Archive for the 'Hospital Stay' Category

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!

Comments Off on Wednesday 23rd January … Impatient Inpatient

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!



Comments Off on Tuesday 22nd January…Forwards

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!

Comments Off on Monday 21st January… A new era?

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!

Comments Off on Sunday 20th January… and out!

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! 🙂

Comments Off on Saturday 19 January …. Calling Southampton!

Wednesday 16th … Scan confusion and home?

OK, my bad! What I thought was going to be a PET scan turned out to be a kidney function test! So I put myself on nil-by-mouth from 5 am for no reason and missed breakfast unnecessarily!

So a simple test, a radioactive tagged substance is injected into the blood stream and then blood is sampled after 2 hours, 3 hours and 4 hours to measure the elimination rate (and taking into account the half life of the tracer etc).

I am dressed and was ready to walk down to the nuclear medicine department, but I had my chauffeur wheel chair. I have did the trip back on my own, and the first monitoring trip. I do feel a bit wobbly, doesn’t take long to lose muscle tone, so I need to be walking! Off again in 10 minutes.

Just had a visit by one of the team. Going home looking good, but need to sort out the contents of my ‘party bag’ – drugs I need to take home with me, steroid doses etc (can’t just crash out of those, I need to be weaned off them) but otherwise almost packed and ready to go!

Onwards and Upwards!

Comments Off on Wednesday 16th … Scan confusion and home?

Tuesday 15 January … Part 2

Big update deserving a post of its own!

Just had a visit from my consultant, David Welch. Good news is that my blood chemistry is significantly improved with creatinine down to 140 (still above my baseline of 130 which itself is higher than the average) at the Ca is down to 2.73 (not sure of the units!) which is still high but heading in the right direction.

So with IV stopped, and a PET scan scheduled for tomorrow I might me discharged tomorrow afternoon or Thursday morning!

So then what? Good question, well presented!

The mass is responding to the steroids, but there is still some uncertainty over the diagnosis. It could be diffused large B cell lymphoma (DLBCL) or it could be Blastic Mantle Cell lymphoma (BMCL); both look very similar under the microscope, but have different treatment options. DLBCL would be treated with conventional chemo, while BMCL would be treated with a drug called ibrutinib. Histo-pathologists are stareing down their microscopes as I type!

Ibrutinib has proved to be very effective against conventional MCL, but it’s efficacy in BMCL is less well known and it may be less effective – so maybe I am being a guinea pig!

Anyway grounds for optimism!

There are still some questions to think about – do I continue at Guys where they know me, but it’s a long trip for blood tests, or could I have blood tests done locally, or have the treatment and management at Southampton where I have been treated and have a MCL expert in their cancer centre? But I don’t need to decide that yet!

(Oh yes, I repeated the question about how steroids work in stacking cancer cells, and it seems that the exact molecular mechanism isn’t well understood. What is known is that it works! Good enough for me!)

So very much Onwards and Upwards!

Comments Off on Tuesday 15 January … Part 2

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!

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

Next »