asked the Sister what was happening and she said that her main focus had been on getting me transferred to a haematology ward!! So there you have it, there's no room for round pegs in square holes at St James' (not as far as oncology are concerned anyway!). Once safely repatriated (for that's what it felt like) to a haematology ward late on Friday I was given a supply of the necessary tamasapin injections and sent home the next morning. All so simple. Before I left, the duty doctor gave me some great news; the CT scan shows no active lymphoma!! What a lovely Christmas present.
Spent Saturday afternoon mulling over what had happened over the past few days and wondering what the implications of this new dvelopment might be. All-sorts of things have gone through my mind, not least whether there might be an increased risk of stroke or some other horrid and as yet unsuspected nasty. Also whether they'd carry on with treatment now that there's no activity. T
On Sunday I felt better than I have in a long time and had such a lovely day with a few family members including my new found Dad. It was a wonderful day! Monday was spent recouperating after all the excitement and preparing myself for what might come up at clinic tomorrow... Somehow I reckon that it's going to be an interesting conversation with the specialist!
Friday , 27th November - Wednesday 2nd December 09
The more observant of you will have noted my absence again over the past few days. Alas I have once again been fighting with Winston's "black dog" during the nauseating writhes of a chemo infused existance. As my Facebook status read recently "Paul feels like he's between two fluffy baps shouting "dinnertime fido!"".
It's still something of a shock to note how utterly draining it can be simply to have three or four different chemicals pumped into you but the facts of it are that it leaves you feeling completely washed out and without the slightest ounce of energy. The sickly feeling too is quite overpowering which in turn means that you don't feel like eating and I don't need to explain that lack of intake means less energy for output. Still, I feel like that's passing a bit now so hopefully will feel a but more like doing things, not that I shall overdo whetever it is I feel like doing!
Once more the dreaded taste bud changes have swept over me at the most inopportune moment. This time it happens to be the season for Christmas markets when lovely things like pies (more pies!), sausage and cheeses appear. Normally I'd be filling my boots at Lincoln Christmas Market this weekend, or at the very least venturing down to Millennium Square in Leeds for a good old German Sausage or two. This year I just haven't got the heart to put myself through it because I already know how bitterly disappointed I'll be if my chops even anticipate chomping down on a blistered bratwurst or prime pork pie. Everything tastes sweet except for meat which tastes like metal!! Blimey I must have been a bad bloke in a former life (or was it this one?!).
In terms of treatment the next few weeks are a tad hectic. Tomorrow (3rd Dec) I have a CT scan at St James' Hospital, the results of which will be discussed at Clinic on the afternoon of the 11th and which will form the basis of whether I have another R-DHAP or move on to BEAM chemo. Then on the 11th Dec I start GCSF injections to boost stem-cell production prior to the harvest which is scheduled for the 16th-18th at Seacroft Hospital. In between I have to have a vascular catheter fitted in order to go through the harvest procedure and this happens on the 14th... not looking forward to that bit at all! Chemo 3, whatever that may be is due to start on the 21st Dec so we shall see whether that means a hospital stay for Christmas or whether I get a reprieve for good behaviour. On the basis that I'm being denied pies due to faulty taste buds, my money's on the former!
Thursday, 26th November 09
Hmmm must be more careful what I write on here as the Docs must have read what I said about not being in any rush to go out into the cold. They're thinking about keeping me in until after the stem-cell harvest which is due to be completed by the 18th December. As I'm due chemo 3 (whether that's R-DHAP or BEAM) on the 21st I can't see them letting me go then either. Ah well, if that's what they decide is best for me then there's no sense in complaining so I'll be a good patient and just get on with it.
The last dose of cytarabine was duly completed by midnight last night and following a short flush I was released from the dual drip once more. Managed to get a good 9 hours sleep so am well pleased with that.
Another day of on-line Christmas shopping methinks... gosh it's a hard life!!
Wenesday, 25th November 09
So, the last type of chemo is being run in as I type, it's cytarabine today which isn't quite so nasty as yesterday's stuff (cisplatine which even though it has platinum in it, doesn't leave me all sparkling and bright). Two doses in total to get through followed by an overnight flush. All being well I should be given clearance for take-off in the morning, so fingers and everything crossed.
Who knows, I might even get a bit of sleep tonight!
Not sure I'm in any rush to go outside as it seems mega windy and cold (just the sort of weather to clobber those of us with compromised immune systems!). Having said that, I'm not going to let a bit of weather put me down... now, where are my thermals?
Tuesday, 24th November 09
Ah, cisplatin day... a day of frequent visits to the loo (because you get a diaretic in a sort of surreal "bogof" offer due to the platinum which does nasty things to you if not flushed out quickly) and of feeling rather queezy. Having deluded myself that they'd hooked me up at 10.00 a.m. I was disappointed to realise that in fact that was the pre-hydration fluid hence when the cisplatin eventually went on at 3.30 p.m. a long night lay ahead of me given that it was a 12 hour infusion. Not had much sleep therefore!
However, the force of heavy Lancasters have now successfully dropped their load of cisplatin on the nasty cancer cells very expertly marked out by the Pathfinder drop of rituximab yesterday so I can ony assume that mass chaos has been caused to their plans to take over the rest of me... he he he... foiled again lymphoma (dutifully grasping something wooden nearby as I type)!
Monday, 23rd November 09
Yay! Felt fighting fit today, no sign of the cough so the antibiotics (of which I had the last one at 5.30 this morning) have done the trick (he said grasping the nearest wooden object).
Got the scramble bell for rituximab so had those lovely sounding Merlins roaring overhead dropping the marker flares on the doomed cancer cells again at last...! Alas this was accompanied by a cart load of steroids so I'll be even more Mr Blobby like by the end of the week. Curses.
Sunday, 22nd November 09
Hmmm got a bit worried yesterday afternoon and today because my chest was really bad and the slightest thing, such as perfume or slight exertion, set me off into a coughing fit. Had to call for an inhaler from home which helped a bit. Was concerned that it might be a resurgence of pneumocystis which nobbled me in January this year but thankfully the Doc said that he was sure it wasn't that.
Blimey there's always something isn't there! The antibiotics kept coming thick and fast (three injections a day) so hopefully that'll zap the nasties which are skulking around here and there.
Thursday, 19th - Saturday 21st November 09
My prediction was right and indeed chemo has been put back until Monday the 23rd. I guess it's for the best because in the meantime they've been pumping me full of antibiotoics to get me right so that I'm ready to roll when the time comes.
Temperatue has hovered just under the red-button limit of 38 until this morning (21st) when it was well down, thank goodness for that! Still got a niggly little cough but hopefully nothing sinister about that (he said thinking back to earlier in the year when under similar circumstances it turned out that I had a rare form of pneumonia called pneumocystis!).
Also during the week I developed what looked like an infected hair follicle on my tummy (for some reason this happens a lot, especially on my fingers... anyone else had that?). The doctors in their wisdom thought that it'd be a hoot to draw around the circumference with an indellible black marker pen...! I therefore now sport a lovely big black circle of around 3 inches diameter which is bright red inside with a dark red blotch in the middle, how fetching. Oh how we laughed...
Had the revised dates for the vascular catheter and stem-cell harvest and unfortunately it all kicks off on my Daughter's 19th birthday. Guess the best way of looking at it is that by missing this one I'll hopefully gain loads more so that seems like a fair swap to me, even though it'll be a hard day.
Was released from the drip machine last night so am free to roam today and don't feel quite so Darth Vader like. Having said that, all my hair is starting to fall like leaves in an Autumnal gale so there may yet be further similarities between the two of us.
Right, I'm off to play with my light saber and to show the dark side what I think of 'em...!
Wednesday, 18th November 09
Well the good news is that my love of pork pies is not tantamount to cannibalism and I'm not growing a curly tail after all. The bad news is that I'm neutropenic so treatment might still be delayed, will learn more tomorrow.
Chemo 2 might yet evade me for a few more days!
Tuesday, 17th November 09
As Black Adder would say "The path of life is strewn with cowpats from the devil's own satanic herd!"
When I got to hospital today my temperature had spiked above the magical 38 limit, my nose was running ike a tap and I'd started with a headache. As a result I'm being treated for swine flu as a precaution and my chemo is delayed by up to 48 hours. Not the start to round 2 I'd expected but needless to say I'm still here fighting, albeit growing a curly tail at the same time...oink oink!
Friday, 13th - Monday 16th November 09
Amazing the number of highs and lows which occur during this treatment. After a few decent days feeling a bit more like normal I've had another few that weren't so good. I think the steroids have been mainly to blame given that parts of me feel like they're going to burst incredible hulk style, especially my legs. I could hardly walk on Sunday!
Have also started having a terrible pain in the small of my back again which is a real show stopper. It's like a pulsing pain which stops me in my tracks and which sometimes radiates up to my neck. Would be interested to hear whether anyone else has had anything like this and what it turned out to be. Of course it may just be that I need shooting...
Am due into hospital for round 2 of treatment tomorrow (Tuesday 17th) so hopefully I can seek the wisdom of the specialists. Fingers crossed they'll have a bed for me otherwise I might just have to camp out there until they do!
Wednesday, 11th - Thursday 12th Nov 09
The past couple of days have been good and I've started to feel more like normal again, albeit that nothing still tastes right and I get tired very easily. Tried to eat an Ainsley's pork pie but it was an abomination and I felt like Apu from the Simpsons when he gets sacked by Kwiki Mart... (though I refrained from sitting on the roof and singing "who needs an Ainsley's pie, I dooooo").
Yesterday (Thursday 12th) my blood counts were back up enough for hospital to give me the green light for round 2 of R-DHAP so I have to ring for a bed on Monday (16th Nov). They're re-developing the wards at St James' Bexley Wing from this weekend so I reckon it could be a bit chaotic!
Took my wife and Daughter for a meal at a local Chinese restaurant at lunchtime (thought there'd be fewer germ ridden people around at that time...) and actually the seafood and chicken dishes tasted normal... shame I chose char-sui then! You live and learn.
Monday, 2nd - Tuesday 10th Nov 09
Wow, where did the days go since I came home from hospital?! Down a big black hole that's where... somebody pulled the plug out and I was swept away with the bath water! It seemed that I'd no sooner set foot outside hospital that the side effects of R-DHAP hit home... a bit like they say how the booze gets you once you smell the fresh air only not quite as nice.
The worst thing was the constant sickly feeling, not helped by the awful metallic taste in your mouth which taints everything with essence of iron filings. So far strawberry milk, granny smith apples, rice pudding and lucozade are the only things that taste anything like normal. Forget my favourite foods, mainly savoury in fashion, they just taste awful. My worst fear is that I'll never taste another Ainsley's pork pie again now that they're in administration... god the thought of that!
Coupled with the sickliness has been extreme tiredness, something that I never really experienced on this scale before. R-DHAP really did knock the stuffing out of me and it was hard to do silly ordinary things like stand-up, hold conversations and climb stairs.
Thankfully by yesterday (10th Nov) I started to come round a bit and feel a little more human so my trip to hospital wasn't as onerous as it might otherwise have been. My blood platelet count was low so it's not yet clear whether the next round of chemo will go ahead next week as planned; will know more on Thursday (12th Nov) when I have the platelet count re-checked.
The love and support I've had since all of this began but especially last week when I felt so poorly has been over-whelming. People on this site as well as my family and friends make more of a difference than they realise with their words of encouragement, love and wishes. Thank goodness for them!
Sunday, 1st Nov 09
It was a long night! Couldn't get back to sleep after the chemo finished at 3.30 a.m. and the flush went on. Managed to stay awake most of the day today so have had the first cytarabine and another flush. Just been hooked up to the second and final dose now (10 p.m.) so by 1 a.m. it should be finished.
Felt a bit nauseous today but think that's just because I've been so tired. Fingers crossed I might get a few hours sleep tonight, if not then at least I have my escape to look forward to tomorrow! Got to say though that the staff here at the Bexley Wing, St James' Hospital in Leeds have been fantastic so it's not them that I want to escape from!
Saturday, 31st Oct 09
Well I got it wrong, it was cisplatin today, the one containing platinum! Had to have my kidneys flushed first so have been towing the drip pumps with me and then measuring my donation for recording on a fluid balance record just to show whether I'm in good working order in that respect... thankfully I appear to be. The cisplatin then takes 12 hours to run-in so it won't finish until 3 a.m. tomorrow morning. When 9 a.m. comes around then it's the turn of cytarabine and I think that takes another 24 hours.
Reckon I've taken about 26 pills today... it's a wonder I'm not rattling. Feeling ok, if a little grotty but nothing like I expected. Think it's going to be a long night!
Friday, 30th Oct 09
More rituximab today... sending in the Pathfinders to bomb flares on those nasty cancer cells ready for the chemo bombers to go in all day tomorrow and blast them to kingdon come! Had about 20 steroid pills, more yucky anti-fungal medicine (gross!) and goodness knows how many other tablets too.
Feeling ok but not as good as earlier in the week, still can't complain, could be worse. Cytarabine here I come!
Thursday, 29th Oct 09
Back to tablets today, allowing time for rituximab to take effect. Didn't have such a good day, felt tired and a bit "icky" (it's a technical term!). More intravenous tomorrow... watch this space. Hoping for a much better day.
Wednesday, 28th Oct 09
Started the R-DHAP treatment in ernest today, with steroids, anti-biotics, anti-fungals and rituximab. Felt fine throughout the day, apart from a little queeziness mid afternoon but that soon passed.
Have been told that I might need a vascular cannula in my groin in a few weeks time so that the stem-cell harvest can happen; it's another job for the operating theatre so can't say that I'm too chuffed!
Treatment will last until Sunday (1st Nov), bring it on!
Monday, 26th - Tuesday 27th Oct 09
I did a seperate blog for the Hickman Line procedure because I thought it might help others looking for some insight into what happens. Check here for more info.
Hi Paul, I hope the steroids get you sorted out. You must be so exhausted with all of this going on.
My mum has been suffering from continuous diarrhoea for 5 months now. A colonoscopy came back clear so they have sent off a blood test for coeliac disease, although the GP doesn't think this is what she is suffering from. They have prescribed her Immodium in the meantime.
Hope you have a good weekend and are feeling better soon.
Take care. Christine xx
hi paul....i sure hope they soon sort things out ..i think id have wacked on of the docs by now as they sure seem to be taking time to work everything out and get you sorted...
i allways hope your as good as can be...hope your wife n family are ok...
yup im looking foward going to elland road next season...come on city....i got to watch citys last 5 home games.....and mary went to 3 games..she had never been to a footy game in her life and she was suprised to say the least how she quite enjoyed the games..even jumping up when city scored...
things are fine for me and i soooo hope they will be for you real soon ...
il have to look up crohns paul as iv not heard of it before..id never heard of non hodgkins lymphoma either...
you ever get to the coast make sure you give me a shout on here paul...
all the best to you n your family..
Sorry I dont have Greg House,s Number. But by chance do you happen to have 13,s number.
Take care and be safe.Sarsfield.
Hope they decide what's going on soon. I have a friend with Crohn's and he manages to control the condition now without meds. His worst thing to eat is mushrooms, just so you know what to avoid if it is Crohn's.
Hope you enjoy the bank holiday as well. Val X
thanks so much for your kind messages, lovely to hear from you. I had wondered whether it was time for a new blog but then thought as this is all connected it ought to stay as one... it is a long scroll though! Not sure I fancy anotrher stem cell transplant Adam but it's interesting to learn of the connection even if my specialist team have never come across such a connection before.
Hope you all have a great bank holiday.
All the best,
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