Day -1

Good morning everyone, I hope you’ve had slept well, I wish I had, just heard noises throughout the night. I woke up at 4.30am, full stretches and then breakfast.

After a quick shower, loaded the car, final checks and we departed just after 7am. Sat nav says approx 45 minutes to get there.

We have arrived, checked in and I’ve had my weight, height, bp and pulse taken, all perfecto (that’s what the nurse said).

Covid test completed, eyes are still watering.

2 bottles of blood given and now I wait for the doctor who’s currently in a meeting. Time is 8.40am

I’ve had the PICC line inserted, they inserted a line from my right arm through to above my heart. Because I had an operation on my left shoulder, they had to use my right arm.

The procedure took an hour.

I’ve now signed 3 consent forms.

The doctor hasn’t been to see me yet, only after they’ve been can the chemo drug be ordered.

Doctor has been and all systems are go.

I’ve had an ECG done as well to make sure my ticker is ticking as it should.

Covid test is negative so the chemo drug has been approved and ordered, delivery is approx 2pm.

I have eaten lunch, lentil vegetable pie with peas, it was nice, dessert was 6 anti sickness pills. The nurse is due to come and flush the PICC line ready for the chemo. The time is 1.30pm.

Chemo started at 3.10pm, accompanied with the chemo came Calippo ice lollies, orange flavour, the chemo is killing all of the myeloma cells but one of the side effects is that my mouth and gut cells can also affected causing soreness and ulcers hence the lollies.

The infusion took 30 minutes and I had to eat 4 lollies, that’s 3 too many!!! We were finally able to leave at 4pm.

I don’t want any Callipo orange lollies for a very long time!!! I hated the syrup taste by lolly 1.

Just had a small dinner, I’m feeling tired but that’s more down to lack of sleep, generally I feel good. 👍🏽

Today is called Day -1 where patients are given the high dose chemo. I’ll start to feel the effects in about 5 days time. Tomorrow is Day 0 when I get my stem cell transplant.

Time for bed, I’m feeling tired, the day has finally caught up with me. Thank you all for your messages and telephone calls of support, we appreciate them all from the bottom of our hearts. Keep sending us your positive energy, thoughts and vibes. ❤️

Good night all, sleep well.

❤️🙏🏽

Day 0

Good morning everyone, I hope you’re well.

I slept well, I think I slept 8+ hours. This morning I’m feeling a little tired and a slight headache.

So far I’ve taken 6 tablets, drinking lots of water. They’ve given me a waterproof sleeve to cover the PICC line on my arm so I can have a shower.

Breakfast soon and then my morning visit to the hospital for bloods. I shouldn’t be there too long but will have to go back early afternoon.

Breakfast was a watery porridge, followed by cut fruit. It was adequate and good.

Arrived at the hospital for 9am, I checked in, weight and bp taken, all good, bloods were then taken and we were allowed to go but have to be back at 1pm for pre medication and then my stem cell transplant.

It’s quiet out so we’re going for a walk.

That was a nice 4 mile walk, a little rest then a quick lunch of vegetable biriyani with mixed dhal, it was quite nice.

Now on way to the hospital.

We’ve arrived and I’m now in my room waiting for the pre meds.

Pre meds taken, all systems go for the transplant.

My stem cells have arrived.

There are two bags and each one has to be thawed in the bath.

I’m given liquids before the stem cells are given back to me.

The red bag are full of my stem cells. We could see the stem cells when looking at the lines going into the machine.

Both bags took about 30 minutes, next is a saline flush which takes another 30 minutes and then I can leave.

All done and we’re back in our room.

I fell asleep as soon as I laid down. I slept for an hour, woke up for 5 minutes and fell asleep again for another hour.

I woke up, and straight to dinner, a late dinner for us.

Now we’re back in our room and plan to relax.

I’m feeling good, my stem cells and drugs are roaming around my body, all doing their jobs.

I’m so sleepy, hope to see in the new year before I fall asleep.

Wishing you all a happy New Year, may it bring happiness, joy, peace and prosperity. ❤️

Good night all, sleep well.

❤️🙏🏽

Day +1

Happy New Year to everyone!!!

I had an okay sleep, I’m feeling exhausted and hardly have an appetite. I did force myself to have a little breakfast.

Bloods and observations done, we’re back in our room to now relax.

I’ve been so tired all day, my appetite has totally gone and I’m spending more time asleep than awake, add chemo brain to that and I’m not in a good way at the moment.

Time for bed and an early night.

Good night all, sleep well.

❤️🙏🏽

I will try and update the blog but I’m not making any promises because currently I’m just not up to it.

The following was written in retrospect on Day +11:

Day +2

I didn’t sleep too well, constant trips to the bathroom overnight, my stomach was just going mad.

Another horrible day, I was cold during the night, just feeling so tired.  Managed to shower, walked very very slowly to the breakfast room, I had no appetite, I didn’t want to eat but I sat down and forced myself to eat a quarter of a hash brown, about 10 baked beans and 6 pieces of chopped mushrooms.  

After breakfast, we walked very slowly to the hospital for my morning supportive care appointment.  This is where they take blood and carry out observations such as weight, bp, pulse and temperature.  This is when I told them about my lack of appetite and they gave my a couple of bottles of Ensure, a meal replacement drink.  My voice was getting weaker and weaker, even Dr N had difficulty hearing me and I didn’t have the energy to speak any louder.

Lunch was a few forced spoonful’s of rice and veg, I just didn’t want anything.

My blood results showed all of my levels were dropping slowly which was exactly what should be happening.

I could just about stay awake.  Back in our room, I just went straight back to bed.  Unable to concentrate so I couldn’t do anything.  I really couldn’t do much anyway, everything was an effort, even drinking water.

Evening meal for me was a bottle of Ensure, banana flavoured, it was easier to drink a liquid than eat any solids.

I felt sorry for Dr N because she felt guilty of eating while I had no appetite.  I kept telling her not to worry and to just eat, don’t feel guilty, I prefer to see her eat rather than worry.

Early night and hope for a good sleep.

Day +3

Another night of not sleeping well, my stomach felt like it had trapped acid.  I knew it was because I wasn’t eating and I just had to force myself to eat, even if I took my time eating.

After showering, we headed to the breakfast room.  I didn’t fancy anything cooked so settled for a small packet of cornflakes with milk.  I managed to eat everything, it did take a long time.

After breakfast, we slowly walked to the hospital for my morning supportive care appointment.  I told them about the acid feeling in my stomach and they agreed that its probably down to lack of food but to keep monitoring how I feel.  They gave us another couple of bottles of Ensure.

They also carried out an ECG to keep track of progress.  I was still feeling tired and getting weaker due to my blood levels falling.

Back in our room, I again rested, I was constantly falling asleep while lying on my bed, a combination of the chemo and falling blood levels.

Everyday is beginning to be the same:

Interrupted nights sleep, tablets, breakfast, supportive care, sleep, tablets, lunch, sleep, dinner, tablets, tv, sleep.

Lunch today was veg and rice which I again forced myself to eat, I managed half which was very good.

My blood results were as expected, all levels dropping and I would feel worse.

Dinner was a veg biriyani, more rice.  I managed a little more than half, a pause after each mouthful and making sure every mouthful was properly chewed.

Evening entertainment was tv followed by an early night.

Day +4

Guess what, another night of not sleeping well, my stomach was now cramping, no idea why, I suspected it was the amount of white rice I was eating, something I really am not used to.  Most of the dishes available were rice assisted.

After showering, we headed to the breakfast room.  Today I knew exactly what I wanted, of cornflakes with milk which I completed at a slow rate, I was just happy I managed to eat everything.

A slow walk to the hospital for my morning supportive care appointment.  Not much to report today so it was a quick visit and we were back in our room within 30 minutes.

More rest, and more falling sleep, it was also the after effects of the tablets I was taking.

Lunch today was again veg and rice, I wanted to stay away from fish and have basic food however, I was starting to develop a hankering for roast potatoes, yep a roastie, no idea why.  I managed to eat most of the meal.

My daily blood results were as expected, all levels dropping.

Dinner was an African veg dish but again there was rice.  Dr N had ordered a moussaka via Uber eats but I made sure she ordered a side of roasties for me.  I managed most of the African dish with much less rice and I devoured the roasties, though not as crispy as I had hoped which was a good thing as soft food was best.  I felt like I had eaten too much.

My energy level was still low everything was still a chore.

Evening entertainment was tv followed by an early night.

Day +5

I was now forgetting what a good nights sleep felt like, another night of disturbed sleep, the stomach cramps felt like they would arrive every hour on the hour.

My breakfast now was a regular bowl of cornflakes and a mug of tepid water.

Another quick visit to supportive care today as there was nothing to report than the usual.

For lunch today, I had ordered a jacket potato with tuna, yep, back on the fish, I had to change my diet., healthy and soft to the palette.

Nothing unusual about my blood results, all going down as usual, the chemo was doing it’s job.

We managed to 50 metre walk today which was good for me.

In the afternoon, the cramps were getting more regular so we called our emergency team who advised us to go to the hospital to be seen by a Myeloma doctor.  The doctor checked me over, took all of my vitals and the conclusion was the chemo side effects were causing havoc in my gut, everything in there was becoming inflamed, and drugs are available but I decided to take over the counter meds and ride it out.

For dinner, I made sure there was no rice in my diet for the foreseeable future so it was another jacket potato with beans.  The potato was filling and needed.

A scintillating evening of tv and an early night.

Day +6

Overnight stomach cramps were much better, less frequent but sleep wasn’t any better.

Usual breakfast, my new routine.

My supportive care appointment went well.  Today they started with a daily single injection of drug to stimulate my stem cells to aid recovery.  During the ward round, the consultant reported that I was doing well and my blood counts were reducing as expected.  I had developed another side effect, my jaw on the left side was becoming very sore and I was developing a problem chewing and swallowing.  I was prescribed a mouthwash and some numbing spray.

My other new routine is a jacket potato with either beans or tuna for lunch, my stomach could cope with this.

Nothing much happened today, just more sleep and resting.  My immune system was still nearing zero.

I could no longer eat any of the provided main meals so for dinner, Dr N had found a restaurant which specialised in simple foods so, we each ordered a salmon filet with roast baby potatoes and roasted root vegetables.  Beautiful healthy food.  I really missed this kind of food.

Another usual evening!

Day +7

Overnight cramps were still present but I just couldn’t get a few hours of constant sleep.

Breakfast routine was the same.

My supportive care appointment was quick, just bloods and another stimulant injection.

Lunch was a jacket potato with tuna.

A quiet afternoon, more sleep and rest.  My immune system was now very close to zero.  The next few days are the most vulnerable for me.

For dinner, Dr N had popped out earlier and purchased salmon, potatoes and vegetables which she warmed up in the microwave for a very healthy and much better alternative to the food I was eating.

Evening entertainment – I think you know how it went.

Day +8

Still having cramps but slowly easing, still not allowing me a good sleep.

Usual breakfast but couldn’t eat more than a bowlful.

A very quick supportive care appointment, just usual weight, bp, pulse and temperature and then bloods.

Guess what was for lunch….yep, a jacket potato with tuna.  Very plain, a potato, butter, salt and plain tuna.

Blood results arrived and I’ve hit rock bottom, my levels are all zero.  How am I walking?  How have I got any energy?  How am I able to speak?

More rest and sleep for most of the afternoon.  During the last few days, while I slept, Dr N studied hard.

Dinner was the same as yesterday.  My stomach can’t handle anything with spice so we stuck to plain foods.

After dinner, I usually take my temperature and this evening, at approx. 8pm, the reading was 38.1c.  We were told at the beginning of the process that if my temperature went over 38c, we should contact the urgent care team.  We did and they instructed us to pack an overnight bag and make our way to the haematology ward and to an allocated room.  We quickly packed a few things and made our way.

Once there, the nurse showed us the ward, then took all of my vitals and reported back to the doctor.  After a few minutes, antibiotic tablets started and antibiotic infusions would start at approx. 1am.  I had been admitted which meant we would need to vacate the other room.  This panicked me because this meant Dr N would need to do all of the packing, moving and washing.  We talked this through and came up with a plan.

I slept in my new room while Dr N returned to the other room to get prepared for the next day.

Day +9

My first night in hospital, hardly any sleep as I was being monitored regularly and had infusions every 5-6 hours.

The medication was doing its job and stabilising my temperature.  The bloods they had taken from the night before didn’t show anything alarming which was a sigh of relief.  They suspect I have an internal infection which is very common in someone at my stage in the process.

Bloods are taken just after breakfast.

Dr N arrived early to say hi, she dropped off a few things before she went back for her breakfast and then to start ger list of tasks.  Get the car, pack the car, bring more items to my new room, put a load in the washer, eat lunch, take the car back to the car park, put the washer load into the dryer, come and see me.  Everything was completed by the evening.

Breakfast is now delivered to my room, I just had the usual.  I was still having difficulties chewing food on the left side of my jaw.  I had given up on the numbing spray as I hated the taste.  Dr N had visited a local pharmacy and got a mouth gel which is helping.

I’m getting regular observation checks where they take my bp, pulse and temperature.  The readings reflect an infection, high temperature and low bp but after the infusions, the readings are normal.  My body is fighting well.

My blood results show I’m still at zero, the bounce will start in the next day or two.

I stuck with my normal lunch, a jp with tuna.

I rested for the rest of the day, I did manage a 5 minute circular walk around my room.

Dinner was white fish in parsley sauce with mash potato and mash carrots.  It was something I needed because it was soft to eat and so it didn’t pain my mouth too much.

Dr N was to spend her first night with me in a foldout bed.

Day +10

Less cramps overnight but still didn’t sleep well because of the observation and infusions.  My overnight temperature was still high and again the drugs were helping.

Early morning, at about 5am and during an infusion, my PICC line developed a problem and they had difficulty pumping drugs or retrieve bloods from it.  They decided that I needed a chest x-ray to determine two things, firstly, to see if I have a chest infection which may explain the high temperatures and secondly to see how the PICC line is.

Usual breakfast, much needed, while Dr N had toast with jam.

After a shower, the porter arrived to wheel me to get my chest x-ray.  After 15 minutes, all done and I was back in my room.

The results showed I didn’t have a chest infection but the PICC line had moved which meant it would need to be removed and a cannula would need to be inserted soon to allow the infusions to continue.

My blood results showed that the bounce had started, the injections were working, my body was working and my levels were beginning to increase.  Huge news!!!

Lunch was jp with tuna, nothing exciting.

The canular specialist nurse arrived later afternoon to insert it into my forearm so the infusions could continue.  My infusions would now be at 12 and 6 everyday, with observations happening throughout the day.

I had ordered a cheddar cheese salad for dinner, yes yes, it was a mistake, I could only eat half as the potato dressing consisted of raw egg.  That wont be repeated!!!

After my 6pm infusion, the nurse came to remove the PICC line.  Talk about painful, apparently the PICC line is held in place with two hooks and removing each hook is extremely painful, the removal of the line itself was relatively painfree.  I’m all patched up.

We both fell asleep by 9.15pm, I was so tired and knew I would be woken up again at midnight.  The overnight infusions went well, my temperature was still high but not as high as the previous 2 days which means I’m getting better.

Day +11

Wow, we both had the best sleep in days, I just think we were both now more relaxed and combined with the tiredness, sleep was welcomed.

Overnight infusions went well and didn’t disturb my sleep.

Usual breakfast for both of us.

After my shower, because I no longer have a PICC line and the cannula is only to give infusions, the phlebotomist came to take blood.

Today is the first day since this process started that I’ve felt good.

Lunch was a jp with beans, followed by a banana.

After lunch, we went for a little walk around the hospital, I have to admit that I was apprehensive but glad Dr N pushed me.

The rest of the afternoon consisted of doing this blog and reminiscing about the last few days.

One thing I did realise is that throughout this process, Dr N and me haven’t even been able to cuddle or hug let alone a kiss or a peck.  What we have in our relationship is the ability to know how the other person is, what they need and we just click.  Yes, we have words but nothing ever festers, we deal with it.  We just need to look at each other and we acknowledge what the other is trying to say.  What we have is special and we both make it work.

My temperature through the day has been under 37c which is good, it will be good to see how it is overnight.

Today I’ve also noticed that my hair is starting to fall out from everywhere!!

Dinner is a salmon salad Dr N got from her afternoon stroll.

A nice quiet evening meant watching a nice movie or two, final tablets and bed.

Observations and infusions start at midnight.

I would like to say huge thank you for all of your kind wishes, support and prayers. 🙏🏽

Good night all, sleep well.

❤️🙏🏽

Day +12

Good morning everyone, I hope you slept better than I did. It was cold and constant trips to the bathroom and 2 observations and infusions through the night.

Morning tablets followed by my usual breakfast. Shower soon and then I have to wait for the phlebotomist to take my blood.

Bloods done, and I’ve spent an hour plucking 🤣🤣🤣

Don’t really like the scruffy look but I’ll be smooth in a few days 😜.

We had a nice little walk around the hospital, even walked down and up stairs from 3rd floor to ground and back. My conditioning is bad but I know it won’t take long to get back.

Lunch today was a Greek delivery, Dr N had grilled Salmon with salad and chips while I had grilled mixed fish, vegetables and chips. Lovely food, best meal I’ve had in a long time.

Good news, my blood results show a greater improvement than we expected.

We had another brief walk, no stairs this time.

Dinner was a jp with tuna. I’ve ate really well today and no side effects.

This evening we even had a visit from a registrar to give us an update and he’s very happy with my progress, the blood counts which they keep a close eye on are all rising which is exactly what they want to see. I’ll be getting another visit tomorrow morning.

I’m feeling tired this evening so I think an early night is on the cards, observations and infusions start at midnight.

Good night all, sleep well.

❤️🙏🏽

To be continued…

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