Archive for the 'Post Hospital' Category

Wednesday 6th February… More frustration, but maybe some progress?

I resolved not to chase things up today, so I was pleasantly surprised to receive a call from the the CNS office apologising for not calling me back yesterday, but saying the Ibrutinib was here and ready for collection (Clinical Nurse Specialist) – but she would check that it was in the outpatient pharmacy before I came out to get it. Great excitement – until I received a call 5 minutes later to say that it wasn’t there and it wouldn’t be here until next week. I don’t know if this is because of the conditions of supply or just a bureaucratic mix up, however I have a clinic appointment next Monday (supposedly to review how I was getting on with it) so I may be able to do some digging then – not that it s likely to speed things up. So somewhat unsatisfactory.

I do have a plentiful supply of the steroids so I’ll keep going on those. I suppose it doesn’t help that I have had a bad cold for the last three days, which is making me feel a bit lethargic and wary, I don’t really want infections at the moment (although I’m not neutropenic) but I hope I will be on the mend by the weekend.

So feeling a bit disgruntled at the moment, although I have some reassurance that the situation is being monitored more closely and I hope my name is near the front of the minds of all those people involved in the procurement!

And on the plus side – more toast and marmalade! 🙂

So, rather slowly, Onwards and Upwards.

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Tuesday 5th February 2019… Frustrated and impatient

As you might guess from the title, still no sign of the Ibrutinib. I waa told on Friday that it would be here on Monday. Yesterday I heard that it was probably at the oncology pharmacy (where it goes to be dispensed and then sent to the hospital pharmacy for me to collect). So today, I rang again and eventually discovered that there was some hold up at the oncology pharmacy who suggested that “I ring the consultant’s secretary to find out what was happening”. Excuse me – who should be doing that?? Still, I can’t fault the outpatient pharmacy who have done their best and kept me informed.

Anyway in the spirit of enlightened self interest, I did ring the medical secretary and got a very helpful and proactive response. It seems that there is still a hold up with the paperwork, and while I don’t know for certain, I suspect that the the delay might be in an already identified non-proactive department. Very frustrating.

Meanwhile, I have been doing a bit more research into Ibrutinib (I will post a page!) and it seems that (like several other drugs) it interacts with grapefruit and seville oranges! So it looks like

for a while. And while I like marmalade, I hope it will be a long while as it will be while I am taking the drug. Still, every cloud has a silver lining, while I’m waiting for the paperwork to be sorted, I shall be enjoying

But this situation is very frustrating. I just hope it arrives before the clinic follow-up next Monday!

Onwards and Upwards (albeit somewhat slowly at the moment)

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Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies!

However a quick call to the Clinical Nurse Specialist (Amy) established that there had been an error in the application form (this is a learning curve all round I think!) but it had been resubmitted, and a prescription for the steroids had been raised for collection today.

So quick trip to pick up a reduced does of steroids and the pharmacy say the Ibrutinib will be here on Monday.

So slightly frustrating because I really want to get started on this, but there is nothing I can do to influence the course of events, so I just have to be a patient patient and enjoy the weekend! There are still huge positives, the steroids have helped, and while they have been hugely beneficial, there are long term implications, so it’s good that it is being reduced!

I suppose I’m keen to start because there is also a small risk that I might not respond well, and I’d like the reassurance that I will, but again nothing I can do about it! At least I will know as I expect to see the lump shrink, just as I have with the steroids! Nothing like a bit of re-inforcing positive feedback.

So I think a relaxing weekend and fingers crossed for Monday when we will continue…

Onwards and Upwards!

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Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences.

But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping to find out the direction my future treatment would take. Would it be the Ibrutinib or conventional chemo?

So it was with some trepidation that I turned up at the outpatient’s clinic to see what was happening – but prepared for either. So it was with some surprise and relief that I have been accepted for the drug on a named patient basis. I think the team at Southampton were surprised as they have not managed to get the drug on that basis, so it was purely by the efforts of the team at Guys. Maybe this will provide an ‘in’ for the Southampton team – I hope so for the sake of other patients who may be in the same position. (I will write a page about the politics and background of Ibrutinib).

So the drug has been ordered and should be here tomorrow or Thursday. It is a tablet that I take once a day at home, and go into outpatients for periodic monitoring. It is well tolerated with few side effects, so a much less unpleasant treatment plan that the alternative.

It is a drug I will keep taking for as long as it works. In relapsed patients tis is typically 2 to 3 years (but typical is a statistical type term and applies to populations, not individuals)

So this is buying more time – but in effect that is what my treatment over the last 20 years has done. This does not preclude any other chemo or treatment further down the line, and there are new treatments under development. But this gives me back some control and ability to plan things for (I hope!) the next 12 months or more (provided I respond well to it – which will be revealed on the next few weeks)

So I will keep you updated with progress. I have also released this to the wider internet for the time being – I’ll see how that goes!

A view over Southampton Hospital

So very much Onwards and Upwards! 🙂

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Thursday 17th January… and home!

Yes, I was discharged yesterday, not without some delay though!

The kidney function test completed at just after 2pm (results to follow) just as a friend, Mark, turned up to visit. (Long term readers of this blog will know Mark as a fellow blogmaster who first set up the blog for me in 2006 as a means of keeping everyone informed about my progress when individual e mailing became too much). Mark happened to be in London yesterday, but it was fortuitous for me as I could cadge a lift home!

So I was all packed and just waiting for my discharge note and ‘party bag’ (medicines to go). I expected a bit of a delay as I was expecting a schedule to wean me off the steroids – but in the end it took four hours before the prescription was written and the drugs delivered from the pharmacy! I suppose in the priority list, medicine for a patient going home or the needs of a sick patient, my needs have lower priority, but it was frustrating. Im the end we sat and had a coffee so the bed bay could be released back to the ward. In the end no steroids were prescribed as I don’t need to be weaned off them as it was only a short course.

But the ‘party bag’ arrived and we caught the train to Richmond where Mark’s car was parked and I got home at about 8:30pm – tired (and to find my car had a flat battery!)

But a long but restless sleep and the sun is shining today and the world looks good.

Of course, while the immediate problem (hypercalcaemia) has been addressed, there is the longer term issue of the lymphoma. The feeling is that it is the blastic form, which indicates a particular course of treatment, but I have a follow up appointment next Wednesday, so things may become clearer then.

I will be continuing the blog – maybe not every day, but certainly when there is something to report!

Meanwhile, I add nurse Liz (who chased up the progress of my party bag yesterday) to the Percy Pig awards for her support yesterday, and my thanks to all the staff on Hedley-Atkins Ward at Guy’s Hospital.

Onwards and Upwards!

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Monday afternoon… home again!

At last, although I must say that the crew in Stanley ward are every bit as lovely as my friends on Samaritan ward. I must especially mention Nick (the night staff nurse) and Adam, who was on days yesterday and today. The only problem with naming names is that inevitably some are left out, so please pass on my thanks guys!

But to start at where yesterday left off… After the last 500mg dose of prednisolone, I finished off (most of) the saline and was allowed out to Marian’s flat again, where I could have a bit of peace and relax. I was back in time for tea, and then spent an evening watching Jane Eyre.

This morning I was up bright and early, washed and ready for the ward round in preparation for the great escape! Adam told me that an appointment had been made for me at the radiotherapy clinic at St Thomas’s tomorrow for a radiotherapy planning session. However I had to be consented first, but the Doctor for that (Octavia) wouldn’t be able to see me until after lunch. Oh well, I settled down for a quiet morning! (but we got the canula out) One good thing was that Kim (The Dimbleby Cancer Care sponsored Aromatherapist) came onto the ward, and I had a lovely foot massage! Thank you Kim!

Just after lunch I had a visit from a support psychologist (Shelley) and we had a chat until the ward round descended! This time it was, Matthew, (Senior Reg, who I saw when I was having the transplant) Melissa, Roweanna and Connie, and having looked at the swelling, declared me fit to leave – once they had checked back with Linny *within half an hour”! Nearly an hour later, after failing to find Linny, they said I could go!

I stopped by to see Viki on the way out, to confirm appointments for this week. There is still some debate about the radiotherapy. My view (for what it is worth) is that while the steroids have fixed the immediate problem, the swelling, it has also damped down any GvHd. Now the Thalidomide should stir things up again, but it seems to me that this might have given the lymphoma a bit of a lead, so we should give it a good kicking while we can!

Anyway, on the way home I had a call from Olivia (radiologist) confirming the planning appointment tomorrow!

So onwards and upwards! Now the only snag is what to file this under – I’m not in hospital, I can’t say that I am completely getting my life back, so I suppose “on hold” remains the best option – but only for the moment! (Dual category – “Post Hospital” and “Life on Hold”)

By the way, thank you for the comments – I will answer them under the relevant posts!

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Thursday… t+25

Yes it really is a week since I last posted, and amazingly, 25 weeks since I had the transplant – 6 months ago!

Looking over the last few posts, I seem to be getting away from the original purpose, which was health updates! Certainly that is a sign that my health is improving and I feel that I am getting stronger each day. I suspect the GvHd is still rumbling on a bit, but my skin is generally much less itchy than it has been, and less ‘flaky’ and I am applying the steroid creams much more sparingly. I am still taking prophylactic anti-biotics while my new immune system builds its strength up. My sense of smell is still impaired, although that seems to be returning. I can smell something, but everything smells the same. (The scent of the flowers from the Palace gardens was completely lost to me). I imagine it is a little like being deaf or colour blind – I can sense sometthing, but the detail is missing.

There are two significant events on the hospital horizon: The first is a repeat lung function test, scheduled for next Thursday, although I may try to postpone that for a week to coincide with my next check up with Linny. The second will be my 16th PET scan, which will be in a couple of weeks although I haven’t yet had the appointment.

I seem to have come a long way in the last 6 months, and I can’t quite believe that it was so long ago! Your comments and support have made it pass very quickly! Thank you.

So what have I been up to in the last week? Well, after the server update I needed a day or so to tidy up a few loose ends, but that is complete. The acid test was to see if it all worked when the old software was un-installed – it did! I was in charge at home over the weekend (Felicity was away) and although the children were resigned to a diet of “something on toast” I surprised them with a full roast dinner with all the trimmings on Sunday!

However the highlight of the week was a visit to a tea party on Tuesday. Not just any old tea party, but a Garden Party at Buckingham Palace! This came about through a nomination from LeukaemiaCare (you may recall that I am a volunteer worker with them). We travelled up London on Tuesday morning, to our friends’ flat, changed and took a taxi to the Palace. We didn’t get to meet any of the Royal Party, but we had a lovely afternoon, taking tea and wandering round the grounds (with about 5,000 other guests!) before getting a taxi back to the flat. We finished off the day with dinner, and drove home yesterday. Photography is banned in the Palace grounds, so I’m afraid no pictures!

The final bit of news is that I am going back to work part time tomorrow! This is for a briefing on a small project, some of which I’ll be able to do from home, but it will ease me back into the discipline of going to work!

So that comes back to the question of “where does the blog go from here?” I think I’ll delay that decision until after the next PET scan result, or when I go back to work, but those events might prove to be natural breakpoints.

But until then… Onwards and Upwards!

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Thursday… t+24

A bit of a short post today as I have had a busy couple of days. Those of you who have been visiting regularly will have noted that the server has been unavailable for a few lengthy periods while I have been doing software updates. I am delighted that most of the work is done, and although you wont see many changes on the site, it does allow for future upgrades.

In ‘geek speak’ the main requirement was to use a later version of PHP (the scripting language that the blog uses to present the contents of the database) but to do that meant changes to the Apache webserver that serves the PHP generated pages. This meant downloading the source code and compiling it for this system, but (at last!) the site is running the latest version of Apache (2.2) and a newer version of PHP (4.4.1).

There is still a bit of tidying up to do, but the basic system is working!

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Monday… What a scorcher!

And the weather did hold up for the weekend! Which was just as well as we had a “bit of a bash” on Saturday to celebrate various birthdays, continue research into the taste of various alocholic drinks, but basically to enjoy the sunshine and “chill out” after what has been a pretty eventful year so far!

The garden looked good Garden and I think the guests all appeared to enjoy themselves! I certainly did, and again confirmed that Pimms does taste better when mixed with dry ginger rather than lemonade; and that lager and cider are both equally enjoyable on a hot day. Mark (fellow blogmaster) loaned us a sound system, and as the neighbours were all invited, there was no excuse not to use it fully!Guests
Guests

Sunday was equally enjoyable (after the inevitable clearing up and taking a load of empties to the tip) with more hot weather and another BBQ, so all in all it was a very good weekend! We also have another ‘exotic’ plant to look after – a bourgainvillea! Thank you Mark, Sue, Dot, Mike, Peter and Lin!Bourgainvillea

Oh yes – we spent a quiet hour yesterday picking over 5 pounds of blackcurrants… but all the time I could feel beady little eyes watching me from the trees!

I have skipped a day in my enthusiasm, but on Friday I went to see the equivalent of my GP (my work medical services) who have said that August looks a good for starting back in my next job. All I need is a medical certificate to say I am fit so that looks as if it is getting under way (and I have been spending some time on the ‘phone this morning making sure that is happening!)

So – as I believe someone once said… “Onwards and Upwards!”

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Thursday… t+23

It seemed a long way to go for a 20 minute consultation, but then its always a pleasure to see Linny! Progress seems to be continuing, and the creatinin level from my last visit was 123, still slightly above the upper ‘normal’ limit, but much lower than it has been! The next check up is in 4 weeks, which will roughly coincide with the next PET scan. There was a bit of tooth sucking when I discussed getting dive fit again, but the suggestion that I might go back to work in August passed without (too much) comment!

The next check up will include some additional blood tests – one for chimerism, to test the ratio of donor cells to mine (it was 100% last time, so I’m not quite sure why that is being re-done – I must ask) and a CD4 cell count. CD4 cells are a particular type of lymphocyte characterised by a type of protein on their suface, and have an important role to play in fighting infections. There is more information here.

So I got back home failrly early to find that the conservatory is now tiled and grouted!Conservatory I am very pleased with the final result, there is some furniture on order, but that won’t arrive until August.

The hot weather is back again today, the tomatoes and cucumbers were wilting a bit, but they perked up with some water, and the lemon tree (bush) looks as if it is having another growth spurt. Perhaps it objects to being called a bush!

So lets hope the weather holds up for the weekend!

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