Rads Update - So far...... an untraumatic start

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Hi All :slight_smile:

We’ve had a few posts recently from new people scared to death by all the “negatives” with SEs etc, because people don’t tend to post if they are fine, so they get an unbalanced understanding of chemo etc.

So for the last 6 monthers out there who “know” me on here, as SE Hell Woman on Taxotere, I started on Rads.

I’ve now had 6 of 20. I’ll give an honest opinion so far.

I’ve been having rads at St James Hospital in Leeds (also known as “Jimmys”) - I’m travelling for the post part by patient transport from Halifax.

The rads themselves, so far absolutely FINE, no skin changes, no pink/red, no discomfort. It’s like nothings happening in that respect outwardly.

So far… so good. Hope it stays that way!

The travelling there is utterly tiring me out, I already have bad chemo fatigue, so this has compounded it. I feel heavy eyed and drained all the time and I really DONT want to do anything but I’m making myself for my sanity and also becasue I can’t just sit there - I’m doing HOURS of being sat down all day for 5 days.

The worst was yesterday, it was 5 1/2 hours from my house and back home again, in total.
The treatment was 10 minutes, if I’d have come straight from my house to the hospital in a car,it would be 30-40 mins each way. So you can imagine how annoying it is when it takes 3 times as long as it should.

I can’t drive myself, theres no way I can manage the commute personally, I’m tooo tired.

So to say that is the only beef - it’s not too bad so far.
But I can’t describe how exhausted I feel - I can’t sleep due to hot flushes at night, its very very broken sleep, I’m either boiling or freezing and can’t find a happy medium.

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Hi EK, as one of the 6 monthers who can recall you had an horrendous time with tax I would like to say it’s about time you had a bit of a break with treatment, if tiredness is the only problem with Rads that’s not bad.
I am hoping to start Rads as soon as my Mx wound heals, so any positive comment is very welcome.
Here’s hoping you stay well and sane with the rest of it.
Jean xx

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LOL, me and tax are not friends - I merely tolerated it like an annoying work colleague!

Tiredness is annoying but I’d rather that than the pain I had as well as fatigue.

It’s still irritating though - busting to stop feeling exhausted and have energy levels back! That’s just natural frustration though isn’t it.

About time my “luck” changed. Thanks xx

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Can’t wait to get onto rads. Will feel like the final straight.

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El Katrano

Yes rads is fine isnt it? But the fatigue is not very nice and it will take time to go when you have finished rads. I am now about 3 months post rads and I am JUST getting back to normal energy levels, even though I still have blips now and again and the tiredness overcomes me. BUT it does get better, it really does. Good luck with the rest of the rads. chris x

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Good to hear that your not suffering with the rads as such El Kat. I too can remember reading your posts on SE’s, u really did suffer badly, felt really sorry for u so im especially pleased to hear youre doing ok.
The commuting for u sounds the worst, contributing to the fatigue but guess that’s out of your hands. Hope u continue to do well xx

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Hi El Kat

Glad you’re doing OK(ish) - I was wondering where you’d gone.

The tiredness is a b**ger. I’ve just finished 5 weeks - the 1st week I was tired, but think that was mainly the lingering effects of chemo. The second week I was quite bouncy, but I gradually gor more tired after that. I didn’t have to rely on hosp transport, but did drive myself and it was a minimum of 2 1/2 to 3 hours out of each day.

I finished on Weds and have been warned that I may get worse before I get better.

DX

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Hi El Kat

I agree we should say when the S/Es are not so bad as well as when they are.

I have now had 23/24 rads - last one on Monday hurray! - apart from a little pinkness around my 6 year old scar I have been pleasantly surprised by lack of S/Es. I am a little more tired than usual but nothing I can’t cope with. I guess it may still hit - I seem to remember OAL saying that. But so far so good - a walk in the park compared with chemo!!!

K x

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I found the radiotherapy hellish - but not because of side-effects but because it was relentless having to get up at the crack of dawn every day to go to the hospital (thank God I had hospital transport or I would never have made it - no way would I have been able to drive).

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well i thought it was all in the mind. the team told me they thought i should not have problems with tiredness. So I was going to rock out and sail through it.

1st three weeks were fin, even though going to the hospital was time consumng. then in week 4 I suddenly had these horrid jabs and the only way to stop them was to grab my boob and squeeze it. apparantly it was nerve pain. I would not say pain, more an alien sensation that i had to get rid of. not a good thing in the middle of weatherspoons, and i got odd looks at traffic lights.

then at end of week 4 I suddenly hit a wall of tiredness. had to get the band to carry all the drums, had to go to bed and only just managed to get up to perform and then back to bed. And such a hot booob

But the neck buddy saved my life and made the boob more comfortable, and i could turn it round to help protect the boob from the seat belt.

I am now two weeks after the treatment finnished, not tired now for last two days. Breast not quite back to normal but no more trouble. My skin coped well, underneath it must have peeled because there is a huge patch of pale skin where it used to be dark. Long live emu oil!!

oh and talking of emu oil, I bought the shampoo and conditioner because i did not want the suds washing down during rads and my chinese doctor and I have both noticed how thick, soft and lustrous my hair is. Cheaper than my salon bran, and so much better.

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not been on for a while - why? Cos uneventful! LOL. Thank Goodness.
I’m now half way through rads, last night got tight chested and coughy and my boob is hot. nothing horrendous though the tight chested thing is annoying, like when your lungs burn when having a bad chest infection.
I’ve been very tired on and off and had to sleep more in the day as have to get up early for appointments.

Hows everyone else doing?

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Hi El Kat

Glad that everything’s going OK for you. I was wondering where you were. I finished 5 weeks of rads a week ago and my skin has held up really well. Did go braless for quite a bit of the time last weekend and am using a bit of soft gauze underneath my boob where the strap goes.

Rads fatigue has hit and I’ve decided to take another full week off work before going back. I think I’m OK, do too much, then go very floppy the next day!

Hope all continues to go well for you.
Dx

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My Onc says I’m not to THINK about work for a month after rads, cause the fatigue can hit afterwards… day 10 now (post rads) and apparently that’s when the radiation is at its highest… Lymph. in my arm today, but, so far, no fatigue… (hesitate to say it, so <whisper>)… well, no more than I had with chemo, and I’m getting stronger from that… but I’m not fit for work yet, so be gentle with yourself D…</whisper>

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Dj - thats exactly what I do, i think “oh I feel OK” then do too much which I don’t realise until next day when I totally crash!
But I don’t know how much I can do!
I think after 7 months of all this stuff that I’m fed up of being delicate with myself and just want to get stuck in but I can’t yet, then I feel frustrated as my patience is wearing thin now.

GI Jane - Oh it’s an accumulative effect with rads as well is it? great. Oh well, tiredness is frustrating as hell but it’s not painful so that’ll be easier to bear. What was awful was SEs with chemo, bad fatigue and then pain on top of it all.

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I was told the fatigue is caused ay good cells which have been killed along with the bad, repairing themselves. body puts its energy into that. Bit like after surgery I guess.

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well its now three weeks after treatment. skin is fine–thankyou emu oil.

i had about two weeks with bad nerve pain. electric shocks causing me to grab my boob. I found the neck buddy helped that a lot. I was smug about tiredness until it suddenly hit me. I am lucky being old that i can just stop and go to bed to rest. i am still keeping up with my rehearsal and gigging commitments.

as of tonight i am probably signing myself off from side effects, unless i suddenly have a setback. I think it is good that this thread was started so people can post positive results without sounding smug

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Hey El K, good to see you again - had been wondering if you were OK as you’d vanished.

One possibility was that after being quoted on the ‘The Wright Stuff’ you’d left to pursue a career in media.

Kind of an odd aspect of this place that we just drift away once we no longer need it… good, but a bit odd. Maybe that’s why I keep hanging around, I’m just a sad loser!

Hope the rest of rads goes well and you’re outta here soon… in a good way.

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Hi all

Can anyone please tell me what a neck buddy is?

xxx Ducky

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Hi Ducky

A neck buddy is gizmo OAL found - google it and lots of info/places to buy come up.

Copied from one website: What is The Neck Buddy?
The neck wrap (also sold as The Cobber) is made of polyester and cotton and is filled with poly-crystals. By simply placing the neck wrap in clean water for approximately 30 minutes and allowing the crystals to expand, it produces an evaporative cooling system for the user when placed around the neck.
The Neck Buddy Body Cooling Neck Wrap lowers the body temperature by cooling the carotid arteries in the neck. The material may become warm against the skin but by simply rotating the wrap, the cooling effect is rejuvenated immediately!

Dx

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I never did see the wright stuff - what did I say that was quoted? Oooh famous :wink: