anyone else felt at a loss between treatments?

hi again its fran hope you are feeling better it is a long haul and there are many lonely times and feeling lost times. i was recently told by my medical oc she didnt want to see me for 12 months i'm at the four yr mark i felt awful what now what if it returns how will i cope, i know it is a good sign that they don't want to see you so often but it is frigthening. keep in touch.

Thanks Susie,

I am doing o.k. As Leonie said people say your looking well. At the craft group I go to each week if someone says that, I usually come back looks can be deceiving. I'm glad I have that group to go to, even though they don't really understand what I've been through totally. I enjoyed the bus that picked us up for treatment in the end, as the bus drivers, well most of them were really great, and the people I met. At least that took some hours out of the day. I was able to fly home for my daughter's 21st, and came home another couple of weekends to gracemere, where we were renovating a house.My husband use to come down there each weekend to renovate it. Nothing like buying a house doing chemo and radiation and renting it out. Our son and daughter in law helped so that was great.  I haven't been motivated to do much, at craft, but just bought some material to make a quilt like the cancer council in here gave me. It was donated by another craft group for us ladies, so that was very nice.

Hope you are doing well now, and just taking each day as it comes. I live on a property, so only get into the little mining town near us once a week. I was able to drive about 2 and a half hours to Rockhampton last week and spent a a few days shopping and going to markets and catching up with  friends. I haven't been able to do that for a couple of years, so was excited about that.

Kay

Dear Heather

Was a wise woman you are.  I too love my library - I am unable to read at the moment because my chemo affected my eyesight which I have been told is temporary so am getting into audio books.  I was so relieved when my chemo was over (I still can't believe it's in the past tense!) and I know you will be too.  I think I might have put my head in the sand a wee bit, however, am feeling somewhat better now.  You are absolutely correct about feeling vunerable - that's a word I was struggling to think of and now I recognise it I can deal with it - thank you! My sister-in-law has been through my whole journey with me and she is an outstanding woman - I am so blessed to have her but she has a family and a demanding life and I want to give her space too.  I wasn't ready for the network before, however, am truly grateful to you and all for taking the time to write and to give me your support.  I'm smiling now and would love to stay in touch. You are going to be okay through this and so am I.

xx

I am a bit blown away that you are already thinking about radio and you haven't finished chemo yet!  I wonder if not thinking about it has contributed a bit to my feelings?  I was not prepared for the differences in treatments but you sound like you might be better organised.  I thank you sincerely for your encouraging words.

:)

Hi Susie,

I think a lot of us feel the same way you do. I haven't finished my chemo yet but am experiencing lots of similar feelings. I'll be working part-time for the next 6 months while I finish chemo and start radiotherapy, and I'm a bit worried about the financial side of things. I do have a partner but his work is totally casual and weather-dependent. It's my earnings that pay the mortgage & bills. I don't know if there is one near you, but to save $ on 'extras' I'm using my local library a lot -- especially for magazines, cds and dvds (all free).

And yeah, everyone says I look terrific (not sure what they are expecting, personally I think the bald head, weepy eyes and awol eyebrows don't exactly reflect a picture of health!) and like you, everyone thinks that once the chemo is over, that's it, we're all better. I'm not sure how long the total effects of treatment last, but I'm guessing it's way past the 2 or 3 weeks between chemo treatments. And then there's the anxiety of waiting to see if the treatments have actually worked, as many of the women on this network know only too well.

I think I'm lucky in that my radio treatment is only a short walk away from my workplace, so I'm sort of used to being in the vicinity. But there's something about everyone knowing that you have cancer -- the visibility of it -- that makes us feel vulnerable.

I try to remind myself that I'm not the only one -- that the women on this network know what I'm talking about even if others don't. And be proud of who you are: you sound like a strong, thoughtful person. It's hard to ask friends/family for what you need. I can't think of it as asking for HELP because I don't feel helpless. I like it when ppl offer to do specific things (even if it's just coming over for a coffee) rather than leave it open "if there's anything I can do ...". Anyway if you have a good friend or fave relative, tell them how you're feeling and maybe set some regular thing up, even if it's just going for a walk once a fortnight. I think your family/friends would really want to be with you if they knew you needed a bit more from them. They might be thinking that you've had enough and want to be left alone...

Ok that's it from me! Be kind to yourself -- treat yourself as you would a great friend. And good luck with the radiation therapy.  Go well,

Heather

Hi Susie,

I still have two chemos to go and have already started thinking about radiation. I have run out of sick leave so any further days off I will not be paid for - it is really stressful and my husband keeps saying don't worry about it - go with the flow!! I am sure I am going to feel the same as you when I start radiation as everyone keeps saying what  breeze it is compared to chemo!! I am a teacher and I will have to travel 90 minutes to radiation every day after school. This has all been such a learning experience and I do believe we will be better people for it - but it is sooo hard at times!! So hang in there Susie and remember we are all here to help each other.

Mel

you put into words something I was feeling and couldn't express.  Travelling each day to and from radio is lonely and I  feel very "exposed", like my cancer is no longer private  I too am being told how well I look which sometimes makes it harder to admit how bad I might really be feeling.  AND, it seems to take me forever to get ready to go out!  Making a decision about what to wear is hopeless and putting on make up and a turban is HARD work!!! 

Thank you sincerely for your message - you and Kay are amazing women - having to travel for your treatment, being away from your homes - I can only imagine how hard that must have been.  I thank you for sharing your story - I need to stop spending so much time alone, I think. 

s :)

thank you for your kind words Kay. I am lucky because it's only an hour for me to get to radiation and I can come home afterwards.  I hope you are doing well now.

s

Hello Susie,  Yes I did feel very alone whilst undertaking radiation therapy.  As with Kay I had to leave home and be in Brisbane for my treatment which meant away from my main support, my husband.  Even though I stayed at my sister and brother in law's home, they both worked, I had my daughter and family close by.  Not the same as being at home though.  I drove myself in to treatment each day and felt so alone whilst doing this.  A lot of days I cried most of the way which was not a good thing to do in the traffic.  I returned home and had chemo which is now all finished.  Everywhere I go people tell me how well I look.  Yeh sure - I know my face is round and fat from the sterioids but underneath I am so tired..... Lucky people don't see me at home in my pj's most of the day with my beanie on.  It is quite difficult for me to go out and I have to really plan the trips.  (seems easy but it takes me so long to get ready)  Don't get me wrong I love getting out of the house but I am amazed at the effort it takes.  I get so frustrated at not having the energy I require to do what I want to do.  We all have to remind ourselves that what we are going through is a HUGE challenge and we must not be too hard on ourselves and we must not PUSH ourselves.  Easy isn't it - NOT.   But it really does take a long time to get back to "Normal".  Going through bc takes a lot of our confidence away as well so that needs to also be renewed.  My husband finds it difficult to understand why I want to be with other BC survivors for a lot of my socialising.  You know and I know why - they understand where we are at!!!!!!  Take care Susie you are completely NORMAL in this bc world.XLeonie

for letting me know about my not being the only one feeling like this.  I am relieved to know this is in the realm of normal.  I will get in touch with the Cancer Council on Monday.  I have accessed the 'Other Issues' section and read some of the stories there.  By the way, the quote from the other woman is exactly my experience.

My sincere thanks again

Susie