The final onwards and upwards…

To all friends, family and avid readers of ‘Peter’s Hospital Diary’,

At 1am on 18th October, my Dad took his final breath as the National Anthem played on the BBC World Service. Typically, in true Dad-style he went out fighting…

Optimistic and stubborn to the end, he received his last round of radiotherapy just that morning, assuring us we still had Plans D, E and F to go!

It was unexpected how quickly this came about but it was a calm and peaceful end to his battle. As he said in his final hours, ‘no one can say I haven’t gone out fighting’.

We find solace in the fact that he was surrounded by friends, family and wonderful hospital staff; knowing in his last moment just how much he was loved.

We are all so proud of the unwavering fight he gave and his dignified acceptance and tranquility.

Funeral preparations are underway, following his strict instructions, and we will be sharing details with friends and family after the weekend.

In the words of my Dad; ‘Onwards and Upwards!’.

All our love, Peter’s family.

We’d love to hear your thoughts, memories and anecdotes, or if you would like further information please email onwardsandupwards@swanmore.net

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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! 🙂

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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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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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