The start of week 2 after first Chemo Cycle & Other ramblings

Well its 12 days after first chemo and feeling amazingly well. I'll share the side effects a little later but really I have got off lightly so far and life carries on as before- I don't look or feel ill- long may it continue.

There have been a few different scans which I'll go into in more detail as this is all new and nothing like "House" on TV.

In the meantime I thought I would share my top 10 that have helped me up until now, thought I would revisit this list in due course:

My Top 10

1. A hug from Don when needed - ahhhhh!!! The soppy bit
2. Sunshine, wind and the sea- I am an outside girl after all.
3. You lot - thanks for all your amazing support and positive vibes
4. A good book - just read The Radleys by Matt Haig- a jolly yarn about vampires with a twist- very apt with the amount of blood I have had extracted with each hospital visit. This was top pick on Channel 4 book club which is why I chose it as wouldn't have normally but was an enjoyable read.
5. Music - current motivational song - Tubthumping - I get knocked down but I get up again - by Chumbawamba - for obvious reasons. Gets my toes tapping and makes me smile - try it.
6. Knackered Cow candle from Cowshed for relaxing. Smells lovely and is relaxing.
7. Neales Yarde invigorating bubble bath - does what it says on the tin.
8.  A sprig of lavender from the garden. Took with my to hospital in early days -  a sniff helped to relax during those stressful waiting times.
9. Doing this blog. Gives me a little control.
10. iPad - for those early evenings when I couldn't sleep catching up on Mad Men and iplaying anything interesting on TV to pass the night etc.


So my Chemo cycle is every 3 weeks and I am on day 12 after the first cycle - which is week 2 of 3 and feeling frankly great. I had so many conversations with consultants and nurses about the possible side effects  and whilst I am aware that the side effects after each cycle can be different so far not too bad. To anyone else who is going through this and having bad side effects I am sorry but really grateful that I have got off lightly so far. In reality I felt nearly back to "normal" by the Friday after (7 days after) first Chemo although energy levels a bit lower, before that legs a bit wobbly so just went with the flow and made sure I did a little light exercise each day

My Cycle 1 side effects and how I am dealing with them:

1. Taste buds changed as tongue cells not replaced making food taste bland. Bizarre to be hungry and eat and be disappointed as the taste isn't there to enjoy. For example I can't taste tomatoes now and cheese tastes bland just a texture! So I found that if I add salt & vinegar crisps to a cheese & tomato sandwich it tastes ok. As food in general tastes bland I have invested in some spicing up ingredients including Levi Roots Reggae reggae sauce, sliced jalapeno peppers, English mustard etc. The hotter the better tastes good.

I am currently experimenting with unusual ingredients to get the best taste mix - any suggestions gratefully received.

2.  I day woke up queasy- dealt with it by eating a banana.

3.  I am told I will lose my hair this week - not yet fallen out so watch this space. Curious to know if it will be a sudden shed or gradual and what it will feel like.

4.  3 days not able to sleep. A side effect of steroids taken over 3 days from day before through to day after chemo treatment to counteract possible allergic reaction to chemo. Just had to catch up on sleep once steroids finished.

5. First few days really thirsty - drank water.

That really is it. I have pages of notes on possible side effects from the light to the really heavy which I won't go into now. I'll update you if later Chemo cycles mean different side effects.


So in the meantime I have had a few hospital visits for various scans which the consultant booked in for me. I hadn't really given any thought to these and how they work until I went for them so I thought I would share what was involved:

Scans

1. The CT Scan
This was a 7pm appointment. It started with being given 1.5 litres of white gloupy liquid to drink over 45 minutes. It looked like thick milk and smelt like oranges. It was Barium solution to show up your innards - lovely.

Into the scan room, stay fully clothed and lie on a comfy "bed" on my back with my arms above my head. Cannula in arm to have dye added. 2 Nurses settled me in then vacated room. The scanner is a circular narrow "disc" with a hole through which either the bed moves into or the scanner moves over the bed- had my eyes closed so not sure which.

It was very quick 2 trial runs as you move into the scanner an American recorded voice says "breathe in and hold" then after a few seconds says "breathe".

Then nurse says right going to pump in the dye into my arm - remotely. Then says oh bye the way Jacqui this might make you feel that you have wet yourself - don't worry you won't have!. A really strange feeling - but in case you wondered no I didn't wet myself but it did feel like I did!

All over in 10 minutes. The male nurse had just started his shift - was on until 8am. He advised normally does one of these CT scans every 20 minutes but the most he has done in a shift was 50 on a really busy day...

I can confirm that 1.5 litres of Barium solution doesn't fill you up and Don & I collected a Chinese take away on the way home( a hot one of course).

2.  The MRI Scan

This is to measure lump accurately and will be redone after 3 Chemo cycles to see if Chemo working on the lump.

Arrived at a new part of Derriford hospital at 10am along from maternity and cardiology for the MRI which is  a security protected area to enter. All clean and well decorated. Joining instructions suggested bring along a Cd to listen to as scan will take up to 1/2 hour so I thought it would be a quiet relaxing experience - of course it isn't!

For this scan you put on a  nice turquoise cotton gown( opening at front) with a matching turquoise dressing gown. Cd - Nina Simone taken from my car last minute passed to Jessica the radiologist. She added a cannula to my arm (getting used to this) as dye would be added in due course- she stays in her room - glass screen overlooking the scanner and a lovely nurse settled me in. This time  I needed to lie on my front. The bed was a bit like when you go to have a massage and there is the hole in the bed to rest your head, except in this case there were two holes for my boobs - aah dignity... So this time lie on your front with arms above head and the scanner is the "tube" the whole body moves into with little spare room around. Nursie gave me earplugs then passed me through scanner ie bed moves into scanner to connect cannula to dye tube then vacated the room. Nina Simone Cd started all relaxing then Jessica spoke. Okay Jacqui are you comfy- yes then we'll start first scan - it'll take 4.5 minutes. Then the scan started- couldn't hear Nina Simone - the scan sounded like a machine gun going off even with ear plugs in. After this scan a few seconds on Nina then Jessica advised next scan would take 6 minutes - this time the noise was like the beeping you get as a lorry reverses amplified. Jessica advised final scan would again be 6 minutes and this time scan noise was a mixture of the first two with the dye also added.

So all finished and collected back Nina Simone Cd- why they suggest a Cd I really don't know as you hardly hear any of it? Cannula kindly left in my arm as 11.30am and off to Nuclear medicine for my bone scan.

3.  The Bone Scan

I knew that I was going to have a radioactive solution injected(hence cannula left in from MRI scan) and then 1.5 hours later at 2pm have the scan. So am radioactive - apparently no side effects and no impact on others. But they give you a code for the Nuclear medicine loo and ask you to use it.. The point on side effects and impact and a separate loo doesn't add up in my mind.

Anyway as needed to top up car parking decided to pop to local pub for lunch and enjoyed  a white wine spritzer and the book I am currently reading. Felt a bit like being on holiday.

Back to Nuclear medicine for 2pm and the scan. This time dressed and lying on your back but nice nursie wrapped a cover over me so that my arms couldn't move, put a pillow under my knees and an elastic band around my feet to keep them together. This time the scanner is two squares each a couple of feet square. Nursie kindly put on radio 4 and I quickly lose myself in the Archers followed by the afternoon play. Scan just involved the flat screens moving to about an inch from your head and moving around your head then that being repeated at various points down your body ending at your feet. Think I nodded off.

So left home at 9am to get to Derriford for MRI at 10am followed by bone scan and got home just after 4pm. Lying down being scanned is tiring or maybe the MRI noise and radioactive injection make you tired Either way was knackered so flopped that evening.

So up until last week I had no idea how the various scans operated and now I am an "expert" so I hope you found my summary helpful.

I can plan ahead a little now as I know I have the rest of this week with nothing else that needs doing and as mentioned I feel good. The course of antibiotics taken over 10 days finishes tomorrow and I am drug free apart from iron tablets until chemo 2 on Friday at the end of week 3 next week.

 Talking about the antibiotics they are huge 3/4" and I did have one of those OMG moments a day into taking them as I had ignored the leaflet so I wouldn't be on notice of any side effects. But then it occurred to me that maybe they shouldn't be taken orally - phew on checking they were!

Week 3 is meant to be the week you feel best in the cycle but also involves a few visits to Derriford. Monday is the visit to chat with the consultant, Wednesday visit for blood test to make sure ready for chemo which is on Friday. Other than that feeling great and time flies.

Again please do share this blog and feedback your thoughts. Do you want more or less medical stuff or personal stuff etc?