September 2017 radiotherapy

[ladybowler]

ollybobs

Perhaps if you speak to them on Monday and explain how difficult it is to get there for that time because of the length of your journey, they might be able to sort something out for the next week given that you have spoken to them early.  I

did ask for mine on a Mon-Wed to be around or after 1pm as I was coming straight from work, I also explained about my being a carer for my partner who has MS.  They were able to mostly help me with them, but one thing I would say is that it also meant that I was subject to a late of delays as the waiting to get in built up during the day, mostly they were 30 minutes late but on one occasion 2.5 hours, so having them early in the day I think you would probably not have that problem.

I think ladies all react in different way, but always mention to your team any concerns or questions you have.  They will be keeping a close eye on your skin and will advise you accordingly.

Helena xxx

[ollybobs]

Morning ladies.
Started radiotherapy on Thursday so 2 down and 13 to go.
I wasn’t asked about appointment times, just handed a card with this weeks on all. It one before 9am. Takes me hour and a half to get there. I’m not good in the mornings at the moment so it’s going to be a struggle. Phoned up to see if I can alter them. Nope fully booked all week. It’s going to be a loooong week.
Anyway besides that they area seems tight and sore in areas today. Is that normal? How often does it take to show any soreness etc?
Thanks for this wonderful site. Have a good day. Stay positive ladies. Xx

[ladybowler]

katie

The effects of the radiotherapy can cause dehydration which is why they say to take in a good 2 litres of fluid a day to help counter that and the potential fatigue that can go with it. xxx

[pecan]

Thanks Annie.  I am really concerned about the effect on my skin, and the burning.  I have been reading articles about the efficacy of lower doses of radiation, and that's why I wondered what dose they use for us.  I will try to remember to ask the onc or radiologists. 

One of the things that makes me so bervous is that I STILL have a 2cm hole in my breast that needs healing and closing, and I'm afraid it won't be taken into account.

I have (had) red hair and freckles and burn very badly in just the smallest bit of sun.  And I get even more nervous when I hear that the effects are only felt in full AFTER completion, by which time it's too late to do anything about it.

Cathy

[katie11]

Thanks Anniej, how are you doing are you all finished now ? I've drank more than 2 litres today as felt as if I've needed it. Does it make you feel thirsty? X

[Anniej]

Hi Pecan, the dose of radiation is on your sheet that the team use to set up. If you ask them they will kindly explain everything. If you are having boosts to the tumour bed it is a proton beam they use which is deep but more gentle. No noise with thus machine.  Be aware that the beams go through you and burn. I didn't know this and wasn't moisturising my back which suffered a little. I was supplied with QV cream for general moisturising. When the skin became tender I was given a specialised cream to provide a coating across the burn area. The day my rads finished I was given Flamazine cream which is used in the burns unit. It contains silver which is antibacterial. Anything with metal can't be us d during radiotherapy as it messes with the treatment.  With shower gels and anti perspirant - my hospital were very specific about what they wanted me to use for this reason. I found the rads much easier than the chemo. Ran down to the treatment room everyday to knock one more off! Good luck, you will get plenty of support from the marvellous teams. 🍀👍 X

Katie, are you drinking your quota of water? I found I got nauseous if I didn't get my 2 litres down me. X

[katie11]

Hi ladies, I had my first of 20 rads today. Feeling little nauseous tonight, is that normal? Any advice ? X

[Hwin]

So 8 down, 11 (7 and 4 boosts) to go.  No noticeable side effects so far.

I entertain myself each day while being microwaved by chuckling at the random music choices in the therapy room.  The first day of rads, I had Natalie Imbruglia telling me that I was cold and ashamed lying naked on the floor as I lay there with my boobs feeling the breeze!  Next day, to cheer me up, I had Blue Oyster Cult telling me not to fear the reaper.  That definitely cheered me up

I think I need a quick visit to Holland and Barrett to replenish my aloe vera - I thought the tube would last me the course, but I've used it all up in two weeks!  Fingers crossed they have a special offer on.

Hope everybody else is getting on well 🙂

[ladybowler]

Cathy

I will be starting a new thread for October shortly and there are several ladies who will be joining or going over to that one. 

When you say actual dose, are you referring to how sessions or the actual dose given at each session.  I must admit I didnt ask so I dont know, all I was told was that I needed to maintain the my weight at that which they registered at my first oncologist apt so perhaps that is what they base it on.

Hopefully someone else will be able to help about the psoriasis or you could ask the nurses and see what they say.

Helena xxx

[pecan]

I went for my first appt with the onc last week, and am supposed to be starting rads soon.  I have to wait for my wound to heal, because it became infected about 2 weeks after surgery and I currently have a Pico dressing on it.  I am due for another assessment next week, so although I'm not likely to start this month I would like to lurk and ask a couple of questions.

Does anyone have any experience with rads and psoriasis?  Does anyone know the actual dose of radiation they are receiving?

Thanks.

Cathy

[Lizzie]

Thank you Helena, and thanks to everyone on this forum for the support and kindness. Xo

[LadyMondegreen]

Hi AliMcK799

I am starting radiotherapy on 27th so will join the October threat.  

I wasn't given any advice on creams at all in fact she seemed suprised I asked. I found the planning meeting extremely perfunctory - so different to the hospital where I had my surgery. I don't need complete softly-softly/touchy-feely but I prefer not to feel as if I am on a conveyor belt either.  So anyway I just trawled this site for advice about the creams and bought myself aveeno and aloe vera. Eveyone on here is so helpful. I also saw someone recommending going home and sitting in front of a fan to cool the area down afterwards.

I aim to return to work after the radiotherapy because I envisage a busy daily journey to and fro, the possible waiting around due to overrunning, very restricted parking at the hospital so I have to get there very early to drive round and round a few times to find a space etc. all means tiredness and stress so the idea of getting back to work again as part of that scenario will push me over the edge.  

I hope you decide you can cope with your daughter's graduation - even if you only manage the main ceremony and some photos.  There is a lot of unnecessary standing around but should be food and drinks areas so go and relax where you can. It will be wonderful for both of you if you can manage it.

x

[RuthElisabeth]

Thank you and thanks for the great support I have had from this forum throughout my cancer journey this year. It has really helped to go through it with others, to share our experiences and be encouraged that we are not alone. Best wishes to everyone continuing treatment in September x

[ladybowler]

jojums

I have just realised that you have finished your rads today as well so well done you and make sure you keep up the regime over the next couple of weeks.

Ringing the bells for you tonight.

Helena xxx

[ladybowler]

Lizzie and RuthElizabeth

Yay to both of you in finishing your rads today, be kind to yourselves now over the next couple of weeks as you will still be feeling the effects of it.  Hope you have both got something lovely planned to celebrate your end of active treatment.

Ringing the bells loud and clear for you both tonight.

Helena

[RuthElisabeth]

Well done Lizzie. My last lot today too. I nearly didn't ring the bell either but so glad I did! Onwards and upwards now. X

[RuthElisabeth]

Well done Lizzie. My last lot today too. I nearly didn't ring the bell either but so glad I did! Onwards and upwards now x

[Lizzie]

Last day of rads today - yay.  Didn't think I would ring the bell, a bit embarrassed and all that, but when it came to it I rang it loud and clear. Best of luck to everyone with their ongoing treatment xo

[MoodyBlue]

Fourth dose today...now there is no X-ray until Friday, I'm in and out in a flash!

[MoodyBlue]

Good luck Lozzy xx

[MoodyBlue]

Good luck Helen, hope all goes well xx

[ladybowler]

ManCity Helen

Hello and welcome.  Gosh that put a different perspective on how far you have to travel for your rads :).

Well in 3 weeks and 1 day we will be ringing the bells on here for you

Helena xxx

[ManCity Helen]

Thank you 

[RuthElisabeth]

Oh my goodness Helen - that puts a whole new dimension on things! Best wishes to you and your family and hope all goes smoothly. Hopefully the time will pass quickly for you once treatment is underway and you will soon be back with those you love. Take care x

[ManCity Helen]

Hi

I am starting my radoitherapy tomorrow. I live in the Channel Islands and will have to stay in the UK for the duration of my treatment. 

I had a lumpectomy and sentinal node biopsy 7 weeks ago.

I'm going to miss my husband and children. The children are adults but my son is autistic and my step daughter has profound learning disabilities. And that's just 2 of the 4. 

My husband is coming over for the day tomorrow to get me settled in. 

I will be near my sisters and friends in Stockport and traveling to the Christie each day.  (just a short bus ride)

I have to do the breath holding technique. I'm a nurse so I'm not too worried. 

In 3 weeks and 1 day it will all be over, I'll be home and back to normal.

Good luck to everyone 

Helen x

[Lozzie]

I have found a company that do chemical free evertything called Neils Yard.  They have a shop in Covent Garden, however if you go on line you can buy it direct for Dorset.  They even gave me a plan of what creams to use, and also deodrant and shampoo.  I start today, so I will let everyone know how I get on.

[Lozzie]

Start my Rads today, and I am so nervous now.  I have received a large bag of goodies from Neils Yard, which is a god send, as all the products are cemical free, so I have now not to worry what creams and deodrant to buy.  I am hoping the next 3 weeks goes ok and that I get no side effects.

[ladybowler]

Laurajw

Just to say woo hoo you finished your rads today and wanted to ring the bells for you.  Hope you are doing something nice to celebrate.  Remember to be kind to yourself over the next two weeks as you will still feel the effects of it.

Helena xxx

[RuthElisabeth]

Hello everyone. I went back to work briefly between my op and rads but have stopped again while I am having treatment. I am coming to the end but not been hit too badly with tiredness so far but I have been trying to not do too much other than travel to appointments and back - it is about a 3 hour round trip for me so trying to fit in work as well would be just too much. I am just wondering how long I should take off after treatment has ended. In my exit review yesterday she said the tiredness and soreness can peak around 10 days after treatment as it keeps working in your body. I will just have to see how I go but want to make sure I am fully recovered and not go back too early. I agree with others of you who are feeling that it is not just the radiotherapy but everything we have been through this year - both emotional and physical - that takes it toll and weirdly as I come to the end of my treatment I have more times when I feel down than I did when I was first diagnosed - may be it is just all catching up with me! Still, just two more days of treatment to go. Nearly done it! Best wishes and hugs to you all x

[Lizzie]

Day 13 of rads yesterday and feel absolutely shattered - have zero energy.  I've worked through -only three days a week but a full on job.

Looking forward to finishing - we will get there ladies xo

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@Laurajw wrote:
I have worked all the way through my rads, but am self employed so felt i had less choice (no work no pay). My appointments were all afternoons (never at the same time though). It meant two things - 1) I cut my hours to mornings only, which meant i didn't have to worry about rescheduling work appointments when they ran late, 2) i could go home and chill when needed. I am tired now - it really ht me about week 3. I slept from 530pm to 630 am Thurs/Fri this week. Do whatever works for you and your body. try and plan in time for resting as needed and assume that you need extra time for the rad appointments so you are not stressed if they run late. Hope it all goes really well for you x

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[Laurajw]

I have worked all the way through my rads, but am self employed so felt i had less choice (no work no pay). My appointments were all afternoons (never at the same time though). It meant two things - 1) I cut my hours to mornings only, which meant i didn't have to worry about rescheduling work appointments when they ran late, 2) i could go home and chill when needed. I am tired now - it really ht me about week 3. I slept from 530pm to 630 am Thurs/Fri this week. Do whatever works for you and your body. try and plan in time for resting as needed and assume that you need extra time for the rad appointments so you are not stressed if they run late. Hope it all goes really well for you x

[ladybowler]

Flyingarcher

That sounds like a plan and it allows them to organise some cover for you and for you to have the space you need to recover from this part of your final active treatment.  With the amount of days that you have to cover sickness it will allow you to have days when you might find that you need not to be at work as well

Hxx

[Flyingarcher]

Thank you.  I think I'm going to say I'm not going to be around for the latter two weeks.  I'm nowhere near the 100 sick days I'm entitled to and even if I take the full three weeks that's only 15 working days.   Will consider it (although setting cover is a real pain - usually most teachers drag themselves in at deaths door because it is easier than setting cover).

[ladybowler]

Flyingarcher

I would say that deifnitely is food for thought, what you have to bear in mind as well is that if there are any delays to your appointment that will add extra time on to your day. 

I am afraid fwhen I was having it, most days there was at least 25 minutes delay for me and, in fact, on one day I got it two and half hours late, but that was because they had 3 bed patients from other hospitals that they decided to do before the patients with booked slots.  I left the house at 2pm and got back home at 6.45pm totally exhausted and totally p**ed off.  Fortunately I was not at work the next day so had time to recover.

Helena xx

[Flyingarcher]

Thank you.  I think how I've felt yesterday and today is a wake up call.  I have had four operations in four months and lots of hard core mental anxiety at results time and afterwards.  A rollercoaster is a good description.   I'm lucky in that my scar has healed so well but I do have a tendancy to do too much.   

I think from what you've said, ladies, that it's likely I'm going to feel pretty exhausted abnd I have a fifty min drive in to work and then 45 mins to drive from work to hospital so tiring.   Hmmmm.  Food for thought.

[Eggster]

Hi. I worked for the whole time during my rads, I went home straight after appointments if they were 4ish. I had a couple of days of during the 3 weeks coz I was pooped! I finished on 4th September. I got really tired around 4ish, and was in bed by 9 (and spent most of the weekend snoozing). I then picked up a virus, maybe from being run down,  and have been signed off this week.  I work in a small office as an accountant (there are 4 of us), so quite often you are in by yourself,  I had lots of deadlines in the time, including payrolls so I felt I had to work.  I didn't realise how much energy it took from me until this week!  So i would say, even if you dont feel itvat tgevtije, mif you can do reduced hours i would! I usually work nearly a day unpaid overtime a week,  so I guess 7 hours was 'part time'. Note to self, once better, look for a less stressful part time job! 

Fingers crossed you are feeling better soon! 

[ladybowler]

Flyingarcher

Well I worked throughout my rads HOWEVER I was only allowed to do 3 days a week and only 4 hours a day for the whole of the time I was having them and for 4 weeks after, my boss was absolutely insistent about it no matter whether I felt I could do more or not.  On the days I worked I managed to get my rads sessions to be around 1pm as I was able to go straight from work and then be at home for the rest of the day.

Mine is not a stressful job and I certainly do not do any running around, so I would be very careful about how many hours you do.  I found that by late afternoon early evening into the 2nd week I was feeling a bit fatigued, I would suddenly get very heavy shoulders and the next minute i was sleep for abotu 10/15 minutes and then I was fine for the rest of the evening.

You need to make sure that you moisturise well, take in plenty of fluid, I was told 2 litres a day, so that will help counter the dehydration you might get from the rads and help with the fatigue.

How many sessions are you having.

Helena  xxx

[Flyingarcher]

Hi ladies.

finally, after four operations, it's time for radiotherapy.  Been measured up and start properly on 27th.  Glad this is a light at the end of the tunnel.

i went back to work (teacher) on the 31st August.  Decided that I would be there for my timetabled lessons but not do my usual rushing about stuff.  Felt dreadful last week on about Thursday and suspected a UTI.  Got antibiotics on Sunday.  This Tuesday just gone I felt normal for the first time in forever.  I had a heavy day at work..  Weds, felt tired.  Did some dashing across school sites.  Was busy.  Noticed I was a bit breathless (unusual).  Had a bit of chest pain in evening.  Yesterday wasn't due to teach so day at home.  I did far too much dashing about and so by four pm was having breathlessness and mild chest pain plus a muzzy feeling.  Went to Dr and he said exhaustion rather than side effects of antibiotics which I put it down to.  Decided to stay at home today and no dashing!  Been for a shortish walk couldn't have managed more.

if you've read thus far, well done.  My question from those going through rads was how fatigued do you get?  I was hoping to work the two days from 27 and then the following week, hopefully keep going for as long as poss.  Given my recent downturn though, do you think it would be better to book the last two weeks off completely or even the whole three weeks?  I really want my half term as I've not had any holiday due to two operations and I don't want to spend it in bed exhausted. From all the slathering of creams and drinking water plus subsequent loo things are not easy to handle in a school situation.  I also think school and the rather demanding parents will expect normal service after half term.   Any advice, pearls of wisdom, gratefully received.

[Lozzie]

Thank you, xxx

[Lozzie]

Thank you Helena, I was only told E45 but I just cannot stand the stuff. I am going to go to my GP for advise and see what he gives me. Yes have my prescription exempt card now. xxx

[AliMcK799]

I am starting radiotherapy on 21st.  Not looking forward to it as the hospital is 40 minutes (on a good day) away.  I am having 15 fractions spread over 4 weeks.  I am pretty sure I am going to go sick whilst having treatment because I am currently having a meltdown about everything that has happened in the last 3 months.  I hoped to work in the morning and have rads in the afternoon but that may be too much to cope with.  If I do go sick then I am on half pay because I have already used up my full-pay allowance but I think it will be worth it just to keep my sanity.

Interesting reading about moisturisers.  I was told to use baby lotions basically as they have the least chemicals in them, so think I will use the baby Aveeno.  

The ladies who have already started:  what is the tiredness like, or is it not as bad as I am being told it will be?  I have my daughter's graduation on 28th October and I really want to go but am worried about the tiredness post-rads.

Take care all! xx

[Debbie1964]

Morning ladies, when i went for my planning meeting i was given a list of suitable creams i can use, zero AQS, diprobase, aloe vera gel 99.9 percent pure, epaderm, aveeno and cetraben.

Hope this helps

The letter also said if i had other creams i would prefer to use, check ingrediants, they shouldnt contain sodium lauryl sulphate.

Debbie

[Hwin]

Well done ladies who have just finished!  Especially as it sounds as though your skincare regime has worked well for you

I had my third session today.  It's interesting - I always arrive a bit early, and each day they've taken me in as soon as I've arrived (all my appointments are at 4.30pm, I asked for afternoon appointments if possible as I have 6 horses to look after in the mornings!). Today I was chatting to the radiographer and she said they're really quiet at the moment, so they're happy to take me in early as otherwise they're standing around doing nothing.  Apparently "busy times" come in waves, and they're having a not busy time just now.  I did initally curse the oncologist for sending me for the RT so soon after the surgery, but on balance I'm thanking him now!

Still just using aloe vera - and I've always used the Lush solid deodorant anyway, so still using that with no issues. I would rather avoid products tested on animals anyway, so had already ruled out E45.  I have a tub of Lionsleaf Calendula cream if the aloe vera stops working.  Funnily enough, I have large tubs of udder cream around the house because it's my answer to everything skin wise that goes wrong with my horse

[Basia]

I was told to use a gentle moisturiser but the main thing was to ensure it is SLS free.  Our hospital said they don't recommend E45 although I know lots of people do use it.

One of the radiographers recommended MooGoo or Aveena. I bought both but the Aveena baby one.  I used Aveena in the morning as long as it was 2 hours from my shower to my session.  My sessions were all different times of the day. As early as 8am and late as 7pm.....  I then used the MooGoo when I got home after treatment and at night and sometimes in between if I was feeling sore.  

It seems to have worked well.  I had 15 normal sessions and 5 boosts and my skin is good at the end, although I have been told to carry on moisturising for another 2 weeks.  Sorry for the long post!

[Laurajw]

Hi Lizzie. It's worth asking on your first day as i was told to use what I was already using as your skin is used to it and they only recommend a change if your skin is getting red/sore. Everywhere seems to have different rules/advice so worth checking

[ladybowler]

Lozzie

Did they suggest anything at your rads planning meeting?  I know I have heard ladies use something called R1 R2, it is a two part application and you can get it on prescription from your GP, you might want to order it in now as I do not think they will have it in stock.  Also if you are going to be on tablets ie tamoxifen you can get a medical exemption certificate because you are being treated for cancer so all your prescriptions will be free for the duration.

Helena xx

[Lozzie]

I start Radiotherapy on the 19th for 4 weeks, and must admit I am not feeling nervous at all.  I am very lucky to have my hospital 5 miles away from me, as some people travel miles, so my heart goes out to them.  The only thing I am a little worried about is what cream to use, some are saying E45 others are saying other natural products.  I am not a big fan of E45 so could anyone who uses other moisturisers name a good one to get?  

[ladybowler]

Lesley123

Yay and you are finishing rads today, so active treatment finished for you, I am out this afternoon for a meal with friends so wanted to make sure that I had rung the bells for you before I went.

Hope all went well, remember to keep up the regime for the next two weeks and listen to your body as the effects are still there.

Hope you have something nice planned to celebrate.

Helena xxx

[Laurajw]

Basia

So pleased that you are finished.  Hopefully the swelling and tenderness wont last long.  4 sessions to go for me and I cant wait to get back to being in charge of my time. xx

[Basia]

Thank you Helena - I did indeed have my last session yesterday.

20 sessions seemed very daunting when I started out and I was worried about having to hold my breath.  I'm pleased to say that all went well and the radiographers were impressed with how my skin held out using MooGoo moisturiser.

My breast is swollen and tender and a bit itchy and I am really tired at the moment but so glad I've finished.

Good luck to all the ladies awaiting and going through treatment - the bells will be ringing for you soon.

Gill x