Peter’s Hospital Diary

And it has been a busy couple of days too!

I went up to the day unit at Guy’s yesterday, as planned (lovely to see Orla and her team in the day unit again) and discussed the cunning plan with Rob (SPR). As all the best plans remain flexible, we decided to test this, and so I was admitted to Samaritan ward that afternoon to start the chemo regime with the Rituximab. However I had a treat first as Kim, the Dimbleby Cancer Care Aromatherapist, was on the ward – my feet felt wonderful!

I seem to be well known on the ward, and the first person I saw was Sister Nicky who is the (and I’m sorry if I get this title wrong!) the Deputy Ward Sister, working with another old friend, Liz, who is the Ward Sister. I have to say that Nicky is a bundle of super-efficient energy – she is everywhere – always in the right place at the right time, and never stops! Watching the banter with Liz, you can tell they are a great team – and you can tell just by being on the ward that it buzzes! They enforce high standards from everyone, and it is a joy to watch them at work! (And woe betide a Junior House Officer who steps out of line!) All the other ‘old hands’ from my transplant were there, including Debbie, Tom, Mick, Adam and Paul and it was good to see them too! And a special thank you to Rachel, the dietician, who stopped by to discuss my weight loss! (And had some practical help that didn’t involve a naso-gastric tube!)

Rituximab administration can cause a mild allergic reaction when it is first given, and although I have had it before, and it was well tolerated, this is the first time I have had it with the new immune system, so the team wanted to be cautious – and just as well because half way through the administration I started to feel a little ‘woozy’ and we had to slow the infusion down again.

The plan was to try and get the rest of the chemo in that evening, before I was given ‘night leave’ but we ran out of time, so I got home at about 10pm last night, and then set off again this morning for the rest of the drugs.

This went very smoothly, administered by Myra, and it was all all done and dusted by 11am. then it was time to wish Rob and Melissa (you remember Melissa – The delightful American SHO working over here) Happy Christmas and depart. There was just time to have a chat with Viki, the haematology Specialist Nurse before I left – which always perks me up, then it was off to get the train home! My next visit will be on the 28th, which is when I should be at my neutropenic nadir, and after that, probably one more cycle of R-CHOP before another PET scan, and (we hope) a re-start of the donor lymphocytes. Rob gave me a summary letter to take to a local hospital should I feel unwell during the Christmas period. It makes stark reading when the last seven years are reduced to the bare clinical facts, but it did make me realise just what a lot of treatment I have had!

The weekend was busy in other ways too. You may recall that Vicki (eldest daughter) is expecting a baby in about 6 weeks. Well, on Sunday she felt some contractions, and was taken to hospital for observation. She has been given some drugs to stop them, as the baby would be a little premature, but she was kept in for a couple of days. This rather put paid to a quiet weekend though and threw plans out of the window – which brings me to my next topic (which doesn’t affect all of you) – Christmas cards!

Those of you for whom I have an up-to-date address on the Christmas card list should have had your cards posted by now – because this was Christmas card week-end. (Yes, I know, it was a bit late, but there has been a lot going on!) Most of them have been posted, but some have not, so I have posted the 2006 Christmas letter under pages. I will try and E mail those of you who would have got a card some time this week. Sorry!

And on a final note, we did get a Christmas tree for the conservatory – and here it is!

Onwards and Upwards!

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With all the news about my treatment plan yesterday, I rather forgot to mention any other bits of news! The main one was that middle daughter Katie has returned home from her first term at University, so we are back to having a near houseful again. Life will not be dull, although I see she has wasted no time in going back to her old job on a temporary basis to earn some sheckels for the next term. She will be home for a month and it is good to have her here (and her lodger, Indie)

We also started getting into the Christmas mood by putting up the tree and decorating it. We did think about putting it in the conservatory, but we found it was just a bit too big, so in a fit of Christmas spirit we will probaly get another, smaller tree to go in there. We did think about decorating the Lemon tree (might be a lemon ready for a Christmas G&T) but it (the tree) isn’t quite big enough!

Finally, just to carry on the botanical theme, the Vincristine chemo agent I will be given next week, is derived from the periwinkle (vinca) family of plants – but I don’t think I will be making my own!

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Well, I didn’t have to wait until next Thursday for the results, as yesterday afternoon (just before six, I was most impressed, having bunked off for the weekend about 3 hours earlier) I had a call from Rob, the SPR, to say that they had had the preliminary results through from the PET team.

You might think that this would be bad news, and you would be right – and wrong!

First the good news. There was no sign of the lymphoma in my neck where I had the radiotherapy, so it is definitely radio-sensitive, however the bad news is that the nodes in my chest and abdomen are larger, and really confirming what we suspected, that the disease is more aggressive and is advancing quicker than the Graft v Lymphoma effect can hit it. These are difficult areas to treat with radiotherapy as the risk of damage to other organs is much higher, especially as I have had total body irradiation in the past. There also appears to be some fluid on my lung and in my abdomen. As it happens I have had a chesty cough for a couple of weeks, which I had put down to a bug, but if the lymph system isn’t draining my lungs as efficiently as it might, then that would explain it – and also the breathlessness I have been suffering from.

However – we have a plan! It involves chemotherapy, and is intended to get the lymphoma back under control before we continue with the donor lymphocytes. I have had a fair bit of chemo in the past, but more aggressive lymphomas and leukaemias are more susceptible to chemo (because the cells are dividing quicker). The problem is that we know we have also bred in resistance to some drugs. Anyway, the regime I am having is called R-CHOP, Rituximab, Vincristine, Doxorubicin,Cyclophosphamide and Prednisolone. I have had some of these before (but I don’t think Vincristine or Doxorubicin although I may have had some of the same family) but not in this combination. The other bit of good news is that in my extensive drug collection, I did find some prednisolone, so I was able to start that this morning.

So on Monday I am off to Guy’s to have blood and other tests, (mainly kidney function) and then all being well, I will have the rest of the regime all day Tuesday. It will be a long day! There is a risk of adverse side effects with Rituximab, although I have had it twice before without any problems, but then I do have a new immune system now. That will be given first. Then back home for Christmas, with, I hope, the lymphoma reeling a bit! It looks as if I will lose my hair – again! Oh well, it will grow back!

I don’t know if I will have more courses before we restart the DLI. I guess that depends on the result, but it will be a safe bet that I will be seeing my friends in the PET centre again! Talking of which, I will say that while the Oromorph only helped a little with pain control during the PET scan, I did have a remarkably good sleep that night!

Finally, and much to my surprise, I discovered that there is a link from a blog in “The New Statesman” to this blog (and John’s ‘Disabled Rants’). The link to The New Statesman page is here and also included in the sidebar. If you click on the link, I am in the blogroll. I shall watch watch my future web stats with interest!

O&U!

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As I reported yesterday, I rang St Thomas’s to see about my appointment – to discover that it had been scheduled for this afternoon! I had a long chat with Sally – one of the lovely radiologists on the PET unit – about the pain problem when I am lying down, and the thoughts were that I could have a strong pain killer, or if that didn’t work, I could have diazepam (Valium) which would also work, but leave me feeling woozy – but in either event, they recommended that I should be accompanied so they were free to use whatever method was appropriate.

So this morning, and feeling hungry (I was supposed to fast from 8am, but in practice it was from last night) we set off for London for the 2:15 appointment. Once again greeted like a long lost friend, and after chats with Margaret, the unit manager, I went into the prep room for the tracer injection and to discuss the pain relief. The option chosen was Oromorph – an oral morphine preparation, which was planned for about an hour before the scan. (The tracer needs to be given 90 minutes beforehand).

So time ticked by, and eventually I had 10mg of the Oromorph, but probably less than an hour beforehand, then into the scanner room to lie on the bench. The team were lovely and had arranged to reduce the scan times by concentrating on the bits of interest, but even so the scan was scheduled for 20 minutes. Alas, I had only been lying down for about 3 or 4 minutes when the deep, dull, throbbing ache started just below my left shoulder blade.

Again the team were wonderful, and came to talk to me to take my mind off it, put on some music, and gave me a countdown. They did offer to stop the scan for a break, but having started, it seemed a pity to stop the sequence, so with a bit of gritted teeth and some careful pressure relief, I got through the 20 minutes. My concern was that I might have wriggled too much and impaired the quality of the scan, but I was assured that technically it was good. I say technically, because there was no medical opinion given, although I did look at the scans and I thought I could see a couple of hotspots (not surprising) but then I am not an expert, so my interpretation isn’t worth much. All I could tell was that it didn’t look as if I was lighting up like a Christmas tree!

I did feel pretty weak on the way up – the result of the fasting, and my blood sugar was pretty low (4.7mmol/l – where the normal range is 4-8mmol/l) but I had a bite to eat on the way home and felt quite perky by the time we got back.

So a slightly out-of-the-ordinary scan, but the team were great (as usual) and put up with me being a wuss without complaint!

My next appointment is next Thursday when I should get the results – from a tutored and knowledgeable eye, so until then, Onwards and Upwards!

Tags: Diving, PET Scans

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And with that in mind, I thought I would bring a little festive decoration to the blog! I hope you like it.

There is some other good news too – yesterday was the earliest sunset of the year, and from today, the evenings start getting lighter! Yes it is true! Although the shortest day is December 22nd, the combination of the elliptical orbit of the earth round the sun and the 23 1/2 degree tilt of the earth’s plane of rotation with the orbital plane mean that earliest sunset and latest sunrise do not coincide on the shortest day. However the bad news is that although the evenings start getting lighter, the mornings continue to get darker at a faster rate until around the shortest day. Sunrise contines to be later until the end of December when sunrise starts getting earlier again.

A similar effect occurs in June at the longest day, but because the earth is further from the sun, the effect is less pronounced and latest sunset/earliest sunrise are much closer to the longest day.

Education lesson over for the day! I am still waiting to hear when the PET scan will be, and I suspect I may need sedation or a strong pain killer so I can lie in the machine. I am still suffering from various aches and pains, and sleeping sitting upright doesn’t make for a good night’s sleep. I think I have caught a bit of a cold too – there have been a couple of nasty bugs going round, but I hope I can shake that off by Christmas.

No visible signs of the GvHd yet, but it is still a bit early, but there are some more donor lymphocytes waiting, if required!

So onwards and upwards!

(Just heard – the PET scan is tomorrow, and we a looking at ways of overcoming the pain problem)

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This was the view that greeted me this morning, although during the day the weather has got progressively wetter! In fact it was equally frosty yesterday so we decided to have the first open fire (in the fireplace!) of the season.

My parents were visiting this weekend, so I had some assisitance with the remainder of the ‘little plumbing job’ that I started last weekend, the final bit of installation of the power shower in the main bathroom. All went well. and it is now fitted and working. There is another little modification I need to do later (replace one of the push fit joints with a solder fitting) but that isn’t urgent.

However the highlight of the weekend was the Christmas Dance at work, when we took Katie and Rachael along for the first time – and stunning they looked too. And just so you can all share the moment, here is a photo! We all had an excellent evening!

Not much to report health-wise. I still get sundry aches and pains – mainly when I am lying down, which makes sleeping tricky – in fact I have been sleeping sitting up in bed. I’m not sure how I will get on with the PET scan, because that entails lying down – and still – for about 30 minutes, and the aches start getting pretty painful after about 5 minutes – still, we’ll cross that bridge when we come to it! I should get notification of the appointment early this week, as the intention is to do it soon.

So that is it so far – onwards and upwards!

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Indeed it was – but you might be asking why I was up at Guy’s this morning when the next scheduled visit was to be next week! Bear with me and I will tell you!

It has been a busy week one way and another. Last Saturday I was doing a bit of preparatory plumbing prior to converting a bathroom shower into a power shower. Not a difficult job (replacing a 15mm pipe with a 22mm plastic pipe) but by the time the airing cupboard is emptied etc etc, it took most of the day!

On Sunday I was away at a diving conference which was a good opportunity to meet up with some old dive buddies and catch up on the latest news, doctrine and see some presentations on some of the expeds that have taken place in the last 12 months. The place we were staying at was very nice – except for the mattress which must have been one of the most uncomfortable I have ever slept on! I came back from that on Tuesday, which brings me to my visit to Guy’s.

I have been feeling a bit ‘off colour’ for about a week now, nothing definite, but strange aches and pains, partcularly when lying down, and serious enough to stop me getting comfortable when sleeping. There have also been strange numbness round my lips and nose which comes and goes, and to just add to the picture, I thought I had developed a hernia after my last hospital stay.

So after another sleepless night on Tuesday, I rang up Guy’s, had a chat with Viki (specialist nurse) and Rob (specialist registrar who I have mentioned before) and asked them what they thought – and not surprisingly they suggested I came and visited them as they felt that tele-medicine is not sufficiently advanced for a telephone diagnosis! They were also concerned that I might be getting shingles which would need treatment.

Of course it would be on the morning after a very stormy night! The trains from my local station weren’t running (flooding) and the local traffic was awful. Eventually I ended up at Winchester after an hour of driving – it normally takes 20 minutes!

However, I arrived reasonably early and after the customary blood letting, I saw Rob. The good news is that he couldn’t detect any swellings – a good result as it shows that the lymphoma is still radio-sensitive. However he couldn’t explain the strange aches or the sore tongue or numbness, except that it could be a hint of GvHd. At least it isn’t shingles!

We did have a bit of a discussion, and while it is likely to be another 3 weeks or so before GvHd is likely to be seen, there is still a risk that the lymphoma could be advancing faster than the GvHd, and the biopsy did show that it has become more aggressive.

So I will be going for another PET scan sometime next week (number 18!) so that we can see exactly what is going on.

We had a long chat, and I discovered that my case had been discussed at a meeting of The European Bone Marrow Transplant Group and the general consensus is that promoting GVHd – with the wanted Graft v Lymphoma effect still offers the best chance for long term remission. Mantle cell lymphoma is very rare, but a recent study from Nottingham showed a 75% success rate in achieving a long term, durable remission in patients with relapsed mantle cell lymphoma following a mini-MUD. Unfortunately the sample was only 4 patients! So the plan remains to continue with another dose of donor lymphocytes. Although these are normally given at 3 month intervals, the PET scan should give better information and indicate whether it might be better to adjust the timings, and bring the next one forward.

So next week I will be off for another scan, and the week after I should get the results! And the hernia? Yes, I have got a small para-umbilical hernia, probably along a line of relative weakness where my splenectomy scar lies. It will probably need surgery to repair, but the team would be reluctant to send me for surgery until the lymphoma is under control – surgery now would just add another complication to the lymphoma treatment plan.

It was good to see Liz (one of the specialist transplant nurses) who confirmed that they all have fingers crossed for me too!

I got home relatively early, but feeling a lot happier – knowing that the plan is on track!

This has been a long post, but but I can’t finish without saying that it was also good to see Sarah (Like2like) fresh from her transplant (only 31/2 weeks on the ward) and looking very well!

So very much Onwards and Upwards!

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And here we are on a very grey Friday morning on the first of December!

I have been doing a bit of tinkering with the blog software and I have added a calendar to the sidebar – highlighted dates indicate that there has been a post. The other addition is a ‘Seasonal’ category for links, which was sparked off by some advice from Richard on choosing Christmas trees! I hope you find them useful too!

There may be other seasonal changes to the blog in the next couple of weeks! Watch this space!

O&U!

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This is the first Thursday for some weeks that I haven’t been up to London for a haematology clinic! It makes a refreshing change! However it does mean that there isn’t a lot to talk about healthwise. My gut is settling down, slowly, and my appetite is better than it was, although eating is without much enjoyment because although my sense of taste is showing signs of returning, the senses are all distorted and some things have no flavour at all! Most odd! Perhaps the worst aspect is how things smell – although sense of smell is there, most things still have that ‘hospital food’ smell, that is off-putting anyway (partly by association) and so that doesn’t help matters. Still, one step at a time!

Not much sign of the GvHd yet, although it is only a couple of weeks since the infusion, and it will take about 6 weeks before anything happens. I do have patches of dry skin, so I’m not sure if that is a hint of it!

On the domestic front, the heating in the conservatory has proved its worth (well, until I get the electricity bill!) and we have used the room a lot – we think we will put the Christmas tree in there – being cooler than the rest of the house, it might not drop its needles so readily – but another couple of weeks or so before we think about that! Must get the Christmas cards done first. By the way, if any of you have yet to buy Christmas Cards, can I recommend the Leukaemia CARE range? Details on 0870 774 3667 (a proportion of the national rate charge goes to the charity) and have a look at their new website here.

So (wait for it… 🙂 ) Onwards and Upwards!

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I have just had a busy but fun weekend with Leukaemia care, the charity I do voluntary work with. You may recall that the charity has been developing some training courses and I am one of the trainers delivering the courses. We have got them about 98% complete now, and this weekend some of my fellow trainers and I were giving the course modules to the charity’s staff.

This was the first time I have met up with my fellow trainers (Neil, Suzanne, Mike and Steve) for some months, and it was Mike’s first time at presenting course modules, so we were working quite hard in the evenings to refine things and familiarise ourselves with the course content. We were fortunate in that one of the team was in self catering, so we could socialise too (great Spag Bol Suzanne) and I am delighted to report that there are hints of taste returning – certainly Stella Artois tasted fine!

The course delivery went well – it is a learning curve for all of us – the candidates for the content and us for the best methods of delivery. However the icing on the cake for the team was the appearnce of Elspeth (whose blog I also host – link on the left) on Sunday morning – looking extremely fit and well. Great to have you with us Elspeth!

I got home yesterday evening – quite tired! Apart from the preparation, delivering the course itself is surprisingly tiring, but it went really well, so the preparation paid off! The next stage is to consolidate the lessons we have learned and produce the ‘definitive’ training notes.

Healthwise, not much to report. My sense of smell seems to be waking up, although food still doesn’t have much smell, I was hit by the smell of white spirit from some decorating when I arrived home! My sense of taste seems to be getting slightly better too. I mentioned the Stella, however the bacon I had for breakfast at the weekend tasted of nothing much, most food still tastes very bland – still, better than tasting unpleasant).

The sore throat is much better, although I found that the presenting made my mouth dry (My spit production is down! – one of the side effects I was warned about, but that should recover in time) and that makes my voice sound thicker.

Still, all seems to be going reasonably well on the symptoms side – now we need the GvHd so the underlying lymphoma gets a good kicking!

Onwards and Upwards!

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