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What next , after treatment ?

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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 . 

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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 

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Re: What next , after treatment ?

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 . 

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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 

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Re: What next , after treatment ?

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. 

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Re: What next , after treatment ?

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 💕

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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

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Re: What next , after treatment ?

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.

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What next , after treatment ?

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 ?