Breast cancer

Oh Sarah, you are doing way better in the energy stakes than I was.

However there is no way you should feel guilty about resting or sleeping anytime you can. The kids need to realise that the chemo destroys many cells and your body needs the rest to restore and recover.

I was 'lucky' in that my daughtwer took over my job (teacher -Yr 1) for 6 months as I had lots of sick leave stored away. I also realise now that I wouldn't have been able to manage working so i am extra grateful.

My family also just looked after their own food etc as I couldn't eat much for a while and they got to enjoy helping each other cook etc. You do have a full household but hopefully you can let them know that you need help and love -lots of it -so you can look after yourself on this journey.

I am over all my treatment now but look back on the past year -occasionally thinking "was I really that lazy??" (still am!) but if I say that to my kids they 'tick' me off "You've been through a hugely rough time -survival is more important than keeping up with the house etc" -lovely souls!

I hope your family will continue to give you all the support you need! xx Sue

Oh Sarah, you are doing way better in the energy stakes than I was.

However there is no way you should feel guilty about resting or sleeping anytime you can. The kids need to realise that the chemo destroys many cells and your body needs the rest to restore and recover.

I was 'lucky' in that my daughtwer took over my job (teacher -Yr 1) for 6 months as I had lots of sick leave stored away. I also realise now that I wouldn't have been able to manage working so i am extra grateful.

My family also just looked after their own food etc as I couldn't eat much for a while and they got to enjoy helping each other cook etc. You do have a full household but hopefully you can let them know that you need help and love -lots of it -so you can look after yourself on this journey.

I am over all my treatment now but look back on the past year -occasionally thinking "was I really that lazy??" (still am!) but if I say that to my kids they 'tick' me off "You've been through a hugely rough time -survival is more important than keeping up with the house etc" -lovely souls!

I hope your family will continue to give you all the support you need! xx Sue

The whinge

Ate a tiny amount of soup and collapsed with absolutely aching joints, throbbing tumor and pulsating plated arm. I felt dreadful. Maybe I had done too much. Dozed on and off went to bed and slept little. Mouth in a dreadful way, big time D (diarroah) and I am just completely over this and why on earth don't they just sedate us for 10 days!!!!!!!!!!!!!!!!!!!!!!!!!!!! on a saline drip.

Another day to fill. The plan is to get my sewing maching out, bet I sew I couple of fingers together? Hope your day is better than mine. Oh my hair resembles the scrawcrow out of "The wizaerd of OZ" nails and toes peeling.

Kind Regards Sarah

Hi, I am out of Perth, an hour's drive up into the hills, but come in to the Mount Hospital in Perth for my treatment my treatment in Perth on Friday, then Thursday next time, and at various other times. I have had trouble with fluid retention (advised to eat watermelon and it works!) insomnia (took  1/8 restavit for 4 nights in a row, but mind you I don't have a broken arm!), constipation (took Movicol for a gentle effective solution) heartburn was the worst(on Somac now), badmouth taste (gargling with strong saline every hour or so and cleaning my teeth with an ultrasoft Braun Oral b electric brush every few hours, andchewing extra minty sugarfree gum and telling myself I like saline taste better than the alternative) I really miss enjoying a cup of tea: it all  always tastes like I have been swigging iodine.

The other thing that gets me down on and off is the emotional vulnerability, and reactivity. Which I know is totally normal in the face of this physical/mental/emotional crisis called breast cancer and Chemotherapy. But I don't approve of me being like this. This morning I sent off a rather harsh email to my horrible sister (who has been being a cow as usual, ) telling her she is a hard, unkind woman. Normally I would be a lot more sensible and effective in my handling of her, and I know it will not change anything, but every so often I get childish and hysterical and deeply hurt in ways I don't usually. A woman at my Oncologists said: this is the new normal. Go with it, let reality be reality. .

Do you think it would help to tell your kids about Chemofog and Chemobrain, and put it to them that they have to be understanding of the temporary toxic effects this process has on the brain. And that you need both their sympathy and their assistance to remember things etc. (Stress does this to everyone's mind too).

Today is day 10 and I think I have got through the Valley of Death to a not bad place. Hope you emerge into this better space soon.

Hello Jessica

Royal Perth Mondays.........next one round 2 March 17th. I am doing TCH but round 2 I start on the Herceptin as well. I am also recovering from a broken humerus done Oct25 so my sleep went out the window then and it's been a long haul. Yesterday I was so miserable that I said to my self I am not doing round 2 but I guess I will and even say 'thank-you" that's life! I know I have had very mild effects which worries the hell out of me as I know next round is going to be far worse and I have only just coped. I just feel YUK, depressed and not my self. The lack of sleep is the worst, lack of taste and your throat and mouth feeling like the bottom of a parrots cage that needs cleaning. No energy although that has not been too bad and I still do many hours of cooking and ironing general housework and the jobs nobody else see's. I have a full house at the moment with 3 adult children and one grandchild 3yrs. It's hectic and I find it very irratating with all the noise and moverment. I sound ungrateful and I probably am but I hate feeling like this infront of my children. I feel paranoid as well that they are all talking about me, I cannot string good sentences together and hopeless at number sequence so my passwords are all up the creek. Please let me know your symptons and how you are copying. I am hopeful you are in Perth too as it would be great to be friends as we are so close in treatment. Have a good weekend

Sarah

Hi Sarah, you are 3 days behind me in your Chemo. WHere are you having your treatments, and what sort of Chemo are you on? I had some days of being a ball of misery with heartburn, then got onto OTC Somac with my oncologist's approval and finally can eat and sleep again without nearly so much distress. I could not even drink weak tea without distress. It is now such a relief to have the main culprit gone it is like stopping banging my head against the wall. I start to wonder if this is a big part of the Chemo experience: you suffer your own side effects, your task is then to find ways to avoid these side effects or make them go away or at least bearable, and thus take control, get yourself through, and that gives you the courage or tenacity to return for the next lot. It is a sobering thought how much courage so many women including you and me are finding to face these debilitating and sometimes terrifying processes, and get through and on with our lives. i do wish you comfort and moments of  unexpected joy in your journey. I hope also that you can feel less alone knowing there are others of us walking beside you. Please share what is happening for you, good and bad, whatever you need to share

Thanks Sue.  I seem t be in a much better place now.  Still hate seeing my bald head in the mirror but am very grateful that I see to be doing a lot better following my second FEC round 10 days ago.  I think I have accepted that the first week will be crappy and  just go with it.  Second week I feel well enough to fuss about bringing my home back  the standard that I am comfortable with and taking the extra burden off my husband.  Third week I plan to get out and about and catch up with friends and extended family.  

I agree that it is better to let our feelings out and this is really the only place I feel I can.  Doing so with family only brings them down and makes them nervous and scared.  I don't want them to be scared and they don't want me to be either.  I think I have pretty much mastered the "one day at a time" and feel quiet content with where I am at the moment.  

I don't feel like life is leaving me behind as I did before.  It is just slower and a little different for the time being.  This is a good time to reflect on how my life was before and decide what I want it to to be like following treatment.  

Thanks Sue for taking the time to encourage me.  I hope you are travelling well too.

Joy xx

Hi Joy,

One of the things I love about this site is that you can have a good 'whinge' and no one thinks you are a 'woos' (hey how do you spell that?) - I found that I wanted to tell all my woeful bits and pieces to someone and found that here you see so many people going through their journey in so many different ways and every one is very supportive and helpful.

So whinge away - it's good to get it out and we all send positives to you as you travel through this not so pleasant trip.

xxSue 

Hi Sarah, I live in WA too, up in Kalamunda, so not too far away from you. I am 61, and learnt I had invasive breast cancer on 7th Jan, had a left mastectomy on 16th Jan, got part of my pathology on 23rd Jan, and today got the final bit. My tumor is Grade 3 HER2+v, and I gather I will probably  be having chemo and herceptin treatment if my heart is up to it. I also got a massive seroma and an infection at the drain site, so they may delay starting my chemo and herceptin treatment. for several weeks till both are healed..

I am often up for an hour or so about 3 or 4am, and will check for you on the forum, and maybe we can connect there.

This cancer journey is a really scary process at times, And terror and sleep are not compatible.

For me the terror receded once I met my surgeon, and had surgery (a left mastectomy and SNB) Then I was fine for a little while till I got a bit but not all of my pathology. Now I am hanging out to 5th when I meet my oncologist and get my programme. .I am a person who is most comfortable when I know where I stand, and I am much more settled having at least some rough answers. I would rather have bad news than not know where I stand Other people don't feel setttled till they actually get started on the chemo, We are all different, but we are all a thousand times more than the statistics, and odds are there to be beaten.

You mention having terrible dreams. I am a psychotherapist, training in Jungian Analysis, and dreams fascinate me. Dreams come from the individual's unconscious mind and are part of your own unique personal process of making meanings, and are about what they mean to you not what anyone else may read into them. Even dreams that seem horrible are often really helpful messages from your unconscious that validate you and guide you to get what you need, and if you  ever think it might be helpful to talk about them with me by phone or by email, I'd love to. Sometime I would love to do a study of cancer dreams, and pre-diagnosis dreams, chemo dreams etc, and see if I can maybe write a book or offer a service to help people with these dreams. My mentor had a group in the US that offered free dream guidance after September 11 twin towers.

I am so glad that you have found this group so that you now have friends who are with you even in the wee small hours. I look forward to meeting you if you join Perth Women group, or want to talk dreams etc

best wishes

Jessica