Friday 30th August… Another Strange week

I have just been reminded by one of my readers that it has been a week since my last post!

It’s been a week of adjusting and, to some extent, recuperating.

I went into hospital on Wednesday For the blood test and a chat with one of the Nurse Specialists, particularly a couple of concerns as one of my ‘dodgy’ lymph nodes seemed to be getting bigger. I also assured her that I was free for the rest of the week if any treatment was planned.

The results were rung through later that afternoon: Hadmoglobin was about the same as before, neutrophils were up, platelets were also good, however my WBC is stillcreeping up, although not by as much as I had feared. Professor Johnson had reviewed Thame and had no immediate concerns, but the plan is to admit me for two days for a reduced course of cytarabine, which it is thought will give a good response while reducing g the side effects.

I can’t help thinking that it’s a pity that we had the bank holiday as that has delayed things – I was hoping to have more retuximab, but I suppose a rapid de-bulk (again) May make the rituximab/ibrutinib combination to get to work immediately.

Meanwhile I have been adjusting to the loss of peripheral vision. I managed OK in hospital until I was leaving. I was walking along the left hand side of the corridor. scanning for obstacles when I suddenly stumbled (luckily no fall).

I looked round expecting to see something on the floor I had missed, but actually a porter had pushed a(loaded) wheelchair in from the left, just behind me and I had tripped over one of the front wheels. I just didn’t see him on that side.

However I have had a small triumph today. As trains are likely to feature in my travel and activity plans, it seemed like a good idea to make sure I was IK getting to the station. So I tried it – and the first time I have ventured out for any length of time.

I’m delighted to say that I managed OK, and while taking it gently, it took about the normal time. There weren’t many people about (they are a problem as their movements are unpredictable!!) so if I was getting of a train with crowds, I’d probably wait a few minutes for it to disperse.

But it was a useful test, hugely reassuring and confidence building, and it was good to get some gentle physical exercise.

I have been very grateful to friends who have been to see me and take me out for lunch. It has been very much appreciated and made a big difference. Thank you.

So I have coped this week and I feel better in myself and a bit more optimistic about travel. I am still thinking about an electrically assisted bike, but I still have some visual disturbances (false images) which should subside, so I may wait a while!

But overall, I am more optimistic so… Onwards and Upwards! 🙂

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Friday 23rd August…Taking stock – again! :)

It’s been a strange week, but really good having my parents visiting and helping me out.

Yesterday I went back to the hospital to pick up the Ibrutinib and have a blood test. I also took the opportunity to chat with one of the clinical nurse specialists (Amy) abut some of the otherside effects (i have some lymphoedema in my ankles) so it was suggested I wear the compression socks for a while, and confirm my next clinc will be a week on Monday (this Monday being a Bank Holiday)

My blood results camee through and were rung through to me by Amy. No real change apart from my WBC which is still creeping up. However she referred them to Prof Johnson and she rang back later to say that he wasn’t concerned. It could be a temporary side effect of re-starting the Ibrutinib.

However, as its over 10 days until clinic, and I have some blood test forms, I rang Amy this morning asking if it would be a good idea to have a blood test next week, just to keep an eye on things. She agreed tat it would, so I’ll go in next Wednesday. Got to be pro-active! 🙂

My parents have just left, having stocked up my fridge!

Going out is a bit challenging, partly through lack of confidence and I need to develop coping strategies for the loss of peripheral vision. Thee are two problems, one is that anyone overtaking me (on foot) on my left hand side doesn’t appear until they are about three feet ahead when they appear out of nowhere – very disconcerting!.. The other is people who suddenly disappear as the move into my blind spot and I then bump into them. Its all a question of situational awareness! The other thing is to ensure I close cupboard doors as I might not see them open and bump into them. I guess I need to move slowly and do a good scan of an area for potential hazards. All takes time.

But overall, and with cautious optimism, Onwards and Upwards! 🙂

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Wednesday 21st August… Escape!

Yes, I managed to escape on Monday afternoon and I am now at my home with my parents visiting (and looking after me!).

I think I slept for over 10 hours on Monday night, and felt a lot better for it. I still feel a bit tired, but my Hb is still quite low and my mouth is still quite sore.

We have been out shopping, which has been OK, although the lack of left hand side peripheral vision takes some getting used to – something Im sure I will adapt to eventually. Its a question of situational awareness, and remembering where objects are although I cannot see them. But my conscious brain is already compensating for that, by generating a false image (as it does anyway) but the problem is with objects that move unpredictably (like people!) as there is no peripheral information available on the LHS to update those images. It’s just going to take time.

But it’s good to be home again. I went into the ward yesterday to pick up my “party bag” of which the most important was the ibrutinib. Alas it wasn’t there, and it wasn’t until I got home that I realised it was at the outpatient pharmacy. However Ihave to go in tomorrow for a blood test, so I can pick it up then – I have enough for another four days.

So a pretty grim week – the discharge notes did confirm neutropenic sepsis – and the minor stroke really was not welcome, as it is likely to have a major impact on my life (unless I do get some improvement over time), but I’m still here – and I hope moving Onwards and Uwards! 🙂


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. I 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! 🙂


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!


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!


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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