Radiotherapy July 2019

[Pjf0265]

Hi ,

So sorry not to have replied sooner ! I don't seem to get notifications to say someone has replied to me ! 

I didn't have chemo just three lots of  surgery and then the radiotherapy! Radiotherapy finished on the 23rd July so now just trying to get on with things ! Very hard some days and still get emotional ! Counselling going to happen at some stage ! 

Hope all ok with you and recovery going well xx 

[DiKat]

Hi Sar

Good to hear you are all done and the skin is holding up. Won’t be long before you’re enjoying that swim. Yes I still have to do the breath hold. Think my heart is very close. Sending hugs 🤗 Good luck with the Herceptin (if my memory is correct and you are having Herceptin) xx

[Seaside Sar]

Hi everyone,

Sorry for the long silence. I finished radiotherapy last Friday and I have been feeling so exhausted. I too have had to take afternoon naps as I tend to crash straight after lunch. My skin has been OK. A bit red and now a slight rash but nothing terrible. Looking forward to being able to go swimming in the near future.

Not many left now, DiKat. Hang in there. I found the boosters much quicker and easier as I didn't have to do the breath hold. Is that the same for you?

Hope everyone else is doing OK and recovering well. 😊

[DiKat]

Congratulations to absolutelyannie and Sandra11 for reaching the finishing line with rads. I’ve been finding I want to crash around 4pm but I’m not actually having a nap as yet. I’ve had 15, just my 5 boosters to go now!

Yes it is quite emotional. I’ve found it hard being around people who seem to be in a far worse state😔 Good luck to you all 💕

[absolutelyannie]

Hi Sandra and Nicky,

Yes I finished today.  bit teary and emotional but not as bad as when I was "freed" after my post surgery appointment.  

Guess my focus has shifted.  Glad to be finished but have to have another (unrelated operation) before (as far as I know) my Zometa can start.  not looking forward to returning to the chemo ward but now at least I can start looking for a job.  just cant be doing with ESA and all the rubbish that goes with it.  went to the job centre with my doctors cert which clearly said breast cancer for the official to tell me "you are well".  this experience has mellowed me out as pre cancer I would have tore into her but it went right over my head.   

Sandra 

so sorry to hear you found rads to be harder mentally.  I found that chemo and the associated anxiety of side effects and fear of the unknown ie the future was far worse.  Perhaps it will get easier mentally for you as you gotta stay strong. 

I never slept so much in all my life!!! was never one to take a nap in the afternoon as I find that if I sleep in the daytime I cant sleep at night.  

onwards and upwards ladies

[nickyg26]

Sandra11 - I agree, I was really surprised at how much radiotherapy affected me emotionally. If you ever want to meet up in York sometime let me know.

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[Sandra11]

Thank you so much Nicky. Yes, all finished today. Hope you’re done too absolutelyannie. 

I feel very emotional about it but hugely relieved. I found radiotherapy to be the toughest mentally. My skin is very red and my boob and underarm feels painful and swollen, but the skin hasn’t broken so I will continue the skin care and hope it all soon starts to recover.

i get to about 2pm and tiredness just washes over me and I have to snooze!  I think nana naps are to be embraced!

Glad you are doing well Nicky and best wishes to all those who are still having treatment. 

Keep moving forward! 😊

[nickyg26]

Well done to Sandra11 and absolutelyannie who I think have finished treatment today! I finished last Thursday and other than having to have a nana nap every day I’m feeling ok. My skin is fine apart from redness underneath my boob. The curse of the large breasted woman!

I hope everyone else is doing ok!

---

xx

[Oots]

Hi reallyzeb 

i have also been getting pains in ‘what used to be my breast’. Stabbing at times but not nearly as bad as you describe. In fairness, not much is left that could hurt. They come and go. 

My skin is OK. I finished 10 days ago and initially the skin was red and tender but now it is calming down. 

The worst part is the fatigue. I am soooooo tired. Mostly OK in the mornings but from ca. 2 pm it’s like I am collapsing. I am trying short walks to keep the energy flowing.

Hope all who are still in therapy are doing OK. 

Oots

[reallyzeb]

I have had chemo but my last one was 14th June and this has only just started which is why I thought it must be the rads.

[absolutelyannie]

reallyzeb

Yes I do get those pains.  Have you had chemo.  been told it could be chemo side effects

[reallyzeb]

I've finished my rads now, just at the end of last week, and went back to work part time today. Now just a decade of anastrozole ...

I was wondering if anyone else was getting stabbing pains in the breast? They've only started today but can quite take my breath away. (It's right side so I know it isn't my heart).

[absolutelyannie]

nelly mc nelly 

do you mind me asking what do you work at.  I am now unemployed and have to start searching for a job.  did a few interviews but when I mention the c word it seems to put them off.

I know I cant be discriminated against but employers can pick and choose now.  

[Nellie McNelly]

Just popped in to wish well to those still having radiotherapy.  I finished a week ago now - skin seems to be staying intact but I am definitely more tired.  Can't get through a day without a sleep and I'm not even back at work yet.

[absolutelyannie]

well done to everyone who has finished.  I got 3 to go and will finish next Wednesday.  Feeling really tired today.  don't know what I will do once I leave the comfort zone - also what I will do with the free time.   

I think I just realised how much we all have been through.  hopefully we are all out the other end of the tunnel now.  

Have a great week end everyone

[Oots]

Congratulations to all who have finished. It’s a lovely feeling after all these months of ‘torture’. To all who are still going through treatment. I am cheering you on while you are completing your treatment. 

Oots

[DiKat]

Congratulations to all of you that have now finished rads. Good luck with moving forward 🤗 I’m 11 down, 9 to go xx

[Jewels994]

Nickyg26, well done on finishing xx

[Sandra11]

Well done Jewels994!  A relief to be finished no doubt. 

Nicky - hope your last one goes OK today. It must feel very strange but nice to close that little chapter of your journey and start moving on. Shame I haven’t seen you any more in Leeds. I was there at 8.40 this morning - pleased to have a run of morning appointments rather than the evening ones. 

I’ve got 4 left and I’m counting down the days!  I still get anxious every single day but guess that’s just me!  The team are all so lovely to me though and couldn’t be more reassuring. 

Hope everyone else is doing OK. Keep moving forward ladies! xx

[nickyg26]

Well done Jewels994.  I’ve got my last session today and I know exactly what you mean ... it all feels so unreal that we’ve been through so much and then that’s it - end of active treatment.

[Jewels994]

Had my last session yesterday. All feels a bit surreal now.

[BernieD]

Music to my ears Julie. I don't like taking medication, so tamoxifen for 5-10 years scared me. Just need to get on with it and hope for the best. Good luck with yours. Bernie. 

[Jewels994]

Congrats Oots and Nellie Mcnellie on finishing treatment. Only 3 more sessions to go for me xx

[nickyg26]

Yay! Well done Oots and Nelly McNelly for finishing active treatment! Xx

[Oots]

My last one too. The ‘triathlon’ completed almost exactly 6 months to the day I had my mastectomy.

I had to have a sleep for a couple of hours when i got home and now I am trying to work out how I feel about all this. It was a mostly cheerful farewell with the staff and other patients and the lovely young man who drove me to the hospital for three weeks. I had chatted with him so much I felt I knew his family. He even brought me a spinach and lamb curry, his wife had cooked.

 When we got home today, there were flowers from friends waiting for us. So many people who have supported us through this time. I definitely feel very grateful and privileged to have such lovely friends. And while I face similar issues as Nellie, I am looking forward to a bit of normality in the near future. 

I have three sessions of acupuncture scheduled for the next 3 weeks provided by a charity called Penny Brohn. Maybe that will help with my joint pains that are coming and going at the moment. 

Hope everybody got on ok this week. I’ll be cheering you on all the way!

Oots

[Nellie McNelly]

Last radio session for me today.  Feel quite odd about it really which I know is common when you come to the end of active treatment.  Like a lot (or probably all) of us I've still got daily tablets to take and I've also got to be reviewed for possible ovarian removal or monthly injections and then I've got reconstruction surgery to deal with next year so it doesn't feel like treatment is anywhere near "over" but at least the triathlon of surgery, chemo and radio is almost done...

[DiKat]

Thanks Nellie McNelly

Ive also nearly lost my voice now so wondering if it’s just coincidence. I will keep an eye on it and mention it though xx

[absolutelyannie]

Jewels994

I get that too.  I spoke to the radiographer about that and she said it is the way we have to have our arms positioned.  keep doing the exercises recommended after surgery.  

Nelliemcnelly

love the name.  yes I read somewhere that radiotherapy may harm lungs and I intend to report this when I see the doctor.  11 sessions done 9 more to go.  

thank god it is going to cool down.  I cant cope with anything above 25 degrees and add in the tiredness after treatment and I am cream crackered. 

[Nellie McNelly]

DiKat and Absolutelyannie

I've just looked over the notes I took when the oncologist went through the delights of radio side effects with me as I thought that he had mentioned coughing.  He said that if I developed a cough during radio (or within a few weeks of finishing) that I might need medication - antibiotics presumably - to stop it getting worse.  I don't want to say that to worry you but if your coughs persist I would see if you can get in touch with your oncologist about it??? - or at least mention it to the radiographers.  

Hope that's helpful???

[Jewels994]

Hi hope everyone is doing ok. I had my review today with the nurse, 11 sessions done 4 more to go. My skin is looking good, no problems so far with that. This afternoon though my shoulder is really hurting. I’m not sure if it’s my RA flaring as I’ve had to come off my meds, or it’s the effect of the position of my arms during radiotherapy. 

Julie xx

[absolutelyannie]

Dikat

Yes I have a bit of a cough - dont know whether it is the rads or hay fever.  

[DiKat]

Hi everyone 

I’ve had my 5th session today and have developed a really annoying dry cough this evening. Not sure if it’s just coincidence or has anyone else had this?

Thanks x

[nickyg26]

Sandra11 - Wasn’t it amazing to manage to meet up especially as St James’s radiotherapy department is huge! We were sitting next to each other in the waiting room and then we were on machines 9 and 10 so we got zapped next door to each other too! 

Oots - thank you for your message. I’m using R1 and R2 and moisturising 4 times a day.  My skin is good apart from this patch under my boob. I was worried as the nurse yesterday seemed surprised it had broken down “so soon” but I talked to the lovely radiologists today and they said my skin was bearing up really well so I’m feeling much better about it. It’s pink and a bit hot but it’s not sore at all!

Hope everyone else is doing ok!

xx

[Sandra11]

Number 5 done, 10 to go. 

I was less anxious today and it was really quick. I’m sure it was all made a lot better by the fact that I met the lovely Nicky in the waiting room and we managed a quick chat before we went off to be zapped!  

So nice to put a face to a name and have the chance to say Hello! 😀

Oots - good to hear you’re still in fight mode!  Keep on fighting!

Hope everyone is doing Ok today x

[Oots]

Hi Nicky

I am sorry your skin is affected. What are you using to moisturise. I was given instructions to use E45 and I do that twice a day. I am also using a mild shower gel and deodorant. All that seems to have helped. My skin is darker around the area of irradiation and sometimes feels a little tender but that’s all. Of course, this is after the mastectomy so I don’t have the added complication of a skin fold. I hope it all cal s down but I am sure there are things the team can suggest that might help.

Hi Sandra, I have not felt all that emotional over radiotherapy. I think I’m still in fighting mode and it will hit me when all is over. Last night I was sitting in the garden reflecting on all the tough moments over the last 6 months. It has been quite horrible for the most part. I am sure many among us here feel the same. And I can now understand why some people refuse treatment. While I am lying on the table every day, I don’t feel that at all. I can only think about the time this will all be finished. This has been my focus through all this time but I worry that all the emotions I didn’t have, will come to haunt me soon.

I am also having three sessions of acupuncture starting next week. I am hoping this will help with my joint pain and sleep. Fingers crossed. 

Good luck to everybody. We’ve seen this through so far, we’ll manage the rest!

Oots

[absolutelyannie]

pjf0265

could be letrozole.  Did you have chemo.  Most definitely from the chemo if you had to have it. 

someone here said about all this hits them - I too feel like that.  but the more people I talk to at the Marsden I have to admit that I feel that I have got off lightly.  I know it has been crap but I have met other people with cancer in other areas of the body having to have 20+ chemo sessions......I thought 7 was enough -

hope everyone is enjoying the hot weather and stock up on Vitamin D!!

[Sandra11]

Hi Nicky

I totally agree with feeling emotional. The radiotherapy has had a much bigger impact mentally than I was expecting. My brain goes into overdrive every day when I’m lying there. I haven’t had chemo so cannot compare. I’ve done four and find it traumatic every day.  I’m sorry to hear you’re having skin problems. This heat doesn’t help does it? Poor you - hope the radiologists can help. 

I’m on week four of Tamoxifen. I’m having hot flushes but mainly at night-time. Other than that it seems OK at the moment - although I’m so tired but that’s probably a combination of everything!  Who knows!

The acupuncture sounds interesting. Is the Breast Cancer Haven in Leeds?

I’ll look for you this evening. I’m 5.25 and will be the one looking hot, bothered and anxious!!  

Take care everyone. Keep ticking off the days.  xx

[nickyg26]

How’s everyone doing?

I’ve got my 14th (out of 20) session today and I’m finding it tough going. It’s nowhere near as bad as chemo but I’m surprised at how much it’s hit me emotionally. I’m not feeling too tired yet but I’ve got large boobs so the skin on the fold underneath my boob is starting to break down and I’ve still got 7 more zaps to go 😩! 

I’ve been on Tamoxifen for about 6 weeks now and other than the hot flushes I’ve not experienced any adverse side effects. I’m having acupuncture at the Breast Cancer Haven and it’s definitely helping.

Thinking of you all in this very hot weather!

Nicky

xx

PS Hopefully see you this afternoon Sandra11. I’d say I will be holding a rose and carrying a newspaper but that’s too much to organise! I’ll be the one with the brown rucksack.

[Jewels994]

Hi Oots, Bernie and Nellie

I started Tamoxifen before my surgery, with a break from just before to two weeks after, so have been taking it for about 3 months. I’ve been fine on it with no noticeable side effects so far.

Julie xx

[Jewels994]

Hi all, I had my 8th session today out of 15 so I’ve passed the halfway point. Don’t seem to have had any skin reaction yet, so that’s all good. I am very tired though, but that might be more to do with the travelling back and forth. My appointments are all at about 9:00 apart from my last one.

When I arrived at the hospital on Friday there was somebody ringing the bell. That was really nice to see.

There was a problem with all the machines this morning, they had to reboot the whole system. It ended up delaying everybody by about 40 minutes. The lady before me said she had got herself all set up on the bed, had done two lots of breath holding, and they then told her she had to get changed and wait while they sorted out the problem. Whilst I was on the bed I thought the same thing was going to happen to me, as I heard somebody come into the room and the alarms to leave the room sounded a second time before they started zapping me. It was a real relief to get out of there today.

Hope everyone is doing ok

Julie xx

[Oots]

Hi Bernie and Nellie,

started on tamoxifen today. I have already got hot flushes and night sweats, so hopefully the impact won’t be too shocking. 

11 done, 4 to go. My skin is a bit red but otherwise ok. The fatigue is something else but I am so excited that Friday is the last one! 

I’ve not had a reconstruction when I had my mastectomy so that’s something to consider in the future. At the time it seemed too much to even contemplate. I will give it a year and see how I feel a out it. A small part of me feels that I was in a battle and I want to have the scars as a reminder but perhaps that many scars are too much. I am confused. 

Oots

[BernieD]

Thanks Nellie, you've put my mind at ease, I'm coping ok with the expander and quite happy with how it's looking so far, hopefully I'll sail through radiotherapy the same as I did with mastectomy and recon. I'm also to take tamoxifen. I already get flushes and nightsweats so not fussed about that. My consultant did say tamoxifen protects the bones from osteoporosis. 👍 finally some good news. Hope all goes well with you, I'll keep an eye out for your progress as we seem to be in similar situations. Bx

[Nellie McNelly]

Oots (and any other fellow Tamoxifen takers) - I started my Tamoxifen on my first day of radio.  I wasn't keen to start them as I had scared myself with the possible side effects.  However - I did as I was told and so have been  taking it for 2 weeks now and so far have had no obvious side effects.  I expect that they will appear later but who knows.  I'm possibly a bit more short-tempered and a bit more emotional but it's hard to tell if that is from coping with cancer treatment (and with people asking me if "I've got the all clear yet")!!

[Nellie McNelly]

Hi BernieD.  I've found the expander implant pretty uncomfortable (to say the least) since it was put in.  I don't regret having it but it's been a lot more painful/uncomfortable that I expected.  I've had 10 of my 15 radio sessions now - the implant feels tighter than it did but it's manageable.  It feels really tight for a few hours after each radio session and then kind of calms down a bit - until the next one!  That is pretty much what I was told to expect.  

Skin wise I am just slapping on the moisturiser about 3 times a day.  I was also told to make sure I stretch my arm regularly during the day.  All fun.

[Sandra11]

Hi Nicky

I’m 5.25 on Wednesday. We will be in the same waiting room so I will definitely try and seek you out and make myself known. 

How bizarre that we will be having radiotherapy in adjoining rooms at the same time!  What a small world!  xx

[BernieD]

Hi nellie, im going for radiotherapy on wed and have an expander implant in. I'm worried how the skin and implant will react to radio. The result of the recon so far is good. I'm dreading it. Bernie

[nickyg26]

Hi Sandra11

Im on machine 9 so we’re in the same waiting area. My appointments are always at a different time each day but I’m there on Wednesday at 5.20 so we might see each other! 

I couldn’t get a prescription but decided to buy the R1/R2 as there were a lot of positive reviews. So far so good with it and I’ve done 11 sessions so far.

Nicky xx

[DiKat]

Hi Seaside Sar

Good to hear you are half way there. Interesting to hear about the measuring up for the boosters as I will be having those too! 

Had my first 2 rads last week and found the breath holding fine, only for about 20secs each time. 

I agree about those emotional moments, they definitely seem to come out of the blue. It’s natural with what we are all going through. We go from such strength to a blubbering wreck!!!

Good luck to everyone else. It’s a shame we have to cover up with such a lovely week ahead 🌞 xx

[Sandra11]

Nickyg26 Yes I’m at St James’s too!  Machine No 10 for me. 

I noticed you were using R1/R2. I can’t get it on prescription from my Dr but I was tempted to buy it. I’ve only had 2 out of 15 sessions so far so still early days. Is it still working well for you? x

[nickyg26]

Sandra11 are you at St James’s? I’m there!

Nicky