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Who should I believe?

9 REPLIES 9
Member

Re: Who should I believe?

While some have replied that they thought your caretakers were too negative, I suppose it’s a matter of preference. I would rather hear the good, the bad and the ugly. For me, when I hear people say that it’s easy or that they know someone who went through it and found it easy it just makes me feel inadequate.  I happen to have a very high tolerance for pain and discomfort and chemo has really knocked me down. I have been able to work 3 to 4 days per week but it is not easy. My job has assigned me desk duty as opposed to teaching in a classroom of seven-year-olds so that has helped.  The paclitaxel is really doing me in even more than the epirubicin. The neuropathy, GERD and fatigue with the Paclitaxel is miserable. 

Member

Re: Who should I believe?

You’re very welcome!

 

Now you are feeling more positive you might be interested to know that today I have been out in the garden doing lots of jobs before the Spring arrives, cooked brunch, done the washing. Walked the fields. Had a nap before I start on the evening meal! I am 5 days into no 6 of 7! Never been sick, managed the loo without any assistance (god knows where that came from!) worked, kept my Yoga and golf up until I got too tired or the weather got too cold, driven when I wanted/needed to basically got on with life but in a chemo sort of way! Chemo brain is more amusing than a disability! 

 

BTW a dog sounds a perfect way to keep yourself active! Go for it.

 

Best wishes

 

xx

 

Member

Re: Who should I believe?

I do not know how to thank everyone that answered my question. Your words of encouragement and the way you made me smile and laugh at a time when I desperately needed it will stay with me forever. Thank you Smiley Happy 

I was already trying to work out how to fit my bed in my toilet, just in case I needed to live there during my chemotherapy. Thank God you stopped me! Now seriously, I was terrified and your answers helped me return to a positive frame of mine. Thank you. I share a house with my mother and she is willing to do everything she can to help me. She is a wonderful source of support. Yet, she needs to go out to work and I know it would be torture for her, if she thought I am too sick even to use a toilet and could not be on my own while she is away. She has read your answers and, I hope, she now feels much better too. 

I have heard that doing qiqong, tai chi and yoga may help with side effects and improve quality of life. Has any of you ever tried it? I have never tried any of them. My usual exercise regimem is basically chasing my crazy dog, playing with said crazy dog and walking with... you have guessed it, my crazy dog (and my mother). However, I am willing to try anything.

Community Champion

Re: Who should I believe?

Well, my dear, I think I would kick both the nurse and welfare officer to the kerb. Short answer is trust those who have experienced it. I'm 72 now, and two years ago had  a WLE with full LN removal, four courses of EC, and 25 rads. For me the op was a walk in the park, although the drain was a nuisance. The chemo was doable, but I'm not offering to do it again. The rads, all 25 of them , including the boosts on the nipple, were easy peasy .  I managed to do a walk the afternoons I wasn't sleepy. Some ladies even work during treatment. I attended my close friends 59 th. wedding anniversary in full party regalia, although I was bald as an egg! Everyone is very very different. I would strongly recommend changing both your assigned BC nurse and welfare officer. You must surround yourself with positive professionals, not these pessimistic excuses. Check out Janie123 on another thread.  Rock on, girl! X

Community Champion

Re: Who should I believe?

Gosh your chemo nurse sounds rather overdramatic and not very encouraging. Yes it's fine to point out the potential side effects but to say you are likely to be unable to use the loo without help is bonkers. Unless you have other serious health issues that is so totally untrue. I though I would spend all my time with my head down the loo but was not sick once during chemo. The anti sickness drugs you get as part of the regime are very efficient in most cases. Tiredness is a factor but not all the time. I worked part time from home two weeks each cycle and was very glad of the distraction. Don't worry unduly and try not to let other people frighten you. Xxxx

Member

Re: Who should I believe?

If you can, I would try to change your BCN because, although some people may have side effects that bad, from my experience and reading that certainly isn't the norm. I was told about possible side effects but also told that there were medications to deal with them if necessary.

 

I really don't think you want to be dealing with someone that negative as your main medical support during treatment!

Member

Re: Who should I believe?

Hi Unakite 

 

In my experience, everyone has such different reactions. 

I had 3 FEC treatments and 3 Docetaxel, I personally found the FEC easier than the Docetaxel as these were where the side effects really hit me. 

The first 3/4 days were normally the most weird where you will get chemo brain and I guess the way I used to discribe it was a feeling of wandering around aimlessly not really knowing what to do with yourself!  But I did get up everyday, shower, do a weeny bit of housework and make breakfast etc. 

The fatigue is something you can manage, it’s tough but I learnt I had to sit and rest which was unusual for me as i’m normally racing around at 100 miles an hour!

No nausea at any time, some side effects on FEC including ulcers in the mouth, taste buds non existent and the usual hair etc. Sleep is something that can be struggle, but speak to your GP or Oncology Consultant, I found some herbal treatments helped a bit. 

I normal found that by the end of the second week I was starting to have some normality back and by week 3 I could get out and drive to the local shops etc. 

 

It looks like someone has painted you a fairly grim picture and as I said everyone is different but I could definitely go to the loo and get around on my own 😆

 

Wishing you all the best with your treatment. 

Big hugs 💕

Bevgriff

Member

Re: Who should I believe?

Oh dear Unakite! I am so sorry you are so distressed with the conflicting information you have been given. 

 

First of all do pop in and read some of the monthly threads, there you will find real experiences good and bad. A lot of support and even some humour!  And of course join your own monthly thread. I have found the unconditional friendship very helpful in some of the darker days.

 

From my experience I have been able to function pretty normally, yes I am tried and yes there are side effects but unless you are very unlucky no where near as dramatic as you have been led to believe. 

 

Chemo is unfortunately necessary, but it is very doable. Your oncologist seems to have the most rational advice.

 

Good luck and ask away if you have any specific questions.

 

You can do this! 

 

Hugs! 

Member

Re: Who should I believe?

Sorry. I meant 'unable to function' for 4.5 months, not days. That was wishful thinking on my part! 

Member

Who should I believe?

Hello. 

I am faily confused and in desperate need of hearing your experiences. I am due to start FEC in a 10 days. My breast cancer nurse says that I will probably suffer from chemo brain, fatigue and nausea so horrendous that I will unable to function for 4.5 days. Another person I spoke to (welfare officer) said I would probably be unable to use a toilet without help for 4.5 months during the treatment with FEC.

On the other hand, my oncologist said that many of her patients have even worked from home during chemotherapy, so they were able to function at some level. My grandmother knows 5 different ladies who have now completed courses of FEC or FEC-T/D (ages between 39 and 75). None of them functioned optimally, but they still were able to work from home, do some chores, paint, attend a wedding.... In other words, be more than lie on the couch all day for 5 months, feeling horrible... or probably not on the couch, but on the toilet. 

Ladies, who should I believe?