coping after treatment finished

Hi there, know how you feel. I m not good at these things either! Had mastectomy, axillary clearance May 2009 followed by chemo and radiotherapy. Finished my Herceptin May 2010. It was weird being finished and yes, it was often difficult to feel as upbeat as others that it was all over. It's a lot to go through. And it's a lot to deal with. I'm almost two years on from surgery and am currently considering reconstruction. I look and feel great, my hair is back. My arm still gets sore at times, but exercise helps. I did get a lot of nerve pain, and still get spasms, but they are definitely decreasing. My scar has healed really well too. Be nice to yourself. Talk to people, and I visited a support group for a while, but to be honest I'm a bit of a go it aloner! But still found the experience a real help. Nobody understands unless they have been through it or know someone who has. It's hard to stay positive all the time, but hang in there, you re doing great!

All the best,
Lucky star

Hi Lucky star, thanks for replying.It does help knowing others out there understand what you're talking about. I've found and joined a local support group, which I think will be good for me. Thanks for the encouragement.
Macci.

Its a tough road youve been down

I had my transplant nearly a year ago and I spent some nights in the hospital very upset.

I am sucha positive person. I see the bright side to everything and even if there isnt one i make one up.

but still I do get upset soetimes. I sometimes get flash backs and get very upset. I spent xmas in hospital and i thought id never pull myself up from this depression.

Now at the moment I have graft versus host disease which is basically a really bad rash, blotchy, itchy, embarrasing a bit but at the end of the day the thing that gets me through it is that I can deal with a rash and a bit of weight gain because I no longer have cancer and i spend every night in my own bed with my fiance instead of in a hospital bed.

Just find the positive in something

Good luck

Hi Macci,

Sorry you are finding end of treatment a tough time. It is very common to feel this way, many of us here are/were the same. You will find that many people act like you can just get straight back to 'normal' now that treatment has ended. But it will take time for both your emotional and physical scars to heal. I found talking to other patients, either in a support group or on the net was what helped me the most to get through this.

It sounds like your radiotheraphy gave your skin a hard time, have the doctors or nurses given you advice on how to treat it? Or said how long it may last? I tolerated the RT pretty well, thankfully, but my breast still looked like it had been sunburnt. It was very red, but not black. How much of the breast has turned black? Is your surgeon ok with this?

On the nerve pain and muscle stiffness, don't worry too much. You are just very recently finished treatment. Give yourself time to heal and then talk to your breast care nurse about when you can start doing little exercises to help the stiffness. You will become more active again over time. I think it takes a long time for sensation to come back to the breast after surgery, I was very numb for a long time after mine. Then I went through a phase of occasional little stinging pains or 'pings' that were uncomfortable but thankfully brief. They too, eased over time and eventually disappeared altogether.

Don't worry about not being positive all the time. I am usually a very optimistic and positive person but I found all the 'being positive' stuff absolutely exhausting! I often hit a slump, its just not possible to be positive ALL the time. Thats why so many people describe a cancer journey as a rollercoaster - its all full of ups and downs. But it does level out after a while.

Allow yourself some space just to BE and to HEAL (without all the cancer sh*# taking everything over all the time!). And I'm a big fan of giving yourself treats and spoiling yourself. Remember you have been through an awful lot, but its also a major achievement that you can be proud of.

Don't be shy, keep posting!
Hugs,

Flo.

Hi flo, it's really helpful to hear from others who have been down this road. I hope I can encourage others not to be too demanding of themselves. Definitely joining a support has been an enormous help. I don't feel so lonely. I am feeling a lot better now, my skin is healing well, and have been for physio. This is really helping tho have a long way to go yet.
I can look at myself in the mirror now without feeling so awful.
I sometimes feel it was easier when i had no hair and a headscarf on, as this lets everyone know you having cancer treatment. Now I have hair again it's harder for people to understand how your not back to normal -everyone keeps telling I look great! i should be glad about this, but it's a bit like the keeping positive thing, drives me mad sometimes.
The good weather was a real help in getting me out walking and feeling more energetic. Role on Summer!
Macci

hi ladies,

lucky star i had my mascetomy in may 09 too and finished avastin june 10 and am currently waiting on my reconstruction scheduled for feb/mar this year but no beds so fingers crossed some will free up soon.

Macci i think what you are feeling is normal and well done on getting active again, i put on weight while on treatment and trying to lose it now and not doing great. I am exercising but just need to stop eating so much. i still have nerve pain and stiffness but had a modified radical mascetomy but i would give yourself a year from treatment to get back to normalish. has your skin improved as that does not sound good, the black skin sound like cells dying so go back to your doctors or breast care nurses as you do not want infections to form or abcesses as they are so painful. a great help to scars is to massage the area with bio oil or some such thing, my surgeon said the only reason oil works better is that we are inclined to rub it in longer than cream and its the time spent massaging and not the product that is important. i had 7 weeks of rads and never had black skin, had purple/red badly burnt with blisters but used oceans of aquaceaus bp cream and they healed within a few weeks.

flo hope you are keeping well and sorry to hear about all the trouble you had with reconstruction.

transplant21 hope you are healthy and doing well now.

hi everybody, love reading all your posts, Just finished treatment a week now after a rollercoaster ride of total masectomy,aux clearance ,chemo and rad theraphy. If another person says you must be delighted to be back to normal I think I just might go mad.I know they mean well but I dont feel normal I just feel wrecked and terrified it will return. Real trouble sleeping with these hot flashes and nightmares Would welcome some advice Cuddles

hi everyone
Yes this is diff a huge roller coaster. At mid way pt of chemo it hit me with a bang that I was on the count down and that everything would be back to normal! What is normal? then my doc told me i would need to loss weight. I laughed at him but felt like telling him to walk in my shoes for a while We have all come out the other end ( I have riadio still to come ) and this forum is just brill to chat to others who understand
Cuddles I started taking pure evening primrose oil and it helped me, The nurse at chemo suggested it. It might help.
sunflower

Hi Macci,

No point in saying, "chin up", "aren't you great" and all the other things well wishers say - the haven't been there & they don't know!

As is the case with most BC warriors, the low period comes after reatment. We seem to have enough adrenaline to keep us going through relgular tests, appts & treatment but then when that 'support' system is gone we fall apart and what has happened to us seems to hit. That was my experience.
What helped me was going for some counselling session with an oncology psychiatrist.
There is no shame in asking for help - my 1st session, I cried the whole time.
Check with a local cancer center for counsellors.

Things that helped me were taking exercise, with the sunny days, try & get out for a 30 min walk (helps mood, energy levels & sleep). And I was advised to have some funny DVDs to watch and help me laugh.

Nearly 3 yrs later, I sill get the odd 'bad' day but it does get easier and the bad days are further apart. Time does heal and impatience is hard!!

take care
J