Member
Posts: 7
Registered: ‎12-10-2018

Re: November 2018 Radiotherapy

Hope you are all doing ok. I have had 3 sessions so I am counting down and 12 to go for me. Feel ok so far but got quite emotional on day 2. My appointments are all about 4pm or later so spend so much time in traffic jams for rush hour on way home. I won't ask them to change the appointments though, someone has to do the later times. They have already been very good and changed one appointment for me so that I can attend stepfather's funeral.

I am doing the breath holding technique which is quite daunting but managing ok so far. I have started coughing a lot today though, not sure if that is a side effect or whether I am catching hubby's chest infection.

I have been told to use Aveeno to moisturise but someone else suggested Bio Oil as well. Sending love and hugs to all of you 💕💕

JWD
Member
Posts: 173
Registered: ‎24-07-2018

Re: November 2018 Radiotherapy

Hi fezzy didn't know you had to have extra 5 but I'm sure the time will go quick for you. Maybe you do need more fluids to compensate for your other problems you have to cope with. I think your a star coping with everything else too👏👏 you will soon be ringing that bell.. take care xxx
Member
Posts: 52
Registered: ‎05-09-2018

Re: November 2018 Radiotherapy

Thanks for replying JWD it is possible that I should be drinking more water, I do have to drink water regularly throughout the day anyway because I have an ileostomy and need to stay hydrated but because of rads  I maybe should be drinking more to compensate, unfortunately I am not quite half way through as I have got 5 boosters as well, thank you for your support its much appreciated.   Fezzy x

JWD
Member
Posts: 173
Registered: ‎24-07-2018

Re: November 2018 Radiotherapy

Hi fezzy are you drinking plenty of water as I found that helped me a lot.. I'm 2 weeks post rads and I'm still drinking plenty of water and moisturising the same as when I was having treatment. Your half way through now you will do this💪💪💕 x x
Member
Posts: 52
Registered: ‎05-09-2018

Re: November 2018 Radiotherapy

Hi all hope everything is going well. I am day 8 today and I can honestly say I have never felt fatigue like it, even having a shower wears me out, my skin is fine at the moment, a bit of discomfort in my breast. Has any one else experienced this level of fatigue, I am going for a walk most days even though I feel like collapsing in a chair. best wishes to all Fezzy x

Member
Posts: 7
Registered: ‎04-04-2018

Re: November 2018 Radiotherapy

Thanks for replying. its so scary knowing whether they have seen something new on the CT ( i had to sign a disclaimeer to say the ct wasnt going to be formally reported by the radiologist, but was just for the oncolgist to plan treatment) but oviously have a call to say the plan has changed makes me worried they saw something they arent officially mentioning as it hasnt been reported. I start on wenesday the 7th too, bring it on XXXXXX

 

Community Champion
Posts: 9,663
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Moonwing

 

I had 20 sessions of rads over 5 weeks and to be honest other than a bit of redening and a sensitive area around my nipple I was absolutely fine, not everyone has any or all of the side effects from rads and your team will be keeping a close eye on you, if you are concerned about anything mention it to them at your appointment so that they are aware and can give you reassurance.

 

Well you are now a third of the way through so it will not be long before you are waving them goodbye for the last time.

 

Helena xxx

Member
Posts: 4
Registered: ‎11-09-2018

Re: November 2018 Radiotherapy

Hi everyone

 

My first five days of radiotherapy are over and two more weeks to go - ending on 16th November.  So far so good, but I am dreading getting sore - which seems to be common.  It's been ok so far - I've got a friend driving me, so I'm not getting too tired.  And my appointments are all at the same time, and I usually get seen on time.Can't wait for all to be over though, and move on with my life!!!!

Member
Posts: 5
Registered: ‎04-11-2018

Re: November 2018 Radiotherapy

I’m so sorry to hear about your husband JWD, life’s just rubbish sometimes isn’t it. I hope things get better for you both soon. We don’t currently have a Maggies Centre, but I think one is in the planning stage at my Radiotherapy Centre and they have a Macmillan information centre. I have two friends who have been through breast cancer treatment, and one is coming with me next week to one session. It’s great to have their support, but equally I’m concerned that inadvertently supporting me might be upsetting for them, and bring back bad memories for them. Thanks everyone for your support, it really does help.
Member
Posts: 143
Registered: ‎09-05-2018

Re: November 2018 Radiotherapy

Talking of councilling, I start my HOPE course tomorrow. This was organised for me through the MacMillan centre at my hospital and my BCN.
Sp many people say how well I look and how well I've done to come through everything these past 6 months, but its the stuff inside my head that now needs fixing and thats the bit no-one sees.
If the help and support is there and its offered, take it xxxxxx
JWD
Member
Posts: 173
Registered: ‎24-07-2018

Re: November 2018 Radiotherapy

Hi Kim. I totally understand how hard all of this is for you. My husband just been diagnosed with secondary oesophageal cancer. I finished rads last week he started palliative chemo the day after and his not coping very well with side effects. I too get fed of people saying your so strong and don't know how you cope. They all mean well and care but we don't have a choice in the card life deals us..we have to cope and it's not easy. It must me awful for you with the added stress of losing your mom. Life is so cruel. I hope you get through rads and hope your hubby gets well too. I think counselling seems a good idea and I too maybe looking into it in the near future.. sending you strength love and hugs xxx Jo ❤
Community Champion
Posts: 9,663
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Kim

 

It will do darling, but I can assure you, being now 2 years post and 22 months post active treatment completed, things do get better and you do get back to some sort of "normal" albeit it a different one as a result of your experience.

 

Do you have a Maggies Centre or McMillan Centre near as they might be able to help with the counselling sessions, also speak to your breast care nurse, I know when I was diagnosed mine said that they could arrange some counselling for me when and if I needed it.  I actually had mine through work, my boss recognised that I was struggling and she sorted it for me.

 

I can totally relate to where you are with regard to your hubby, my partner has MS, is housebound and I am his carer so he was not able to accompany me on any of my appointments etc., I have a wonderful network of friends who stepped in to support me, however when you are caring for someone it put that bit more pressure on you, so please make sure you make time for you as well

 

Helena xxx

Member
Posts: 5
Registered: ‎04-11-2018

Re: November 2018 Radiotherapy

Thank you for your kind words, my husband can’t come with me as he’s needs cardiac rehab twice a week, as he’s just had a stent put in a few weeks after my cancer diagnosis, following chest pain. That’s in our small local hospital, even more family dramas! I think it’s just catching up with me. I think the idea of counselling later on might be sensible, if it’s still offered on the NHS. I think everything is just catching up with me at the moment.
Community Champion
Posts: 9,663
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Kim

 

I just wanted to send you a big virtual hug because you really need it.

 

It is hard enough contending with the diagnosis and all that imposes on us but you are also trying to come to terms with your mum passing, for which I want to send my condolences to you.

 

I remember when I was having my rads there was a day when I had just had enough of it all, my life being dictated for 5 weeks by this one apt, I told them I didnt want to do it any more, burst into tears, my lovely rads nurse hugged me, gave me a box of tissues and sat talking to me until I was ready to carry on.

 

As much as people are trying to be positive and thinking that they are boosting you, the comments do not help yes you are coping, yes you are doing well, because you have to, but inside you are still trying to make sense of what has happened to you and what you are going through, that will take time.  perhaps in the coming weeks you might consider getting some counselling which might help you to process everything and allow you to grieve for your mum and what has happened to you.  I know I found it very restorative as I was in a safe comforrtable environment with someone who did not know me and I could be honest about the way I was feeling, she was able to make sense of it all for me.

 

You are right about this forum and the ladies on here who can totally relate to what you are going through and feeling.  Come on here whenever you want there will always be someone to help and support you.  You can rant, rave, cry whatever here we are here for you

 

Helena xxx

 

 

 

 

Member
Posts: 5
Registered: ‎04-11-2018

Re: November 2018 Radiotherapy

I’ve had 7 of 20 sessions so far, the last 5 are a breast boost, due to a narrow margin. I’m starting to get tired, and my skin is itchy, so using cream twice a day, and keeping Aloe Vera gel in the fridge. It still feels like a mountain to climb to get to the end. It’s not helped by having a 56 mile round trip every day either, and twice a week I’m having to drive it on my own, as my husband can’t come on those days. My appointment times vary every day, so finding that hard too, some days they’re early mornings, and others late afternoon, so it feels like Radiotherapy totally dominates my life. The staff are all friendly, but lying on a table whilst they move you a little in the right direction, draw pen marks on your breast  whilst they call out measurements, and holding your breath for 20 seconds, just seems de-humanising somehow. I’m struggling with the concept of being a cancer patient anyway, but there’s no denying it when you’re having Radiotherapy. Lying there on your own, on a table, with the disembodied voice of a radiotherapist issuing instructions just seems to reinforce what a lonely experience it all is. Also my Mum died 8 weeks before I was diagnosed, and I haven’t had time to process that yet, and it’s her birthday next week, the first one since I lost her, but I’ll have to go to Radiotherapy, rather than be able to grieve for her as I would like.  I’m fed up of people saying “it’s good they caught it early”, or “you’re coping  so well”! I don’t have a choice about coping, and do what most of us do, put on a brave face, to spare others, when really my heart is breaking. Also Letrozole doesn’t help, I’m having 12-20 hot flushes every day, it’s just a constant reminder of how life has changed. I’m grateful for free treatment, and that modern treatment is very effective. Sorry for the moan, but I don’t think anyone else but fellow patients can fully understand how it feels to cope with the treatment, and the stress it brings.

Member
Posts: 10
Registered: ‎05-03-2018

Re: November 2018 Radiotherapy

Hi Everyone - Had hoped to start my radiotherapy 10 days ago in october  but had my first treatment session this  Thursday 1st November, the 56 days  wait time  made me anxious aka  56 days after 2nd Surgery.

 

Was told 15 sessions , and as always my expectations are never met as I assumed it would be 5, 5 and 5

I accepted as you have no choice  that appointments could be any time of day and and that I would know the times of the following week at the end of the 1st week

So had had two so far but wasnt happy to learn that my week #2 will only be  x 4 session as the hospital cant fit me in - on Friday which means I will have an interuption not of the standard two days over the weekend but 3 - Monday night #3 of 15 is at 7pm which isnt ideal but at least they are fitting me in, the man who gave me my appointment booklet assured me there was no difference to reocurrence rate if treatments are not consecutive and further informed me there had been recent trails yet everything i have read online states to the contrary so Monday morning I will email oncology and ask if they can find another hospital for Friday.

My journey from February to now hasnt been seamless made to feel am on a conveyor belt, after Radiotherapy and who knows how many weeks I assumed it would be 3 but now it will defo be 4 I then start on my endochrine therapy - taxmofen OR Letrozol was always referenced but its #exemestan dreading taking as it will as we know destroy all my oestrogen yet surely the body needs some oestrogen

I so grateful to Breast Cancer Care and will post on here my radiotherapy 13 more sessions to go,

Maybe I am doing my self a disservice pushing for 5 consecutive treatments as having 3 days off could be good but on the other hand it published studies show the reocurrence rate is higher for those who are not compliant ie miss a session even if they make up the session afterwards.

 

Member
Posts: 7
Registered: ‎12-10-2018

Re: November 2018 Radiotherapy

Hi emac, I had to go back for a second CT scan doing the breath holding too. It is a bit daunting knowing I will have to do that for each session. My treatment starts on Wednesday 7th - just want to get going with it now and get it over with. Hope all goes well for you, and everyone else on here 

Member
Posts: 7
Registered: ‎04-04-2018

Re: November 2018 Radiotherapy

Joining this thread as im due to start radiotherapy next week as the last part of my treatment (having had chemo and then surgery). Feel i have had the least preparation about what to expect. Went for my planning CT after seeing the consultant and changing from 3 to 4 weeks of radiotherapy as initially told, and then had a phone call to say they wanted to extend the area being treated to covered (which was already my breast, axilla and neck) to include both chest bone nodes as well. Had to go back to have another CT with breath holding to replan things so i feel a bit stressed. No one has been able to say whether they saw something on the planning CT that is a reason to change the plan or whether the consultant has just decided to change his mind and be over cautious....... Anyway, im glad im a swimmer as i can imagine breath holding for 30 seconds might be hard for some people. 

 

JWD
Member
Posts: 173
Registered: ‎24-07-2018

Re: November 2018 Radiotherapy

Hi fezzy. I've just finished rads and took Anastrazole. I wasn't told to stop have been on anastrazole since June. So far I'm managing with side effects I'm also on calcium and vit d.. side effects of rads are also so far so good.. hope you get on ok with the rest of your treatment. Jo xxx
Member
Posts: 52
Registered: ‎05-09-2018

Re: November 2018 Radiotherapy

Hi ladies I have been on Anastrozole for 9 weeks and just started rads, I was told it is ok to stay on them for radiotherapy but not if  you have chemo, I have been lucky that any se's I have had up to now have been manageable , but I wouldn't want to be coping with bad se's and rads at the same time, best wishes to all starting rads this month, all I can say is its not as bad as I imagined and the staff are lovely and always willing to answer questions, sorry your experience has not been so good Charlie.  Fezzy x