Due to start chemo in one week
Hi All, I have only just joined BCNA yesterday and am overwhelmed by the support you all provide to each other. I have a great support network around me, but no-one really understands how I am feeling.
I am due to start chemo next week, and am really crapping myself. I have spent the past 2 days trying to decide is it really worth the risk of having chemo when it really does not guarantee that it wont come back.
I was diagnosed end of November 2013, I had surgery on 18 December 2013 where a 37mm lump was removed, my sentinal biopsy tested positive, therefore my surgeon removed 12 nodes. My results since my surgery were somewhat positive where my margins were clear and all other 12 nodes tested clear.
However because of the size of my lump and the fact that my sentinal node was positve my oncoclogist strongly reccomends i undergo 6 rounds of chemo, 6 weeks of radio, and then 10 years of hormone therapy.
I have a 6 year old and a 17 month old, and they are the only reason why I feel I need to undero chemo so I can be around for them, but what quality life will this be? There's a lot of tension in the house and i dont know if we can survive this battle.
Any suggestions/advise will be grateful...
Comments
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Hi LucVia,
I'm sorry you are going through this especially with such a young family. I worried about having chemo and if it was really worth it. I made the decision to go ahead because I didn't want to find out it had come back and regret I didn't do everything I could to rid myself of cancer the first time round. There is no guarantee it won't come back anyway, no matter what I do...but I'll have no regrets I didn't try.
I've had one dose of chemo and due for my second dose this Friday . I have to say I have only had one day I felt unwell. I haven't slept as well as I would like but that's about the worst of it for me.
I have tried to exercise everyday I can...usually a walk and sometimes a short run.
I was wary of all the negative stories about chemo but can't really complain about my experience . Perhaps you will cope with it too.
Take each day as it comes. My hair fell out and I shaved it completely ...to me it's only hair and will grow again.
I know I'm waffling a bit but the bottom line is I found chemo not too bad but you have to do what is right for you with all the information you need to get your answer. It is the fear of the unknown that causes the tension.
I'm sure there will be other ladies with far more wisdom than mine that will help you decide. Just be happy with your decision.
Sue0 -
Hi LucVia,
I'm sorry you are going through this especially with such a young family. I worried about having chemo and if it was really worth it. I made the decision to go ahead because I didn't want to find out it had come back and regret I didn't do everything I could to rid myself of cancer the first time round. There is no guarantee it won't come back anyway, no matter what I do...but I'll have no regrets I didn't try.
I've had one dose of chemo and due for my second dose this Friday . I have to say I have only had one day I felt unwell. I haven't slept as well as I would like but that's about the worst of it for me.
I have tried to exercise everyday I can...usually a walk and sometimes a short run.
I was wary of all the negative stories about chemo but can't really complain about my experience . Perhaps you will cope with it too.
Take each day as it comes. My hair fell out and I shaved it completely ...to me it's only hair and will grow again.
I know I'm waffling a bit but the bottom line is I found chemo not too bad but you have to do what is right for you with all the information you need to get your answer. It is the fear of the unknown that causes the tension.
I'm sure there will be other ladies with far more wisdom than mine that will help you decide. Just be happy with your decision.
Sue0 -
I am a lot older than you,but when I was diagnosed,I was absolutely scared witless also!!!I was diagnosed on sep.2nd last year.I finished my chemo 3weeks ago.I never questioned chemo,because I would hate to be saying,"if only I had ". This network will be your lifeline,and the ladies on here will help you get through this.Chemotherapy,these days,is a lot different than it was years ago.They have medications to help with side effects,and I think you will find it is not as you think.I hope that others will jump on here and reassure you also.I thought that having chemo meant you were pretty much useless for a few months;laying around and being sick every day.It is not like that!!!For me,I was tired from days 5 to 10 after each round,and the second week you have to stay away from crowded places like shopping centres,because of the risk of infection.But you don't feel too bad the second week.Then the third week,you pretty much feel normal.Try not to feel scared.You can survive this,and your quality of life will be fine:)If you have any questions at all,make sure you put them here,and plenty of people will help you.I used this network in the beginning when I was sure my life was coming to an end(
) and everything the ladies on here told me,was always right.Sending you a big hug. xoxoxRobyn. 0 -
Hi Lucia
I've got a very similar story to yours minus the children. Diagnosed late November, R) Mastectomy early December with one of 2 sentinel nodes having isolated Cancer cells. No cancer in any of the other nodes of the full axillary clearance.
I'm wondering on what basis you think the chemo can't guarantee the cancer won't come back? Did one of your doctor's say this. I'm a Speech Pathologist and I have too wondered how necessary the chemotherapy is and if I could just skip it. I guess I really trust my surgeon and my oncologist who both specialise in breast cancer and I haven't gone searching for information about the necessity/effectiveness of chemotherapy.
I guess I've also been fortunate to speak to women who managed their chemotherapy very well.
One turned out to be the admin officer of our department. she has just passed her five year mark. She worked full time through chemo and radiotherapy, having it on her rostered days off. She did work at the hospital where her radiotherapy was. I know she had only recently separated from her husband and I suspect she was living alone.
The other had very hardcore treatment for ovarian cancer and had a much rougher time and was only able to work 2 -4 hours on her good days, but her cancer was very very advanced so I suspect it was much harsher chemo than ours will be. She has just started back at work now and gave me a treasury of dealing with the side effects.
I've been told I won't be able to work full time, but I'll be able to work part-time. I'm fortunate that work is a five minute drive and they are very flexible in terms of switching me to office work when I'm unable to see patients.
It is gonna suck, I have no doubt at all. But I'm prepping myself to deal with all the side effects.
I've had heavy (3 months in bed) depression and anxiety in the past. That's given me the opportunity to learn to use mindfullness to cope with anxiety/uncertainty. But throughout this journey, I have been grateful that I don't have any children to look after. And I suspect my mindfullness skills would be well stretched if I did.
Were you working at all prior to diagnosis? Are you financially stable? Do you have childcare available, either formal or through friends and family? Are you having public/private treatment? Do you have access to a social worker?
I start chemo tomorrow at 12:30, but very happy to continue to chat this afternoon and tomorrow morning.
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Hi Sue, Thank you for sharing your experience, It helps to hear from someone going through it the same time I am. I feel a little better knowing that your experience has not been as bad as the other stories I have heard and reade. Thank you so much for your support and caring words.
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Hi Robyn, Im glad you know how i feel, it is really hard to explain my feelings to people whi just do not get it and dont understand why I would have second thoughts. I now wish I had joined this forum when I was first diagnosed. I also though chemo meant I will be uselss as that is what I have been told, however your positive experience is making me feel that maybe it wont be too bad!! Infections is also a major concern for me as my doctor told me I could be at risk as i am susceptible to tonislities. But I suppose I can deal with that when the time comes. Thank you kindly for your suppoty. Judy
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I meant to say, you are amazing for having come through the surgery with your two kids. What I have heard is in keeping with Robyn and Sue, the side effects of chemo are so better managed now and there's much less time spent being less active in general.
You said there was conflict in your household? Who is pro chemo and who is anti-chemo?
Just to be clear I'm mostly pro-chemo but can understand why anyone would think it might not be worth it.
I also understand about household conflict. My partner and I had only moved in 5 days before diagnosis. Then poor Josh, who's a single child, got swamped with my five siblings and mother. I've spent a lot of energy on trying to keep everyone happy. There's been no open fights, but a lot of behind the scenes tension.0 -
Hi Elizabeth, I was told by all docs that there is no guarentee that the cancer wont return in another area, even if i remove both breasts and ovaries. Chemo will only try to kill off any cells that may have escaped from my lump.
I work from home, and yes we are financially stable as my husband is the main income earner, so work is not a problem if I am unable to proceed. Childcare is my concern, I have a fantastic support group in family and friends however prior to my diagnosis I have never left my 1 year old with anyone and she does not adpat to well to others looking after her so this is the main resaon I am concerned about proceeding.
I am very keen to hear how you have been prepping yourself for this and how your experience tomorrow goes, I am assuming this is your first round.
Thank you for your support, I look forward to hearing back from you on your experience tomorrow.
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I also wanted to mention,that right throughout chemo,we put hand sanitiser at our front door,and ANYONE that came to the house,had to sanitise their hands before they came in.We had 5 foster children at the beginning,so if anyone needed to blow their nose,they had to go to the bathroom.We were really big on cleanliness.I had my own cup plate and eating utensils.I know others who have done this too.It doesn't hurt to be careful.During week 2, I used throw away plastic gloves in the kitchen.Anything to lessen the chance of infection.Two of our boys, and our daughter,both got sick during my chemo,but I was fine! Cheers.xoxoRobyn0
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Thank you, it was hard but I had a lot of people help look after my kids, and my husband is very good with the kids also. My syrgery was only 3 weeks ago, and we have managed well.
There is no conflict in the house regarding the chemo, only tension, as you know, this is a very stressful time and both my husband and I are very tense. I have a big family also so I know what you mean, can be very overwhelming for my husband.
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Great tips, Thank you I will definately follow your lead and follow your suggestions
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I've found the Mayo Breast Cancer book (bought it on Amazon) fairly helpful. I can understand being worried about your 1 year old.
Being a Speechie, I'm slightly fixated on the mucositis which can happen(sore mouth/mouth ulcers). The advice I've been given is:
Oncologist & Breast Care Nurse: use sodium bicarbonate and salt mouthwashes
My AO said she lived on Slushies and cold drinks
The other friend said straws were very very helpful.
So I went on a hunt for insulated drink containers with straws. About a week ago I found Woolworths were sticking 5 dollar insulated cups with straws. They'll be great for home. On an Eco shop site I found some thermos drink containers with straws as well as some silicon straws. They arrived today. I plan to write a proper review comparing each for how they go practically.
Another friend said Slippery elm is a life saver, possibly more for the oesophagus.
I'm feeling confident regular exercise can improve the whole experience (again this is the advice from others who have been through as well as being well supported by research). Because I had been travelling a lot for work prior to diagnosis I'd been doing no regular exercise, so this is going to force me into it. I had a goal of becoming a tai chi instructor in the next year. In some ways this whole experience might make it more likely, even if it delayed by 6 months -year.
Re Nausea: apparently the meds are pretty good at keeping this at bay.
My oncologist is very keen on magnesium and zinc apparently.
Re Hair Loss: I had fun on ebay buying cheap colourful wigs ($4 each). I've ordered my 'normal' wig after trying several at a specialty wig shop. I've also been on Ebay for pretty head wraps. Just also discovered some bamboo night caps from a specialty shop in Adelaide and have crocheted myself a funky little newsboy cap.
My friend and I found a wig of just a fringe with sides that we plan to attach to a hat, plus some long hair extensions we'll plait and attach to a different hat.
My oncologist couldn't predict how the chemo will hit me, I do have to wait to have it. I would like to get to a naturopath who's had a lot of experience working with the chemotherapy. I did find an excellent US university site which summarised all the current evidence and precautions for various herbs including the effects on oestrogen. My Ca is oestrogen and progesterone positive, so need to be cautious with any herbs that might impact on hormones.
The other advice I've been given is prioritise whatever is most important and shed whatever I can for the next six months. I had just started a small business, but that's mostly going to go on the backburner
Oh, and last little story. My cousin, who is an emergency nurse recently met a lady in her 80s who is forty years post her initial breast cancer. This lady is convinced it was learning the ukelele which has managed her lymphedema. She also decided she would learn a new language each time she had to have chemo for a recurrence or new cancer and she is up to her 7th language! She has spent her time in between doing aid work in developing countries. What a legend. I play guitar, but my uncle, who recently took up instrument making as a hobby has started making a ukelele for me. I'm really looking forward to it!
Have you got a good physio? How is your arm movement?
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I've found the Mayo Breast Cancer book (bought it on Amazon) fairly helpful. I can understand being worried about your 1 year old.
Being a Speechie, I'm slightly fixated on the mucositis which can happen(sore mouth/mouth ulcers). The advice I've been given is:
Oncologist & Breast Care Nurse: use sodium bicarbonate and salt mouthwashes
My AO said she lived on Slushies and cold drinks
The other friend said straws were very very helpful.
So I went on a hunt for insulated drink containers with straws. About a week ago I found Woolworths were sticking 5 dollar insulated cups with straws. They'll be great for home. On an Eco shop site I found some thermos drink containers with straws as well as some silicon straws. They arrived today. I plan to write a proper review comparing each for how they go practically.
Another friend said Slippery elm is a life saver, possibly more for the oesophagus.
I'm feeling confident regular exercise can improve the whole experience (again this is the advice from others who have been through as well as being well supported by research). Because I had been travelling a lot for work prior to diagnosis I'd been doing no regular exercise, so this is going to force me into it. I had a goal of becoming a tai chi instructor in the next year. In some ways this whole experience might make it more likely, even if it delayed by 6 months -year.
Re Nausea: apparently the meds are pretty good at keeping this at bay.
My oncologist is very keen on magnesium and zinc apparently.
Re Hair Loss: I had fun on ebay buying cheap colourful wigs ($4 each). I've ordered my 'normal' wig after trying several at a specialty wig shop. I've also been on Ebay for pretty head wraps. Just also discovered some bamboo night caps from a specialty shop in Adelaide and have crocheted myself a funky little newsboy cap.
My friend and I found a wig of just a fringe with sides that we plan to attach to a hat, plus some long hair extensions we'll plait and attach to a different hat.
My oncologist couldn't predict how the chemo will hit me, I do have to wait to have it. I would like to get to a naturopath who's had a lot of experience working with the chemotherapy. I did find an excellent US university site which summarised all the current evidence and precautions for various herbs including the effects on oestrogen. My Ca is oestrogen and progesterone positive, so need to be cautious with any herbs that might impact on hormones.
The other advice I've been given is prioritise whatever is most important and shed whatever I can for the next six months. I had just started a small business, but that's mostly going to go on the backburner
Oh, and last little story. My cousin, who is an emergency nurse recently met a lady in her 80s who is forty years post her initial breast cancer. This lady is convinced it was learning the ukelele which has managed her lymphedema. She also decided she would learn a new language each time she had to have chemo for a recurrence or new cancer and she is up to her 7th language! She has spent her time in between doing aid work in developing countries. What a legend. I play guitar, but my uncle, who recently took up instrument making as a hobby has started making a ukelele for me. I'm really looking forward to it!
Have you got a good physio? How is your arm movement?
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Hi Bronwyn, I agree that it feels great to be proactive. Definitely agree we need to be easy on ourselves if we have a tendency towards self criticism.0
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Thank you for your kind words od support, It really does help to hear from people that know exactly what I am feeling. i will definately look into having soemone here with me at all times.
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