Treatment finished

[galgo]

Who thought like me that once Chemo. Operations . and Radiotherapy was over that would be it and you just got better. For me 5 months after all of the above I am worse now than when I was having treatment I can't see me ever being the same again I haven't the same energy these homone tablets give me bone pains

[Jennymary]

Hi galgo, firstly congratulations on completing your treatment. It will take a while to process all that you've been through, so give yourself time to allow this to happen, I had lumpectomies and radiotherapy, no chemo but it greatly changed me as a person, to such an extent that one day I rang Macmillan and during the course of the conversation I came out with 'i'm the same Jenny as I was before the cancer but also very dufferent', are you back at work, for me going back to work was the hardest part of my cancer journey, but I changed jobs nearly 3 years ago and I love it to bits, so give yourself time to adjust to the new you and gradually life will get easier, good luck xx

[galgo in reply to Jennymary]

Thank your for replying I am retired with lots hobbies just hard to move on but I suppose early days yet x

[carolinenailsea]

I remember when I got my diagnosis I thought I would have a few weeks treatment then it would all be over. But of course the treatment is a long haul and it does take a long time to feel 'like yourself again'. Some people on this site have said that actually you are never the same again and that you emerge as a 'different and new me', they have spoken about 'a new normal'. That resonates with me. I am not the same and get frustrated that I don't have the same energy, hair!, feelings about life and that there is always 'something there in the background that is a source of worry - ie it will come back'.

Having said that I now lead a much healthier life, I exercise regularly, do voluntary work and have lots of new friends. Empathy is a big part of my life. I am working on 'living for today' and not worrying so much about tomorrow- work in progress I would say. I retired (reluctantly) at my diagnosis and now have more time to do stuff I enjoy. My allotment is a source of peace (and of course veg), I spend more time with my family and my home is getting a real spruce up.

Hang on in there, maybe hang out with others who are in a similar place to yourself to help you laugh (and cry). Most of all be kind to yourself, recovery takes longer than you expect. I wish you a happy life and future. xxx Caroline

[galgo in reply to carolinenailsea]

Good morning I also have a allotment and love it and agree always thinking it will come back but my husband died of cancer 2 yrs ago and we did everything by the book it still came back so I kind of live life for living just get frustrated with aches etc

[Janny1306 in reply to galgo]

Hi there Galgo I understand how you feel but you should try not think that way !Make yourself believe you've beaten this thing, don't give it room in your head push it further from your thoughts day by day.Having also lost my husband to cancer, my parents and a good friend too, all gone since I was first diagnosed I've long since realised how very fortunate I've been to have had 13 more years ( and counting,)of life I didn't think I would get to live.Hot sweats and a few aches and pains seem a small price to pay. I wish you all the very best in your recovery, be kind to yourself ,but be strong, I,m still working because I can't get my pension yet , so I keep busy and don't really give cancer a second thought.My scars are there to show it was there,! but now it's gone !! 😘

[PerformancePoet]

Hi galgo

I’m experiencing the same 😢 and for me this is the third time so I knew it would be coming. It’s been 15 years and each occurrence has depleted me further.

It does get better after a few years - or maybe I just became more accepting as I got older!

The biggest thing that has made a difference to me has been ‘sorting out’ my mental understanding of life. I’ve done counselling, psychotherapy, CBT, NLP, you name it; all to no avail. Then I came across something that is rather hard to describe but is magical and seeing this has allowed all the worry, frustration, regret, self loathing, etc etc to drop away. I still get caught up from time to time, but it shifts again very soon. I now help others to experience this too through workshops, talks and conversations/coaching. It’s best described as the ‘spiritual’ understanding

of how life works and is practical and insightful- not at all ‘woo woo’!! Who we all are is something much bigger than the tired and painful bodies and frustrated minds we experience, and seeing this has changed my life beyond measure despite the limitations yet more treatment us placed upon my body and how painful and stiff my ankles are as I struggle to walk when I get out of bed each day.

If you’d like to know more I’ll happily have a chat with you. And if others would like to join in we could do a web class 💛

Sending you much love.

Fiona

[galgo in reply to PerformancePoet]

That sounds like a good idea.I think my problem is my husband died of cancer 2 yrs ago we got told he was cured etc etc .Bought new car booked holidays and 3 months later it was back in his brain after all the treatment he had so Im a bit sceptical about all this cancer treatment

[PerformancePoet in reply to galgo]

I hear you ❤️ I lost my sister two years ago to a brain tumour. I take this as a sign for me to get on with living exactly as I want now! Although this is still a work in progress! Have private messaged you a contact number for that chat xx

[Birthday2018 in reply to PerformancePoet]

Hi I’m interested in the coaching/conversations/workshops etc on spiritual understanding? Can you give me anymore info or let me know where to search this out for myself please? Thanks xx

[PerformancePoet in reply to Birthday2018]

I have sent you a private message. As yet I don’t advertise - it has all been word of mouth, if you know anyone else’s who might be interested then do let them know and I could run a group workshop.

Best wishes

Fiona

[Birthday2018]

Hi I’m in a similar place to you, had 6 months chemo, surgery in January this year and continued herceptin which finishes in August. Plus anastrazole meds for 10 years. I am feeling now that soon the herceptin will end and then what? I am struggling moving forward and to be honest know that I will miss the hospital appts. It sounds mad to my friends but they aren’t me and i have felt like someone is looking after me since last year to date and soon that will end. I have a breast care nurse but it seems even speaking to her is hard now, i feel selfish sometimes as I am sure there are loads of new people being diagnosed who need more help but I still feel that I do. I have returned to work but even that isn’t helping me other than the social side. The office is going to close and my job is not there as it was before all this happened. I’m not too bothered about that as redundancy could be offered which I will take. I feel after breast cancer and all that that involves I feel different, I want different things, a better life everyday. Time is precious and this has made me feel I have another chance at life (all being well as very worried about recurrence etc). It is such a hard thing to go through and also explain. I’m so sorry about your husband, it must be an added sadness for you after what he went through, stay strong.

I have been in touch with breast cancer care who offer a ‘someone like me’ service. You are paired with someone who is much further on than yourself, who had a similar diagnosis or the same and maybe able to talk to you about the things you are struggling with or just need to talk about. I feel I have to try and find my own support before the hospital visits end and I am left alone. I live alone and on top of this diagnosis last year I have suffered with anorexia for over 30 years so not in the best of health at the start. I have however managed this well when on treatment as was told and did listen to the doctors that if I didn’t eat better the treatment effects would be worse and I would probably end up in hospital every time. I knew I didn’t want that and tbh when diagnosed I realised the most important thing in my life now was to try and get through this and better. My eating was not my main priority anymore. I don’t know why or how this happened but it did and my body really helped me through it and fingers crossed, although not has automatic as when on treatment, my eating is continuing and I do feel better for that. I feel so grateful to my body, that after years of abuse really, it pulled me through and did cope with the effects quite well.

I do find the anastrazole hard going as like you the joint pain and stiffness is hard to deal with. I have started a Pilates class at The Haven in Leeds which I am finding helpful.

You have done so well up to now so please stay positive and maybe look into your own support ie Macmillan, breast cancer care and see if there is anything which you think could help.

I wish you all the best in the future and keep in touch and let us know how you are doing xx

[galgo]

Good morning so similar treatment finished my chemo in Feb and Radiotherapy at Leeds general in May on Anastrozole and Herceptin that finishes in October sounds silly but I look forward to my 3 weekly treatment just because someone asks how I am.I also live alone and its hard work trying to do everything my fingers are not the same Im awake most of the night I just thought after I rang the bell that would be it but its not and don't think I will ever be the same xx

[Birthday2018 in reply to galgo]

It’s so much the same as I feel. I too look forward to my 3 weekly appt and will be sad when it finishes this month. It feels like a loss, you hand over your care to the hospital at the start and then when all is done they give you it back to manage yourself scary. I too live alone and it is so much harder, i have a friend diagnosed before me but who is happy no hospital now and is not on the hormone tablets as her cancer was a negative one so not necessary for her. She cannot understand my thoughts but she is married, retired and her life is different to my own.

We have to try and make the most of all the good things, getting up everyday, seeing a beautiful day, sun shining, friends to meet up with etc etc. I try to stay positive all the time, we are lucky and no matter how hard some days are we are alive xx

[carolinenailsea]

Reading the posts today makes me feel very sad. Life can be really cruel. Its so much harder when you are on your own. I wish I could offer something to make things better. I suppose you just have to look for the good things where you can amongst the sadness and loss. Sending hugs to those of you who are finding life so hard right now. Caroline xxxx

[pegomh]

I think my mind could only handle that thought...that it would all be over. I did change my hormone 3 times because of the side effects. I’m 2.5 years from treatment and doing great. NED. I have not worked on my core muscles and am a little off balance at times. I am grateful every morning...for my coffee, for NED and for not working. And I meditate now.

[Jennymary]

To all you lovely people coming to the end of all the hospital appointments, I was there in 2014, my last radiotherapy appt was Friday 24 January and I began thinking that on 25 January I'm done and they don't want me any more, how will I cope. I coped in my own way by switching it around that it wasn't the hospital that didn't want me, it was me not wanting them, after I'm quite capable of going to the shops on my own, so gradually I let go of them, at the same time knowing that they're at the end of the phone if needed, it took time but gradually I got my life back, hope this helps xxx

[Debster2016]

Hi galgo I too am sorry to hear you are struggling but I believe it is normal for us to feel odd, out of sorts and not back to your old self when treatment finishes and despite knowing this I was still surprised by this myself! It was nearly 2 years after my diagnosis that I went back to work and I found myself loving being back at work. I felt like the last piece in the jigsaw puzzle of me had been put back into place. It felt good. However! My hair has been growing for almost 2 years now too for which I felt eternally grateful. It this year it has been growing more quickly! Proving the chemo hangs around way past the end of treatment. And once I was able to scrape it all back into a scrunchie - in May - I felt once again that THAT was the last piece in the jigsaw puzzle of me and my life returning to normal. I have more energy now, 2 years post diagnosis then I had this time last year, one year post diagnosis, even though I felt well, normal this time last year. I remember one of my oncologists saying it can take 1 to 2 years to get back to ‘normal’. I now know what she meant. It has taken me 2 years to both get back to normal and to appreciate this.

Yes I am lucky enough to be happily married - no kids - and I received the best support from my husband - I consider myself so lucky in this.

I too seem to have clung onto hospital appts even tho I would say that I didn’t miss the end of the hospital contact associated with treatment. However after treatment ended I was able to attend a weekly swimming pool session in the hospital with breast cancer ladies. This was and still is a great source of companionship. We still meet up once a month!

So that’s my story to date. I hope you find something helpful within it. I would like you to be kind to yourself (something I finally understood soon after treatment finished ☺️), be appreciative that chemo can hang around for a while! like a year and a half? Know that your energy levels will improve over time. I guess my message is, apart from love and hugs and sympathy and support, give yourself time. We are here to share help and support by exchanging thoughts and experiences and tips. An online support forum if you like. I also found the swimming ladies a terrific source of support, perhaps there is some kind of support group nearby you could join?

You have my deepest sympathy at the loss of your husband, it’s not surprising that his cancer and treatment resonates with you still. If it is any consolation- and if it’s the opposite please please forgive me - but I was reliably informed! by many of my medical team members that breast cancer treatment is curative and again as the years (2) have passed i have gradually increased my belief that this is the case with me.

Wishing you some peace love from Debbie xxx

[galgo in reply to Debster2016]

Thank you for your reply it helped so much knowing I'm going to get stronger and back to normal in the near future xx

[pegomh]

Hello Galgo, sweet girl. It will get better, I promise! You made it ... woohoo. I am 2 years finished and it wasn’t until after 1 year I started feeling normal again. I think my mind couldn’t accept that it would take that long, but it did. I tried 3 of the aromatase inhibitors with Tamoxifen now. The other two just had too much bone pain and I was ready to decide my quality of life was more important. Luckily I don’t have the bone pain, but I do have sweats that are annoying. I also started Effexor for the first time in my 60 years. Life is very good now. I hope it gets easier soon.

[galgo in reply to pegomh]

Thank you for your reply I also tried 2 aromatises before I found one to suit me.I don't sweat anymore but do have bone pain hope and hope its the Hercptin thats nearly finished and not the hormone tablet xx

[Loulou669]

Hi I am the same with tiredness , I take supplements, Folic Acid and Aloe Vera juice as it helps with my energy levels and reduces the bone pain . Hope this helps xx