What next , after treatment ?

[Suzied366]

Me too my life is full of what ifs the best thing is finding places like this it’s great to chat with others feeling the same it does help 

[Lucy51]

I promise you, you won’t need any courage, everyone I spoke to was so kind and really wanted to help. Call on Tuesday and get the ball rolling, you’ll be so glad you did. Telling someone how you’ve felt and hearing them say they know that feeling or that fear takes a huge weight off of you. 
Hearing from the lady I spoke to some of the thoughts she’d had or how upset she’d been made me realise I’m not alone anymore, which is what I felt I was, completely on my own with all of this. Like I said before there’s always people here to help xx 

[kmary]

thanks @Lucy51 I'll try and summon up the courage to call the Someone Like Me service if I can't cope but putting my thoughts in writing here and the validation from others who have gone though it too is helping. Take care Kx

[Lucy51]

Hi @kmary 

post treatment is a very difficult time and something that effects everyone differently. I’m glad you’ve downloaded the Peter Harvey piece as it’s so true. I’m 2 years on and still find things hard. The fear of reoccurrence is never far away but I’ve found the shock that this actually happened to me very slow to process. I read a book called The Cancer Survivor’s Companion which was very helpful as well as posting here. When I find things overwhelming I still post here and find the help and support invaluable. 
When thinking about recon the nurses here put me in touch with the Someone Like Me service to speak to someone who had been through a similar experience to me. That was a massive help, we had some many things in common and it was so lovely to talk to someone who understood. I thought it was too late to speak to someone after treatment but I was wrong and the lady was so lovely. You can speak as often or as little as you want it’s entirely led by you. Definitely something to think about if you can find a friend of family member that understands. 
You’re  not alone so please don’t think that, please keep posting here if you need to, take care xx 

[kmary]

Thank you so much for the support Evie-S. Yes I have downloaded the Peter Harvey article, I haven't read it all as yet, but it's making sense fo far. It's good to know this community is here to help me through. Kx

[Evie-S]

@kmary - I know your post was addressed to Lucy51, but I just wanted to jump in and welcome you to this lovely forum where I hope you will find lots of support and a safe place to offload and share thoughts. 

I think you have scrolled through the previous comments and posts, but I wondered if you had seen the link Jaybro posted by Peter Harvey, it’s in her first post if you scroll almost to the start of this thread. Let me know if you can’t find it or the link doesn’t work.

You are most definitely not alone in how you are feeling. It’s important to work through your feelings in whichever way helps you most, so do chat on here as much as you like. I remember one helpful post sometime after I finished my treatment, almost 4 years ago now, where someone described having a “fear goblin” sitting on their shoulder, and that when the fear goblin appears they try to lock it back up in its box. That image made sense to me. The mental side is hard to deal with. We get thrown into appointments and surgery/treatments for the physical issues, but only once those are finished do we have time to address the mind.

Do remember that you can always call the lovely nurses on here, the number is at the top right of this page, and chat through your thoughts with them. And there is always the Someone Like Me service if you feel you would like a more one to one chat rather than the forum. Sending big hugs to you, Evie xx

[kmary]

Hi Lucy51

This is my first post and finding your response to Kezzybear68 has resonated with me. I had a lumpectomy about 6 weeks ago and my treatment is now finished but I too feel very low sometimes and cry inexplicably every now and again. I find it hard to put into words how I feel to my family and friends so just keep it to myself until it passes. Reading the supportive advice posted by you, jaybro and Evie gives me some solice that I'm not alone in this and it will take as long as it takes to recover emotionally as well as physically.

I hope the time that has passed since your first post Kezzybear68 has brought you closer to recovery and to a better place.

Wishing you all health and happiness Kx

[Mai7]

Kezzybear,  Anxiety is normal and post-treatment is when we pick up the pieces whilst our loved ones breath a sigh of relief.  They’re glad we’re alive and we wonder how the heck to pick up where we left off before treatment.

I managed to dedicate an entire book to helping with thoughts:  ❤️❤️❤️❤️

Thoughtful Bugs: From mayhem to mindfulness https://www.amazon.co.uk/dp/1838286012/ref=cm_sw_r_cp_api_fabt1_2oaTFbT8HF9AG

[Elly]

Hi,

I completely relate. It was the same for me too when I finished my treatments 8 months ago. After a few months, I ended up figuring out a morning routine that was really helpful, comprising of yoga/lymphatic yoga/meditation/EFT tapping/dancing/stretching, varying and alternating between these daily to keep it interesting. I found amazing Youtube videos to follow that helped me move forward mentally, emotionally, and physically. If you are interested, or anyone else is interested, please let me know and I can share this morning routine with you :))  

Elly xoxo

-Together we can be triumphant

[Smm]

Hi,

yes i know exactly what you are feeling. I finished my Radiotherapy in February 2019 and returned to work the 1st April. 

Friends and family are just relieved the treatment is over and expect you to bounce back to how you were before because they don't understand how you feel unless they have been through what we have themselves.

I felt a bit lost as once my treatment finished and all the boxes were ticked off, it is hard to keep motivated and busy but as they say time is a healer. Fresh air and exercise always lifts my spirits. 

Did you take up the offer of the wellbeing treatments ? The ladies were so lovely and it was something i would not normally treat myself to but am glad i did.

You will feel better it just takes time.

xxx

[Jaybro]

If you had paclitaxel or docetaxel, the tingling could be peripheral neuropathy. Mine comes and goes. I think it’s going at last (just the vaguest numbness of the toe and fingerpads), then I get the tingling along the hand and fingers/foot and toes again, usually the outer ones. That’s something else to discuss with your team. The breathlessness could be the fatigue, since you’ll have your blood cells back to normal by now. It took me a couple of months to manage the stairs to level 1 at the hospital without having to stop a few times! Basically, surgery removes the disease and treatment makes sure it’s gone for good. The price is the risk of a f**** up body for a while. Sounds like you like me, unlucky with the side effects? But it’s not all bad, honest. Things do get better, with tiny setbacks, but always towards the better!!

Be kind to yourself, be patient and listen to your body. It needs a lot of tlc (but it may need a kick in the butt occasionally). Best of luck x

[cambo55]

Thanks , I have been putting a pillow under my arm since Saturday, so hopefully this pain will ease off . I’m due a call again next week to see whether my pain has waded off .Since I finished chemo in December , I have also had tingling in hands and feet ! And get breathless also when walking up stairs . 

[Jaybro]

Hi cambo 

I suggest you post your message again - as a new post - so more people will see it and you may get more replies. You won’t get an alert for this but hopefully you’ll check back.

In the meantime... I thought radiotherapy was a doddle. I got a mild itch front and back and that was that. Then about 12 weeks later, the burning pain started. It’s hard to pinpoint what makes it different from pain but I use the analogy of being microwaved inside! I had a mastectomy so I’ve no breast but either side of my scar, in what little breast muscle I have, I still experience quite a savage pain. Part of my problem is that chemo caused some neuropathic pain and that heightens any pain so, fortunately, I have pregabalin prescribed to reduce the severity. It doesn’t take it away sadly.

The fatigue is normal, a leftover from chemo as much as radiotherapy and Macmillan have a useful book on managing that (you can order it from here I think). I’m more lethargic than fatigued and I’m still wide awake at 2am but dead to the world till 10.

So, now I’ve made you thoroughly miserable, some more positive comments. I’d advise you to place a pillow under your upper arm/arm when you sleep. It does mean having to sleep on your back and probably snore but that’s better than waking to pain throughout the night.. The elevation seemed to help my breast muscle relax and the pillow prevents you rolling over. You can actually buy a mastectomy pillow but ...

I was having physio every 2 months till lockdown and one thing my physio advised was skin on skin massage. It’s something to do with how your brain interprets signals. Gentle, small circular movements working around the painful areas can ease or actually stop the pain (did it this morning for about 10 minutes and I was mobile again - but it may be easier with no boob). For the tightness under your arm, a lot depends on the cause. I had axillary clearance and now have a tight ridge of tissue under my arm that the physio says is caused by everything left after surgery collapsing into the space and clinging together. So she gave me exercises and massage to do. When my arm is stretched, firmly massaging the length of the tightness regularly seems to help. It doesn’t go away (or hasn’t yet) but it becomes more flexible and wards off cording.

The other thing you should do is check with the breast care nurse based in radiotherapy (someone most radiotherapy patients don’t even know exists unless they’re referred to him/her) and check what you’re experiencing is right for this stage and the radiotherapy you received. Your pain will then be on record and it will be easier to get a physiotherapy referral if you decide you need it. Ask them about pain relief. They may advise you to consult with your GP who may prescribe gabapentin (great for pain) or pregabalin (ok for pain but great for anxiety). 

Hope this helps. At diagnosis, you think surgery and it’s over. It’s endless isn't it - but it’s worth it.

Jan x

[Lucy51]

Hi Cambo55

im sorry you’re still struggling with the after effects and pain. I didn’t have radiotherapy so can’t offer any help but im sure someone will come along soon who can. 

I can sympathise with the discomfort laying down as I can’t lay on my mastectomy side a year on. 

Its still very early after your treatment has finished so your body is needing lots of rest to recover. If you’re able to rest do so when you need to and hopefully things will improve. 

Take care xx 

[cambo55]

Hi , finished my radiotherapy 10 weeks ago and the side effects have been worse than my chemo.

sharp pains in my breast , tightness under arm pit when doing my exercises .Sleeping is a pain too as when I go to lie on side of radiotherapy treatment is painful.Fatigue is still bad too I can fall asleep of an afternoon , then around 8 i start falling asleep  again so normally go up to bed just after 9 . 

[Kezzybear68]

Thank you all for your kind replies , it definitely helps knowing my feelings are quite normal . I’ve got myself a nice notebook and I’m going to right all my feelings down along with positive quotes to get me through , it’s easier knowing I’m not alone , thank you all again , hope you are all coping ok with this lockdown 

sending you all lots of love xxx

[Evie-S]

Hi Lucy - thank you so much for your very kind words, that really meant a lot to me. Your reply and advice was really helpful too - it’s so important for us to know that we are not alone and that others understand exactly what we are going through. This forum really is a special place isn’t it.

Hugs to you, I hope all is well with you. Evie xx

[Lucy51]

Hi Kezzybear68, 

i haven’t got much to add to the excellent replies you’ve had from Jaybro & Evie but just to reassure you you’re not alone. 

I can look back to a post a year ago, being the same as you approx 3-4 weeks post treatment feeling absolutely dreadful asking why aren’t I back to normal yet? I’ve had my op, I don’t need anymore treatment, I’m so lucky but I can’t stop crying?? Family and friends felt the same but i hadn’t told them how I felt so it’s not surprising they didn’t realise. 

Of course I’m lucky my treatment was quick and I’m ok but having cancer, a mastectomy and a failed reconstruction isn’t. I wish I could say everything is good now but it’s taking a long time to process what has happened and on good days I understand that but on others it feels very difficult. 

Give yourself time and patience and you’ll get there, sending love and kindness to you xx 

jaybro & Evie, you always give such great advice and I just wanted to thank you both for that xx 

[Jaybro]

Hi Kezzybear

Have you thought about a blog? It’s a great way to write out your thoughts and feelings and you can keep it for yourself or put it in the public domain and let your friends know about it. They soon read between the lines and ‘get’ you better. Of course, you change names - none of my medical professionals is identifiable! I started mine as a personal journal and, interestingly, my closest friends have shown little interest. I think they knew enough. But through it I’ve re-established contact with childhood friends. I even have a reader in Portugal. S/he has been loyal for 14 months and I have no idea why s/he reads it. I’d love to know who they are!! My blog is www.janonlybc.blogspot.com - it’s a free resource.

Happy writing, whatever format you choose. 

[Kezzybear68]

Thank you so much for your reply , I think I’m going to start a journal it sounds a good way to get my thoughts out of my head , I’m not very good at sharing my feelings face to face and I’ve been let down by friends who were supposed to be there for me , so this forum is brilliant and there are so many lovely people on here . 
There’s so many women who are going through or have gone through what I am at the moment and that’s really helping already 

Once again thank you 💕

[Evie-S]

Hi Kezzybear68 - I agree with Jaybro's comment that it is very normal to feel low following the end of treatment. For a while you will have been going regularly to appointments, surgery/radiotherapy etc and then suddenly you are free of them and don't have that regular medical support any more. Plus while it's all going on you almost don't have time to think, then treatment stops and you realise what you have just gone through.

I remember reading posts like yours while I was going through treatment, and I only really understood them once I finished treatment. I also remember people expecting me to be back to normal and "fixed", just as if I had broken my leg and it had healed.

Everyone will deal with things differently, but most people will need time to come to terms with everything. As you have said yourself, take as much time as you need, it sounds a cliche but be kind and gentle to yourself and allow yourself the time. Lots of nice treats too while your mind and body both heal. People talk about a "new normal" and personally I like that phrase. It can mean altering your outlook on things, changing exercise/routine etc, whatever you like. It's important to take one day at a time and not look too far ahead. I had some counselling after treatment and one thing she suggested was to keep a journal and write down say 3 positive things that had happened that day, from receiving a phone call to seeing spring flowers, whatever - it's supposed to help retrain your mind.

And a book I always recommend, that was recommended to me, is The Cancer Survivor's Companion by Frances Goodhart and Lucy Atkins.

My best wishes to you as you recover, and please continue to chat on here if I or anyone else on here can help. It is a wonderful safe environment to offload without judgement.

Evie xx

[Kezzybear68]

Hi Jaybro ,

Thank you so much for sharing the article with me , it all makes a lot of sense , I think what I need to do is take a step back and take my time , it’s only been 3 weeks since I finished treatment and I think I’ve got a long way to go yet both physically and mentally.

Thank you for taking the time to reply , I really appreciate it x

[Jaybro]

Hi Kezzybear

Absolutely normal. You have had the trauma of a breast cancer diagnosis, followed by a pretty brutal assault on the body and the emotions. You may have well have suppressed a lot of your feelings to protect others or just to get through. That’s a huge burden. It’s often likened to a rollercoaster. And now it’s all over but you’ve a pandemic to contend with. Tell me who could handle all that without beginning to feel some cracks.

You say about things getting ‘back to normal’ but that isn’t going to happen - there will be major and minor adjustments to make your new normal and you’ll need to re-educate all those well-meaning friends and family. They want to believe things are back to normal for your sake as well as their own. This is an excellent article one of the nurses posted a while back. I still read it now and then, whereas I used to read it daily to keep me grounded: http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what...

I hope you find it as helpful as I did. All the best - small steps, one at a time.

[Kezzybear68]

Hi , this is my first time posting , I was diagnosed with stage 2 lobular breast cancer on 17/10/19 , I had surgery in December and finished radiotherapy 3 weeks ago , I’m really struggling at the moment as I don’t know how I should be feeling , I feel as if I’m in limbo , and I feel as if some friends and family think that’s it I should be back to normal . Is it normal to be feeling so down when I should be happy my treatment has finished ?