©Jenny Harrod 2019

Days 2, 3 and 4 (dizziness and some minor mishaps)

A couple of good days have been followed by a couple of days with some concerning side effects. I suspect it might be a MS relapse as I have not had any Rebif for over a week. Yet another complaint has been made to Lloyds Pharmacy Homecare Service (LPHS) who has escalated it to their actual complaints team. I also contacted my MS Nurse who is trying to investigate further.

They are supposed to send me a delivery notification e-mail a week before the medication is delivered to my local Pharmacy for me to pick up at my convenience. This system seems to work fine for a couple of months, and then it breaks down and I don't get any deliveries at all. It is important that I have my Rebif as it reduces the number and severity of relapses so to miss it at a time when I am at higher risk of one seems ridiculous. Ironically, during a relapse people with MS are given steroids to dampen down symptoms and with this Chemotherapy I am certainly having some high doses of steroids both IV and orally.

So, how am I feeling now a few days into therapy.

Day 2 (Saturday), I felt pretty good but was advised not to drive for the first few days after treatment so I stopped home whilst Ron went to the 1940's weekend at Havenstreet with 'Daphne'. It was probably the hottest and sunniest day of the year so far, so I suspect I would have struggled walking around the field looking at the exhibits and watching the Spitfires flypast. A wonderful surprise arrived in the post this morning - a beautiful bouquet of orange flowers and lush foliage from my fellow volunteers at the Isle of Wight MS Society. It's lovely to know they are thinking of me and what I am going through. At bedtime thanks to the oral Dexamethasone my blood sugar was over 28 mmols so I boosted the insulin up to 30 units. Despite this it was still almost 20 the next morning.

Day 3 (Sunday). Oh dear, not good. Woke up to grey skies and pouring rain but still intended to go along to join Ron at Havenstreet for a couple of hours in the afternoon - I even put on my admission wristband. I drove down to Aldi to get some milk and suddenly felt woozy and light headed walking around the store. I decided that it would be unwise to drive all the way to Havenstreet so came home. I felt as if someone had taken out my batteries and after phoning Ron to say there was no rush to come home but I was going to bed to rest. Due to the oral steroids my blood sugars were far too high so I upped my fluid intake to try to dilute the levels. Unfortunately this led to a couple of minor incontinence issues when I didn't quite make the toilet in time and I dribbled down my legs and on the floor and toilet seat. Embarrassing, yes, but all part of the delights of MS. At least the fluids did help to get the blood sugar down a bit so I only needed 28 units of insulin.

Day 4 (Monday). Awoke feeling pretty good and my blood sugar was down to 11.6 mmols which was reassuring (even though the ideal is 5 - 7 mmols). Full of good intentions today as felt I would benefit from a short swim. After a phone conversation with LPH a Rebif delivery is coming tomorrow and another to give me a back up supply in a couple of weeks time. I got my new Chariot out of the shed and toddled off to Morrisons to pick up some fruit and veg. Oh no, yet another dizzy spell and wobbly legs as I walked around the store. I managed to load up the basics and rode home feeling frustrated and annoyed that I would have to waste another afternoon at home after all. At least I feel like there is a bit of charge in my batteries today so hopefully I am making some progress. I have an appetite today for a change so will have some pasta and tomatoes (I know it will affect my sugars a bit but no oral Dexamethasone now for a few days so I can hopefully titrate my insulin tonight to counteract it). Hopefully I will feel up to doing a bit more tomorrow and I can restart my Rebif tomorrow evening.

Then on Wednesday I will have to have a blood test before my next IV Gemcitabine 30 mins on Thursday. No idea if I will have more Dexamethasone but if so I will have to ramp up the insulin again for sure. 

This first Cycle is certainly a steep learning curve but I don't really feel that it has been explained very well although I am asking questions as I think of them.

Wish me luck for tomorrow, lets hope I am feeling up to doing a bit more then. 

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