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

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…

Read more

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…

Read more

The journey begins - ironically on Independence Day!

OK so I have reached Day 2 of the 21 day Chemotherapy Regime.

Day 1 Wednesday 4th July

Admitted as a Day Case to the Chemotherapy Department at St Mary's Hospital. First I was weighed to ensure that I wasn't in fluid overload at the end of the session - I needed to weigh no more than 2 kg abov…

Read more

Giving it the Needle!

OK, so I have now been on Insulin for a week and it is actually beginning to have a little effect on my blood sugars at last.

Having started on 8 units at bedtime on Monday, I am now up to 14 units and my waking blood sugar is almost at optimal levels ( 5 - 7 mmols). My lovely Nurse Helen, is ha…

Read more

Taking back some control!

So, yet again I found myself in tears with my lovely Diabetic Practice Nurse, Helen. I have built up a special bond with her since I moved here. I found it very difficult to surrender myself to the role of a patient, having always been the one 'dishing out information and performing Practice Room tr…

Read more

... I shall call it Boris!

This is probably the toughest blog post I have ever had to write, and it has taken a while as I needed to spend some time visiting family and letting them know what's going on.

Some of my Facebook 'Family' have already been following my story to a point and have been very supportive.

As alrea…

Read more

Was it a sign?

Now, as some of you will already have read, when I ordered my new Motability Car - a Ford Kuga, I named it Caz after my best Nursing Friend who passed away far too young from Breast Cancer on the same day I ordered the vehicle. I thought 'Caz the Kuga' sounded good.

Today, literally after my onco…

Read more

Cruised the Fjords

So, we had our cruise to Norway on the Saga Sapphire, and at least I enjoyed it. Him-in-the-Shed pretty much decided before we went that he wasn't going to have a good time, although I actually chose that cruise with him in mind because of his interest in the 1940's and WWII.

He moaned about wait…

Read more

Making a SPLASH!

So, it looks like my fifteen minutes of fame has arrived. Having responded to a Tweet from the MS Trust about exercise and MS, I was asked to write a blog post about how swimming has helped my fitness and Multiple Sclerosis. I was asked for around 600 - 800 words, but you know me, I had to add at le…

Read more

Trips, Falls and Liver Scans

Well, it has been an eventful few weeks, including a couple of falls and an abnormal blood test that has concerned my Neurologist enough to request a Liver Ultrasound Scan - one of my MS Nurses called to let me know earlier today. Of course it might be said that anything Him-in-the-shed can do I can…

Read more

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Jenny's Blog

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. 

The journey begins - ironically on Independence Day!

OK so I have reached Day 2 of the 21 day Chemotherapy Regime.

Day 1 Wednesday 4th July

Admitted as a Day Case to the Chemotherapy Department at St Mary's Hospital. First I was weighed to ensure that I wasn't in fluid overload at the end of the session - I needed to weigh no more than 2 kg above this at the end of the session. My vital signs Temp, Pulse, O2 Sats, and BP were recorded as a baseline.

To ensure the fluid was going through my system I was then given some oral Frusemide and an Anti-Emetic to hopefully stave off any nausea once the Chemo drug was started.

A butterfly needle was inserted into the back of my left hand and a 50 ml Saline flush was set up to ensure patency of the vein. Then I was given:

1 Litre of  hydrating fluid to ensure the kidneys are not damaged through the treatment - given by fluid pump over 1 hour. This included Potassium and Magnesium to make sure my natural electrolyte levels were not sent too off balance by the additional fluid intake.

A 50 ml Saline Flush

Then the Boris Beating Cisplatin given over the course of an hour. This is shielded from the light by being covered in a brown cover as it is photosensitive. I actually like to think it is also a disguise so Boris can't see it coming!

After another flush of saline drip a further 1 litre of hydrating fluid is given over an hour.

Then the Gemcitabine over 30 minutes, followed by another saline flush.

This meant I had a total of 3 litres of IV fluids over 6 hours!

Unfortunately, despite the Frusemide and multiple trips to the loo, the 'well ran dry' and I was still 3 kg over the desired weight after treatment. I was also drinking quite a lot due to the dry air (and because I was told to by my Diabetic Nurse.

Of course the steroid made my blood sugar shoot up and it was over 19.5 mmols at bedtime. I gave myself 20 units of insulin but it was still 19.8 mmols this morning. I sent a worrying email to Helen to see what she feels I should do.

I now have 3 days of Oral Steroids to take (deep joy for my Diabetes - NOT!). I also have some additional strong anti-emetic (anti-sickness) med's to take for a couple of days, and then some Metoclopramide to take as needed after that.

Fortunately, apart from a bit of initial fluid overload, the blood sugar spikes and feeling shattered (it had been a long day), I suffered no side-effects during or after the Chemo. I do have some minor bruising where the needle was but that is certainly not a problem.

No IV therapies now until Day 8 although I will need to have bloods taken the day before. I need a season ticket for St Mary's I think. Fortunately I do have free parking with my Blue Badge but I am somewhat miffed that the WiFi isn't free in the chemo department.

Next report as and when I feel up to it. 

 

Giving it the Needle!

OK, so I have now been on Insulin for a week and it is actually beginning to have a little effect on my blood sugars at last.

Having started on 8 units at bedtime on Monday, I am now up to 14 units and my waking blood sugar is almost at optimal levels ( 5 - 7 mmols). My lovely Nurse Helen, is happy for me to titrate the dose up by 2 units every couple of days and hopefully I will have a decent level of control by the time my battle with Boris starts in earnest on Thursday. 

Tonight I will try 16 units, and then send Helen my weekend email blood sugar readings tomorrow morning before Ron and I go off to St Mary's for our Chemo Information day. 

Stand by for the Battle proper!

Taking back some control!

So, yet again I found myself in tears with my lovely Diabetic Practice Nurse, Helen. I have built up a special bond with her since I moved here. I found it very difficult to surrender myself to the role of a patient, having always been the one 'dishing out information and performing Practice Room treatments' (Even now I still have the Door sign with my name on - well its no good for anyone else, and is now on my bedroom door!) At that point I was scared that I would be patronised by some young 'graduate' and 'told' I must lose weight when I already knew that! Helen listened to me and said that I could always see her for my diabetes and even email her if I had any concerns with it - she even gave me a hug as I was leaving. 

Anyway, as Boris has seen fit to play merry hell with my blood sugar levels, sending up to 24 mmols at one point and never below 10 mmols for goodness knows how long - I will admit I haven't checked it very often as I believed that the weight loss and Metformin would have given me at least moderate control. The ideal range should be 4 - 6 mmols so you can see the size of the problem. 

Helen assured me that it was nothing I was doing wrong, and by eating as sensibly as I am able (with my appetite as it is), it is  better than it could have been, and even if I didn't think it was doing any good swimming will help control it. 

Anyway, as per the oncologist's instructions we agreed that commencing insulin was the best idea, and I was prescribed my first insulin pen, needles and a sharps bin. Yet more injections. Our fridge is beginning to resemble a pharmacy what with my Rebif (MS), Ron's Praluent (Cholesterol lowering) and now my Insulin, there is less and less room for actual food! 

Helen, explained how to use the pen, screw on the needle to pierce the seal, remove both caps (keeping hold of the larger one), setting it to 2 units and press the button to do an 'air shot', this primes the needle. Then turn the dial to the required number of units (my starting dose is 8 units), choose a site somewhere on my flabby belly but avoiding around the umbilical area, hold the pen like a dagger and insert the needle slowly at a 90 degree angle, press and hold the button down until it resets to 0 and then for a further 5 seconds (Are you Ok reading this, you've gone a funny colour?). Then resheath the pen and remove the needle putting it in the sharps bin. The pen in use can be kept at room temperature with the spares kept in the fridge (just like my Rebif). Depending on my readings I can titrate by 2 - 4 units every 2-3 days or so, as long as I keep Helen updated by email.

So, last night I gave my first dose, pretty simple for someone trained in the art! - we are aiming to get my waking blood sugar down initially. Amazingly even today it was 9.8, and hasn't been below 10 for I don't know how long, so even that small amount is making a difference. I hate not being in control of my body, but if insulin is one way of me taking back some of it at least, then that has to be a good thing right?

It is going to remember to do it every night that will be the problem - plus of course on Sun/Tue/Thur evenings I will have the Rebif as well so I will be a double pin cushion then! 

Hopefully when the blood sugars come down I will feel better - the Fatigue which I have been blaming on the MS, and it's true that does cause very debilitating fatigue at times, is undoubtedly worse due to my uncontrolled Diabetes. It is also putting me at increased risk of damage to my eyes, kidneys and extremities though peripheral neuropathy. Diabetes can be extremely serious.

Oh, and of course, now I have got my 3 year driving licence renewal back at last (they have just had it 3 months), I will have to contact the DVLA again to tell them I am on insulin. Deep joy! 

... I shall call it Boris!

This is probably the toughest blog post I have ever had to write, and it has taken a while as I needed to spend some time visiting family and letting them know what's going on.

Some of my Facebook 'Family' have already been following my story to a point and have been very supportive.

As already discussed I had an ultrasound scan in April which showed a mass in the liver. This was followed in May by a CT scan with contrast,  an MRI with contrast and then the big one a Liver BIOPSY. This wasn't the most comfortable of procedures but it was done as a Day-case so I went prepared with some downloaded Netflix series and some magazines plus I got £35 from my Medicash Account. 

I was a bit tender for a few days and then saw the oncologist a week later.

That appointment was a bit of an examination and information experience. My oncologist was awaiting some additional results from the biopsy but it was confirmed that we were looking at an inoperable cancer which might at least respond to chemotherapy, and we were allowed to go on our 2 week 'holiday' up to East Anglia to see our families and break the news to them. Ron asked him if it was 'life threatening', and he said it wasn't (although I know it is becoming life limiting and I am now having some symptoms).

On our return it was another two weeks before my next appointment, and on Wednesday my treatment plan was discussed. As suspected it is inoperable and radiotherapy is also not possible so I will commence the GemCis Chemotherapy regime (Gemcitabine and Cisplatin) next month. Annoyingly it is still not confirmed whether it is hepatocellular (liver cancer) or a cholangiocarcinoma (gall bladder cancer) but the proposed treatment will be the same whichever.

Unfortunately my blood sugars are now all up the creek and my diabetes is completely all out of control. This is despite my appetite being very poor and my further weight loss (I was 14 stone 8.8 lb this morning). My diabetes Nurse is seeing me next Monday to start me on Insulin - hopefully this will help reduce my current fatigue and maybe improve my appetite a little.  Controlling my sugar levels will be vital as one of the components of the therapy is a steroid which will raise them even higher and increase my risk of secondary Diabetic complications.  Somewhat annoyingly I have just received my Driving licence back from the DVLA for my 3 year renewal, an when I start insulin I will have to contact them again to let them know.

So there we have it, I have a large inoperable carcinoma in the middle of my liver. Ron and I have every hope that this treatment will halt and possibly shrink any further growth of my 'Alien', but by the same token I have no unrealistic hopes, I know unless a miraculous cure is found  at some point this cancer will take my life but I am certainly not ready yet.

In my search for a name for my 'Alien', and with the current Conservative Leadership battle going on, it looks like we will be getting an unwanted invader trying to take over, who has a number of offspring and makes me feel sick (OK, and a little scared) - I shall call it BORIS!

 

  

 

Was it a sign?

Now, as some of you will already have read, when I ordered my new Motability Car - a Ford Kuga, I named it Caz after my best Nursing Friend who passed away far too young from Breast Cancer on the same day I ordered the vehicle. I thought 'Caz the Kuga' sounded good.

Today, literally after my oncology/chemotherapy appointment we parked our car in Morrisons Car Park right next to another car, with the the registration 'Caz', I kid you not! Now I would have been happy with a white feather as a sign, but this seemed much more personal - the only sadness was that the owner was sitting in it all the time we were in the shop (eating her lunch) otherwise I would have taken a photo. 

I really feel that my lovely Angel friend Carole is watching out for me from beyond, as is her amazingly strong sister, Sue (on Facebook). 

Believe me or not, it is your choice but to me it was too much of a coincidence especially as we had to park somewhere different in the car park to normal as there were no blue badge spaces available. 

 

 

Cruised the Fjords

So, we had our cruise to Norway on the Saga Sapphire, and at least I enjoyed it. Him-in-the-Shed pretty much decided before we went that he wasn't going to have a good time, although I actually chose that cruise with him in mind because of his interest in the 1940's and WWII.

He moaned about waiting to embark, and waiting to disembark (insisting that being in a lounge full of people with coughs and colds caused his now persistent ear and chest infection - nothing to do with the chemicals he continually breathes in from his vaporizer!) Note, I don't have a cold!. He moaned about having to dress up on formal nights, he couldn't do the top button up on his shirt (I am not surprised, see below), and then that his suit jacket and trousers didn't match - that will teach me to let him do his own packing - he chose the suit when we went to Matalan but wouldn't try it on when were there! He moaned about having to spend 2 full days at sea, but would have moaned even more if he had to fly and wait 3 hours in an airport.

However, his determination to hate the whole thing ended at the evening meals, and he was quite happy to tuck in to Aberdeen Angus Steak on four of the six nights we were away. What with that and the full English breakfasts he devoured every morning, he very quickly undid any of the good work he achieved when following Dr Al Barahani's dietary 'orders'. He also managed to consume large quantities of red wine, which, although Dr A.B promotes as the alcohol of choice, I am sure he didn't envisage it being by the bottle! Yes I had a glass or two, but not every night. He was of the view if it was All Inclusive he was having everything he could!

Having lost a lot of weight already I have trained my appetite, and I tended to choose healthier options (except an occasional naughty desert), but I was tempted by the huge varieties of cheese available every night.  I still managed to put on 5 lb while we were away, but lost it again before my next Monday weigh in.

He did like the scenery of Norway and found the aircraft museum interesting (I was bored there but still didn't moan as chose that excursion for him!). 

I have sworn that if I am well enough to go on another cruise - I AM GOING ON MY OWN! 

Making a SPLASH!

So, it looks like my fifteen minutes of fame has arrived. Having responded to a Tweet from the MS Trust about exercise and MS, I was asked to write a blog post about how swimming has helped my fitness and Multiple Sclerosis. I was asked for around 600 - 800 words, but you know me, I had to add at least another 50 or so. 

Here is a Link to it , see what you think.

If it inspires you to have a go let me know.

Trips, Falls and Liver Scans

Well, it has been an eventful few weeks, including a couple of falls and an abnormal blood test that has concerned my Neurologist enough to request a Liver Ultrasound Scan - one of my MS Nurses called to let me know earlier today. Of course it might be said that anything Him-in-the-shed can do I can do better. He has also got to have a scan on his liver due to some abnormal results picked up at his Lipid Clinic appointment.The usual reason for a 'fatty liver' which he has, is alcohol, but I know for certain that that is not the cause as I don't think we have had more than one bottle of red wine at Christmas time. Reassuringly, his cholesterol is the best it has ever been but his liver enzymes are concerning his Consultant.

My abnormal results are hopefully just due to my Rebif injections as they have been gradually increasing over the past few years. If I can change to an oral medication I will be thrilled - I am fed up with doing an impression of a pin cushion three times a week. Fingers crossed it is not something serious in either of us. I have noticed an abnormal permanent salty taste in my mouth so whether that is relevant I don't know.

On a positive note my weight loss is continuing slowly and I have lost around 3 stone in the past year with Him-in-the-shed managing to lose the stone that his consultant ordered him to, since October.

Thanks to my MS I have had a couple of falls over the past month or so - the first at the swimming pool when I was hauling my bag out of the locker and toppled backwards with the effort. Then on Saturday, I had just come out of Shanklin Theatre following a breathtaking performance by Lionel Richie tribute act Malcolm Pitt and the Jonny Miller Band (Oh,What a Feeling!), when I was leaning against a rocky wall attempting to ring hubby to come and collect me, when my feet slid from under me and down I went on to my right hip. No-one saw me, (or if they did they ignored me) and I felt helpless as I wasn't sure how I could get up from that position. I had to turn over and get on my knees and haul myself up on the wall - grazing my hand in the process, I then realised I had my foot on my mobile! Fortunately it wasn't broken and my Knight in Shining Armour arrived to take me, and my bruises home. I have quite a bruise on my hip and my arms ached terribly yesterday, but I forced myself to go for a swim today (1 km 40 lengths).

Getting to grips with Caz the Kuga - it is VERY thirsty and seems to be very poor MPG, perhaps its my driving (or the air con!). One issue I have is that my proprioception isn't very good and I think it is much wider than Hettie the Yeti was so I am tending to drive very wide of parked cars which annoys oncoming traffic (I did fail my 1st driving test due to driving too close to parked cars!)

In the process of selling the holiday chalet now - trying to find a solicitor to do an ID verification is proving annoying to say the least. Then our next excitement is a cruise to Norway next month.

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©Jenny Harrod 2019