Archive for the 'Life on hold!' 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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Sunday 20th January… and out!

A quick but productive stay at Southampton, but I am now safely back home! To summarise yesterday, after I was admitted, I had a litre of saline with Magnesium overnight. Interestingly I was on the bone marrow transplant ward, all individual rooms, so I had quite a quiet night. Funnily enough, I was a floor below the ward I was on in 2007, with the same view over the blood transfusion unit – however the weather was much better today, and I am in much better physical shape than I was then!

My window this morning

The big question this morning was whether my blood chemistry had improved enough to let me go home or whether I needed more saline, which the morning blood tests would determine.

But first…breakfast!

Breakfast – What, no bacon?

Eventually the on-call oncology consultant came to see me and the results should that while one parameter had improved, another had slightly deteriorated, but overall, he felt it was safe to let me go home, seeing that I have a follow-up appointment at Guy’s on Wednesday.

So my job tomorrow is to send my blood results to the Cancer Nurse Specialist (Karen) tomorrow, give her the names of the CNS at Southampton so they can liaise, and see if I should have another blood test before Wednesday, ‘just in case’ (and I have an order form for that purpose.)

To sum up, the Consultant at Southampton said that their job is to make sure I am safe, in the clinical context (and they only have a snapshot taken yesterday and today) and to treat that as required, given that Guy’s have overall management. And this they did splendidly! It was also reassuring to get consistent reports about the cause of the oedema (almost certainly the steroids).

So, more bloods tomorrow, and then up to London on Wednesday when I hope the treatment and management plans will be revealed.

Finally I must thank the many friends who have sent me messages of support during the last three weeks, and my family, and one (Amanda) who has shunted me to and from Southampton yesterday and today. Thank you!

Not sure when the next update will be – so you will just have to check in and see! 🙂

Onwards and Upwards!

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Tuesday 15th January … Happy birthday to my Granddaughter and NHS crisis averted!

First of all a very Happy Birthday to my Granddaughter – 12 today!

Now for the NHS crisis! There has been a major shortage of PJ trousers over the weekend, plenty of tops, but no trousers! Fortunately a new supply has been found before this was leaked to the red top press and all is well! It’s these little things that make that tiny difference between OK and comfortable! (Drugs and technology help too, of course! 🙂 )

It was a quiet afternoon yesterday, apart from a Registrar visit last evening. Blood chemistry coming back into spec with calcium levels falling along with creatinine. The lump is continuing to shrink too!

I slept well, woken at 5 for an IV change, obs and I had the steroids an hour early at the same time with another 3 hours.

And I’ve just had a phone call from the PET centre asking if I’m attending my appointment tomorrow! Seems I have an appointment (not unexpected) but they didn’t know I was still an in-patient! That will be number 25!

And three more names for the Percy pig hall of fame award, Rosie, Aelfa (spelling!) and Gusha from Poland who flits in and out like a shadow in the night to do observations and just ‘be there’

And a quick update, we have just had a harpist play for 15 minutes on the ward. Really relaxing and soothing.

Onwards and Upwards!

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Monday 14th January 2019… A Sunny Day!

It indeed sunny and I have found a way of uploading photos from my phone, so I will go and add some to previous posts!

This the view from the sunny side of the ward this morning!

I woke up early at 6, after a fairly restful night, for today’s steroids! Tumour definitely shrinking. A bit of deep sleep until 8:15 when a very noisy handover woke me up!

Yesterday was largely uneventful in the afternoon until Rachael arrived at around 5:15 bearing washing and a couple more items of clothing. She also collect a tech treat for me, a pair of Bluetooth ear buds! I am very impressed with the quality but best of all is that I’m not tethered to the phone so I can put that own and have two hands free while I’m shunting the pole around, taking meds and just doing hospital stuff!

So feeling good, thank you to an old friend Liz for her comments yesterday (always glad to receive comments – they may be held for moderation if it’s a new email address (it is not published) but I will release it and all will be well thereafter!

I’m expecting a ward round, so I may update later!

Onwards and upwards!

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Sunday 13th January … More News – and An Intesting Fact

I was going to start this with an interesting fact (I like to be informative!) But I had a consultant visit last night – a bit too late to update last nights post which was already a bit long.

So, after the registrar, the consultant came round (maybe the registrar told him I was asking difficult questions – I hope so!). Really nice chap so we had a long chat about clinicians we knew, my medical history and about the current situation. They definitely think this is a mutation of the original into this more aggressive form. He confirmed that they are controlling the prednisolone carefully to avoid overloading the kidneys from the tumor lysis and that the calcium build up was caused by the tumour. The tumour cells express an enzyme that interferes with calcium metabolism so it builds up in the blood faster than it can be excreted. That is now coming down. It is also the reason why I felt so listless and tired over Christmas although it was so gradual that I didn’t notice it.

The amount of chemo in the past is an issue, but they are going back over the records to see what is what (really pleased that there are so many of the team that treated me in the past are still here – notes are fine, but having the author of the notes present is even better!)

So not an immediately straightforward treatment path. The plan is to keep me in for about 7 to 10 days to get the tumour debulked, while the optimum treatment regime is worked out!

I did say we needed to get this fixed as I have a lot of plans for this year! I’m glad to say that he strongly agrees 🙂 ! Very good rapport and absolutely confirms that this the place to be! So not straightforward, but very positive!

So that’s pretty much where we are! As an aside I managed to get the bed controls unlocked so the nurse could make the bed – always knew an engineering degree would be useful!)

And now for “the interesting fact”!

There is a new cancer centre st Guys as I have mentioned before. It’s a first class facility with an international reputation and stands in the Guys estate in the shadow of The Shard.

Unlike The Shard it is only about 6 stories high. But the intesting thing is that it weighs more than The Shard because the Radio-therapeutic equipment is on the first floor rather than in the basement. These very powerful x-ray (gamma) radiation sources need a lot of lead shielding and it is the huge amount of lead that contributes to its overall weight!

(You might wonder why I updated my blog so early – I had my daily steroid dose at 6 am this morning so I’m bouncing off the curtains now!)

Onwards and Upwards (almost literally at the moment!) 🙂

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Saturday 12th January … Mixed news

I had a reasonably good sleep last night, punctuated by the usual ward sounds, observations etc. I was woken by the breakfast trolley – I am definitely developing the munchies!

Then followed the usual routines; more observations, bloods and my second dose of prednisolone!

All done and then a quick visit by a haematology registrar who spent an age reading up notes just outside my cubicle before coming in to tell me that they had the results of the lymph node biopsy and it could be that the Mantle cell lymphoma had transformed into a more aggressive “diffused large B cell lymphoma”.

Further questioning revealed that standard treatment is chemo using the R-CHOP protocol but she seemed surprised when I said I had had that in the past (not read far enough back in the notes!). I asked her about outcomes and I got the meaningless “studies show that 50% of patients achieve a good response”. I did try questioning further but as a fairly junior hospital doctor her knowledge of the detail was limited and she said that she didn’t have much experience of that lymphoma, which is fair enough.

(I should have remembered really, I was rather unfairly expecting too much)

She did say that the consultant would be round on Monday to answer my questions. I spent a while afterwards looking up the details on the internet 🙂

I think that some less experienced doctors are surprised when some patients have done some homework and are capable of asking intelligent questions related to their illness? I rember a consultant saying that patients generally fall into two types, those who just say do whatever you have to fo, and those that take an active interest and active role in their disease management – and that they have a better outcome!

R-CHOP (Rituximab, Cyclosporine, Rudoxinhydrochloride, Vincristine and Prednisolone) is the last lot of chemo I had in 2007 which nearly did for me, but it did put me into remission after just two cycles so I could have the last batch of donor cells. And I was in worse physical health then after several other treatments in the previous months.

Meanwhile I think the mass may have started shrinking already under just the prednisolone so that is good news! Better still it has boosted my sense of well-being and my appetite – the latter to the extent that I’m hoovering the hospital food! I’ve put on about 4lbs since I was admitted!

And as I type this, the nurse has just been round to give me another 30mg of prednisolone!

Bring it on!

So that’s all for the moment, any changes today and I’ll do an update unless it’s late when it will be wrapped up tomorrow.

And the view from the other side of the corridor tonight

I must mention some of the excellent nursing team that have been looking after me – I’m always a bit wary about mentioning names as I’m sure I’ll miss some out or don’t get the names, but so far Miah, Andrea, Lucia, Niamh, Isabel, Ruth and today, Yobny. All qualify for a Percy Pig award! (Percy Pigs are the Marks and Spencer’s soft fruit gums – Rachael brought some in for me!) The award panel (me) looks at cheerfulness, sense of humour and efficiency in looking after me!

So, Onwards and Upwards!

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Friday 11th January… Treatment starts!

As I said yesterday, pre-treatment started yesterday, but this morning I had the first dose of steroids, 30mg of prednisolone. Not the largest dose but that is to keep the rate of breakdown low for the reasons I outlined yesterday.

But prior to that I had an echocardiogram just to ensure all the valves are clear, and that my heart and aorta (big artery that takes the output from the heart to distribute round the body) which seem to be fine – which is good to know! 🙂

I had a surprise visitor at lunchtime – Dr Robert Carr who was the consultant that first treated me 20 years ago! He has been mentioned before in the blog! He is no longer on “The front line” so he was careful to say he was here as a friend rather than as my doctor, but he sits on some of the MDT meetings for haematology and saw my name! It was really good to see him! (His wife was the president of the RCPaeds and childcare about three years ago.

My next visitor was Rachael. We had a good chat and she took away some dirty washing and will bring it back on Sunday. She also brought me a toothbrush as my issues Guangdong pharmaceutical tooth blush is starting to lose its blisles! 🙂

So a good day day today feeling good (might be the steroids) good appetite (definitely the steroids – need to be careful not to turn into a space hopper) so very much..

Onwards and Upwards!

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Wednesday 9th January… Day release?

I’m writing this a bit earlier today – when I first started it back in 2006, most of noteworthy activities were in the morning, but this stay has had things going on pretty much all day.

But I digress 🙂 …

I had a quiet night (apart from at 6am when the blood pressure machine fell off its perch!). I had another bag is saline overnight but now I am washed, fed and IV free. I think all the diagnostic tests have been completed and just waiting for the biopsy results, so I’m hoping I might get to go home for 24 hours so I can ensure everything that needs turning off has been and more importantly, pick up some clothes to see me through the treatment phase!

That decision will test with the haematology team, so I hope the ward round won’t be too late! Watch this space!

Onwards and upwards!

Update.

Well, the escape plan failed! Annoying because after the drip was taken down this morning, nothing else happened until a new one was put up this evening. I could easily have nipped home and back in the 6 hours.

The reasoning was that my calcium level is 3.1, which is regarded as life threatening. However it was 4.2 last week when I was admitted and must have been elevated for some time before that. The irony is that if I hadn’t popped in to see Rachael on my mat back to Waterloo, I’d have been on the train home before I was contacted to return – so I would have got home then!

I’m going to have another try tomorrow, as I expect to start treatment after that and leaving will be a definite no at that point.

Anyway, as ever, Onwards and Upwards!

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Tuesday 8th January … not good news

Just after I published yesterday’s blog, I had a visit from the haematology consultant to say that the results were back from the scan and they showed several lump nodes were lighting up. These are in a band round my abdomen and along the top of my bowel . Just got good measure, there was a little activity in my prostate which may or may not be related, so I’ll have a blood test (PSA) for that.

Not the best of news, but she did go on to say about the new treatments that have been developed in the last 12 years, one of which has only been available for 2 years. These are given in tablet form, but I’d probably be treated initially as an in-patient because the breakdown products from the cells can put a high load on the kidneys. She also said I would have a biopsy to confirm that it is the mantle cell lymphoma.

So this morning was bright and I was nil by mouth for the biopsy (not sure why as it was to be an ultrasound guided procedure) and I waited… and waited until I was told it had been postponed until tomorrow and I could eat and drink.

Fortunately I didn’t because 5 minutes later it was back on so my trusty chariot was wheeled down to ultrasound where the biopsy took place. Not too painful except when the first (outer) needle went in, but I was told to have 4 hours bed rest afterwards.

I’m still a bit sore and getting in and out of bed is tricky as it’s painful lifting my right leg up, but where there’s a will… 🙂

Rachael popped in for an our on her way home from work, and then a quiet evening until a doctor’s visit to say I probably need to have a chest x-ray. I think precautionary as the occupant on one side has pneumonia in one lung, and the other side has something similar. Unhealthy places, hospitals!

I’m still trying to get a 24 hour escape pass so I can go home and pick up some clothes and other bits and pieces for a longer stay. The biopsy will take 3 or 4 days to analyse so I hope that might be an opportunity!

Meanwhile, onwards and upwards!

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