Archive for the 'Life on hold!' Category

Wednesday 16 July… A waiting game

Just realised that I havent posted for a few days. Its been a bit of a torrid week. I had the rituximab as an outpatient last week, so I was hoping for a significant reduction in my white cell count when I went to clinic on Monday.

Alas, that was not the case, in fact they had risen and the conclusion is that the combination isn’t working.
So the plan is to have a short course of more conventional chemo as an inpatient over three days. I was hoping to be admitted yesterday, but there were no beds available, so I am hoping that I will be admitted today.

I was supposed to be going away this week-end for an annual reunion with my university flat mates and friends, but that is on hold at the moment. However I did have a superb evening at a Soul/Motown music festival last Friday – I found the energy for about an hour on the dance floor! 🙂

But I havent been sleeping well, with sundry aches and pains, so I hope that treatment will start soon.

Onwards and Upwards? I hope so! 🙂

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Thursday 4 July… treatment starts!

Mixed day today I woke up in the night with a numb mouth (almost like a dental injection effect) and again when I woke. Although it soon wore off, I mentioned it to the registrar who launched into a stroke/TIA (transient ischaemic attack – medical term for a stroke!) assessment. Happily it should nothing untoward and it was thought that it might have been a consequence of the high white cell count (WCC). It seems that my WCC is still increasing which isn’t very good news. I had bloods taken again this morning before the rituximab.

Anyway, the rituximab was started this afternoon, again a half dose to mitigate against Tumour Lysis and preceded by Piriton (which promptly made me drowsy!)

One very welcome visitor this evening, but just as I thought I would be drip free this evening, a bag of saline with added magnesium turned up. I had more bloods taken tonight so I hope they will at least show a slow down in the rate of increase, and at best a reversal.

I get the second half of the drug tomorrow and I hope I will then be able to go home!

So cautiously onwards and I hope Upwards! 🙂

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Tuesday 2 July… Rollercoaster time

Well, an emotional roller coaster! I had a quiet weekend – still a bit shocked and upset that the ibrutinib had stopped working after on 4 months. I suppose I should have remembered that studies have shown that it is less effective in relapsed cases. I slept badly over the weekend but I was hopeful that the combination of rituximab and ibrutinib would continue to be effective, so I was looking forward to having the blood test and results yesterday.

Unfortunately the blood resuts showed that my white cell count had continued to increase – from 75 last Monday to over 170 yesterday. The normal range is around 11. There are two possible explanations, one is that the rituximab has caused a brief spike in the count (as the ibrutinib did initially. The other less palatable reason is that the combination isn’t working and the lymphoma is progressing. The is unfortunately no way to tell without waiting, but that really isn’t an option with a count that high, so the plan is to give a short course of conventional chemo followed by another maintenance drug that I haven’t had before.

So I left the hospital in a very mixed emotional state – not in a good place. I did go out that evening, which helped, but I slept very badly with all sorts of dark thoughts going round my brain in the small hours.

However, things always seem better in the morning and I started to think tings through more logically. I think emotionally I waa feat=ring the worst, but logically, while things could be better, this is not a terminal diagnosis. The prognosis might not be the best, but there is an active treatment plan in place.

The earlier today I had a call from the nurse specialists to say that I would be having my first session tomorrow. The drug is vinblastine – a gentler form of vincristine – which I have had before. The side effects are supposed to be minimal so I shouldn’t feel too unwell. It is a group of drugs called the vinc alkaloids, originally synthesised from the Madagascan Periwinkle!

So while I might be down, I’m not out. Onwards and upwards doesn’t seem to quite fit the mood – but certainly onwards, and I hope upwards.

I must record my thanks to various friends who helped me through this rather dark time. You know who you are!

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Tuesday 25 June… Not so good news

Bit of a set back. I had a bit of a dizzy spell on Saturday, which although it passed did alarm me a bit, and on Sunday I thought I could feel a small lump in my abdomen. I had an appointment for a CT scan yesterday so I gave the Lymphoma Nurse Specialists a call and they suggested I pop in to see them before my CT scan. I did so and provided a blood sample before going off for the scan.

I arrived back in the clinic after the scan and discovered that my blood chemisty is out of spec with a large increase in my lymphocyte count. Interestingly the last test had also shown a slightly elevated count., so the conclusion is that the lymphoma is on the move again. Disappointing after only 4 months, but it is known that the response in relapsed Mantle Cell Lymphoma is not as good as when it is first line treatment.

Anyway, the plan is to give me a monoclonal antibody (rituximab) in conjunction with the ibrutinib. I have had rituximab before in 2004 so I know I can tolerate it. However there is a risk of an adverse reaction, so after a phone call this morning, I am likely to be admitted as an in-patient and given the drug over two days.

Not the best of news as I had plans for various trips away, some of which will ned to be cancelled (no flying), but it is what it is, so I hope we continue Onwards and Upwards and this little setback.


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.


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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