Thanks for all the advice for the oncology appointment. I walked into the hospital Friday to the extra large door with 'Cancer Care Unit' in large writing - thinking what the hell am I doing here? Can't believe this is my life now. After waiting an hour to see the Dr, he sat me down and went through the pros and cons of having chemo. Well in his opinion, the pros, due to my having triple negative breast cancer. He was blunt - it's my choice if I have chemo or not, but with triple negative there's chemo and radiotherapy, no other options.
A computer printout confirms that my prognosis for recurrence and mortality is reduced if I have chemo. At 39, who thought I'd be considering my 10 year mortality rate. Now I have one, on paper, for breast cancer.
The side effects can be significant - it doesn't really make sense to me. So I'm to put poisin in my body when I'm essentially cancer free. This poison can cause more cancer (low percentage change) and heart problems - WTF? I feel great now why make myself sick for the next 5 months? And there's only one answer I have for that - and that is for my children.
Poisoning myself with chemicals goes against everything I believe in but I've decided to go ahead with it. The chance of the cancer coming back and spreading is too terrifying and at least this way I know I've done all I can. 2012 is a wipeout.
I start next week - who knows maybe I'll be one of those lucky people that don't have many side effects. I've already chopped my hair off - short brown pixie cut (no point bothering with hair dye) and gone wig and scarf shopping in preparation.
I'll be on six cycles. I will have chemo on a given day (FEC type) and then 3 weeks later have it again. The doc thought I may be unwell for 2/3 weeks. I plan to not be that unwell LOL. This will go for 3 cycles (9 weeks) and then I'll have a different chemo drug (Taxotere) for the next three cycles - so 18 weeks in all. Then radiotherapy....but that's another story down the track.
So once again I'm about to walk into unknown territory - I feel quite ill about it all. I just have to keep thinking it's for a short time in the whole scheme of things. I'm off for a lovely short break before it all starts so shall enjoy being fit and healthy and well while I can :)
Comments
Hi Tammy
I was also not given too many choices regarding putting poisons in my body. They were unable to get clear margins around my tumour and I had active lymph nodes. I had two surgeries, one 22/12/11 lumpectomy and sentinel node biopsy and one 19/1/12 which was the total axillary clearance.
I have had two cycles of FEC so far and due for my third this Wednesday. I have them every 21 days. I have found that day 3 and 4 after chemo I am a wipeout literally so if you have a family it is a good idea to have meals organised etc. for those days and things organised for your care over those days. I find I tend to sleep the whole time, drink if someone gives me a drink, eat little, feel like crap but sleeping makes it easier. The rest of the time I do have some side effects but nothing major. I did have an injection for low white cell count the last time and that caused a lot of pain also for a couple of days. All the little side effects are frustrating but bareable and you do get through them. It is not fair that we have to go through this but as you say if you want to be there for your kids you have to do everything possible to see that you are.
I will be having 3 cycles of "T" as well after the FEC. I am hoping that it won't be any worse than the FEC. I am happy to become a contact if you wish so i can keep you informed on how I travel through the "T" regime.
I hope to have a little break to build myself up and then after that I will have to stay down in Perth as I will be having 7 weeks of radiotherapy.
I wish you strength and lots of love during your journey and I am here for you if you need me.
LOL Mich x
Hi Tammy
I hope all goes well with you. I am seeing my chemo specialist for the first time this Wednesday. I am quite anxious and nervous. Will find out about what cycle I will be on... and not looking forward to having side effects. Trying to have positive thoughts...
Thinking... what the hell... I shouldn't be sick.. I don't feel sick... why me?? , that also goes around in my head.
I am also about to have my hair cut real short, before the dreaded loss...too proud to have it fall out with the chemo.
and thanks to Mich post. that helps me as well, as soon enough this will be me.
Happy thoughts and hugs Julie XX
Hi Julie
I wishing you lots of luck with your journey. I am here if you need to ask any questions. You can make me a contact and then it is easier to contacty me if you have any specific things I can help you with.
We are all different and travel the journey differently. So far I have only had one outburst of why me and it isn't fair plus a few tears otherwise I have been fine. I have a long way to go yet and not sure if I will stay so strong. My attitude is if you need a good cry/scream/to vent then go for it. We need to get it out there.
i will suggest that when your scalp gets a bit sore/itchy get your head totally shaved clean as I found that the prickles made it hard to sleep on my pillow. Now all my hair is gone it is a lot easier.
If you keep your oncologist and chemo team informed of any side effects I have found they are very good at ensuring you the easiest road they can give you. I have found everyone so wonderful so far.
I am changing my chemo from Perth to Geraldton only because i am finding the travel and organisation too hard now. I will have to have radiotherapy in Perth as there is none in Gero. I have found the girls all wonderful in Gero as well so far, Wednesday will be the telling point.
I am hear for you if I can help in any small way.
Sending you all good vibes.
Mich x
Hi Tammy, Julie and Michelle
Hi all
Chemo.... The c word that has given me more sleepless nights than that other c word.
I too find it the most difficult thing to deal with... Having to be poisoned and made sick to be better.
I had multiple cancers in both breasts so chemo and radiation was a given. I had a bilateral masectomy and bilateral clearance with 6/22 and 2/21 involvement.
I started chemo on Friday 13th January. I had 4 three weekly cycles of AC. I won't lie... I found it very difficult with 3 hospital admissions including bilateral lung clots...
It was doable but quite challenging.
I have had 2/12 weekly taxols so far and found them so far to be much kinder to my body and mind. Days 3 and 4 I have had bone pain but I feel much clearer in the head on taxol. I am getting more out of breath after each cycle and feel constantly dehydrated on taxol but it is all doable.
I try and remember that 6 mOnths of feeling ordinary is a small period of my life and if it gives me the best chance of a positive outcome I have to do it.
I still find lots to smile and laugh about each day.
Listen to your body and mind... Rest when you need to, cry when you need to. It's the fear of the unknown and loosing that bit of control that scares me.
Take care
Mel xxxxxx
Hey melg
you sum it up so beautifully, thank you.
Your honesty surpasses me and i appreciate that more than anything. Good on you girl.
Stay strong and good luck on your journey.
Mich x
Hi Mel
Chemo, I think is the dreaded word, we all would like to forget Just like the other word.
Wow, reading your blog - not looking forward to it. I have read from other blogs that you can get lung clots, is that common?
Not looking forward to the bone aches. MAN, THIS ALL SUCKS!!!!!! Is life kind to us or not....
but hey, we all have to keep smiling and laugh when we can, as you said.
So, I am smiling now and giving you a big smile back. This ain't goin' to beat me......
Life is like "Snakes and Ladders" as I have been told. Keep looking out for the ladders to climb.
Take care to , Julie XXXX
Hi Tammy
I have had the same chemo that you are contemplating starting (3XFEC and 3XTaxotere.) I found I weathered the chemo very well, but I live alone and just had to do the normal household stuff even if I would rather have stayed in bed.
I made a decision early on that I would have the chemo as advised, but I would treat any side effects with as little medication as possible, and if I did have to take any, it would be for as short a time as possible. This allowed me to stay in control and certainly helped my emotional state. Heat packs instead of painkillers for the bone pain of Taxotere is an example. I accidentally pressed 30 minutes instead of 3 minutes to heat them in my ancient microwave and they exploded spectacularly!
I shaved my head the morning before I started chemo and had no problem with itchy scalp, another example of me being in control.
The most interesting side effect of FEC was that you wee red for a few days!
There will be days when you feel you can't get off the couch, go with the flow and listen to your body. Look after yourself during these days and watch all those DVD's that you can ask your friends to lend you.
I made a mistake by saying I was fine when my friends asked if they could help in any way, but I soon learned that by helping me they felt they were doing something worthwhile. Ask them to do a quick housekeeping task eg. bathroom basin or sweep the kitchen floor or take the dog for a walk etc.
As you say the first half of 2012 will be a wipeout, however once the last chemo session happens your body starts to recover quite quickly. Radiotherapy is a walk in the park compared to chemotherapy, even if you burn/peel this is very easily managed.
With love
Joy K
Hi joy
Hi joy
I too don't like to take anything for pain etc. i was amazed how quickly staff tried to feed me endone after my bilateral masectomy... You would think it was Lollies.. I did need it after my bilateral clearance though.
I told my oncologist yesterday about my bone pain on my first two taxols and she asked what I was taking. I sheepishly said nothing. She then explained she needed to know if my pain responded to at least panadol so she could adjust my taxol if necessary. I then discussed the impact on effectiveness if she reduced my dose. She said there is a large window for adjusting doses. I will see how bad the pain is next cycle. If it was only a few cycles I could tolerate it but I still have another 10 so may need to take panadol.
My oncologist gently reminded me that I need to listen to my body even if I become frustrated at not being able to do my normal things. I became quite seriously ill after my second chemo but told everyone I was fine. I took a bath to try and rid myself of back pain. When it was still severe the next morning I ignored it and only went to hospital when I had trouble breathing. I was diagnosed with bilateral clots on my lungs. My last scan showed they are still hanging around. My children are 22.19 and 16 and they all still live at home. They watch me very closely now. It is just the 4 of us and I promised them I will listen to my body and be sensible.
I am counting the days till 7th June when I will have the last of my 16 chemos. I will worry about radiation after chemo. I'm planning a nice weekend away with a friend in the blue mountains when chemo is finished.
Take care
Mel xxx
Thanks everyone for your comments - they are so comforting. Everyone on this site is so nice and we're all complete strangers - it's amazing.
I'm really interested in managing the side effects as naturally as possible. Whilst I'm realistic and know this may not always be possible, I'd love to hear the various natural ways you have managed side effects. I'm seeing a naturopath who specialises in cancer and so hopefully the million supplements I'm on will also assist.
Has anyone had massages after surgery and do you need to see a specialist oncology masseuse?
I'm also planning to work throughout - did you work and how did you find it?
Thanks again for sharing your experiences.
Tammy xxx
Hi Tammy
Some of the things I use.
Co Enzyme capsules for energy.
Solar Oil for cuticles/nails.
Urea cream for dry hands/feet and put socks and latex gloves with cotton ones over the top when my skin is peeling.
Bi carb Soda - 1 tspn in cup warm water for ulcerated mouth. Rinse regularly throughout the day. Soft toothbrush so don't damage gums. There is also Biotene products from pharmacy for dry mouth etc..
Aloe vera plant rubbed on rashes and itchies.
Bonjela for gums. I also put it on blister on lip (stung) but helped to clear it quickly.
No perfumes in soap, creams etc. Don't scrub your body or scalp. Pat yourself dry don't rub.
Gentle shampoo such as baby shampoo. (if you are lucky enough to still have hair :-)
I wear gloves on hands all the time when hands in water or gardening etc. I also have chooks so I wear a mask and gloves when cleaning out their house.
I have had to use Caneston for thrush unfortunately. Probiotics are meant to help with this, more of a prevention.
Bio Oil on my scars and on my scalp. I found moisturisers on my scalp caused zits at my age!!!!
Silica or Natures Own Hair, skin and nails.
I have a Cancer Council Day Wear Face Cream 30+ sunscreen with moisturise and a light tint. i bought it at IGA.
Eye drops for sore eyes.
I hope that helps, if I think of anything else I will let you know. They may not all be totally natural products but they are the best I could come up with.
Good luck, sending good vibes and best wishes
Mich xo
Hi Tammy
Edit my list of things I use. I was told my chemo nurse that 1/4 tspn bi carb and or salt is sufficient to rinse your mouth and do it regularly.
Thrush is Caneston for down below but she also mentioned Milstat/Nilstat for the mouth which they give to babies/children??
Mich x
Oncology massage therapists - BCNA's Local Services Directory
Hi Tammy,
You might find our Local Services Directory useful to find an oncology massage therapists in your area!
BCNA has recently connected with the Oncology Massage Training group and we have listed all their qualified oncology massage therapists in our Local Services Directory.
To find therapist near you simply visit the Directory and enter 'Oncology' into the keywords field and your postcode and radious and select 'Search'
The Directory is still new, so let us know what you think and if you would like to recommend a service simply complete the 'Suggest a service' form.
Feel free to contact me if you wish to discuss further, 1800 500 258.
Cheers, Daina
Great advice Mich.
We all want to minimize the toxins we put in our bodies.
Just remember to check with your oncologist before starting any new vitamins etc. I was taking a multivitamin designed for women to prepare my body for chemo. I mentioned it to my Oncologist who told me to stop taking it as it also had herbs in it( not sure which ones) and she said lots of herbs react with chemo drugs and can sometimes reduce effectiveness... If we have to have chemo we want it to work.
I was also drinking soy milk ( chocolate only lol) and not eating dairy or meat as I was following a diet recommended for people living with MS.
What I didn't know at the time was that my cancers were oestrogen positive so I was literally feeding them :( I was advised to avoid all soy products.
I now have minimal cows milk and have resumed eating small amounts of red meat. My MS won't kill me but my bc could of :(
Just remember to mention all of your natural products to your specialist.
I use pawpaw cream on my dry lips etc and have heard Moo Goo is a fantastic cream for radiation burns.
I wash myself with palmers cocoa butter, trying to get my skin ready for radiation. I have bio oil on my vanity but never seem to remember to use it on my many scars. They are part of me now and tell my story so not too worried.
Take care
Mel xxx
Thanks Mel I will mention to oncologist tomorrow about what I am taking to confirm it is all okay.
Thanks for the extra tips as well, one thing I haven't lost is my appetite so my body is getting heaps of nourishment :-)
Ta muchly
Mich x
Massage
Just be careful if you have a full node clearance on having a massage. I recently went to the Lympthodema clinic at my hospital and was advised no body massage unless by a trained Lymphodema nurse.
I had had a massage at a local physio who " specialized" in dealing with cancer patients. I asked my breast care nurse as it is so hard to get an spot at the clinic and she said no massage.
Just check... I have had all my nodes removed from both sides so am at high risk. A call to your breast care nurse will answer your question
Mel xxx
No more amazing massages in Thailand for me :(