About to enter survivorship

youngdogmum
youngdogmum Member Posts: 250 ✭
edited September 2019 in Now what? The highs and lows of survivorship
Well peeps. In three days I will finish radiation and enter survivorship. 
The bold strong young lady you all met in February has changed significantly. Still strong but wow what a hard 6 months it's been.
Having hormone positive BC so young has challenged me physically and mentally more than I was ever prepared for, even being in the business. I will continue Zoladex and commence AI soon, so hoping I can tolerate it. Also considering starting Venalfaxine for the flushes, they're getting a bit too much now and don't seem to be going anywhere!

Any tips/past experiences on what you did after acute treatment ended are welcome :)
We have a trip to Bali in the works probably mid October, I'm so unsure when to return to work. Perhaps after that, other part of me thinks f*** it take the whole rest of the year off. 
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Comments

  • JulieVT11
    JulieVT11 Member Posts: 90 ✭
    @youngdogmum I think the strong young lady that joined this crappy club 7 months ago is now wearing a superwoman cape after what you have been through both mentally and physically.  You have remained so strong and supportive to so many others - you are very wise beyond your years.  I was fortunate to not have needed chemo or rads after my mastectomy just straight onto the hot flush bus with tamoxifen so have no advice for you on what to do after your treatment ends.  Maybe after your holiday returning to work may help you resume a normal life again - albeit a new normal, is part-time an option until the new year?  Good luck this week with your final rads treatments then it’s time for you to rest and recover xxxJulie
  • arpie
    arpie Member Posts: 8,198 ✭
    Well done, @youngdogmum - BIG pat on the head - tho be prepared for some 'emotion' on your final Rads Day - it caught me totally by surprise!  They had been a continuous part of my life for 4 weeks - and I blubbed big time on my final session!!  NOT a flattering look, I can assure you, as I was face down & couldn't move a muscle to wipe my dripping nose!!  LOL

    Yep - it is always a tough 6 months - a whirlwind  of emotions of diagnosis & what is happening, the procedures & outcomes - which comes from the overall experience of having BC.

    Just be aware that you will continue to 'cook' for some weeks after Rads has finished - so it is VERY important to keep all the lotions & potions up to the affected areas.  Slowly, they will become 'less warm'!  With Spring in the air - make sure you wear 'sun safe tops' - so that the Sun's rays can't burn the affected areas (which may also include your lower neck, depending on the angle of your treatment.)   

    You may experience tiredness/lethargy in the following weeks - I didn't - but many do.  Be kind to yourself - looking at taking an extended break after your active treatment ends, is a great idea, if you can.  I went on a nice holiday to Norfolk Island as my 'reward' for getting thru all the active treatment!!  Jump onto the Otis Website & see what 'holidays' may be available thru them over the next 4-6 months.  These are 'holiday homes' that people only use now & then during the year (usually holidays) and they generously make them available to BC survivors for a free 'break'! I had one in April, at Thredbo! It was terrific - and you can take family or friends with you as well!  So maybe look at late Nov/early Dec or even January/Feb - so you have another nice break to look forward to after your Bali Trip! (Make sure you cover up there!!)

    Keep yourself busy in doing things you love doing - it will take your mind off everything else!!!  All the best with your AI, which will probably start within the month ...... fingers crossed you don't get the side effects that some of us get - I am on my 3rd AI now ........ 

    Take care xxxx
  • primek
    primek Member Posts: 5,392 ✭
    Congratulations.
    I went back to work around 8 weeks after chemo. I waited until I felt ready and then I returned at half time and gradually increased over 6 months. I took a holiday about 8 months after treatment as I fekt ready to do thus. Just listen to yourself. I've never fully reclaimed my vitality and have stopped trying presently as it just exhausts me if I overdo it. 
  • Sister
    Sister Member Posts: 4,961 ✭
    @youngdogmum Wow! has it really been 6 months since we first met you?  You're still strong but maybe it's coming from a different angle now...  Some cry at their last appointment - I probably scared the treating team as I whooped with joy!  Make sure you keep moisturising and protect your skin.  I got myself a long sleeve rashie to protect against sensitivity from the rads and from sunburn to the whole arm (but I only wear it when it's really bad burn days or out in it for too long I have to admit). 

    As for work, if you can, give yourself a decent break after treatment. I really wanted to get back to work as soon as I could.  I wanted to go back to being "normal" and have something else to think about.  I also needed the money.  Besides which, I didn't consider that I was legitimately on sick leave anymore since treatment was done.  So I finished rads in September  and went back in October for Term 4.  I knew it would be hard but I wanted to be back in the thick of it.  In hindsight, that was a big mistake, although the money bit wasn't.  I should have waited for the new school year.  My memory was shot and I was absolutely exhausted.  All I did was struggle through each work day and had nothing left outside of work.  What I should have done was spent that time after treatment looking after me, regaining my strength and fitness, improving my mental state and resilience, and using any extra energy for my family.  Twelve months later, I'm still paying for that decision although it is getting a bit better.  So, be as kind to yourself as you can be.
  • Anne65
    Anne65 Member Posts: 428 ✭
    @youngdogmum Congrats to you! That is the milestone we all look for. You must be feeling all sorts of emotions.
    i cried on my last day of rad!!! The nurses said it was normal as i was now being left to my own devices & didnt have the daily care & support around me that the nurses gave me. i guess its like being let free but sometimes we are a bit scared as for the last umpteen months we have been surrounded my different medical staff to keep a constant check on us.
    keep the creams & lotions going for at least another 3 weeks as the rad peaks then. Also, keep covered in the sun for that period.
    As for pampering yourself, well, i did go out for a beautiful lunch with my family to celebrate on my last day of rad but then I went back to work the following day.........i always seem to put work first but it was good to get back in my normal routine & to forget about all that I had been through. I didnt have chemo & didnt end up having any medication so I was very lucky & didnt have the side effects that many have to endure.
    I am probably the exception so give yourself as much time as you need as we are all different. If your work is full on then a break might be just what you need but it sounds like Bali will be here before you know it so kick back & enjoy & few cocktails by the pool & RELAX. Get plenty of massages/facials/pampering & enjoy. Love & hugs xx
  • CRM
    CRM Member Posts: 93 ✭
    Congratulations @youngdogmum you have well and truly earned your holiday!
  • poodlejules
    poodlejules Member Posts: 393 ✭
    Yes congrats ! to you @youngdogmum ,enjoy your hoiday and if it works for you , take the rest of the year off and start afresh in 2020 . All the best x
  • kmakm
    kmakm Member Posts: 7,974 ✭
    Hi @youngdogmum. I am probably not the best person to ask. My experience of 'survivorship' has been pretty shit. I have copped a lot of AI side effects, am having a difficult menopause, and the depression that commenced during treatment has not lifted.

    So, with that in mind, my advice to you would be to take the rest of the year off and focus on rebuilding your strength and fitness, and take some time to gently heal your spirit. Be very kind to yourself. BC doesn't finished with your last treatment. Take a holiday, treat yourself, explore something new, reconnect with something old. 50% of people diagnosed with BC will develop depression and most of those will be diagnosed in two years after active treatment.

    Time and self-care. K xox
  • Afraser
    Afraser Member Posts: 4,450 ✭
    Listen to your own instincts. If a small voice is telling you to take more time off, then it is worth listening to. My small voice said 'try and keep everything as normal as possible' - it was good advice for me and I was lucky enough to be able to follow it. A week off after surgery then back to work. Might have been awful advice for someone else. Holidays are a great time to think about longer term plans and possible changes - I made some of mine about 12 months after diagnosis and they were good moves. Cancer has really no redeeming virtues but going through treatment is a sharp reminder that what doesn't kill you makes you strong. You are still you, but tested,tempered and stronger. Best wishes.
  • Sirrah
    Sirrah Member Posts: 77 ✭
    Hi, welcome to the great times ahead! I hope you get your Bali holiday and when you go back to work you find it a welcome distraction from your previous treatments!  I hope that Letrozole is kind to you.  I have found that I have some sore joints in my little fingers which I have had on and off for a few years but if I bump joints especially in my hands and wrists I need to use osteogel on them and they take a few days to settle down. My GP said to use normal panadol/pain relief if I need it, not the slow release as that is more of a preventative, but as a nurse you would know that!  My friend changed her AI tablets 3 times so don't be afraid to ask your Dr about a change if needed.  I swear by my Venlafaxine.  It only took about 4 days for my menopausal symptoms to disappear when I first started on them. Yesterday after visiting my GP I decided not to take my daily 3.75mg tablet and I had night sweats all night!! I couldn't believe it would kick in so quickly!
    Needless to say I am back on them today, haha!  Good luck with it all xx
  • Karen_C
    Karen_C Member Posts: 93 ✭
    Hi Youngdogmum,
    Firstly I think if you can take a year off, do so.    I went back to work after chemo and took time off every afternoon to have radiotherapy.   Fine while I was having treatment but fatigue caught up with me.   I worked for 6 years with cancer and although hectic, I loved my job and those who didn't know were non the wiser.   My journey different to yours as I was 49 when diagnosed.   I had two teenage boys at the time.   A very demanding period financially and that in part, played a big role in my decision to stay at work.  Nonetheless at that time work did define me which I found difficult to get over once I was "relieved" from my duties.  However if I was able to take 1 year off, I would have to look after myself.
    So girl if you can do it, go for it.
    Karen C
  • jennyss
    jennyss Member Posts: 2,083 ✭

    best wishes from jennyss

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