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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! 🙂


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!)


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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Wednesday 18th September… blood!

I received my two units of blood yesterday! I was feeling pretty rough when I went into the hospital, but I was soon canulated and the first unit started over a period of two hours. No adverse reactions and my observations improved of the course of the transfusion – increase in blood pressure, reduction in pulse rate and in respiratory rate.

So as soon as the first was done in went the second, again without any drama.

The difference was obvious when I got up to leave! While there may not have been a spring in my step, I certainly found walking easier and o felt more alert! Even my appetite improved!

One thing the nurse said was that many people noted the improvement the next day however I haven’t noticed much change from yesterday. That might be because I didn’t sleep that well last night because of a bit of back pain.

I had a bit of a scare this morning, waking up feeling hot and clammy and a temperature of 37C – a level indicating possible infection. However once up and about, that started falling and is now at my normal of about 36.2C.

So with clinic next Monday at an unspecified time, 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 14th September… bearing up! (Grrr)

I had clinic last Monday and took my overnight (or strictly, over week bag) with me as I was expecting to be admitted for mor cytarabine on the ward. However I was told that a better solution was to have more Subcutaneously as the release profile is gentler and the individual doses are lower. The normal course is 5 sessions on consecutive days, but I was to have 2 on Tuesday and Wednesday.

I didn’t get my blood results in the clinic, but they were phoned through and showed an increase in WBC and a slight decrease in Hb. Not brilliant news. I am still lethargic with low energy levels, and a planned trip way had to be postponed 🙁 the third one this year.

I have also been in a bit of back pain which I think is pressure related from my gut as it seems to come on about 6 hours after eating. This gradually go worse as the week progressed until the last two nights when it has been milder and shorted duration! Progress??!!

The chemo itself was a doddle – taking 30 seconds for a sub-cutaneous injection on my abdomen. The hardest part was summoning the energy to walk to the outpatient department!

I have my next clinic on Monday so I hope there will be an improvement in blood chemistry and we can move back to a less aggressive regime.

Once again I am indebted to the supportive friends who have taken me to and from the hospital, and sent me messages of support during the inevitable dark moments!

But I’m feeling chirpier and better in myself, so I’m more than happy to say (go on guess…)

Onwards and Upwards!

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Friday 6th September… In, out; In, out….

It is a week since I last updated the blog, as several of my loyal readership has pointed out! 🙂

You will recall that last week I was expecting to be admitted on Monday, after clinic, for some more cytarabine to get my white cell count down, but at a reduced intensity so that I get the benefits without too many adverse side effects.

So I duly turned up clutch my blood form and a large overnight bag at clinic on Mondays, having had a lift in from a friend.

I had the consultation where we discussed treatment options, then to my surprise suggested that I have the cytarabine as an outpatient, and as a sub-cutaneous injection rather than an IV infusion, with a follow up in two weeks. Sub-cutaneous apparently gives a smoother release of the drug, unlike IV that causes a large spike. I did suggest a blood test after a week, but that fell on deaf ears.

So a quick phone call to get a lift home and to arrange a lift in and I went home.

Next day I turned up for the chemo which took under 15 minutes from arrival to departure, giving me time to
Pick up a ready meal and some supporting meds, and it was home again.

My middle daughter popped in on Wednesday to see how I was and to take me shopping. I had been feeling a little wobbly, but we went anyway, however when we got to the supermarket and into the car park, she thought I looked to unsteady (I did feel light headed) so she took me home and then did the shopping for me, so I have more supplies for a while. It is perishable items like milk and veg that are likely to be the problem.

Apart from that, I have been OK this week, still a bit lethargic, and not sleeping to well because of twinges from a couple of enlarged lymph nodes pressing (I think) on a nerve.

I did ask the lymphoma nurses today what the blood results were – generally unchanged apart from the WBC which had gone up again :(. However, to my amusement, she said that it had been suggested that I have an interim blood test next week!! so as I have some spare blood forms, I’ll be doing that!

Meanwhile I have been researchingg any assistance I might be eligible for as a visually impaired person. I think I need a formal eyesight test to quantify the peripheral vision loss, so I’ll be looking into that later today.

I’ll be interested to see next weeks count, so I hope it will be Onwards and Upwards!

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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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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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