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Post treatment

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Member

Re: Post treatment

Hi just wondered how you’re all doing? 

 

Had an appointment to see the plastic surgeon today and discussed the pain I’m in post mastectomy. It’s definitely getting worse and couldn’t understand why. Apparently I should be doing desensitising massage??  which will relieve it. I don’t know why I wasn’t told that at the time and I wouldn’t be in so much pain or have to delay my reconstruction. 

 

I seem to have gone backwards over the last week. I’m so up and down all the time. I’m getting frustrated with myself, I just don’t get why I can’t pick myself up. I wish I could have a break from it all!! 

Member

Re: Post treatment

Hi Julie, 

it does sound as though we’ve had very similar experiences and struggle with the same things, really appreciate you replying

 

KJ xx

Member

Re: Post treatment

Hi Lucy51

I am exactly the same. I do everything 100 miles an hour and want everything done now. That's why I've struggled ( if that's the word ) with mindfulness. 

I do need to be kinder to myself though. I was told that in the taster session yesterday.

Julie xx

Member

Re: Post treatment

Hi Julie, that’s the hard bit, putting yourself first as we’re not used to doing that. 

I feel selfish doing that and that’s when I get upset with myself for struggling so much now. 

Ive always just carried on and got through stuff but this time I don’t seem to be able to. 

Knowing that others feel the same makes it less isolating which is a good thing. 

Until now I’ve just felt there was something wrong with me and couldn’t understand why I can’t cope. 

I did 2 courses about 2 months after treatment as well as the CBT counselling and it was probably too much. My doctor thought I was trying too hard to get back to normal which was having the opposite effect. 

I really hope the counselling helps and keep in touch xx 

Member

Re: Post treatment

Thanks Philippa

I really appreciate it.

Julie xx

Member

Re: Post treatment

Hi Lucy51

I finished treatment a while ago and that's when I hit a brick wall. I felt as if I had no support but now everything is coming at once. I'm finding it difficult to fit it all in.

I think I need to be kinder to myself and put myself first. It is difficult though when I have so much to contend with besides BC.

xx

Member

Re: Post treatment

Hi Julie, 

lovely to hear from you and sorry you’re still struggling with things. Is your treatment ongoing or have you finished? 

Sometimes your not ready for things or you don’t bond with the right counsellor so you have to try someone new. 

Im on a waiting list for mindfulness which I hope will help. I struggle to focus at times. 

I think that’s quite an accurate description about ruling your life, sometimes it’s all I think about. 

I like to hear how the counselling goes, hope it works for you xx 

Member

Re: Post treatment

Hi Juliewulie

Thinking of you too , keep chatting on here , we will get through this xxxx 

sending a big hug x

love Philippa 

Member

Re: Post treatment

Hi Ladies, I hope you don't  mind me joining in but just wanted to say I feel exactly the same as you all. Not a day goes by when it's not on my mind. It's  ruling my life.

I did go to a taster mindfulness session today and I have a taster Counselling session in September.  I've has both before but hoping this time it will work for me. 

Like Lucy51 said I'm  so glad I'm  not on my own feeling like this.

Take Care All.

Xx

Member

Re: Post treatment

Hi Philippa, 

i can relate to being awake at odd times, I usually struggle to get to sleep in the first place. 

I don’t mean it negatively but it’s reassuring that I’m not the only one that still gets upset a lot and having everything on my mind all the time. There has been times that I’ve thought I was going mad, that I was the only one that can’t stop thinking about it. The last few days I’ve cried no end and today feel brighter, I think this is just how things will be for now. 

Ive said on numerous occasions to my husband I wish I could just have a day off from this as, like you, I have some discomfort which is worse by the end of the day. That was what set me off last night as I can’t lie in bed comfortably sometimes and I just wish I could. 

Theres definitely a gap in the after care as not enough counselling available. Fortunately I had a call from the cancer centre near me to say they have a space starting next week, I really hope it helps. 60 miles is a long round trip if there is anything nearer but I understand what you mean about getting back to normal. 

My work have been pretty unsupportive although patient about me being off. Purely by chance I discovered there’s an employee help line I knew nothing about that offer 24 hour support so I’m waiting on a call from them to discuss leaving work. I’m really angry my boss didn’t give me that information tho, I could’ve done with that in March. 

Thank you for replying to me, I find it really helpful. I hope you’re not too tired today and look forward to talking again soon KJ xx

Member

Re: Post treatment

Hi KJ,

sorry for late reply ! It's 4.30 in the morning and for some reason have woken up thinking about everything!!! Had a couple of really good days too so not sure why this is happening !! 

The cancer charity Force phoned yesterday when I was out but sounds like I may not get counselling until October unless I can do the 60 mile round trip to Exeter each week ! Think I may have to as want to get back to normal ! I hope it helps ! I am not crying constantly but have it on my mind the majority of the time ! Think it's because my boob that has been reconstructed is a constant reminder as still swelling ! I am sure I will get there !

Please don't feel embarrassed , your feelings are very normal , you have been through a lot !

Everyones treatment is different but still equally tough !

I feel I am making lots of new friends on here x Its a shame that I will probably not ever meet any of you but at least this is here for chatting and advice x

chat again soon 

love Philippa x

 

Member

Re: Post treatment

Hi Treeze

youre right after treatment, they only concentrate on the medical side, I think they just assume you’re ok and off you go. I’ve found that information isn’t very forthcoming either, it’s been talking to other people that has been most helpful. The other thing I did was the Hope course with Macmillan but I know they don’t run very many of them. If you’re still finding things hard try your GP, it’s worth asking. The other thing is the breast Cancer Care someone like me service. I’ve found talking to people in the same situation just as helpful.  I really hope you find some help and that you’re ok xx 

Member

Re: Post treatment

Hi and thanks for your reply.No, no Maggie's centre round here..no one.mentioned counselling but I got through my treatment still smiling and everyone thought..and was amazed actually..that I coped well.Have found it much harder post treatment with rebuilding my life with anastrozole aches and pains and working again.Managed to find a job and start 2 months after finishing radiotherapy.Just do 23 hours a week but it's all physical stuff as I'm a cleaner and also do special needs. Luckily my outgoings are small as I live in a small flat and dont own a car so can get awsy with not working full time.P ost treatment I find oncs are only asking about whether you're managing to take your meds, no questions then about how you feel. Understandable I guess.Thanks for taking the time to post.x

 

Member

Re: Post treatment

Hi Treeze 

The CBT counselling I had through my husband’s health insurance and while it’s been helpful with some things I haven’t talked about what has happened. 

My BCN referred me for counselling through the hospital and was told it would be 8-12 weeks. I was offered group therapy which wasn’t very well planned. It got the appointment the day before, it was 10 weeks.  I was doing the moving forward course for 4 weeks of it which I explained, I was going on holiday at the end of it so would’ve only actually had 3 weeks. Also having attended other group things I found it difficult to talk about how I was feeling as I felt embarrassed by it. Finally we have the Helen Rollason cancer centre near by and they offer counselling so I’m on the waiting list. Do you have a Maggies centre near you? I’ve heard they do something similar. Alternatively speak to your GP, they have talking therapies so could try that. 

Gosh you really went through a lot, I hope you find some help xx

Member

Re: Post treatment

Hi Lucy. Was wondering how you went about getting counselling? I was never offered any..I remember having to tick boxes on a form very early on after diagnosis about how I was feeling 1-10 but I was reeling with all the info and had my daughter with me so I would have played down how I was feeling anyway. Couldn't go to moving on course as by then I was working again.Being single I had to as soon as I could. Diagnosed 3 years ago with breast cancer 6 weeks later diagnosed with kidney cancer too. Chemo lumpectomy node removal kidney removal and 5 weeks radiotherapy followed by anastrozole. Very painful joints etc now.

Member

Re: Post treatment

Hi Philippa thank you for your reply, 

i can relate to the comments on how well you look and being told I'm cancer free now, as if to say why are you still so down??  I spoke to a friend I spoke to a couple of days ago told me to just focus on that and I'll feel better, she was meaning to upset me, I don't suppose she knew what else to say. 

 

I really don't understand why I feel like I do because they're right and I knew I would be ok from the beginning. I got away very lightly as I had a mastectomy in April  (unfortunately the reconstruction failed so I have the diet tummy tuck and reduction on my good boob). I didn't need to have chemo or radio and am now taking a anastrazole which is causing some mild problems. 

 

I held so much in before my surgery and as soon as I had the op the tears started.  The longer it's gone on the harder it has been as really I should be past this now. I feel embarrassed that I haven't coped considering what I've actually had done when others have had to go through so much. 

 

I have been off work since march and have a certificate to the end of August. I don't really want to go back, been there 30 years but am disillusioned with the job and am discussing with my husband  the possibility of leaving which I'd love to do. I think I've made the decision and then think I just need to pull myself together and get back to work. 

Ive had some CBT counselling which has been helpful but you don't discuss what's happened only moving forward. I'm waiting on some counselling with a local cancer charity but will be a bit of a wait. I did the moving forward course which I found really helpful but after it ended I was back to square one and no one kept in touch. 

I hope you are recovering well and things start to improve for you especially when the counselling starts. Id love to know how you get on 

KJ. xx 

 

Member

Re: Post treatment

Hi Lucy,

i finished radiotherapy on 23rd July , was diagnosed in January and am finding it really hard now that treatment is ended ! I am still recovering from the last operation three months ago ( mastectomy with reconstruction) and get very tearful still ! I have been told by the breast care nurses it's very normal to be feeling like this ! I have been offered counselling which is being arranged and am going to attend a moving on course in January ! I have good days and bad days and frequently come to the forum to talk to others via these messages ! It's a big help.

hardest thing is people saying how well I look and I should be happy that the surgeons have managed to get the cancer ! There is always the 'what if ' though ! 

We are all in this together and I am glad this forum is here !

good luck with everything and big hugs 

love Philippa xx

Member

Re: Post treatment

Hi Lucy

Thanks for your kind wishes and reply. I hope chatting helps you, I know it helps me to know I'm not alone with the "fear goblins" (a phrase pinched from another chat that sums it up perfectly). 

Hugs, Evie xx

Member

Re: Post treatment

Hi Evie, 

thank you for you’re really helpful and supportive reply. It’s so nice to know other people understand especially when I’ve struggled to myself! 

I hope you’re well and it’s lovely to chat xx

Member

Re: Post treatment

Hi Lucy

Yes, it's a shock isn't it that you don't just go back to normal again after diagnosis and treatment - it takes time to come to terms with it, the "why me" and "will it come back" questions too. Unless friends have been through the experience themselves I think they find it hard to know what to say or how to handle it. I found some wanted to know every detail, and every time I met them asked me about it (obviously in a very caring way), then there were others who thought I was "mended" and should move on. I actually don't like it when people raise the subject with me, I prefer it if I can talk about it as and when I want to and I have explained that to close friends and family so that they now know best how to help me. Otherwise I would find myself out socially and someone would spoil the happy moment by raising diagnosis or treatment. So perhaps gently explain to friends how best they can help support you? You may want to talk to them, it's a very personal thing. But you will definitely get there, take one day at a time and be gentle on yourself (I'm sure your counsellor has also told you that).

I'm also very happy to continue chatting on here or on private message if you prefer. You really are not alone, this forum is a wonderful source of support.

Hugs, Evie xx

Member

Re: Post treatment

Hi Evie, 

thank you for taking the time to reply and yes it has been really helpful. The last few months have been really difficult, I really thought I would have my op and if nothing else needed I would be back to normal. I didn't realise the impact a cancer diagnosis has on you. 

I did the moving forward course which I found very helpful. Meeting other ladies who have been through the same as me was reassuring but since that has finished I feel as though I'm back on my own. I'm still struggling with anxiety and as I said I'm thinking about it a lot and still find some of it upsetting. 

i don't know how you found other people after treatment finished, but I have 3 very close supportive friends and apart from them I feel people don't understand why I'm still struggling with things. I'll get there in the end I'm sure and thank you once again Evie xx 

 

Member

Re: Post treatment

Hi Lucy

I think everyone is different and so there is no real answer to your question. I really doubt that everyone else has moved on though, so don't be hard on yourself that you haven't "got back to normal" or your pre-diagnosis state. If you search on this forum you will see plenty of threads with people talking about how they struggle mentally after treatment.

 

I was warned that the time immediately after treatment could be hard as you no longer have the medical team supporting you as regularly - and I found that was very true. I am now about 2 years post treatment (I had the lot!) and I have ups and downs. Sometimes people will bring up the subject when I don't want to talk about it and that can bring memories flooding back. It is a cliche to say that you need to give yourself time, but it is true. It's great that you are seeing a counsellor - I did too and I found that very helpful. It really does take time to process what you have gone through, but you have already noticed that you are improving so that's a really good sign. 

 

Talking can really help, especially on here when everyone understands, so if you feel that would help do chat away on here. I don't know if any of that is any help, but I wanted to reassure you that what you are feeling is very very normal.

Sending you hugs and best wishes for your continued recovery

Evie xx

Member

Post treatment

Hi

i just wanted to ask after treatment how long it was before you started to feel you were getting back to normal? I’m 3 months post op, didn’t need chemo or radiotherapy and have just started Anastrozole. 

I can see that I’m improving but still think about the cancer/treatment a lot and still get upset about things. I am seeing a counsellor and have attended the moving forward course which have helped. 

I understand that post treatment can be a very emotional time and you need to give yourself time to come to terms with everything. I just wondered how long that might take. Everyone else has moved on and I’m finding it hard to do the same just yet xx