Waiting......

Hi Deb

Did Trish come back to you? I noticed that the website doesn't always email people to tell them they have a message so that might explain it.

The last time I got a message from Trish she was fine. Quite settled into the routine for the treatments.

In case you havent heard anything and would like some tips or reassurance...

If you are having tablets rather than the PICC line you will likely have an IV on your 1st day. They usually sit you in an oversize chair to do it and it doesnt take too long. Then they send you off for your 1st radio treatment. 

The machine is a bit like an MRI scanner. They will probably sit you down and go through a few things with you first.  A few tips with washing and eating etc. They will ask  you to drink a couple of cups of water before treatment to fill the bladder and push the organs into the same position each time. They will do a scan of you the first time that they use to line you up in future so to speak. 

They will lie you down and line up the lasers on your tattoos. They will put your head and feet into polystyrene blocks to keep you nice and still. Sometimes they draw crosses on the tattoos. Then they read out a few technical numbers and pull a few levers to line everything up. 

Once happy they will leave and tell you to stay nice and still and wave if you need them. You wont. Dont worry.

When the machine starts up it will sound a bit like a high pitched keyboard that plays 3 notes at different pitches as it goes around you them stops and comes back. 

It takes only a few minutes and you will never feel anything from it. They will come back in and help you off the machine. Thats it.

Once you have done a few you will feel quite relaxed on there.

You are unlikely to have any skin reactions at all for at least the first three weeks This is worth remembering obviously. You will soon get  into a routine and will start to feel in control.

When/if you do get a skin reaction it will be very gradual and if you get any discomfort that your pain killers aren't keeping in check then tell the guys when you go for the treatment and they will get something sorted for you. You will be well looked after.

This is very doable. Most I have spoken to found treatment far less scary than the actual idea of it. Even in week 5 I went shopping with the wife for example. 

You will defo be able to do this and you will realise it by about the 3rd or 4th week.

Hope this helps get things into perspective.  Let me know if you have any questions or worries at all.

Ian x

Hi Ian

Thank you for this - I feel a bit less panicked now reading this from someone who has been there and done it. The hospital went through the clinical stuff but that doesn't actually tell you what to expect if you know what I mean and I am a secret worrier (or maybe not so secret). 

Deb1E x

Hi Deb,

I was worse. I had an awful meltdown after reading some of the accounts on here at the beginning.

Imo It's really important to realise that the "Norm" for this treatment is less frightening than that.

I stayed in touch with Debh1 through her treatment and her experience was very similar to mine. She is a worrier like me too and was relieved to find she coped really well. She didn't even use cocodemols just your regular paracetamol and ibuprofen.

If you want any tip for the treatment going forward. Defo ask the hospital for a "Spikey cushion" or order one of they wont  supply it. Just makes things more comfy later on.

Also start stocking up on the paracetamol and ibuprofens. Most places will only sell 2 at a time and you don't get many in a packet. 

I didnt start using them until end I'd week three I think it was. I put alarms on my phone to remind me to take them. That is a good tip too.

I ordered a cream called Flamigel toward the end too. It was great for any sore bits. 

Together with my spikey cushion, tablets and cream I managed well and stayed fully functional (Normal) right through.

Happy to answer any questions you have. I know how this bit feels and how far a little reassurance can go.

Ian x

Deb1E 

I echo everything that Ian says and really is more doable than you think.

Please feel free to contact me as well throughout. Ian and Sarah as well as others on here have kept me sane!!

I'm the biggest worrier in the world and if I can do it, anyone can.

Deb xx 

Hi Deb1E, 

I was the same going into treatment, terrified because of some of the posts I’d read about people’s reactions to it. Rest assured the skin reactions etc., are slow in building & the first couple of weeks will go by with hopefully nothing more than a bit of sensitivity. After that it varies, my skin reaction wasn’t too bad at all  & I only got sore at the very end & the radiotherapy team & oncology team were great at providing creams & medications & I had no reaction to the chemo side of things either apart from my hair going a little bit thinner & dry but only I noticed that nobody else did! Nobody wants you to suffer through this treatment so they’ll do all they can to help & advise. Also once you’re going to the hospital every day for your radiotherapy appointments the time really does fly by & before you know it you’ll be through the other side. 

Try taking a deep breath & think how many of us there are here to tell the tale & how reassuring our stories are. 

Sending lots of good wishes for Tuesday. 

Nicola 

HI Ian

Thanks for this.   Having contact w people who have been there and done it helps a lot.

Not slept v well the last couple of nights worrying that I will wake up tomorrow with a cold or sore throat or something.  Mad or what?   I'm hoping it's just the fear of the unknown and me being a bit of a wuss and after tomorrow when I come home and tick off day one I will be a bit more chilled.  

Have been out today and bought some paracetamol and ibuprofen to start building up a stockpile.  Not sure what a spikey cushion is but will google it.

Hope you had a peaceful Bank Holiday.

Deb1E x

HI Deb

Thank you.  I will keep in touch with everybody it is reassuring to hear everybody's positive stories.  I'm hoping once I get day one under my belt I will be a bit more relaxed about it all.

Have a good day

Deb1E x

Good luck for tomorrow, you'll be fine.

I've messaged you with a link for the cushion.

Deb x 

Hi Nicola

Thank you.  I am looking forward to coming home tomorrow and putting a big cross  against day one and know that I am on my way (and hopefully sleep better tomorrow night - have been having some strange dreams and not sleeping well the last couple of nights).  

My sister has bought me a mug which says "positive vibes only" so will take that with me.

Have a good evening

Deb1E x

Hi Debbie

I've put the link below for the kind of cushion I had. Ask the hospital for it first though.  Will save you a few bob. I found out later mine could have suoplied one if I asked the right person

I wouldn't worry about cold or sore throats I've known then start people with them anyway. It takes a while for the chemo to affect your immune system so you will get over a cold in.tne mean time they told me.

Once you get a few days under your belt and you get the hang of the routine you will start to feel in control. Much of the fear is the unknown anyway and once that's gone you will start to realise this thing is much more doable than you thought. 

Let us all know how it goes and if you have any worries at all. The tiniest nagging doubt can really do some mental damage if it's not dealt with. We all know that.

You will be fine.

https://rover.ebay.com/rover/0/0/0?mpre=https%3A%2F%2Fwww.ebay.co.uk%2Fulk%2Fitm%2F172513484503

Ian x