Saturday 17th August … Back on D3…

Just seems I can’t keep away from D3!

But it has been a couple of days since I last posted, so let me fill in the deatails!

I was moved to my side room later on Wednesday, very nice too, but then the swabs came back as clear. I was told that it was likely I’d get one night in there, but alas it was not to be and I was moved up to ‘home from home’ back on D4.

My blood pressure stayed a bit low for the the last three days and my temperature remained variable, so I remained on the IV fluids and antibiotics until Friday, when I switched to oral antibiotics.

I had a ward round on Friday and the plan is to restart the ibrutinib as my white cell count is starting to creep up. However ibrutinib affects platelet count and as I had the bleed after my fall, a blood clotting specialist is being consulted. However I may be out on Monday.

Meanwhile, my parents have come down and I have had several visitors – all much appreciated!

I also had a visit from an occupational therapist (Linda) and we had a chat about the future with my impaired eyesight. We went for a walk down the corridor, which wasn’t difficult in itself, but anyone approaching from my front left hand side suddenly disappears when the are a about three feet in front of me. Similarly, any one overtaking me on my left side doesn’t appear until they are about three feet past me. Something I will adapt to, I’m sure. Pi am also getting some visual disturbance as my brain tries to make sense of the missing information. Just to restate, this isn’t an eye or optic nerve problem, but a visual processing issue.

Longer term I need to consider the loss of my driving licence on my social life and steps I can take to mitigate the impact.

I still feel quite tired, but I don’t expect any change there until I get home.

So, on many levels, I need to continue to progress Onwards and Upwards, but lots to think about! 🙂

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Wednesday 14 August… mixed news

Last night, just before I went to bed, there was some concern that my nosy looked a bit runny, so before I could say ‘culture’ two swabs were taken, one from my nose and one from my throat. This morning I was woken by the sound of rusting paper of plastic sheets. And when I woke I saw my bed was surrounded by what looked like plsstic poster art screens. Next minute a nurse came in, wearing a plastic apron and mask, to explain that I was in isolation in case I had ‘flu. “A bit over the top” I thought, looking at the gaps between the screens and the gaps at the top, so I couldn’t see how more effective they could be than the curtains, apart from the fact that they would focus attention on anti-infection precautions. It was (good news) explained that I would probably be moved to a side room.

I was also pleased but disappointed that my vision was neither better nor worse than last night.

As if on cue, a neurologist arrived to explain the scan results. It was a tiny stroke – or infarct, blocking one of the veins in my visual cortex, depriving brain cells of oxygen, killing them. While there is a small possibility of improvement, the visual cortex doesn’t repair itself very well, and if there is any, it won’t be apparent for 9 to 12 months. The most significant effect is that I cannot drive, possibly for the rest of my life. This has been pre-occupi g me for much of the day, solutions and the limitations this might impose.

Fortunately I had a visitor just after that, looking very fetching in his free plastic gown and mask!

I was scheduled to have an outpatient appointment with the eye (!) outpatient department this afternoon, so I assumed I would be taken down there (one floor below). However I was moved to my side room and by appointment time, nothing had happened so I rang them to explain the situation. I was left with the impression that they would sort it. By 4:30 nothing had happened so I rang again to be told that there was no record of my earlier call, but someone would get me – but nothing happened and there is only so much I can do!

About an hour ago I got the news that the swabs were negative and that I was no longer in isolation. Good news but the better news is that I can stay in the side room for at least another night, so I might get a better night’s sleep.

I think I’m moving Onesrds and Upwards, but the loss of the ability to drive is a bit of a blow. Still, I’ve overcome worse and right now, I could murder a beer! 🙂

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Tuesday 13 August… And another thing…

It was a funny day for me yesterday, a couple of temperature spikes (more antibiotics) and a spell of feeling lethargic, but I went to bed feeling quite well. The person in the bed adjacent to mine is a snorer, but a set of earplugs sorted that!

However, my midnight observations showed that my oxygen saturation was down at 91% so I was started on a low oxygen flow (equivalent to about 25%) which brought the sats up to the 95-96% mark.

Then this morning I noticed that my vision didn’t seem right – I had been experiencing some visual hallucinations, but had thought nothing of it (textured surfaces, imagined 3D objects and things like that)

I did a quick couple of self tests and discovered that I had lost all peripheral vision in my left eye, indicating retinal or optic nerve damage. Not good.

Having reported this, I was due my heparin injection, but since one of the causes could be bleeding, I declined that, but had some paracetamol as an anti-inflammatory.

Further checking showed that it was my left side (not just eye) that had the problem, indicating a possible visual cortex problem.

The doctors came round and suggested that this was more likely, possibly cause by pressure on that part of the brain, possibly from a bleed. They thought refusing the heparin was a good move! Anyway, they arranged for me to have an CT scan to see what is going on, with a referral to the neurosurgery team. They also said that it may well resolve spontaneously.

I’ve just had the scan, so I’m not expecting results today (although I’m always happy to be pleasantly surprised!). My eyesight is unchanged from this morning (no better or worse) so we will wait and see. I did have a good chat with a final year medical student who wanted some practice at clerking in patients.

So while it may be Oneards, there doesn’t seem to be a lot overall upwards movement! But then, the infection has been dealt with so that’s good, and the next thing to do is to determine why the Sats dropped, which might also have been infection related – so we’ll go Onesrds and Upwards down that path! ? (there is always a positive if you look hard enough!)

UPDATE: Really rapid turn around on the CT scan results. It looks as if there has been a tiny blood clot in that area of my brain causing either some vey local damage or a pressure point. The clot may resolve itself spontaneously (be re-absorbed) or it may need a clot busting drug to shift it. The question will be if the damage repairs itself (if there is damage) or my vision returns to normal). Not the best news, but by no means the worst!

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Sunday 11 August…Just as things were going so well!

Last week was trundling along quite well until I got to Friday when I started to feel a bit lethargic. I didn’t have any energy at all and didn’t get up until mid afternoon.

On Friday night I developed a splitting headache – really intense – and not feeling at all well.

So I ended up calling the acute oncology number in my phone, only to realise it was the one for Guy’s! However after they called back and my mistake was realised it only took a few minutes to get though to Southampton. By that time I could focus very well and I had sent some completely gibberish test messages! (No change there, some might say!) My temperature was creeping up and my blood pressure was creeping down, neither very good signs

But the end result was that they sent an ambulance to pick me up and take me into the acute oncology department.

Once there, Iwas diagnosed with neutropenic sepsis and started on intravenous antibiotics. My blood results showed my neutrophils at 0.2 (very low) Hb at 850 pretty low) but platelets we’re back at 300 which is well within normal range. Best news was the my white cell count was still down at 5.5.

The afternoon and evening were enlivened by the arrival of Tom and Jon housemates from Uni days) who had planned to pop down and see me a few days ago. We had been planning on going out for a meal, but it was not to be (well, they did, I had meatballs the consistency of cannonballs with hard pasta in indifferent sauce! Hope you enjoyed your Nepalese Curry boys!!). Unfortunately Martin, the last of our quorum was elsewhere and couldn’t make it. They were kind enough to come back and tell me how delicious it was!

This morning started with more bloods, more antibiotics and a move to C4 ward. Crumbs, it all happens in there! One elderly man came in demanding breakfast saying that he hadn’t eaten for a day, and the man opposite maysaid that he hadn’t eaten for two! I think there had been problems, but I don’t know how extensive.

Anyway, while one of the nurses was sorting that out, she let slip that there was a special breakfast menu! So I patched on to that and had scrambled egg, sausage, bacon and hash browns! It wasn’t brilliant, but it made a change from rice crispies!

Tom and Jon came back in morning to tell me about their breakfast (“sumptuous buffet” I think was Jon’s description!), then we had the ward round. Which was good news!

Since last night the beutrophil count has gone up to 0.8, which is getting to the border of safe territory! I might get some GCSF (long term readers will recall that is Germ Cell Stimulating Factor to them a helping hand.

I don’ know how long I will be here, my blood pressure quite low lying down, and drops quite a lot when I stand, so I suspect a few more days.

But all in all, I think it’s still Onwards and Upwards!

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Tuesday 6th August… Post clinic

Yesterday was clinic day, but I hadn’t been given a time, soon fixed by a phone call, but it was an early one that didn’t give me time to give blood in advance. So I arrived at the allotted time, gave my blood sample and waited to be seen. And waited… and waited… and waited! Eventually after 2 1/2 hours I got to see a new consultant (to me).

To be fair, I think they were waiting for the results of the test. So Haemoglobin was slightly up, platelets are stable and the White cell count was slightly down. More concerning was that my neutrophil count was down, so I am close to being neutropenic, and my creatinine and albumin levels are up. So I need to drink even more water.

I was told to stop taking the ibrutinib for the time being to give my blood and immune system a chance to recover, and that will be reviewed next week, with a view to having more rituximab, ibrutinib and the possibility of lanlidomide (second generation version of thalidomide, (a drug I have had before) which boosts the immune system.

So a respite from some of the drugs, then Oneards and Upwards!

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Saturday 3rd August… And home!

Yes, made it! After a day of nothing much yesterday, I finally saw the doctors and was allowed home! My blood pressure is still low, as is my red cell count and platelets (although both improved after the transplants) but as this is about a week after the cytarabine, this is expected to improve. I am borderline neutropenic, but that again is expected to improve spontaneously.

The blood test showed that cortisol levels are very slightly below normal, but not thought to be significantly so.

I did sleep well last night though – good to be back in my own bed!

Clinic on Monday so we’ll see what the blood tests show then!

Onwards and Upeards!

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Friday 2nd August…. Home? (I hope!)

I can’t quite believe I have been here for a week! Definitely time to go home!

I had my unit of blood last night

Much the same as the platelets, but a much darker colour! However the transfusion was not without its moments and an hour in to the three hour transfusion I suffered ‘Canula failure’!

Blood is (as is said) thicker than water, and I supposevthe infusion pressure was a bit higher and as the Cannula had been in place for three days it had become a bit displaced (it was in the crook of my arm – not the best place) and started leaking.

It didn’t take long to replace it (in my forearm) and the rest continued uneventfully.

And I had a drip free night last night! I have had an early morning blood test, so I hope that will give a more meaningful cortisol level result, and pending thatvand the ward round, I hope I’ll be going home.

My lip is still a bit swollen and I keep dislodging the scab, but the other cuts are healing nicely and the bruises are slowly fading.

So Onwards and Upwards (and homewards!) 🙂

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Thursday 1st August… All going well!

I had my infusion of platelets last night
Infusion

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.

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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!

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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! 🙂

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