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Finished my Radiotherapy and Treatment Feeling Lost.

16 REPLIES 16
Eglis
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hi

I’m due to start the course in June.

i completed the form and had a reply approximately two weeks later.   I expect they are still ‘processing’ your form but maybe it would be an idea to send a follow up mail.

 

Cumbrian Lady
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I signed up for the moving on course some 3 weeks ago, could not put a start date as I did not have one, not heard anything back - has anyone else filled in the form and started or not started the course.

PJWWOO
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hi Poppy

i am sorry to hear how you’re feeling- I am half way through my radiotherapy 15 sessions and an already worried about feeling lost afterwards! 
I totally get what you mean when you say everyone thinks that’s it you’re mended..... I felt my friends and family move on from being concerned as soon as my margins and lymph nodes were clear - they all felt relived and that because the outcome was good I should be happy!

No one else seems to understand that inside you feel broken and it is only after the treatment stops that you can start putting yourself together. 
I think the lack of support groups, throughout these Covid times, has been hard. It is so helpful to speak to those going through the same experience, only they really can understand.

There is a great paper that is definitely worth reading:

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

I have session 7 today so am counting down - I have asked for counselling from breast nurse who is putting me forward for it and May enquire about the ‘moving forward’ course that is spoken about on here.

Good  luck to you ( and to me as I know I will be feeling exactly the same). And thank goodness for this forum.

P Xxxxx

Cumbrian Lady
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I am working very hard at trying to take it as it comes if I feel tired I will let my body sleep if I feel like dancing (only kidding)...
I do not have anyone keeping in touch - not heard from my breast care nurse since after my op in March, the only contact on the horizon is a telephone call from the oncologist on the 8th of June - but I am not going to worry I do not want to be one of those who rings the doc etc at every little pain/concern.
Bought several new tops for the summer only long-sleeved t-shirts but it feels good to put something new on the cats were most impressed.
I am also back to writing again I like to write poetry as well as my crafts and getting the garden tidied up.
It is not coming easy/natural at the moment but once I make the effort I do enjoy it all - it would be so easy to wallow.

I am feeling a little sick at the moment (think it is the hormone tabs) plus my appetite has lessened and I ache first thing, so hard to get the body moving.  I also noticed my neck looks like a road map the veins where I had the rads have become very visible but my skin is not sore or itchy.

If able I hope to take myself to the beach for a small walk and some shell collecting tomorrow the beach is the place I let my worries flow out to sea.

Love, and a safe journey to one and all.

 

Poppy xx

Eglis
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I love your last paragraph Carmen.........can totally relate to it!
I’m doing the same thing.

 

Carmen Verandah
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I read that article and think I will refer to it again going forward. I’ve had no support or contact from my GPs since starting my cancer treatment! But I have a lovely breast care nurse at the hospital who always gets back to me. I was so relieved on Monday not to have to go back to the radiotherapy department but I guess I need to calm down and not start rushing around too quickly. I’m looking forward to going back to work at the end of June but only Saturdays as I’m a registrar and there is a lot of pent up demand for wedding ceremonies. It will feel odd to put on make up, high heels and smart clothes  again, (plus wig).

My skin is only a bit red and I get the odd pain in my breast, and the scar under my armpit is a bit swollen, but I guess that’s all from being microwaved! Thanks for that analogy Jan.  

I’m more worried about the side effects of letrozole. I think I’ve read too much about side effects so I hope I don’t get all of them. But it apparently offers 50% reduction in recurrence and of getting a primary in the other breast so it’s worth it on balance.

Poppy being on your own throughout all your treatment sounds really hard and you have done amazingly well to get through it. I’ve been living with my 92 year old mum for the last two years after leaving a long term relationship. She has had breast cancer twice so is a good role model, but I’ve also tried to protect her from worrying too much about me. She is also getting quite forgetful now, so I have to try to be very patient and it’s hard when I’m feeling a bit low. I think friends and family often try to reassure and encourage us, and sometimes I just want someone to acknowledge how tough it can be, and say yeah it sounds really awful for you! 

For me the hardest thing is not to stress too much about recurrence. I’ve told everyone I now consider myself cancer free, and that the letrozole is not an active treatment but a preventative medicine.  I’m going to try and enjoy and relish life and be grateful for all the good things, the lovely friends who have supported me, other patients I’ve met, these forums, the covid vaccines, the blossom etc. and allow myself to be vulnerable, miserable and happy.

 

Carmen 🌷

 

Cumbrian Lady
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

@Jaybro 

Hi Jan thank you so much for your reply and I agree with you right across the board.
When I was first given the cancer diagnosis I sort of (in my ignorance) thought of the chemo, surgery followed by the rads - never once did I think of all the other complications and drugs along the way let alone how my mind would cope with it all.
It is only after the medical procedures have ended that you really begin to delve deeper and begin to learn you still have a very, very long way to go.
At the moment I feel very protective towards myself I am not liking the hormone treatment (does anyone) seems unfair that we have to go through a sort of menopause again in order to try and stay cancer-free as well as many other factors associated with this treatment.
I am searching out clothing tops that allow me to feel comfortable as well as protecting my arm and neck (as I had lymph nodes removed).
I feel my GP has let me down as I also suffer from MH problems and am prescribed meds for it, my Doc knows I live alone so was going through all my treatment totally alone - but never once has he contacted me even when I rang the surgery all of twice (not about my cancer) I had to justify needing a callback.

I will come through this, well one has to the other option is not worth mentioning I would not even have contemplated treatment if I was a quitter.
I can only hope this will make me stronger whatever the long-term prognosis, after all, non of us know what is around the corner - do we?

Take Care All

Poppy xx

Cumbrian Lady
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Yes, that article is superb and I recommend all to read it - puts it all into perspective.

Eglis
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I found that article really interesting Evie - glad you posted it!

Jaybro
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hi Poppy

There is a huge sense of loss. You’ve been cocooned for so many months and suddenly that’s it: last radiotherapy treatment, a chance to ring a bell when it really isn’t the end of it all at all - and now left to your own devices. I remember feeling abandoned.

I can’t stress enough the brilliance of the article Evie has given you the link to. I read it frequently. Personally I think I did the Moving Forward/On course too soon. They had a cancellation and so I got a space within a month. But a month isn’t long enough to fully appreciate how different your life has become. So I did it again via Maggie’s 18 months on.

One thing to remember is that your breast care team is (or should be) there for life now. If you are wondering about hormone therapy, give them a ring. They’ll be able to explain why you are/are not having it. I completely agree with you about the gulf between GPs and hospitals. As soon as I’d been referred, my GP really didn’t want to know and one admitted she knew nothing about the side effects of chemotherapy. I was feeling so foul, I just let it pass but that’s unacceptable. I appreciated her honesty but she should either have made an effort to find out in order to help me, her patient, or referred me on to someone in the practice who did have the experience. After all, we are back in their hands now.

I’m going to (reluctantly) be a balloon-pricker now: you have finished radiotherapy but radiotherapy maybe hasn’t finished with you. It’s quite likely that in the coming weeks your breast muscles will feel the full impact of what I call the microwave effect. Mine started about two weeks after the last session. Ring your breast care nurse if it’s worrying you. Ask your GP for pain relief if you need it (if you had chemo as well, you may well experience neuropathic pain which can be treated differently from pain pain - and your GP CAN deal with that). 

I wish you all the best as you find your feet again. You may find you look at some things very differently now and that’s normal. Try to be patient with those friends who act as if it’s all over now and can be put behind you as a bad experience. It’s not their fault and really they think like this to make themselves feel better. It certainly isn’t all over. You need to re-establish a new sense of safety in your world and come to terms with the realities of breast cancer. This doesn’t mean obsessing over every lump and bump and terrifying yourself that it’s come back - it means coming to terms with the statistics but not letting them impinge on a happy, healthy life which statistically you have a strong chance of enjoying. I emphasise the word ENJOYING.

Be happy

Jan x

Evie-S
Community Champion

Re: Finished my Radiotherapy and Treatment Feeling Lost.

@Cumbrian Lady - I remember the feeling you describe when I finished my treatment, and I have seen many similar threads since. It is a shame that there is no support once we finish - the physical treatment might have finished but the mind and mental side is still racing and wanting answers. 

I don’t know if you have seen this article, various people recommended it to me and I’ve posted it before (apologies if I have sent it to you already) -

http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what...

I decided to have some counselling after my treatment ended, to try to help me process what had just happened and I found it very useful. That might be something to look into?

@grannyp - you also sum up well that after treatment feeling. People assume we are now “fixed” as if we had had a broken leg, but it’s not like that. I love your comment about wanting to grab life with both hands, if only this virus would go so we could get on with things! But in answer to your question, there is no “right thing” to do though after treatment, just whatever helps you best.

Evie xx

grannyp
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hi everyone. I think it is a very common reaction to feel bereft, lost, confused, etc when active treatment ends. It is rather like losing our comfort blanket - we have had regular appointments medical people around us for several months & there has been someone at the end of a phone line if we have had a problem. Suddenly we are cut adrift & in addition many of us now have more time to think about what has happened to us. I suppose that now is the time to process everything. 
I must admit that so far I haven’t had that dreadful feeling that so many experience. I have had a few moments this week since the end of radiotherapy but they have come & gone. I have had a busy week & have lots to do over the next few weeks, so it may well be that I will have my feeling of loss & wondering where to go now at a later date. At the moment I really just want to grab life with both hands & get on with everything- but is that the right thing to do? Who knows!! 
I am sure we will all come out of this & start to regain & rebuild our lives soon. xx

Eglis
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

I have just signed up for the course too.

I also often feel life should go on but it can’t go on as it was before...... I look better but my mind is still full of stuff that isn’t quite resolved yet.  The journey continues but does at least get easier.  Thank goodness for yoga!

 

Cumbrian Lady
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

@EglisI have signed up for the course have no idea what it's about but will give it ago.
I am finding the void of ending treatment difficult to come to terms with. Since I started chemo last August it's as if my whole body and mind has been tuned into my treatment and how I would deal with it.
I found myself counting down the days of treatment then waiting for surgery followed by 15 sessions of radiotherapy, then suddenly it all stops and you are alone going home treatment finished - with NO ONE to talk to about it all. Yes, there is the happiness at it all being over - but also a feeling of anti-climax almost being left to 'sink or swim'.

I am trying so hard not to mind my flattened huge right boob, which is twice the size of the other one (it will reduce in size a little so they tell me) the hair is growing back (again not a real problem) the scar under my arm along with needing to protect that arm after node removal - it all takes a lot of acceptance and coming to terms with at a time when you are low and still afraid of the future.

Time will help I know lots of others have been there and far worse - anyone else noticed that once your treatment is over people seem to think you are mended and your body and mind should be working as usual.

Not sure I am making any sense 😁 so sorry for rambling...

Poppy xx

Eglis
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hello Poppy

I can totally emphasize with you.  One part of the journey is finished but the journey still continues.

I’m thinking about doing the moving forward on line course.

Am happy to ‘chat’ if you want to ......

 I don’t know anyone in same position as me and it is good not to feel alone.

Good luck with your ongoing recovery

GM
Member

Re: Finished my Radiotherapy and Treatment Feeling Lost.

Hi

i finished my radiotherapy about 2 months ago and i found walking out on the last day very difficult and i probably cried more that day than at any other time (apart from the original diagnosis).  i felt quite abandoned and similarly i was given a date for a telephone follow up some while afterwards. 

i think it is harder when all the treatment has finished because only then can you begin to process everything and dealing with questions from people like "what scans and check-ups will you have now" are difficult.  in reality it seems that until you have a mammogram a year after diagnosis no-one will be checking up on you and you just have to get on with life!  i am just starting a Moving Forward online course through Breast Cancer Now and i am looking forward to it

Cumbrian Lady
Member

Finished my Radiotherapy and Treatment Feeling Lost.

I finished my last rads session yesterday all went well. it was a little sad as I also said a sort of goodbye to two lovely ladies I met (one was the lady who both had our ops on the same day) so we had a real connection we are all though, going to keep in touch and meet up again which is good.
I seem somewhat lost at the moment as apart from a booked telephone call from the oncologist in early June nothing else has been mentioned about follow-ups. I was given a leaflet stating my treatment was over and to where the treatment was applied along with a leaflet as to what to and not to do as I recover from the treatment.
Is that it - just waiting for them to contact me - what about other meds which I was told I would need to go on owing to taking Letrozole there is NO point in asking my GP as they have had no contact with me during any of my treatment impossible to even get to talk to them.

I just feel a little abandoned (which I know is normal) with no port of call for me to sail into.☹️

 

Poppy xx