Never walk, run, crawl or drive faster than you Angel can fly!

Hi, My name is Jenny and this is my "Auto-Blography " a combination of a Blog and an Autobiography.   

I have not lived a particularly exciting life (yet!!) but if one person finds a little comfort or inspiration here then it has been worth it.

Enjoy your visit, I will try to update my blog as often as possible so you can follow my journey with Multiple Sclerosis and now in 2019 Liver Cancer too and see how I deal with the trials and obstacles they place in my path.

Feel free to leave Feedback, but please keep it clean and non promotional.

Jenny xx

Blog Posts

Scanned and awaiting result!

So last week Friday 30th August, I had a CT scan which shouldn't have been a traumatic experience but it was. Not the actual scan itself but the hour long wait before, the jug full of water I had to drink to ensure I had a full bladder, and then the additional half hour wait afterwards before they r…

Read more

Loving Life - Positive Mental Attitude!

So, OK, yes its been a while sorry about that.

I have spent the last couple of weeks worrying about my Mum. I can't phone her as she won't have her hearing aid in, probably won't answer the phone anyway and any high volume conversation only serves to inform the whole of the Close about our bu…

Read more

A few more symptoms and a bit of pampering!

Sorry, not been on for a while but it has been a fairly quiet few days and is my rest week from Chemo. 

So, how have I been? Well, I have had a mild background headache for a few days which is new and my teeth 'hurt'! That sounds odd I know but it is not as severe as actual toothache, but I feel…

Read more

Two days post Chemo and the Treacle legs have hit early!

OK, 'Treacle Legs' - a term I suspect everyone with MS can relate to. It's like walking through treacle with legs being heavy and a fear they will give way completely. Certainly not an excuse for high blood sugars!

Really upset they hit today though, I had rested this afternoon in readiness to go…

Read more

New month same routine, except ...

Well it’s the second session of Chemo tomorrow and far from getting a handle on it, it is throwing up all sorts of problems.

If I touch my limbs or chest I feel like I am bruised or kicked in the stomach (or maybe like I have done a hard workout). 

But there has been another potentially mor…

Read more

Well that wasn't scary at all was it?

Well, its officially true, pride does come before a fall and are often the results of the actions of a Fool!

I was so pleased that I had managed to keep my blood sugars below 20 whilst taking the oral steroids (Dexamethasone), that is until today. Then if you pardon the expression it all went t*t…

Read more

Day 1 Session 2 - last time was just a tester dose.

So, I found out at my latest outpatient's appointment with the Oncologist that my first days Chemotherapy was a low dose to see how my MS would respond and if I could tolerate it. I wish he had told me that before I started it as I thought it was pretty much an easy ride. 

That said, yesterday I…

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Days 12 - 16 - Back, Bladder and Blood Sugars!

So here we are in my week off Chemo and days 12 - 16 which have been eventful in a number of ways.

Monday 12th

I spoke to my Senior Diabetes Nurse (Jen now) who, having seen my Blood Sugar results, suggested we should once again concentrate on just having the Lantus insulin at bedtime to get m…

Read more

Days 5 - 7 and a Relapse (maybe)

So I have survived it past the initial shock to the system from all the IV fluids, the oral steroids and anti-emetic medications.

Certainly Monday and Tuesday were days where I felt someone had taken my batteries out and left me totally drained, so I even spent Monday in bed to try to recharge fo…

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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 complain…

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Jenny's Blog

Scanned and awaiting result!

So last week Friday 30th August, I had a CT scan which shouldn't have been a traumatic experience but it was. Not the actual scan itself but the hour long wait before, the jug full of water I had to drink to ensure I had a full bladder, and then the additional half hour wait afterwards before they removed the cannula needed to inject the contrast medium.

The actual scan itself took just 5 minutes but I felt rushed and it was apparent the 3 staff members were from the new intake of scanner operatives. They all tried to introduce themselves at the same time, were speaking so fast I couldn't keep up with what they were saying and I was glad when it was over. Poor Ron (who never takes anything to do - his fault obviously) had to sit in the waiting area for approx 2 hours on possibly the most uncomfortable chairs in the building.

Anyway, now I have to play the waiting game again. I saw the Oncologist on Wednesday but the result wasn't back then so I went to my Chemotherapy appointment on Thursday as planned. Cycle 4 Session 1. Hopefully 'Boris' has been shrunk and I will be in remission.

I also saw my Neurologist this week, and he was astonished at how well I was looking, and that the Chemo hadn't caused any drastic effects to my MS. I told him about my experiences with Lloyds Homecare Delivery and he is going to speak to the Coordinator in Southampton about it, he also says I am definitely not the only one who has sent them a list of complaints as long as my arm. He is extremely concerned that others who cannot safely miss doses of their medications are also being missed out on their deliveries. Fortunately, although I have probably missed a months worth of Rebif since staring Chemo it is unlikely to have any impact in the long run - my immune system is pretty low already. My big concern is avoiding people with infections. I will have a flu jab as soon as it is available and only swim on Saturdays at the Club  for the time being.

With this week being my last session of Chemo, for a while at least, I am after ideas of what gifts I could take in for my extended family of the staff in the Unit there. They are always happy and supportive but I want to give them something different to the sweets (that they had out to patients anyway - except for diabetics like myself). I am thinking of putting together a hamper of goodies like hand creams, lip salve and maybe foot products so they could have one each - I feel a trip to Home Bargains coming on. 

Wish me luck with the scan result - as it stands my next Oncology appointment is on 25th but they said this may be subject to change. In the meantime the battle between insulin and steroids continues!

 

 

Loving Life - Positive Mental Attitude!

So, OK, yes its been a while sorry about that.

I have spent the last couple of weeks worrying about my Mum. I can't phone her as she won't have her hearing aid in, probably won't answer the phone anyway and any high volume conversation only serves to inform the whole of the Close about our business!

Fortunately the  'Grown up' member of the family - my Student Nursing Niece, Bryony, managed to pass a message to her to prod her into action and prompting an email from her letting me know she is OK. 

I know the family would probably close ranks to protect me from any bad news regarding Mum - although whilst she was in hospital having a heart valve replaced last year and I had my diagnosis of cancer, I was guilty of the same thing, but they probably don't seem to realise that this is counter productive. As number one daughter it is my job to worry about Mum, even if I am too far away to do anything I still care and need to know if there is anything wrong, especially as you can take the girl out of Nursing but not Nursing out of the girl!

I am still having Chemo although with fingers crossed hopefully the CT scan booked for this Friday will show Boris has shrunk and I will be in remission. Then it is just one more cycle of Chemo (2 sessions) before hopefully getting back to some sort of normality and rebuilding my immune system before the season of coughs, colds and flu. 

Next week is a busy one - seeing my Neurologist and having a blood test on Tuesday, Seeing the Oncologist - for hopefully some positive news, on Wednesday, and then Chemotherapy again on Thursday.  

I was so relieved to hear from my Mum that I immediately fired off another email to her packed full of news. I think she reads this blog and I know she sees some of what I put on Facebook so she might well know some of it anyway.

  • I told her about my experience with a van driver whilst out on 'Jen Hur' ("You should have a licence to use that on the road!") and how the IoW community got behind me when I posted about the legalities of using an 8 Mph scooter on the road. It is insured and I hold a V5 registration document and number plate for it as well as a full driving licence which I have had for 40 years. This is not a requirement to drive a Mobility Scooter but does show a modicum of common sense regarding the Highway Code.
  • I mentioned my recent efforts with Make-up with my shaky hands and the lovely bouquet of flowers I received today, just for sending some before and after photos (see above for After pic) to the Beauty Boutique where I brought the make-up from. 
  • I told her how well I feel in myself (despite the frustration that my legs and blood sugars won't do what I want them to).
  • I explained how everyone I speak to says how well I look despite what I am going through.
  • I told her about my travels on Jen Hur locally to Aldi, Morrisons and Shanklin, and my hope to go along the revetment from Shanklin to Sandown at the weekend in the hope of seeing our newly released White Tailed Sea Eagles. 

Anyway, I having written all that I felt so blessed, and reassured to find out that she (and Asbo the Cat) were OK, that I ended my email to her as follows...

"You could say, (that apart from having Chemotherapy of course),

life is good and I am Living the Isle of Wight Dream!"

Now, if my new Rebismart device is actually delivered tomorrow (don't ask where it ended up last week it certainly wasn't here!)

all will be well in the world.

 

A few more symptoms and a bit of pampering!

Sorry, not been on for a while but it has been a fairly quiet few days and is my rest week from Chemo. 

So, how have I been? Well, I have had a mild background headache for a few days which is new and my teeth 'hurt'! That sounds odd I know but it is not as severe as actual toothache, but I feel my gums are may be shrinking - they are certainly receding despite good personal dental hygiene. I was actually warned that I might have a sore mouth and today (Sun), since I have had my dinner it seems to be the case. I have some various oral analgesic gels which will hopefully help to ease it, and I am certainly not one for spicy foods which I suspect would worsen it.

I am a little concerned that I don't have a Dentist now though, one of my many phobias is due to the electric shock like sensations I feel throughout my body when anything metal touches my teeth - I suspect this is more related to my MS than anything else, but it means a scale and polish is like torture  Despite this I have never needed  a single filling or tooth extraction in my 59 years on the planet (Touching wood as I type that boastful statement), maybe visits to the Hygienist where he/she continually pushes back the gum line ensures there is always extra work for the Dentist to do (and more money for them of course). Not sure what I will do if I do actually need any dental treatment as NHS Dentists are hard to come by on the island, and even finding a private one for nervous quivering wrecks like me will prove difficult - especially when I have to declare my current Chemotherapy regime. 

Now to some of the more unsavoury side effects of the treatment. My wee smells awful, and the abdominal bloating and wind is horrendous. Fortunately the actual flatulence itself, although it rattles the windows a bit, and I can compete with Him in the Shed on that front (told you it was unsavoury) it doesn't smell so is better than some of the SBD's that creep up on me in Supermarket (Silent but deadlys!!) but I do try not to be close to any other customers. I suspect that some of the wind might be down to changes in my diet - I am eating hardly any meat now, (even gone off chicken) but I do still have Cheese, Milk and Eggs - thanks to our obliging 3 hens and some fish twice a week. I am finding that a Bagel and Humus with a few bits of salad for my supper regulate my blood sugar without the need for too much insulin. 

I have actually been managing my blood sugars reasonably well since the oral steroids finished, but am still having an occasional Hypo when I misjudge the insulin required for certain foods. Of course I only started insulin the same week as the Chemo, and the Diabetic Nurses have praised my efforts in keeping it below 10 mmols whenever possible. Of course there will be more titrating and frustrations from Thursday when my next Chemo and steroids are due. 

HOORAY! I actually managed to go for a swim yesterday which was reassuring after last week, and, amazingly I didn't find my usual 20 lengths too challenging considering it was two weeks since I did any exercise. I wonder if during my next break week if I could increase it a bit.

A Pamper Day and a Half!

Today, I have decided to have a bit of a pamper day - we were due to go to Calbourne Mill with Daphne for their 1940's weekend, but due to the heavy showers and gales (nothing to do with me!) it was cancelled. I am sure it has been the same bad weather on that particular weekend for the past 3 years, as I remember sitting in Betty last year (and the previous year) while the wind blew and the heavens opened. This year was the worst though, and many island events were cancelled on Saturday including the Jack Up.. event at Newport. Such a shame as they had some famous acts booked who couldn't even get to the island due to cancelled ferries. Calbourne was cancelled today too.

So far I have had a long soak in the bath, and coloured my hair (Honey Blonde, not that you would notice despite me leaving the dye on for 45 minutes!). Once I am in bed I will have a peeling face mask, and attempt to put some nail varnish on my toenails. It is a waste of time trying to do any sort of manicure though - for one thing I bite my nails, but also they are so thin they are flaking and splitting, often leaving them bleeding and sore. I am also getting loads of painful hangnails. Tomorrow, I will see if I can dye my eyebrows and lashes which are so pale they are invisible. The Oncologist said I would be unlikely to lose my hair but it might become thinner - mind you it is already very fine and thin due to the Rebif, but I am hoping that by colouring it, it might look a bit fuller and less of a flat colour.

One positive thought is that, even though I have to have Chemo again this week, if I am indeed having just four cycles then I am half way through my Therapy. I expect it will all hinge on an ultrasound scan after the fourth sessions.

 

 

Two days post Chemo and the Treacle legs have hit early!

OK, 'Treacle Legs' - a term I suspect everyone with MS can relate to. It's like walking through treacle with legs being heavy and a fear they will give way completely. Certainly not an excuse for high blood sugars!

Really upset they hit today though, I had rested this afternoon in readiness to go to Disabled Swimming Club this evening but I just hadn't got the strength to even drive there let alone swim. Devastated as I was really looking forward to meeting the gang and getting some much needed exercise. Never mind, I have no Chemo or blood tests this week so should definitely be well enough to go next weeek.

I am of course back on the oral steroids now again for 3 days which as suspected are playing hell with my blood sugars again - if it's not Hypo's its High readings. I am trying to titrate my Novorapid insulin according to what I am about to eat and doubling the units to allow for the steroids too. I had hoped to keep the weekend readings down to below 15 but it is proving a step too far and I have already had a reading of 17.3 mmols.

Somewhat annoyingly this time the steroids seem to be making me hungry, and I have just devoured a huge Ploughman's lunch - mostly cheese and paté but of course there had to be some carbohydrate rich crusty bread with it. It was certainly the largest meal I have had for months but I am hoping that it will just be while I am on the Dexamethasone as having taken so much time and effort to lose the weight I am DEFINITELY not going to put it all back on again. Plus I have just got some lovely new Maxi dresses in size 18 and am planning a cull in my wardrobe of anything over a size 22 to make room for them!

So what will the next few days bring? If it follows the same pattern as before, I am expecting 2 - 3 days of feeling a bit shaky and unsteady with possible bouts of Treacle legs (sounds like a weather forecast!). Whether this means I will be able to venture out on 'JenHur' or not I don't know, but I will certainly not be up to driving for a couple of days at least. I have stocked up on essential shopping in readiness. Hopefully, as I am now back taking regular Rebif again the MS symptoms at least won't be too bad or last too long, but, and I am now increasingly becoming aware, this dizziness and unsteadiness could also be masking the other demon I have to cope with - Diabetic Hypogycaemia so I have to be ready with plenty of blood testing strips. I am using an App on my phone to keep track as well as a spreadsheet to monitor my readings and insulin doses. 

Even my Diabetic Nurse is surprised I had a Hypo in the Phlebotomy department but as I am now aware that there is no lingering of the steroids once the final tablet has had its effect I know to definitely avoid any insulin at breakfast time on Monday. She is ordering me a second Glucometer so I can keep one in my handbag in case of any future issues while we are out and I also have a load of Dextrose tablets in a vareiety of flavours too. I will soon need a wheelbarrow not a handbag!

OK, enough for now. Off to bed now to digest my dinner and take my dreaded steroids and other medications.

More news as it happens - thanks for taking the time to read this if you are still here! xx

 

 

 

New month same routine, except ...

Well it’s the second session of Chemo tomorrow and far from getting a handle on it, it is throwing up all sorts of problems.

If I touch my limbs or chest I feel like I am bruised or kicked in the stomach (or maybe like I have done a hard workout). 

But there has been another potentially more serious issue. Yesterday, having spoken to my Diabetes Nurse about my Hypos of Monday and yesterday, she suggested to leave out daytime insulin and just have 10 units of the long acting Lantus insulin last night. Yet today, I thought that at 8.5 and based on last weeks readings, and the fact I was having egg on two slices of toast, I would be safe enough to have 6 units of pre meal Novorapid. BIG MISTAKE!

I was due a blood test at the hospital prior to tomorrow’s Chemo and duly attended the Phlebotomy Department. Having complimented me on my dress the senior Phlebotomist tried but couldn’t get any blood, meantime I was starting to feel the early signs of a Hypo again. I caused a minor panic in the department, but following Jen’s instructions (4 Dextrose Tablets, followed by another 4 if unresolved after 10 minutes). They gave me some water, but... and this REALLY worried me, although they found a Blood glucose monitor- none of the staff knew how to use it. 

Remember, this is a Department where all they do all day is take blood samples, yet they have had no training in dealing with someone having a Hypo. This is in no way a criticism of them and the two ladies were so helpful and really concerned. However, I really feel that they could be trained to use something as simple as a glucometer (it was a different model to mine and my Hypo was making me shake so I couldn’t use it either). The reading (after 4 dextrose tablets) was 4.6, which of course meant nothing to them either. However, I knew to have more Dextrose, and then had several very sweet Sunburst sweets in the car. But even then, when I got home my blood sugar was just 7.5! Ironically the Chemo Suite phoned me later at to check that I actually had my blood test done today as they hadn’t got the results - but  yes she did manage it eventually. 

Obviously, something very strange is happening to my Diabetes due to my Chemo (perhaps I have cured it!!).  

It will be interesting to see what happens during tomorrow’s treatment- I will be checking and snacking through the day and have to have insulin as and when appropriate- hopefully the unit staff will have more of an understanding of Diabetes and the Steroid effect.

I fully intend on flagging up the lack of training for Phlebotomists  regarding Hypos and Diabetes it would take no more than half an hour to show them how to take and interpret low blood sugar readings, and know what action to take, I feel they felt pretty useless themselves but I know this lack of knowledge is not down to them. In the meantime, it looks like my Glucometer is yet another item I now need to carry everywhere with me (Ron says he will have to add wheels to my handbag at this rate).

Next stop, the Chemo Suite again - 9.30 tomorrow.

Well that wasn't scary at all was it?

Well, its officially true, pride does come before a fall and are often the results of the actions of a Fool!

I was so pleased that I had managed to keep my blood sugars below 20 whilst taking the oral steroids (Dexamethasone), that is until today. Then if you pardon the expression it all went t*ts up! My sugar was 9.9 before breakfast so I gave myself 10 units of Novorapid insulin to counteract the carb's in my poached eggs on toast. All was fine and I had just finished my MS Society e-newsletter and was sending it out to our members when... everything went odd. As I looked at things they flashed like pictures, just like I was taking photographs and the wall looked like it was undulating, I felt very strange - woozy and dizzy.

Yes! I was having my first ever Hypoglycaemic attack!

A check of my sugar showed a reading of 3.4 mmols so Ron got me a bowl of cereal and some chocolate (any excuse eh?!) Of course as it was the Aldi low sugar version I just had to eat 3 squares of it to have any effect (any excuse of course). After half an hour I had managed to raise it to 6.4 mmols but still felt weak and wobbly so had to abandon my plans of a trip to Shanklin and Morrisons. Poor Ron had to go out for the urgent supplies of sugar free Biscuits, Bagels, and Bananas - at least that was an easy list to remember. We decided that resting up for the rest of the day would be the wisest option for me as even now I don't feel (or sound right - strangely it seems to have affected my voice too!). Shanklin will just have to wait until tomorrow now. Mind you he came back with plain not the onion bagels I wanted, and for some obscure reason has got himself a meat pie - in no way is that on his low cholesterol diet! If you want something doing...

Otherwise, since the Chemo of last week and the trauma of the steroids things haven't been too bad. Certainly not a repeat of the suspected fluid retention panic following the last session. Friday night was spent almost entirely on the loo 'weeing for England!' Ron said he half expected to wake up to a dehydrated Egyptian mummy on Saturday - it left me totally drained in more ways than one! 

I managed another 20 lengths at the swimming club on Saturday evening (8 doing just leg kicks using the float, 6 Breast stroke - using both legs and arms, and 6 front crawl using just my arms). I could probably have done more, but have learned from experience to save some energy to get showered and dressed - there have been times when I have been in tears just sitting there exhausted for ten minutes before I could physically manage the tasks. I still have my single lane and my Oncologist is keen for me to continue swimming even though my immune system is now apparently fully suppressed now, he even suggested that I could hold off on my Rebif now as that has a similar effect - now he tells me, and after all the hassle of sorting out the deliveries and have missed so many already.  I will check with my Neurologist and MS Nurses to see what they feel about it though, I don't really want the risk of relapses but if it isn't beneficial do I really want more needles than absolutely necessary, what with blood sugar readings and insulin I am already feeling like a pin cushion.

Yesterday, we took Daphne out for a run and met up with Ron's cousin Linda and her husband David who are over with their extended family for a weeks holiday on the island,  I actually managed to share a Ploughman's lunch with Ron, despite my appetite not being up to much. However, I can never refuse a lovely big chunk of Cheddar! I had a minor worry during the meal when the little and ring fingers of my right hand went numb and I feared the MS might be playing tricks on me again but today I seem to have my usual sensation so that was obviously just a short term blip!

Image may contain: 2 people, including Jenny Dawn Harrod, people smiling, car and outdoor

Linda in the driving seat and Lady Jenny in the back!

Anyway, I'm having pasta for dinner so the carbs in that will bring me back to an even keel and I will be a bit warier of the insulin now I am off the steroids, at least until the next session of Boris busting Chemo on Thursday!

Day 1 Session 2 - last time was just a tester dose.

So, I found out at my latest outpatient's appointment with the Oncologist that my first days Chemotherapy was a low dose to see how my MS would respond and if I could tolerate it. I wish he had told me that before I started it as I thought it was pretty much an easy ride. 

That said, yesterday I had my first full dose, and apart from the fluid retention which delayed my discharge again, much to Ron's annoyance (and the additional dose of Ferusemide prescribed by Dr L - although this did work once I got home!).

Of course the additional benefit of having my Chemo was that on the hottest day of the year I was probably in the coolest place on the island - the delectably air conditioned Chemotherapy suite! It was certainly a popular place for any visiting staff from other departments and I noticed the difference outside the unit during my frequent trips to the loo! 

No ill effects during the six hour session which included a total of 3 litres of IV fluids, including the Boris Busting Gemcitabine, and I was also having oral fluids and a couple of snacks so I could test my blood sugars and take some insulin to try to get on top of the steroidal effect. It was something of a losing battle though but as yet I have managed to keep the readings below 20 mmols, where as last time (without insulin) it reached 28.2 on one occasion. Of course I now have the 3 days of oral steroids (Dexamethasone) which will raise the sugars further, so I am doubling the dose of my pre-meal insulin to try to counteract this. Unfortunately both my Diabetic Nurses have been off today, but Jen has said to email them if I have any problems and she will get back to me - Practice Nurses are definitely born not made!

Side-effect wise I had a mild headache last night so went to lie down at 6pm, but today I was fine and managed two short drives out, firstly to Morrison's where I had a somewhat interesting experience. When I came out with my shopping I couldn't get to my rear car door due to an oddly parked (I would call it abandoned) older car which was left with its driver side door wide open. I suspect it might have been stolen and maybe used as a getaway vehicle, I reported it to the Trolley Guy who told the Security man - he came out and had a look at it and asked if that was how I found it. The radio was still in it and I left him to deal with it. He was going to make a call out in case it was a customer in the shop (maybe someone had got caught short - a Ferusemide tablet perhaps!). My car was undamaged and the only inconvenience was having to put my shopping in the other side.

My second trip was to Shanklin to collect my monthly supply of Rebif injections from my Pharmacy and get an eye patch for my left eye, which feels a little strange when I am watching TV in bed. Watery and slightly more blurry than normal, this could be due to the heat or an MS reaction, not serious but a slight annoyance and it doesn't come on when I'm driving.

I hope I feel OK tomorrow so I can go swimming - the Consultant says I should but also that I am now immuno-suppressed which will leave me open to the risk of infection so the Nurses say its possibly not a good idea. Anyway, if it is just swimming club we all have disabilities, there are very few of us and I have my own lane to swim in so I should be OK if I feel up to it. 

Fingers crossed folks, more updates soon.

Days 12 - 16 - Back, Bladder and Blood Sugars!

So here we are in my week off Chemo and days 12 - 16 which have been eventful in a number of ways.

Monday 12th

I spoke to my Senior Diabetes Nurse (Jen now) who, having seen my Blood Sugar results, suggested we should once again concentrate on just having the Lantus insulin at bedtime to get my morning Blood sugars down to 5 - 7 mmols. I did express some concerns that despite the high volume of fluids I was drinking I was not passing much urine. I feared I might be in retention, especially as I was still in positive fluid balance after my first Chemo session. She discussed this with my GP, and after a few additional questions was happy that I should be OK - unless I developed other symptoms like a distended bladder or lower abdominal pain. I did admit though, that I need to get up 3 times at night (and don't always make it in time) and pass good amounts of urine.

Tuesday 13th

I hit another hurdle. I had just finished shopping in Morrisons and was sitting on my Chariot (mobility Scooter) and twisted to lift a bag of shopping from the floor to put in the foot well. Big Mistake! I felt my back go and a pain shoot down my left leg. After a bumpy and painful ride home it was a relief to lie down and stretch out.

Wednesday 17th/Thursday 18th

Unfortunately this injjury limited any activity for the next couple of days, and I fear the pain also increased my blood sugars as they crept back up to above 17, at this stage I couldn't blame the steroids as they would have been gone from my system.

I have decided to put all my Blood sugars, Insulin dosages, Chemo Side-effects and changes in my MS Symptoms on a spreadsheet which is making it so much easier to keep track of everything. 

Friday 19th

Another chat with Jen, who, having seen the spreadsheet is concerned my Blood sugars are now high almost all the time. She now feels I should go back to having some Novorapid insulin before meals. I am a bit annoyed as I really do not eat very much at all, although I do drink a few Mugs of Milk.

Today I had a bowl of 'Free From' Cornflakes, a couple of Sugar Free Biscuits, and for Dinner a piece of Smoked Haddock and a Poached Egg on one slice of toast. I gave myself 8 units of insulin before dinner when my sugar reading was 12.9 mmols. I check it again when I go to bed at 7.30, before Supper of Cheese, Nuts and some Fruit (gooseberries).  I then check it again before I go to sleep and give myself Lantus insulin which I am gradually increasing the dose - tonight it will be 20 units.

I am also now back on regular Rebif which will hopefully dampen down any nasty MS symptoms potentially triggered by the Chemo- I don't want the MS 'Treacle Legs' that came on after my blood test last Wednesday.

So, what delights do I have next week?  Well, three trips to the hospital are definitely on the calendar.

Tuesday - Blood Test

Wednesday - Oncology Outpatients

Thursday - Chemo Session 2 Day 1 commences, with a 6 hour session, so another load of fluid and the two Boris Busting Chemo Drugs.

Plus of course, back permitting I will definitely go Swimming tomorrow!

 

 

Days 5 - 7 and a Relapse (maybe)

So I have survived it past the initial shock to the system from all the IV fluids, the oral steroids and anti-emetic medications.

Certainly Monday and Tuesday were days where I felt someone had taken my batteries out and left me totally drained, so I even spent Monday in bed to try to recharge for the blood test on Wednesday.

But even so, Day 7 Wednesday, struck a cruel blow. Unfortunately our usual Blue badge parking space wasn't available so we needed to park around 100 yards from the hospital. This didn't seem to be a problem at the time and I managed to waddle as usual (holding on to the hand rails where available but unaided when not), to the phlebotomy department with Ron.

All went well until after my blood was taken. Obviously not linked to that but walking back my legs became heavy and almost stopped working altogether. It felt just like trying to walk through treacle (OK, maybe I haven't actually walked through treacle but you do all know what I mean).

I'm really worried. This was similar to what happened when my MS was first diagnosed back in 2003 and even my relapses of 2010, 2012 and 2015 didn't cause quite such disturbances in my mobility. I made it to the outside door with Ron's help and he had to go and collect the car to pick me up. 

Could this be a full blown relapse, or maybe due to the lack of regular Rebif Injections and the ineptitude of Lloyds Clinical Homecare Delivery (who I now wouldn't trust to deliver a pint of milk).

I am hoping it is just short term side-effect as we need to return to hospital tomorrow for Day 8, and another cycle of Boris Busting Gemcitabine!

Blood sugars are behaving a bit better but have had no steroids for a couple of days now and Lantus insulin seems to be relatively effective at the moment.

More tomorrow.

 

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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©Jenny Harrod 2019