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?

The start of a journey

A bit of background...

Found lump end July 2011, saw doctor, referred to hospital, weeks holiday and  treatment started 8 September.

The aim of this blog is to share with you my roller coaster to cure and the highs and lows along the way. It is a selfish way of me sharing with you how things are. I can then control the communication and you don't have to ask so this doesn't need to be in my mind 24/7 and also lets me learn how to blog.


Those of you who know me know I will take a postive outlook. The one thing I have learnt in the short time since this has started is that I have to take one day at a time and therefore can't plan - this is a new skill I am going to have to learn.

From the start this is something that has to be faced and dealt with, no running away. I am now a drain on the NHS service and they have really stepped up to the mark. I will be putting something back into the system to repay them in due course - will advise when I have an inspirational idea.

So this is me someone who previously didn't do drugs only took the odd headache pill and alcohol to me now a walking pharmacy.

I'll give you the projected course of treatment but this may be a moving line as follows:

1.  Chemotherapy every 3 weeks- over 18 weeks ( a review after 9 weeks to see if continue or move to op)

2.  1 months recouperation- looking forward to this

3.   Operation

4.  8 weeks recovery

5.  3 weeks radio therapy and hormone treatment

6.   May 2012 finished...


Before I started this blog I sent out a couple of update emails and repeat them below as they help to bring everything up to date.

.....Well stress gone as now know what is going to happen. Bit of a stress yesterday for Don- said I was very brave as thought I would meltdown- but I was just relieved to not have to go straight in for an op and lump grade not as bad as I had set it up to be. We went to pub.

 

Have a lovely timeline starting in Sept ending in May 2012 when I am going to enjoy the following treatments - Chemo(18 weeks), op, 8 weeks recoup, radiotherapy and hormone treatment somewhere in there too.

 

Whilst it is a shame that you can be made to feel ill with the treatment side effects to get better there are some positives>>

 

1.    Cheryl my lovely breast nurse advises that there is evidence to show that people who drink respond better to Chemo- my notes wrote - drink more!

 

2.    Whilst no skiing this season- saw the best theatre ever last night - Kneehigh Theatre - The Wild Bride at Asylum down at St Agnes last night. Always love what they do and Asylum restarts July next year so will be post timeline then.

 

3.    Might not need to shave..

 

4.    If lose hair often grows back curly - fancy a curly mop.

 

5.    After Op no heavy work - includes cleaning , ironing etc- shame. So might just write that book I have been planning.

 

6.    Seems like loads of ladies who have been through this end up by feeling the positive change in outlook is life enhancing.

 

7.    Having our own business have flexibility to work from home as needed- Have found it good to stay busy.

 

Obviously I am realistic to realise that might not feel 100% through this but as Danny Baker said on Desert Island discs your body is the battle ground so you just have to let it get on with it. Feels easier as different treatment stages so if one crap know it will end.

 

Have a weeks window of opportunity to get away next week before first Oncology appointment on 7 Sept so looking at a last minute week away. 

 

....My diary is a bit floating at the minute as starting to build relationships with different departments at Derriford. e.g just moved bone scan appointment With Nuclear Medicine fixed today from Friday 16th to the following Monday. With first Chemo tomorrow( I need to see what happens and how I am so a little reticent to fix up stuff at the moment. Nursie said more people have minimal side effects now but when I said so I can take part in a tennis tournament on Sunday she said no she didn't think I would be up for it... so all a bit unknown at the moment.

 

Chemo - now officially smoothing treatment- because I needed a positive slant on this! Was a bit OMG I'm going to be poisoned tomorrow which is too negative so having left Derriford laughing when the nursie final word to me was see you Friday for your poisoning after advising that I may not have many side effects feeling a bit better in my head.

 

Calling it my smoothing treatment because a guarantee that one of the 3 treatments will guarantee hair loss so will get a smooth head and aim is to smooth/reduce my lump. I was advised that will lose all hair potentially so no shaving for a while & never dared to bare before so might like it!

 

I would appreciate your ideas on head hair loss as can see a few options- I understand that after 2nd smoothing treatment will start to lose all in clumps:(since advised will lose hair after 2 weeks)

 

• Bring back the comb over as a retro statement after all 70s is so now!
• Go tufty - have cut short first
• Let it go its own course
• Try a wig - have an offer from a friend whose been through this of an £800 Eastern European Wig- quite fancy trying a sharp bob like Uma Thurman in Pulp Fiction!
• Retain hair and make home made wig!

Aesthetically at the moment I don't care about this its only temporary but it lets the outside world see what is happening which I don't like being defined by.

 

I thought I would treat myself to a couple of gorgeous hats and scarf's to aim for trendy head wear until my glorious red curly mop grows (well I can dream!) So keep on smiling and let me know your thoughts on my head hair.

 

 

Before I continue I do need to say a big thank you to family and friends for all the lovely support and for taking on board my request for positiveness etc. You all have been a great help.

 

So on Thursday 8th Sept started a 3 day course of steroids- suddenly couldn't sleep- unexpected side effect

 

Friday 9th Sept - Few hours in Derriford Oncology ward - 1 hour chatting through all the potential side effects- mainly from the supporting drug regieme and the third conversation on this. Actual treatment fine - I don't (sorry didn't) do injections as a rule but painless and just tired because of lack of sleep caused by the steroids. 3am catching up on The Madmen series... Have come away with strong anti sickness pills to take alongside steroids.

 

Sat 10th Sept - feel ok just tired, no sickness and only the odd ache and pain in joints. District nurse called in to give an injection to help boost immune system which is weakened by the treatment.

 

Sun 11th Sept - no additional drugs to take for 2 days... Slightly queasy but didn't need back up anti sickness drugs and Don took me for a spin in car in sunshine to enjoy wind in my hair(still attached to my head). Was able to have a couple of hours sleep in afternoon too which all helps with having your head in the right place.

 

Mon 12th Sept - tired because high winds kept me awake but again an additional drug free day. Worked from home.

 

So to today have started a course of antibiotics - huge pills (ignored the reams of paper listing out the side effects). Had a good nights sleep - feeling good so doing this blog and then working.

 

In overview the chemo which is a 3 drug treatment stop cells dividing at different stages. Healthy cells can recover from this which is why hair comes back but in the meantime the immune system needs support to prevent infection. My system won't be able to deal with any infection without support which may include hospitalisation - not an option I am going for. So in the first week after chemo they give you drugs to help this and recommend that I avoid communal situations like cinema, theatre, etc etc.

 

 

I will blog at random when there is anything interesting to share. Please do feel free to interact, share the blog with others etc. We all I am sure know people who have been through this- the statsitics are so scarily high but the results are good and it does help to share.

 

Another scan appointment letter drops on the mat- unexpected and tomorrow night - hay ho.