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Radiotherapy Starters Nov 2019

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Re: Radiotherapy Starters Nov 2019

Ps

Katy, I saw on this site somewhere that some people do have problems with their throat due to radiotherapy. Perhaps put a question in the ask the nurses section and they will give you information.

J xx

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Re: Radiotherapy Starters Nov 2019

Dear Katy, 

 

I'm not surprised you feel down - it's such early days. I have lots of days when I can't stop crying and am waiting for counselling. It's such a massive thing that's happened. And it doesn't really end, as the changes are for life, no matter how neat they (eventually) manage to make the scars ...

 

I had reconstruction at the same time as my mastectomy. They only do implants at my hospital. Even though I said I wanted my own tissue, I was persuaded to go for implant as I was told anything else is too expensive and that most hospitals have stopped offering diep anyway (not so, I now discover).  I ended up having to have the implant removed as I had an infection that twice ended me up in A&E when the infection burst my stitches and skin apart and just flowed, unstoppably and constantly. First time, they tried to repair it. Second time, there was no saving the situation. It was so awful ... I do want reconstruction if it's possible, but this time will insist I am referred elsewhere to explore all possibilities. I don't know why he surgeon is keen to see me so soon, but suspect it's because so much went wrong (also got infection in the mastectomy scar under my arm during radiotherapy. It was caused by an undissolved stitch from first surgery back at the beginning of Sept. Still have a couple of stitches poking out. Feel like pins being pushed into my skin whenever they catch on anything).

 

If you aren't sure yet about reconstruction, perhaps just make a decision to think about it in the New Year. Talk to your bc nurse and also ask people on here. I've just had a copy of Vita magazine through the door and there is an article by someone in there on that. Haven't read it yet... there isn't a time limit on your decision.

 

Sending hugs (gentle ones)

J xxx

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Re: Radiotherapy Starters Nov 2019

Hi jubelu

Sorry to hear you are having trouble with sore skin.

my armpit is quite sore as well but I've got a horrible dog end of skin left over from the mastectomy which really sticks out there so it rubs on everything anyway so that is getting a bit sore, my chest area is not too bad at the moment.

Dont be too hard on yourself, they give you so much information sometimes that you do forget or misinterpret things.  You are definitely not stupid. 

 

interesting that you've had an appoontment from your surgeon already. is that because you have already decided that you are going to have have a reconstruction or is this just a routine meeting? I'm still undecided on reconstruction Some days I think yes and the next time I'm think no, but I've not heard anything from the surgeon and their team yet

 

The issue with my throat is really strange it doesn't hurt when I start to swallow it's almost mid swallow sort of further on down the tubes which is why the radiology team thought that it's probably something to do with them as they are zapping not far from that area. I've got to see the GP today anyway (have developed lymphoma which is fun!) so I will mention it to her it's possible it could be stress or fatigue related I am feeling a bit down at the moment.

Katy x

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Re: Radiotherapy Starters Nov 2019

Hi Kaytee,

 

Sorry you have a throat problem - really hope it resolves quickly and that you get to share a lovely Christmas with people you love. Is it down to the radiotherapy, or could it be linked to fatigue and a bit of stress, too? My throat/glands in my neck are always the first to grumble when my body is under too much stress.

 

I thought I'd got away with no skin issues (a week one from last treatment, I have been hit by the fatigue), however, I have a very sore, red patch develop under my stm. I was so shocked, as I didn't have axilla treatment (posnoc trial), so just assumed that mean no radiotherapy to the armpit. Apparently, I was wrong! They can't avoid that area when creating the chest area (where I once had a breast) - the treatment I didn't have was the bit under my collar bone. No one explained that to me. I hadn't been moisturising the area under my arm, and it's the only part that has really had any reaction. And that didn't start until the fourteenth out of fifteen doses. Feel a bit stupid, to be honest. So many things about my whole treatment so far I didn't fully comprehend ...

 

Like you, Kaytee, I am seeing my oncologist in January. And just had an appointment through to see my surgeon on New Year's eve! It's cancelled the appt I had for the end of April, so very interested to hear what he is going to suggest...

 

J xx

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Re: Radiotherapy Starters Nov 2019

Hi all

Thank you for your replies I had my last session yesterday but I decided not to ring the bell it just wasn't for me. I still feel as though I've got a long way 2 Go.

I've been having a problem during radiotherapy with my throat seems to have swollen up a bit. The team have given me some medicine for it I was wondering if anybody else had suffered with throat problems? 

 

I have a break now until the end of January before my next appointment with the oncology team so I'm going to try and make the most of Christmas and head back to work in January.

 

Thank you all for your help and encouragement .

Best wishes

Katy

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Re: Radiotherapy Starters Nov 2019

Helly, 👍 really 😁 for you, I rang the heck out of the chemo bell and the rads bell. It was one of the things I focused on during everything, thinking I am going to ring you. In the trust I was in everyone no matter what treatments they were having everyone celebrated and clapped fir each other when you heard the bell, it was just how it was at our trust. I know the bells are not for everyone and there are no right or wrongs at any point on anyone’s journey, you do what’s right for you 😘💕💕shi xx

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Re: Radiotherapy Starters Nov 2019

Hi Kaytee,

 

There was a little bell on the waiting room table, but it was usually hidden under a pile of Macmillan cancer booklets and something called a knitted knocker - a green and cream hand knitted boob, which I thought was horrible. No one suggested ringing the bell, and I never heard it sounded the whole time I was going into the dept. Not sure I would have rung it even if it was a big ritual, as it still feels far from over. But everyone is different ... Do what is right for you xx

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Re: Radiotherapy Starters Nov 2019

Well done Kaytee. You must be pleased that you've got to the end of your treatment. 

There wasn't a bell where I was being treated. You should follow your own instincts and do what you wish to do.

All the best for the future.

RoseRedxxx

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Re: Radiotherapy Starters Nov 2019

Hi Kaytee

Well done for getting to the end of this chapter!

I decided on the morning of my last blast that I would ring the bell, I'm glad I did, in fact my husband took a very short 3 second film which we sent to friends and family and they were all chuffed for me, I think it helped them too.

Do what is right for you, I know what you mean about everything being different, Im hoping that we get used to this new normal soon.

 

Helly xx

 

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Re: Radiotherapy Starters Nov 2019

Hi everyone.

well done to everybody who has finished their treatment and good luck to those who still got some to go.

 

I have my last treatment tomorrow and I was wondering if for the those of you who already finished 'rang the bell'.   this is something that I had never intended to do because it still feels like this such a long way to go, even though active treatment finished for now but I feel that there's never going to be normal again.  However when I was there last week a man did it when he finished his treatment and the whole radiology team came out and supported him give him a round of applause and it seemed actually quite nice so I wondered what your thoughts were about it?   those who actually rang it was it worth it and those who didn't?

Thank you

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Re: Radiotherapy Starters Nov 2019

Thank you Helena. 

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Re: Radiotherapy Starters Nov 2019

My skin started to get sore in the second week. At my review the radiologist said that it was breaking down, but it's only red and a bit spotty. When I go on holiday, I am prone to sunburn and tend to stay in the shade covered in high factor sunscreen! I haven't used the gel they gave me yet, as I wanted to save it in case it gets worse. I've just been moisturizing.

All the best with the rest of your treatment.

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Re: Radiotherapy Starters Nov 2019

Geewhizz and all the ladies who have just finished your rads, ringing the bell for you on here, something we used to do when I was going through rads

 

Remember to keep up your regime for the next couple of weeks as you will still be feeling effects of the rads and listen to your body it will tell you when it wants to rest.

 

I remember when I was just about to start rads which was 3 years ago this month, I started at the end of December and went into January 2017.

 

Sending you all hugs

 

Helena xxx

 

ringing bells.gif

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Re: Radiotherapy Starters Nov 2019

Wishing you well with the rest of your treatments, Geewhizz. Hope your skin doesn't deteriorate. I have finished now, but have been using a gel I was given on prescription- Flammigel RT, I think it's called. No red bits at all now. And no break down, though I do have a slight tiny-bumpy rash. I started letrozole a couple of months ago. I get hip pain and stiffness, but only in one side. Lots of resting now, as I am exhausted, but I have ME, too, so think that's making it worse. Hope all goes well. Jxx

 

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Re: Radiotherapy Starters Nov 2019

Well done 😊 I’ve had 12 and have 8 left and skin seems fine so far, does the last week make you more sore, my last 5 are booster just to area around lumpectomy. I started anastrozole and zolodex just over 2 weeks ago and feel ok so far. Just a little stiff in hips and feet when I first get up but eases off quite quickly x vic x


@Geewhizz wrote:

Hi everyone,

 

I just wanted to let you know that I finished the last of my boost sessions yesterday, and to say thank you for the advice you gave me. 

I need to treat the skin that’s started breaking down and start on tamoxifen next week... and then corrective surgery next year and then... well live life! 

 

Congrats to those of you that have finished radiotherapy and much love to those with more sessions left. The end is in sight!

 

xx


 

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Re: Radiotherapy Starters Nov 2019

Hi everyone,

 

I just wanted to let you know that I finished the last of my boost sessions yesterday, and to say thank you for the advice you gave me. 

I need to treat the skin that’s started breaking down and start on tamoxifen next week... and then corrective surgery next year and then... well live life! 

 

Congrats to those of you that have finished radiotherapy and much love to those with more sessions left. The end is in sight!

 

xx

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Re: Radiotherapy Starters Nov 2019

Congratulations Rosered

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Re: Radiotherapy Starters Nov 2019

You, too, Rosered x

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Re: Radiotherapy Starters Nov 2019

To all my lovely forum friends. Today was my last day of radiotherapy. I wanted to thank you all for being there to support me through my journey. I've been able to chat with you openly and honestly, which is something that I have struggled to do with my family and friends whom I am really close to. You have given me guidance and strength for which I am very grateful. I wish you all the best and I hope that the rest of your sessions and future treatment goes well.

RoseRedxxx

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Re: Radiotherapy Starters Nov 2019

Wish I'd remembered about rescue remedy! Hope the rest of your sessions go well, Bluegeranium. 

 

I've just had an assessment with the first step counselling service. On waiting list now - apparently 56 days at the moment. But she told me the list for clinical psychology (I'm on that one, too), is up to two years ...

 

Really glad this phase is over, but feel a bit like I've stepped into a void ... Anyone else looking to pursue reconstruction?

 

Love to everyone xxx

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Re: Radiotherapy Starters Nov 2019

I was also nervous before, but now I have done 3 days I feel like an old hand.

Each day I have felt like bursting into tears, but yesterday I had rescue remedy for on the way out and that helped.

After today I will have done just over 1/4 of the treatments. Feeling luck that mine will be over by Xmas.  

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Re: Radiotherapy Starters Nov 2019

Yes, broken. That's it ... I'm glad you have your mum to collapse into, RoseRed. And yes, I guess we will get there, wherever 'there' is - certainly not where we were before, but maybe it will somehow be better?

Lots of love xxx

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Re: Radiotherapy Starters Nov 2019

Dear J

Your feelings are totally normal. It's been a long journey. I collapsed into my mum's arms at the cancer centre yesterday. I feel broken. But time is a healer. We'll get through this. My love to you.

RoseRedxxx

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Re: Radiotherapy Starters Nov 2019

Thanks everyone Woman Happy

 

Jubelu - I was not so emotional with rads, think I'd done all my crying with the chemo which I found quite tough! And generally I feel less emotional - maybe from coming off the pill!

 

Just have to see what the tamoxifen does not me.

 

But crying is good, helps to reduce the cortisol in your system so you just do what you need to do 

 

Love Helly xx

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Re: Radiotherapy Starters Nov 2019

Hi Helly,

 

I had my last session today, too. And like you, my skin is so far holding up - just an extensive brownish-red patch! Let's hope our skin stays that way. Have been having intermittent sharp pains and aches in the chest muscle, though.  Not sure whether that's the radiotherapy or mastectomy. And tightness all across the area. Frequent moisturising and stretches help.

 

Still very weepy. Cried all day yesterday, even during treatment - took them ages to line me up properly. Some days just feel as though I've been bereaved. Is that normal?

 

Good luck to everyone else who still has a way to go. And even if you don't. 

Jxx

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Re: Radiotherapy Starters Nov 2019

Well done Crochet- Helly,  🌟

You're a star! Here's wishing you all the best for the future. Look after yourself and have a lovely Christmas.

RoseRed xxx

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Re: Radiotherapy Starters Nov 2019

Hello everyone

 

How are you all doing?

 

Apart from being a little hot and red my skin seems to be holding out pretty well, in fact its less red today than it was at the weekend.

 

Just wanted to say thank you to all you 'forum friends' for your support over the last few months, I got to ring the bell today as I have finished my active treatment, surgery done, chemo done and rads done! 

 

Started tamoxifen on monday and so far no noticible side effects

 

Thinking of you all

Helly xx

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Re: Radiotherapy Starters Nov 2019

Before my operation, I went to M and S for my surgery bras. They were able to book me in with a lady who was specifically trained in helping fit ladies who've undergone surgery or are going for breast surgery. I found it really helpful to get her advice.

I have been given some ointment to put on my skin, but at the moment I'm carrying on using the Aveeno. The other cream is for broken skin.

Thank you for your kind words.

My best wishes to you all.

RoseRed

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Re: Radiotherapy Starters Nov 2019

So glad your tests were clear, Helly. I'm trying not to over-imagine what every twinge and pain is, so goodness knows what I'd have thought if I had your symptoms ... And RoseRed, really hope your skin settles over the weekend. Have they given you any cream? I have some to pick up from the pharmacist tomorrow- just in case. The radiographer wanted me to have it at home to be able to start using immediately if needed. I'm going to ask on Monday if I should use it anyway, almost preventative measures ... And I need to buy more moisturiser this weekend. I can't believe how much I'm going through. So much extra hidden expense. Need to buy some proper bras in preparation for my prosthesis (hate that word) fitting at end of December (if my skin is in good enough shape). The only breast I have left is now an A cup rather than the DD I was before ... Really hard to get anything with pockets in the size I need without spending a fortune. Can see I'll be wearing my post surgery sports type ones for some time to come before I can manage to buy a few 'proper' ones. Been going braless at all times during radiotherapy - lots of baggy tops and droopy scarves.

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Re: Radiotherapy Starters Nov 2019

I had a review yesterday with a radiographer and thought that I was doing quite well, until she said that my skin was starting to break down. I've only got a red patch and a few spots! I still think that my skins holding up well considering what it's going through.

My tattoo in the middle also looks like a big blackhead and I really have to resist the urge to not try and pick it off. I know that it won't come off even if I try.

Anyway only five more sessions to go and there's the weekend to look forward to.

 

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Re: Radiotherapy Starters Nov 2019

I meant good luck on mon, silly chemo brain!

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Re: Radiotherapy Starters Nov 2019

I have not had bone dexa but was going to ask onco at my review on mon. Had to have ecg, bloods and chest xray last week as GP thought my breathlessness and fluid retention might be chemo induced heart failure! All came back clear which is a relief!

 

Good luck with your scan tomorrow.

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Re: Radiotherapy Starters Nov 2019

Really glad it's going so well, Helly. I have number 12 put of 15 this afternoon. So far, so good (apart from the infection last week). Have a bone dexa (is that what it's called?) On Monday. So one hospital for ex in the morning then an hour's drive to the next hospital for the scan. Has anyone else had one? So hope there's no stripping off involved ...

Jx

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Re: Radiotherapy Starters Nov 2019

Hi Kaytee

 

My team have said to leave them, they dont want any unnecessary rubbing in case you damage the skin, I'm just using simple show wash when i shower/bathe.

 

My tattoo's are quite neat little dots and I refer to them as my 'tittoo's', Im seeing them as positive additions to my body as they are helping to make me well again.

 

Ive had my 15 blasts and then 2 boosters now and skin is holding out pretty well so far, glad its the weekend now!

 

Helly xx

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Re: Radiotherapy Starters Nov 2019

Hi Kaytee,

I find mine mostly come off with the moisturiser. I do rub, not vigorously, but mine are just outside the area that's treated. Well, I think they are, as those parts of my skin haven't changed colour. I'm beginning to look as though I fell asleep in the sun with my whole body covered, apart from an oversized breast pocket handkerchief shape over my mastectomy site. Bit of tanning doesn't make it any more appealing - just looks even more freakish ... I'm more concerned about the black dot tattoo in the middle of my sternum. Looks like a nasty big blackhead. Hope it will fade away, like they say the red scars will ... Not feeling hopeful on that score. But, who knows? ...

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Re: Radiotherapy Starters Nov 2019

I use nail varnish remover, just dab it, thought it was preferable to scrubbing away x

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Re: Radiotherapy Starters Nov 2019

Hi all

Anyone have any advise re removing the daily pen Marks?

I don't want to scrub the area obviously but feel dirty having 4 days worth on there still lol.  The rads team say not to worry, but when your lying there half naked I find it something else to worry about.  I know it's a small thing in comparison to the rest of what's going on. But any advise or just to know others feel the same would be appreciated 

Many thanks x

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Re: Radiotherapy Starters Nov 2019

Hi Geewhiz,

That all sounds awful. Pain and exhaustion grind you down in the best of times, but on top of all the other 'stuff' that bc throws at us, too ...

 

On Sunday, I hit a fatigue wall and could barely get out of bed. The rest of this week has been me mostly resting in bed or on the settee, the only foray out to the hospital for my 4pm radiotherapy. I'm lucky in that the hospital is only a few minutes away and I get a lift there and back each day. This fatigue doesn't feel the same as a ME/cfs crash, but that is lurking, too, as the glands in my neck and jaw are grumbling away and muscle aches that aren't Letrozole related are constantly there. (I have 2 layers of pain, the usual ME stuff and new, Letrozole pain). Having learned the hard way about pacing over the years, I am resting as much as I can, as experience tells me that is the only way to ward off a catastrophic crash. As for sleep, I began to struggle before radiotherapy, but it has got worse. However, insomnia is also one of my symptoms when my ME fatigue is at its worst. The oncologist prescribed me 10mg of Amitryptiline twice a day for the Letrozole pain. I only take it at night, as it makes me drowsy, which I don't need during the day!!! At the moment, I also take 15mg of codeine at night. I have been sleeping for a good seven hours with that combination. Medical review with the oncologist in Jan, so will see what he says then. I have some stiffness rather than pain in my left shoulder and under the arm (feels as if the skin on that side is contracting the more radiotherapy I have). I've been doing the arm exercises, but start with the really easy ones and then do some bigger stretches. It really pulls. I can see that the skin on my mastectomy and scars seems to have rippled, almost like raised vertical stretch marks. Can feel my skin gulping down the moisturiser. I'm treating this part of the process like having a root canal filling. It's white knuckles, eyes closed and just waiting for it to be over. It's awful while it's happening, but it will end. And then it's waiting for everything to settle and heal before the next round (for me, that's reconstruction, if that'sposdible, which I pray will be the case). 

 

Try not to think about going back to work. I know that's hard, but if you can put that in another 'room' at the moment, and don't go in there until this 'room's' business is over. I have a friend who sends me texts that say 'one day at a time'. I could thump her every time I read that, because the one days at the moment can be so horrible, but she's right in a way. You have done so well, and you are turning up every day for treatment. I don't think everyone does ... This season is almost over for you, and then you will be able to see how everything settles. 9h, and I've just remembered that, on a practical sleeping note, I now have three pillows instead of two (after surgery, there were more!). Although I am able to sleep on either side again after weeks semi sitting up, I still need to have that extra height to stop the pull on my scars (I had surgery to the right breast, too). Perhaps an extra pillow under your arm, or another sort of pillow construction might ease the pressure on your breast and shoulder?

 

Sending hugs,

Jx

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Re: Radiotherapy Starters Nov 2019

Hi everyone,

 

I’m 13 sessions through now so 2 more normal sessions to go and then boost sessions next week. I’m really struggling with sleep and pain.


I have insomnia from letrozole even though it’s been over a month since I last took it when having fertility preservation treatment but my BCN says the washout takes 2 months. Letrozole was awful so now I’m starting to dread tamoxifen which I’ll start after radiotherapy finishes. 


And then when I do finally sleep, I can’t sleep comfortably as I have ongoing pain and heaviness in my breast area that gets worse after radiotherapy. My breast was deformed before but it’s worse since last week of radiotherapy. I feel taking pain killers doesn’t really help. BCN keeps saying just do the exercises and I do but they make it worse now. 

I have nausea straight after radiotherapy. My team think the nausea is fatigue related too if that helps? The fatigue though feels different to my chronic fatigue\ME symptoms, in some ways I don’t feel as bad as I did when my cfs was at it’s worse but let’s see how that progresses. Jubelu, have you found that? 

 

Everyone assumes that I’m at home resting but it’s been constant appointments most days since surgery. I feel like after the treatment stops my body will just not be able to leave my bed but then I need to go back to work. (I think it’s amazing that you have worked through all this Ruthie x)

 

But on the good side my skin has remained intact. I’m grateful for that! 

Hope the rest of your week goes ok x

 

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Re: Radiotherapy Starters Nov 2019

We are not alone through this, even when we feel alone there is someone thinking about us and wishing us well.

 

It is still a very personal journey which is unique to each of us, and for me the highs and lows change daily - I find having small goals really helpful, most days this is just to get up, get dressed, eat well and drink plenty and my overall goal is to get to the end of radiotherapy at which point I am going to try and do a small walk every day to build up my strength and stamina and hope that things will slowly improve from there.

 

You certainly find out who your real friends are when you face something like this! And I have made friends with some amazing people who I have met on this cancer journey (including you forum friends)!

 

 

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Re: Radiotherapy Starters Nov 2019

I too lost my best friend to secondary breast cancer 8 years ago and I agree I had no clue looking back but was always there for her. I’m not going back to work until the new year or even feb, tiredness of not doing much for months doesn’t help x x

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Re: Radiotherapy Starters Nov 2019

Avilajo, ruthie2 and Helly,

It is pants! And yes the constant, 'you look so well', ...

 

Although I didn't have chemo, I had to give up work 3 years ago as I have ME, so the fatigue, not being able to exercise or do most of the things I love, as well as weight gain (I was mainly bed bound for the first year after I finished work) does nothing to improve feelings of self-acceptance. I'd just about adjusted to my new 'normal' and was in a very good emotional place when this hit. You'd think it would make a cancer diagnosis a bit easier, but it's like starting the process all over again. And I do think it's like bereavement in some ways; grief for what we have lost physically, what we imagined our futures might look like, mortality jumping up right in your face,  saying: "Look at me." And that's without all the effects of the physical treatment ... Someone very close to me, after my reconstruction went wrong and I was left with this mutilated mastectomy site said, "you shouldn't care what you look like. You should just care that you're alive." I know he (not my husband - he is far more sensitive) is relieved to have me around, is scared to lose me, but it wasn't at all a helpful thing to say. I feel very loathed since then to share exactly how I feel with people who haven't walked in these shoes, because how can they relate? My best friend died of breast cancer two years ago, and though we shared quite deeply, I now realise I didn't really have a clue what she was going through.

 

I'm hoping counselling will help ...

 

Thank you, every person who shares a bit of their story here, because it makes me realise that, despite all my feelings to the contrary, I am not utterly alone.

Jx

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Re: Radiotherapy Starters Nov 2019

Hi Ladies

 

Im up and down too, and worried about what will happen when I start tamoxifen (I think this will be next week when I see Onco)! I go through phases, today I feel ok, 3/4 through rads so can see an end to active treatment. 

 

I can really relate to not recognising myself and the weight gain, I'm in so much discomfort from the chemo that walking any distance is a real challenge, its 5 weeks and very little improvement and no matter how much or little I eat the weight does not change, I have put on at least a stone, hair is growing slowly but super fluffy, and no eyebrows or lashes, I don't think its a good look but people say I look great!

 

I've not worked since end of may (before surgery) and am not planning on going back until after new year, I'm a self employed technical writier, attention to detail is critical in my work and I have no attention span nor inclination to do anything!! I do hope this improves!

 

I try not to sound wingy or ungrateful, but its hard to get people who have not been on this journey to understand quite how physically and mentally disabling the treatment and side effects can be.

 

Be kind to yourselves ladies

 

Thinking of you all 

 

Helly xx

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Re: Radiotherapy Starters Nov 2019

I started Anastrozole a week ago, so far ok and had zolodex injection. I’ve got 15 radio therapy sessions left. I still feel teary a lot of the time, I’m bored being at home but also don’t want to do anything. I feel like I don’t reconise myself and don’t like myself as put weight on with chemo. It’s a tough ride xxx

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Re: Radiotherapy Starters Nov 2019

Oh jubelu, I’m just the same emotion wise too! We can’t be the only ones. I’m still at work - only had 2 weeks off since it all started, that includes 4 days after surgery, I think it’s helped in keeping me in a routine but I’m desperate for a break now but just can’t face sorting it out!

i have managed to access counselling and it’s been great so far but I really did have to over egg things to get it. I self referred myself online, didn’t have to go through gp, if I can find the link again I’ll post it.

i haven’t started the anastrozole yet, the box is sat in the cupboard waiting for me. I thought I’d get the rads and the iv bones side effects out of my system do I would definitely know what’s causing what, my oncologist thinks I’m bonkers but it’s not him who has to deal with it all, took from 46 to 52 to get thru the menopause and there’s no way I’m doing it again.

oh and if anyone else tells me how well I look and to keep strong I swear I’ll scream!

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Re: Radiotherapy Starters Nov 2019

Hi ruthie2,

 

I'm glad you managed chemo ok. I only had two out of three nodes positive, which made me eligible for the onco dx type trial. And posnoc, which is why I'm not having axilla treatment, either. 

 

 

I think your observation is right - does anything go to plan? Seems not ... And with regard to your comment about being emotional, I bump along just above the 'coping emotionally' line to feeling as if I'm in the depsperate depths of bereavement,  and every shade of sad and down in between. I think there's no doubt that the trauma of diagnosis, treatment (plus for me two further emergency surgeries) and simply getting your head round it all takes a huge emotional toll, especially when well-meaning people tell you how strong you are, but I also wonder whether the side effects of Letrozole are feeding into the bigger picture, too. I'm on a waiting list for counselling, so when that eventually happens, it could help untangle everything. Oh, and sleeping I find hard, too. To be honest, I've been prescribed painkillers for night time, as I've been having painful joints and muscles (Letrozole)? Perhaps, if you're on hormone therapy, that could also feed in to the poor sleep?

Jx

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Re: Radiotherapy Starters Nov 2019

 

Hi jubelu,

thanks for taking the time to reply, so sorry to hear you’ve had problems, sometimes I wonder does anything actually go to plan?!

i didn’t know I’d to have chemo until after surgery when it was found in 3 lymph nodes, However i appear to be in the minority as I pretty much had no problems, all side effects were minimal, only rang the ward twice so wasn’t expecting any problems with radiotherapy. My appetite has lessened too which means I’m actually losing the chemo weight - yay!!

thats interesting about fatigue, hadn’t t thought of it that way, I’m struggling sleeping again and I’m very very emotional too. I thought it was because I’m nearing the end of active treatment, but who knows!

oh well, onwards and upwards as they say 

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Re: Radiotherapy Starters Nov 2019

Hi Ruthie2,

 

I haven't had nausea, but I have very little appetite, though that's been the case all through my treatment. Skipped chemo, as I had a low onco dx type score, for which I am so thankful. Almost makes up for the failed breast reconstruction ... Perhaps the fatigue is manifesting itself as nausea? Your body has been through a lot. Hope the nausea settles soon.

Jx

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Re: Radiotherapy Starters Nov 2019

Hi RoseRed,

Glad all is going well so far. Yes, I can't believe I still have undissolved stitches from the start of Septemeber. The breast care nurse checked them on Friday, but was onl prepared to trim them IF they were long enough. They weren't. She said not to pull them out. 

 

They don't do breath holding at my hospital - apparently it's still a trial, well that's what I was told. Bit worried, as my mastectomy and treatment is on the left side ... Butthee you go. Have to trust the experts.

 

Hope the rest of your treatments go as well as those so far. 

Jx

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Re: Radiotherapy Starters Nov 2019

Hi all, 6 out of 15 skin fine and dandy no dryness redness or hotness! 
Ache at back of shoulder but was told about this,

however, the nausea!! Wasn’t expecting that! I know it can’t be the rads but it came on after no2 eased sun and mon but is back again. I mentioned it yesterday and was told very nicely to take any anti sickness left over from chemo. Has anyone else had anything like this?