Peter’s Hospital Diary

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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I have just been up to London for another check-up at Guy’s with the lovely Linny, and a medical student (whose name I didn’t get - Liz?). No much to report really. The problems of last week, while not fully resolved, seem to be getting better, and it is too soon for any signs of GvHd to be appearing, so the next time I go up will be in three weeks, unless anything dramatic happens in the meantime!

My sense of taste is showing signs of waking up, and interestingly, so is my sense of smell. The latter is a mixed blessing, however, because at the moment everything smells like hospital food! You know, that hot steamy, overheated, overboiled smell that turns the appetite right off. And it isn’t only just food that smells like that, most things seem to, so I hope this phase passes quickly! As for taste, well, everything seems peppery, but it is early days yet!

Next task is to order some wines for Christmas - I just hope I will be able to do them justice!

So, Onwards and Upwards!

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I must say I felt quite weak when I got home on Saturday - well, it was nearly 2 weeks since I last had anything solid to eat! However Sunday was spent relaxing (I needed it) and I did manage some soup in the evening.

This morning my throat felt a lot better, and I did go into the office, catch up with the gossip, check emails and see what is happening for the bnext week. Although talking made my throat dry, it wasn’t too painful and although I felt tired when I got home, my throat still feels OK. I suppose it is 10 days since I finished the radiotherapy, and it is about time that the cells in my throat (which are replaced quite rapidly) should start recovering.

The really good news is that I had some solid food this morning - porridge with stewed fruit. (This is starting to sound like weaning a baby!) I had more this evening - chili con carne - and although I couldn’t really taste it, it was good to be eating properly again - and good for my poor abused digestive system!

It is too early too look for signs of advancing GvHd, I still have some dry skin which might be a hint from the last lot of lymphocytes, but it will take a few weeks before anything happens. However, I have another check-up this Thursday, so we will see what they say then. That said, if you really want to find out what chronic GvHd can do, take another look at John’s Blog. The aim for me is to promote it so that the immune system is actively fighting the lymphoma, but not so aggressive that it becomes chronic.

On the blog front, I have finally had a little rant about PatientLine, fulfilling a promise I made to the ward staff (Angela) on Stanley Ward. The link is on the top right.

So, feeling pretty cheerful… Onwards and Upwards!

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Whew! Home at last!

The last couple of days have been a bit tedious - I must have had the most uncomfortable mattress in the hospital!

However, to recap the last 24 hours… I continued with the various pills and potions to clear out my system, and they seem to have worked with a vengeance - the medical equivalent of Dyno-Rod! As you know, I was allowed out yesterday afternoon, but when I got back at 4 I was told that I needed some more saline. Time passed, I read my book, went to bed - and the drip was eventually put up at midnight!

This morning I was seen by an old friend, Sala, who was the senior reg here. He now works at Woowlich, but does week-end cover for Guy’s. He gave the OK and off I went!

It was good to see Nicky (one of THE senior nurses on the ward - and who was there when I had my first transplant) who was sporting a very nice new hair style, and I also said good-bye to Steve who starts a new job on Monday.

I’d like to say that the food had improved in the 10 months since I had my transplant. However although it did look much better than before, the big turn off is that smell when the cover is removed! I thought my sense of smell had completely gone - but no - the one thing remaining is the sensitivity to that boiled steamy aroma that comes from food that has been kept hot! Even after letting that waft away, the dryness in my throat meant that chewing and swallowing was beyond me and it just (to put it bluntly) made me retch, so it must be over 7 days since I last had anything to eat. Hey - the lymphoma/radiotherapy diet - a new one for the tabloids! Still, I am out now, so perhaps something might tempt me. The saddest bit is that I know exactly what I would like to eat - a nice bacon and mushroom baguette - but I know equally well that if I had one I wouldn’t be able to eat it, which makes it very frustrating. Perhaps a milkshake might fit the bill. Oh well, my mouth is less sore, and in a few weeks the sense of taste should start returning.

You may remember that last time I was admitted, it was to Stanley ward, newly refurbished and quite smart. Stanley ward is a general oncology ward, not just haemotolgy. Well I was staggered to learn during this visit that it is closing because of cash shortages. The physical ward will remain open (another ward is moving into the space) but the specialist chemotherapy unit is moving to Samaritan, and that will also take some general oncology patients. Maybe some of those patients will be treated as outpatients, certainly there is talk of expanding the day unit (although that could be because the day unit at St Thomas’s is also closing) but it seems pretty dire that a cancer ward has to close because of cash shortages. So where is all the money that the Government is supposed to be putting into patient care going? Certainly the NHS is going to be mortgaged up to the hilt for the the next 30 years paying for the PFI hospitals that have been built recently to fulfil election promises, and to make the public sector borrowing figures look better than they would be if they were bought outright. Grrrr - politicians! And don’t get me started on NICE - I’ve already had a go about them on previous posts!

Talking of Stanley ward, when I was admitted there, talk drifted round to PatientLine. PatientLine is a nifty idea that gives telephone and television to each patient bedside. Nifty - well that is one word to describe it, but it really needs a page of its own to describe it. That will be produced shortly, and you will be able to get to it from the links at the top right of the page.

Moving swiftly on, and a chance to get my blood pressure down, the journey back was quite pleasant. True, it was a Saturday, and the inevitable enginerring works meant that the train took a completely different route, but the sun was shining, the sky was blue, and the trees were a magnificant balze of intense autumn colours. It really was spectacular.

And finally, to get rid of the medical guff and stuff, news of the conservatory! I forgot to mention (well, I have been a bit pre-occupied) that we had the final delivery of the conservatory furniture and cushions a week ago last Wednesday, and I must say we are very pleased with it. The two pictures show the final effect. If anyone is interested, they came from Haddon House and they do look good. It is a shame that their customer service and stock control isn’t as good as the furniture. It has taken over 6 months (and many ‘phone calls) since the first order (lost) and the second order (not taken down correctly) for the third order to be finally delivered, so if you are interested in any for the spring, I should get your order in now!

And on that note, I shall say, with a lot more conviction than in the last week or so, Onwards and Upwards!

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And plans change yet again! I came up to London yesterday to have my appointment in the haematology clinic to find that I was going to be admitted to sort out the prohlem with l my gut. Deep joy! Luckily I had brought an overnight bag with me ‘just in case’. However, the good news was that I was to have another dose of donor lymphocytes..

So after a calling into the Dimbleby Cancer Care treatment centre, where Kim gave me a back and foot massage, I went back to the day unit for a bit more hydration and then the Lymphocyte infufsion.

That was uneventful (it only took 20 minutes) then it was off to see my old friends on Samaritan ward! I was taken up (in a wheelchair!!) by Steve, one of the ward staff, to a side room while preparations to sort out my recalcitrant gut were put in hand. I will skip over the details, but they seem to have worked and I hope I will be able to go home later today. However it was good to see Steve, Garry, Eric and Haile again.

I am writing this on my PDA on the ward but I have escaped to our friend’s flat to post this. (There aren’t any unprotected wireless networks visible from the ward!)

And the latest news after the ward round is that I am staying overnight but I should be able to leave tomorrow.

So onwards & upwards!

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Another slight change of plan - I am now back home! The results of the blood test this morning showed that I was more hydrated, so I only had another litre of saline, instead of the anticipated two, so as I was finshed buy half past one, I decided I might as well return home. I still have to go up tomorrow morning for the outpatient clinic, so we will see what that brings.

I have another carrier bag full of pills and potions to try and sort out the gut problem although there are cautious signs for optimism, but no need to go into the details! Suffice to say that peristalsis is required!

It was good to see Orla and her team again, and today I met up with Melissa, who you may recall I mentioned during my steroid treatment on Stanley ward.

So onwards and upwards - although the upwards bit seems very steep at the moment!

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Just a quick post today to say that my hospital appointment has been brought forward by a couple of days, partly as one of the side effects of the thalidomide that - to put it delicately - affects bowel function. I’m not expecting to be admitted, but it is always a possibility if I am dehydrated so I am taking an overnight bag, but no laptop.

Normal service will be resumed as soon as possible - I hope in all departments!

O&U!

Later…

I wasn’t admitted, but the team at Guy’s want to see me again tomorrow and on Thursday, so I am staying in the flat for two nights.

The day was uneventful, I saw Linny this morning for a quick chat, followed by an X-ray of my abdomen to make sure there was nothing seriously wrong. The the rest of the day was spent on a drip, as the (inevitable!) blood test showed that I am quite dehydrated. Tomorrow will be more of the same, and then I will see Linny again on Thursday to discuss the way ahead! (More DLI) Meanwhile I am stopping the Thalidomide until the gut problem is resolved.

I am writing this update on my PDA, so the next update will be on Thursday. Until then… O&U!

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And the radiotherapy is completed! However, not a very good day yesterday. I was up fairly early to pack and tidy the flat before leaving, and set off to get to St Thomas’s. I haven’t been at my best in the mornings - my throat seems worse then, possibly because it has dried out in the night, and I didn’t feel like eating, so I left without having any breakfast.

I was on time, but again the unit was running a bit late, so I had about a 25 minute wait before I went in. After the last session I had to go and see one of the radiologists just for a check up, and so I had about another 45 minute wait until I saw someone there. The check up went fairly well, with the classic understatement “Your mouth looks really painful”! Anyway, the outcome was that I was prescibed some stronger pain killers (I declined the offer of the cocaine mouthwash!) and an anti-fungal drug (”I don’t think it is thrush - looks more like necrotic tissue - but have the anti-fungal just in case” - another good one liner)

So it was off to the pharmacy and another 40 minute wait. All went well until I went to collect the drugs, and as I was standing at the counter, I started to feel decidedly ‘woozy’. It was when the dispenser asked “Are you feeling OK?” and I replied “Not really” that things started going a bit black, and although I didn’t actually collapse in a big snotty heap on the floor, the next thing I remember was a bit of staggering while I was supported by two people and sank into a chair. Really weird - only about the third time in my life I have ever fainted. Just to round off a not very good day, I lost my woolly hat somewhere in the hospital.

Anyway, after about 30 minutes I felt strong enough to get back to flat, finish tidying up and think about leaving. I did have a bit of a rest, so I was much later leaving than I expected, The journey from the flat to Waterloo was the hardest part, pulling my suitcase and carrying a bag and the laptop, but once on the train at Waterloo all was OK and I eventually made it back home without any mishaps!

This morning I feel a bit better, and managed some porridge and stewed fruit - the pain killers I was prescribed are really good (Solpadene) and makes eating easier. I still feel quite weak, but nothing like as bad as yesterday - thank goodness!

Anyway, the radiotherapy is complete, the swelling has certainly gone down, and I hope in a couple of weeks the sore throat will have resolved itself!

I did take Simon’s advice (see Thursday’s comments) about the lifts - why make life difficult? Richard and Gillian, I didn’t see Invincible, and I’ll take your word about the French ship being the “Latouche-Tréville” - where did you find that snippet?

Next appointment is at Guy’s on Thursday - Onwards and I hope Upwards!

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And to kick off the post, a couple of photographs, one for Richard - the French Warship, moored alongside HMS Belfast, and as I was walking back over Tower Bridge, an airship flew overhead!

It has been a lovely and sunny day here, although rather cold. The only problem with that is that it tends to dry my throat out, which is uncomfortable and I need to sip lots of water.

However I set off relatively early for the appointement today as I had another reflexology session booked at the Dimbleby Cancer Centre at St Thomas’s. It is a moment to relax and let the cares wash away for a while. I have posted about the Dimbleby trust in the past, just a reminder, there is a link! (And Sarah, ask the nurses on Samaritan ward to book a session with Kim). After the reflexology I went down to have my penultimate dose of rays, and on the way I bumped into my other consultant, Robert Carr, so we had a chat for a couple of minutes. He urged me to keep on fighting!

The rays themselves were uneventful, just like the other days in the morning, and then I see one of the radiologists before leaving and returning home.

The sore throat is pretty much unchanged, and my appetite is pretty low, but I think the most significant thing in the last few days is how weak I feel. Even walking up one flight of stairs seems to be a major effort. Walking on the flat is OK, although I’m not walking as fast as I usually do, and running for a train is just beyond me. It is frustrating!

Still, almost done, and then with an appointment at the haemotolgy clinic next Thursday (followed by another aromatherapy session!) we will see what that brings.

Onwards and Upwards - battle continues!

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