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.