Archive for the 'Hospital Stay' Category

Thursday 10th October … just one more thing!

Just as I thought I was starting to feel better, I noticed a rash on my leg, which the doctors think might be an outbreak of shingles! That would explain why today is a bit of a lethargic day! Still, I’m in the right place as I’m having a large dose of IV acyclovir (which I normally take prophylacticly as a tablet) over 5 days to knock it on the head!

In other news, my WBC is down to 8, which is good, not so good is that my platelets and neutrophils are down too – so a platelet transfusion later (I really am overdrawn at the blood bank!) and maybe GCSF to boost the neutrophils.

I stopped the Ibrutinib yesterday and start Lanlidomide tomorrow. As I mentioned in an earlier post, this is a maintenance therapy to keep everything controlled without large doses of cytarabine.

I went for a little walk yesterday, including a flight of stairs. I managed OK, but felt a bit wiped out afterwards – it’s frightening how quickly loss of fitness and muscle tone starts.

I expect to be in hospital for a while yet, but provided the Lanlidomide lives up to its promise, it is Oneards and Upwards! 🙂

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Tuesday 8th October… Still in hospital!

It’s been a week since I last posted – a mixed week with good and not so good days!

I finished the chemo a week ago and the WBC count is falling nicely, but the side effects have been difficult – loss of appetite, sore and drymouth and general malaise. Some days have been better than others, although as time goes on I am feeling better. I’m certainly sleeping better for the last few days.

The dry mouth and throat has made swallowing some of my meds difficult, although where possible they have been switched to soluble versions. The PICC line has been good making IV infusions and taking blood much easier.

My appetite is returning slowly (I was threatened with a Naso/gastric tube!) but mainly soups and soft food with some high calorie supplements (Scandishake and Fortijuice) which has kept my weight up, although I do have a bit of muscle wastage.

The next question really is the maintenance therapy and the option being discussed at the moment is Lanlidomide – I think I have mentioned that it is a Thalidomide derivative and can boost my immune system to get my donor lymphocytes working again. Meanwhile the transplant team here are in touch with the Antony Nolan Trust to try and yes k down my donor, a nd if possible harvest some more lymphocytes.

And hovering in the background is the possibility of CAR-T cell therapy, although that is only just being developed for Mantle cell lymphoma and there are currently no trials planned. The team know I am a volunteer! 🙂

I’m not sure how long I’ll stay in hospital – looking after myself might be a bit challenging at the moment, simply because I am a bit weak, but once my strength returns I should be OK!

So it is a case of Onwards and Upwards – just a bit more slowly than I would like!

(And thank you for the comments on the last two posts – I have now replied to them!)

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Monday 30th September… Rough weekend



I thought I’d start with another calming photo from the local park as the last 24 hours have been a bit rough. I think I’m hindsight the diureticS were not a good idea because while the oedema reduced slightly, I woke up with a mouth as dry as a bone and unable to eat or drink anything. Eventually I managed little sips of ice cold dilute squash, and I was given more IV fluids so I am feeling a lot better now.

It seems I have also devolved a Urinary Tract Infection, which while causing me no discomfort does mean a move to a side ward which is far more peaceful than the main ward! Little things!

At the moment I’m receiving g the (th load of chemo to be followed by a blood transfusion. I’ve also had on the Scandishake high energy milk shakes which I hope will provide some nourishment as conventional food is “unpalatable” 🙂

Anyway, one more round of chemo to go so Onwards and Upwards!

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Saturday 28 September… Back on the ward!

The days after the blood transfusion were pretty good and managed some walks in the local park

However by Saturday I was flagging again so I attended the Monday clinic fully prepared to be admitted – and I was not disappointed. My WBC when it came back was around 300.

I spent a night on the acute oncology ward befor moving back to D3! The plan is to have another more intensive course of IV chemo to get the white cells under control as the sub-cutaneous dose was not succeeding, so to make life easier, I have been fitted with a PICC line (a longer term version of a canula that hours into a deep vein in the arm and is fed through to a vein just above the heart making taking blood samples and administering IV drugs much easier. Just as well as I developed a lung infection and the antibiotics go straight into the line!

I had the first dose of chemo on Thursday and the second and third today. I get the next two on Monday and the last on on Wednesday.

The good need is that after one dose the WBC has started falling. Less welcome is the dry mouth and loss of appetite although I can get high calorie supplements. The oedema on one leg has got slightly worse but some support stockings and diuretic drugs may help that, as will an improvement in kidney function – already noted as a result of the fluids given. I’m also having an ultrasound Check on my legs in case there is a hint of DVT.

So to sum up, I might not be a very well bear, but I’m in the best place and I’m still alive and kicking – so Onwards and Upwards! 🙂

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Tuesday 17th September… clinic time!

I had my clinic yesterday, the first one since I had the cytarabine last week. To cut to the chase, the red cell count was down which explains lack of energy and stamina, but I’m having a blood transfusion later today which should help things.

My white cell count was about the same as last week, which was a bit disappointing, but it does indicate that the chemo has halted the progression and it is only a week since I had the chemo, so the hope is that they will start falling.

My kidneys are grumbling a bit, so there is a possibility that I might be admitted for a short time to sort them out. But generally good news with a treatment plan!

It was a long day though. I had to have bloods done and they weren’t analysed when I saw Professor Johnson. The next message was that one sample had clotted befor analysis, so I had to have another sample taken. And then I had to have yet another for crossmatching with the transfusion blood. All in all I was in the hospital for seven hours. Quite tired when I got home!

But overall, grounds for optimism so Onwards and Upwards!

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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! 🙂

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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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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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