Archive for January, 2019

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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Saturday 26th January…And home

Yes! Made it home! It did take 4 1/2 hours for my ‘party bag’ to be delivered, which was frustrating, but at least I had ordered an evening meal so I didn’t go hungry, but I was getting a little impatient! But Katie and Chris collected me at 7pm and whisked me home where I could settle down and relax. Of the 25 days in January so far, 22 have been spent in hospital!

But I have come away with steroids for the weekend, and the supporting tablets, and a return visit to the clinic on Monday, where bloods will be checked and I hope the direction of the next stage of treatment will be determined. Katie suggests I take an overnight bag with me on Monday – I might well do that!

But nice to be home and sorting the house out. I slept fairly well (although it seems very quiet after the hospital ward!) and today I have done my washing, made some sup and baked 4 loaves of bread – powerful stuff these steroids! Getting a bit of normal life back. And I also have my parents visiting for the weekend!

So it has been quite a month so far – not at all how I expected the year to start, and it has been a bit of a roller coaster. The speed at which this developed has been a shock (no evidence of it at the November check-up) but at least it has been caught and a plan is in progress. It has been odd loosening the links with Guys and the wonderful people there, but good to be with the lovely people at Southampton, and makes treatment much easier for me.

I will continue posting as the treatment progresses, and of course if you wish to add comments, I’m always delighted to receive them! (first comment is held for moderation as an ant-spam precaution)

So – Onwards and Upwards! 🙂

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Friday 25th January … Home?

And that is the question of the day!  Will I be allowed home for the weekend, to return as an outpatient on Monday?

That will depend on the blood results, due later this morning, but meanwhile I thought I’d share a selfie taken last night…

Not looking too bad though I say it myself!

It was quite quiet yesterday afternoon after the discussions about treatment and starting the steroids. Amanda popped in to visit – I’m glad to say that I was much brighter than the night before, and that the stomach cramps have not returned. Of course if there was a partial obstruction caused by the enlarged nodes, the steroids should help relieve that at the nodes shrink back a bit.

But I slept well last night, no stomach pains and feeling good (that will be the steroids!). The drip came down just before I went to sleep so I was untethered!

Not had bloods done yet, but I have just had my morning meds which included the more steroids.

I’ll update this later as events unfold, but as always,

Onwards and Upwards!


Yes, going home this afternoon and then coming back on Monday to see how things are. Treatment will start a bit later.  If it’s Ibrutinib, that needs to be ordered, if it’s ‘conventional’ then I need a slot in the outpatient schedule, which may take a couple of days, but in either case, the steroids are providing a quick fix (think bandage on a wound, slowing things down temporarily, but not no substitute for sutures!)

O&U 🙂


Thursday 24th January… A disturbed night!

I was still in a bit of pain when I settled down, lots of gurgling but not much relief,  I had something to damp down stomach action and a bit more oromorph, which helped dull the pain, but of course did nothing to alleviate the underlying cause.

But all went reasonably well (although very broken sleep) until I woke at about 4 this morning feeling a bit sick – and promptly was 🙁 .  Nurses were great at a speedy bed change and once I settled down again, I felt much more comfortable, gripes had gone and I slept really well until 8ish this morning when the usual bloods, obs, breakfast routines started.  I’m not on a drip at the moment, so I’m not tethered to my pole and have a bit more freedom of movement!

And hot off the press, just as I was writing this, Dr Lown popped in with an update.

They are still waiting to hear whether the manufactures of Ibrutinib (Jansen) will supply the drug for me, and that decision is expected this week.  If the answer is yes, that is the route to go (it will take a couple of days to get it).

if the answer is no, then there are other options, localised radiotherapy to shrink specific nodes, but of course that is not a systemic fix.  But there are some new chemo protocols which have been developed and used with success in relapsed MCL.

And there is talk about discharging me as an inpatient and possibly starting chemo (if the Ibrutinib is not forthcoming) next Monday.  The chemo routines seem a standard 3 days every 3 weeks cycle.  Part of the decision making for that will depend on my latest calcium levels.

Meanwhile I will have another short course of steroids just to shrink them down again.

So movement and progress and therefore very much (yes, you’ve guessed 🙂 ) …

Onwards and Upwards!


Wednesday 23rd January … Impatient Inpatient

I’m beginning to get impatient now – I want to start the treatment!  I had a visit from  junior member of the team today saying that they would probably start tomorrow – nothing today apart from more fluids.

i haven’t felt too good today, stomach pains (‘gripes’) and a feeling of bloated ness or trapped wind.  It got so bad that I had to have a small amount of Oromorph this afternoon.  Trouble is that opiate pain killers slow bowel movement down which can compound the problem!

But it was good to have visitors this afternoon!  Chris (son-in-law) popped in for an hour on his way home from work, closely followed by Amanda.  Sorry I wasn’t quite as lively as normal.

I am still feeling a bit under par, so I think I’ll settle down early and hope I feel better in the morning.

Onwards and Upwards!

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Tuesday 22nd January…Forwards

I must say that I went to sleep (and woke up) feeling  good.  I think the last few days have been frustrating, patching up the symptoms of the underlying problem without tackling that problem itself.  I know that there are good reasons for that (partly because the treatment plan isn’t clear cut) but now that decisions have been taken, I feel back on track again.

I had a reasonably good night, but noisy at times, but generally slept well, with the ever present IV pump.

Dr Lown and his team came round this morning, with another one of the nurse specialists (Amy).

We discussed treatment plans in general.  There may be problems with Ibrutinib because of previous treatment (and licensing conditions) but there are other options too.  One might be radiotherapy (MCL is very sensitive to radiation) and there are other more conventional chemotherapy protocols that have been developed.  This is a fast moving field – some of the treatment I had in the past is no longer routine today.

It is likely that once treatment starts, it will be as an outpatient, which will be good, but I don’t have any idea how long I will be in here.

I may have another update later, but meanwhile…

Onwards and Upwards!



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Monday 21st January… A new era?

Well, what started as another  ordinary day turned out in quite an unexpected way!

I woke earlier than normal with quite severe stomach pains, almost stomach cramp.  That was followed by a call from a nurse specialist from Southampton asking when I was going for my blood tests – we arranged 12ish.

Katie called to see if I needed anything and said she would take me to Southampton – so all was well…

Until I sat down to wait for Katie when the cramps started again, so I took myself back to acute oncology, slightly worried that something might be obstructed.

Anyway, turns out there isn’t, but could be pressure on my bowel and I was given some pain relief and admitted.

Which was good, but there were some long tri-lateral discussions between Guys, Southampton and me, with the result that my care will be transferred to Southampton from Guys and all the recent reports, scans, tests are being sent down.

Logically it makes sense as friends and family live here, and while I was fine dashing up to London for follow ups 10 years ago, I am that bit older now!  Southampton is a Centre of Excellence for cancer services, and Professor Johnson is a world renowned expert in Mantle Cell Lymphoma.

But Guys and the lovely people there have been part of my life and kept me going for so long, the thought of leaving is a bit of a wrench.  I have been many clinicians and support staff who have treated me over the years, to all I give my heartfelt thanks.

So we continue – Onwards and Upwards!

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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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Saturday 19 January …. Calling Southampton!

Yes indeedy – I am currently an in-patient at Southampton General! For the curious among you, let me explain…

Yesterday I noticed a bit of swelling in my ankles (pitted oedema) so I gave the emergency number a Guys a ring. It turned out that I had had a follow up appointment there yesterday, but I hadn’t been told, so it was suggested that I might like to go up there. Which I duly did – this time with overnight bag ‘just in case’. (Or just in bag).

No great concern, but just as I got back home, I had ‘phone call suggesting I had some more tests at Southampton today, and possibly more fluids as both Creatinine and Calcium had crept up slightly.

Long story sort, I rang Southampton, they rang Guy’s and I turned up here this afternoon to get a blood test and then admitted overnight for fluids! Ho hum.

On the plus side, it is good that Southampton has a medical record of me from my previous admission 12 years ago (and some loosely related records concerning eye treatment) so I am not an unknown quantity. And I hope I’ll be out tomorrow morning.

Meanwhile… 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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