©Jenny Harrod 2019

An eventful week - but some good news to end on!

Well, what a week that was, it started off with a Blood Transfusion on Tuesday, followed by the second session of my sixth cycle of Chemo. Apparently I have another two cycles to go and hopefully I shall well and truly given Boris a battering. Then today I had a much feared appointment with my Diabetic Nurse at the GP Surgery. I have made no secret of the fact that I have battled against the Steroids with two types of insulin to keep the Blood sugars under control.

Blood transfusion

I attended the Chemo suite as usual for my 9.30 am appointment on Tuesday, It is a much busier session than my Thursday Chemotherapy sessions and people were even ordering lunches - we don't get offered that on a Thursday, but I think more people have the longer six hour sessions on Tuesdays. I took my cereal as usual and my blood sugar monitor and insulin. I don't normally have breakfast at home until around 11 am so tucking in to low carbohydrate cereal at 10.30 am is no hardship and I take additional snacks in on Thursdays to try to keep my blood sugars stable.


As they were so busy (I still got my normal seat though), it took a while for them to connect me up, initially with a N/Saline flush to the infusion pump. This took about 15 minutes and then the blood was brought up by a Porter. It was checked against my records and my wristband before being set up to run for 2 hours. Because it was for anaemia it was Red Blood Cells rather than whole blood and I was to have 2 units spread over 4 hours. This was much slower than the fluids I am given with my Chemo, but fortunately this meant I didn't have to have Ferusemide this time. However, although I was warned about potential side-effects during the transfusion they didn't mention (and I didn't ask) about any after effects. 

Once the blood was up and running I checked my blood sugar (10 mmols) and I gave myself 5 units of insulin before tucking into my breakfast. I then settled down to watch some of my downloaded content from Netflix to pass the time.

I didn't have any adverse reactions initially, but once I got home I had to go to bed early as was suffering extreme anterior thigh and back pain. I have no idea if this was in fact due to the blood as it did correspond to the usual days I get back pain following Chemotherapy, but might have been worse as I hadn't been as active as I would normally be on a Tuesday. Anyway, I took some ibuprofen on top of my usual plethera of painkillers and used my ceramic Hot 'water' bottle which eased the pain enough to get to sleep.

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A well deserved day off - fortunately the Nurse took my pre-chemo blood test before my transfusion so we didn't need to go to the hospital at all. 

I was still in quite a lot of pain with my back but determined not to waste the day so took some painkillers and decided to take a trip with Ron in Daphne which was something of an adventure. Only on the Isle of Wight would a road have an emergency road closure for....Yes, 'Mud on the road'.

We actually saw a Road Closed Sign well in advance but it didn't say where it was closed and there were no Diversion signs in place. We had to turn around in Arreton Barns and double back for around 3 miles as could go no further using either of the routes to Newport. Still, it gave me a chance to do some videoing of the alternative route via Godshill and Rookley, and I was able, for the first time to set up Google Maps and Directions (I am not good with mobiles and only really use my Smart Phone to monitor my blood sugars, for occasional texting and for banking online). 

We were taking Daphne to a place in Newport that does paint colour matching as there are a few places that just need patching up on her bodywork. However, bladder urgency and potentially incontinence is a real problem at the moment and Ron was told it would take 20 minutes to complete the manufacture of his colour matched paint, I was becoming desperate. Fortunately, it was almost next door to People Matter, a place I had visited before in my role as MS Support Volunteer, and I knew they would have a disabled toilet. They were happy to let me use their new all singing all dancing facility, which unnerved me a bit - especially when it flushed itself when I stood up.

That wasn't the end of my problems though - I wanted to get in the back seat of Daphne for the trip home as there is more leg room, but I couldn't manage it. My right leg was strong enough but I couldn't get my left leg to follow, it was just too weak. I had to make do with reversing my bum into the front passenger seat again. I will look into getting a small step to see if that helps - I have to use a bath seat to get out of the bath sometimes as my left leg won't work then either.

So, anyway I have now added another string to my bow and if we are lost out in Daphne again I always have it with me in case of emergencies so will have route finder and spoken directions (although we can't hear them over Daphne's loud engine noise). You can experience a short burst of our journey here.


Chemotherapy day - session 2 of Cycle 6.


This was a normal Chemo regime day, but I was actually feeling much better in myself as the blood transfusion must be working at last. I have more colour in my cheeks and apart from overwhelming fatigue (more MS than Chemo methinks), feel stronger and able to take on the treatment. I had the usual Ferusemide with the NaCl/KCl +MgSO4 Hydration fluids to protect my kidneys from overload and retention.

However, this proved to be very problematic as I was till desperate for the loo on the way home, so much so that we had to stop at Asda on route where I had a very near miss in getting to their Disabled Toilet cubicle. Why they put them so far from the entrance I don't know, but I am sure I can't be the only one trying to rush through the shop past shoppers wheeling out their shopping scared of losing control en route - I hadn't even got a pad in place at the time. For info, Lake Morrisons are just as bad, but Newport Morrisons, and Tesco in Ryde are much easier to reach - although you need a Radar Key for Tesco's Changing Places Toilet which is next to the Customer Services desk at the front of the shop.

I was still needing the loo approximately every 20 minutes for a couple of hours after getting home - in fact I went to bed so as to be a little bit nearer, although was pretty exhausted by then anyway. I also noticed my hair seems to be shedding more now which is a worry as it is already very thin at the crown. I can't wear wigs as get to hot, so may have to look to scarves and hairbands for now. The Oncologist did say I wouldn't lose all my hair bu that it would get thinner

Friday (today

Diabetic Nurse appointment. This was much dreaded by both her and me. We had fully expected my HbA1C measurement to be raised as a result of my seemingly constant battle with the steroids and the insulin, but ... it was actually lower than my last reading (Pre-Boris!). The HbA1C is the average reading of blood sugars over a 3 month period and it should be below 6.5% (42 mmols).  Mine was 7.2% (55 mmols) this time but was 8.8% (73 mmols) in June so I am absolutely thrilled. 

The only abnormality was my Blood pressure, but it is well known that I have white coat hypertension so she is happy for me to record some home readings to send through to her. But over all she feels I am managing my insulin and blood sugar readings better than if they were trying to intervene themselves. I will continue my spreadsheet records and send them through periodically but am feeling pretty smug to be honest.

So, that was my week, busy but satisfying. Next week I see my Gastroenterologist on Tuesday so will have more news then on the saga of Boris - hopefully she will request another scan.

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