Thursday 1st August… All going well!

I had my infusion of platelets last night

and I’ve just had a visit by one of the team to say that the platelet count is now up at 100 (taken last night after the infusion). However my Hb is a bit low at at 75 (or 7.5 depending in the units) and they want to check on neutrophils just to ensure I’m not neutropenic. Meanshile I’m going to have a unit of blood to lift my haemoglobin levels.

Potent stuff, cytarabine!

My cortisol levels are a big low, but I don’t think low enough to warrant intervention. (Cortisol is one of the hormones that help regulate blood pressure).

The team did consult with a neuro-surgeon, who is quite happy there there isn’t an ongoing bleed, so it’s all good on that front. My WBC is still low and of course long term that is the thing to keep an eye on.

But all being well, I hope to be released back into the wild tomorrow!

Onwards and upwards! 🙂

And a quick update: just seen the consultant, Dr Lown. Long therm plan is to continue the Rituximab/Ibrutinib combination. All being well, I’ll be out tomorrow with a clinic on Monday.


Wednesday 31st July… Guess where?

And no prizes for guessing Hospital! My stay has been a bit longer than I expected – mainly IV fluids and some mineral supplements to correct my electrolyte balance! There is a little concern at my ongoing low blood pressure, so I have a a chest X-ray to ensure I don’t have a lung infection, and some additional blood tests to ensure that my adrenal gland function is OK. Oh yes, and there is a bit of concern about the bruising on my face so I have just had a CT scan of my head!

No results yet, but as I feel quite well, I’m getting cabin fever! (Unconfirmed diagnosis 🙂 )

Anyway, I hope to be set free tomorrow.

Onwards and upwards!

Update: just after I wrote this, I had a visit by one of the doctors.

The CT scan showed there had been a bit of bleeding at the front of my brain – it wasn’t fresh, so it probably happened on Sunday when I fell. However, my platelet count has continued to fall, down from 50 on Monday to 28 today, well below the normal 200-400 range, so I am going to have a platelet transfusion, particularly because of the (slight) risk of further bleeding on my brain. Although everything seems normal, I may have an assessment by a neuro-surgeon.

Bloods were taken a bit late for the adrenal gland test – ideally it should be first thing – so I may have another one (early) tomorrow. And I might be in for a bit longer than another 24 hours while the various tests and assessments are done! Still, WBC hasn’t gone up, so it’s still Onwards and Upwards!


Monday 29 July… Clinic day

So after the ‘excitement’ of yesterday, I rang the hospital this morning to see if I needed more bloods. The answer was probably yes, if only to check my platelet count.

Looking in the mirror, it became clear that the bruising was more extensive than I thought

However no pain or bleeding and I slept quite well, and it will fade in a couple of weeks!

So I turned up at the clinic, where one of the nurses thought I still looked wobbly, took some observations and detected very low blood pressure. Annoying as I had taken care to drink lots this morning.

Anyway, end result was that I was taken down to the acute oncology ward wher I was given (00ml of saline over 15 minutes, followed by a litre over 30 minutes. I’m still there now, but I expect to be admitted overnight for more saline overnight.

So no clinic details, but as ever – Onwards and Upwards! 🙂


Sunday 28th July… unexpected trip to A&E

Not the best way to spend a Sunday, but I think I fainted the morning and on the way down bashed my nose, lip and head. Blood on the carpet and definitely woozy!

On advice I called 999 and an ambulance came and picked me up and took me to A&E.

Not my finest hour!

However I had a blood test while I was there, and my WBC is 10.1! A further dramatic fall and back within normal range.

I’m back home now, feeling like a piece of cod – well and truly battered. I’m not sure if my nose is broken, I think I’ll have to wait until the swelling goes down.

Bit of a fat lip too, but I am elated by the WBC results!

Onwards and Upwards!


Thursday 25th July … Blood test and result

As the title says, I went into the hospital yesterday for my blood test. As I was leaving, I bumped into one of the Nurse Specialist (Amy) so we had a brief chat. She did say she would let me know the results if they were available by 5 o’clock, but no call came!

However I did get a call this morning about 5 minutes ago!) and it’s good news!

White cell count is down to 40 (it was peaking at 280 10 days ago) red cell count is up slightly at 111, and platelets are stable at 150. Normal white cell count is around 11.

Next blood test will be on Monday when I go to the clinic.

Onwards and upwards (or downwards is the case of white cells! 🙂 )


Sunday 21st July… last round!

A lot of sitting around today – things seem to go slowly in hospital on a Sunday so I didn’t have bloods taken until about 11:30, but the reslts came back about 20 minutes ago at 150! I have just started the final dose of chemo and I hope to be away in about an hour!

I had one visitor today, youngest daughter Rachael, and she is coming back to pick me up when the infusion has finished!

There was a slight hitch, there were a couple of drops of liquid on my hand which was probably saline from the flush, but as this is a cytotoxic drug, it was played safe and another canula inserted to complete the infusion.

So good news on the white counts! I’ll be having another blood test on Wednesday, and then clinic the following Monday to see how things are progressing.

Onwards and Upwards!


Saturday 20th July… Eviction!

Well, I suppose it was too good to last, but last night I was evicted from my side room! I can’t complain though, I had no clinical need and they needed it for someone who does (either because they are susceptible to infection or have an infection themselves). So I am back in the bay I was in the first time I was admitted! Home sweet home from home!

I don’t have a bed by the window, but this is the view…

But I had a fairly good night’s sleep. I had a bit of pain round my kidney when I woke, but nowhere near as bad as yesterday, and it has more or less resolved itself as I’ve been moving about. One of my other symptoms, occasional numbness on one side of my face, hasn’t returned, so I’m taking all this as an indication that the cytarabine is working. I’ve just had bloods taken so it will be interesting to see what hey say.

But all being well, I should have the next dose early this afternoon!

Onwards and Upwards!

Update: Just had blood test results – WBC count down from 240 to 200! 🙂

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Friday 19 June… The wait is over!

Yes, I received a call last night to say that there would be a bed available for me by 8:30! I had called the splendid Lymphoma Nurse Specialist earlier in the day to find out what was happening so I knew it was very likely, but it was a huge relief to get the call from the bed manager!

I am currently in a side room with stunning views over the A&E ambulance bay and where there are some very noisy building works!

I had a bit of a restless night, a pain on my right hand side near my kidney became very bad. This was initially treated with paracetamol, but the effect didn’t last so I had som oramorph which did the trick. However it was back again this morning and needed more oramorph. The reason for the pain is thought to be pressure from an enlarged lymph node, so I hope the treatment will alleviate it.

This pain has been present for a few days, and usually resolved itself during the day (only to return at night, but this seemed much worse than before. But again, as I write this, it has gone.

But the really good news of the day came during the ward round (conducted by Professor Johnson). The blood test I had yesterday on admission showed a reduction in my white blood cell count from 270 to around 240. Still way to high, but a positive move and so it is possible that the rituximab/ibrutinib combination is working.

So the plan is to have Cytarabine as a one off short course to get the white cell count down to somewhere near normal levels and continue with the rituximab/ibrutinib regime, with the possibility of Lenalidomide – a drug I haven’t had before augmenting it. (Lenalidomide is a derivative of Thalidomide which I did have about 15 years ago.)

As I write this, I am having the pre-med of raspburicade which is to mitigate against Tumour Lysis, and then the chemo starts.

I am feeling a lot better in myself – it has been a difficult week, and I’m am very grateful for the support I have had from family and many friends. And So it is with more conviction that I can say “Onwards and Upwards” 🙂


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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Tuesday 8 July… Clinic!

It has been quite a rollercoaster of a week, from last Mondays decision to start more conventional chemotherapy, to the change on Tuesday to continue with the rituximab, followed by the admission and administration. I had a bit of an anxious weekend – not exactly feeling unwell, but not exactly feeling on top form – I suspect partly by the electrolyte imbalance. I had occasional heart pain, which is probably due to potassium deficiency. I did go home with potassium supplements which seems to have solved that issue!

Im also slightly down on magnesium and calcium, but it is though that they will resolve naturally.

So it was with some anxiety that I attended clinic yesterday, hoping that the reduction in white cell count would have continued. It was with a sinking heart that I heard that they had gone up, quickly followed by an explanation that it was possibly because that the drugs were flushing the white cells out of the lymph nodes into the blood stream, where hopefully they die off. The good news is that my other blood counts and parameters are returning to normal ranges. This explanation accounts for the spike in white cells when I stated the ibrutinib.

So the plan is to have more rituximab this week, but this time as an outpatient (as I didn’t have an adverse reaction) and another CT scan to see what is happening with the lymph nodes.

Time for a quick thank you to middle daughter Katie who took me to, and collected me from hospital last week, and all my other very special friends who have supported me through one or two dark moments, and accompanied me to the clinic yesterday. It means a lot and I am very grateful.

So with the current plan in place (and others in the background, I am continuing Onwards and Upwards!

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