Archive for September, 2019

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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