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Now Ye're Talking - to a cancer patient
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31-05-2017 5:41pm#1Our next guest is currently a cancer patient. She was diagnosed with breast cancer late last year - unusual for someone of her age, mid-twenties - and she has been receiving chemotherapy.
She is here to answer any questions you might have about her experiences thus far.
Please remember, no medical advice can be asked for or given
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Like the previous two posters I don't have a question, but I did want to say a huge "hats off" for doing this.
Thank you. In recent years a number of my family (too many) have got this awful disease so I have bags of sympathy.
I hope your treatment is going well.
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Hi,
Thank you all so much for your kind words and warm wishes. I really appreciate them
The waiting time between your initial appointment until your follow up appointment is a horrible time, it is a very anxious time. Four weeks is a very long time to wait, a few patients I have spoken to were all waiting two weeks or less, I myself waited a week and a half, at the time it felt like a lot longer.I myself had a 'scare' a few years ago where I found a lump on my breast, I had to wait 4 weeks to see a consultant and it was a scary time, I'd have really appreciated a post like this.0 -
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Thank you so muchWishing you all the very best for a full and speedy recovery.
Do you mind me asking how you found out? ie did you suspect there was something wrong and asked to be checked out, or was it discovered in the course of another check up?
I did an exercise class and it was shortly after a few classes I noticed a lump so I went to my GP and along with the practice nurse took a look at the lump, neither were happy so I was referred for further examinations/tests where it was suspected and then the results of those tests/examinations confirmed that I have cancer.
I also had some red bumps (like little spots) on the side of my breast which were extremely itchy but disappeared after about a week.
I had also had soreness in my armpit and also along my side. That is because my cancer had spread into my lymph nodes causing some swelling which caused the soreness.
Physically, I rest as much as I need to. I don't exert myself and I do whatever I need to do for my body/mind/mental health.How are you finding dealing with it, both mentally and physically? I know people react differently on both, so hope you're doing well. Did you have any experience of cancer (as in anyone close to you) before this? Do you find all the medical terminology and information a lot to take in? I know hospitals get a bad rep on a&e waiting times, etc, but once you're "in" the system do you think it's better?
Mentally I've found it hard, I will admit, I attend a counsellor and I also have an amazing group of friends who have been there for me every step and have made it an easier time, it’s still not easy but it is easier when you do have a good, strong support network around you.
I still make an effort to get out and about, I go grocery shopping once a week, I meet my friends or they come to my house if I’m too tired or anything to go out but it is important to try and get out (when possible) and not stay at home 24/7. It’s good for your mental health but also getting out physically and walking (doing the grocery shop, getting new clothing, whatever it is) is good for you
One thing I will say - this is a time when you absolutely 100% unashamedly need to be selfish - in every way. You do everything that you need to mind yourself.
Self-care is important anyway but even more so at a time like this because it is an utterly exhausting (and sometimes isolating) time.
I don't have any experience with cancer no, this is all new to me.Did you have any experience of cancer (as in anyone close to you) before this?
I did at first, I found it very overwhelming. I was lost with it all, but I did plenty of research and anything I was unsure about I asked questions, don’t be afraid to ask as many questions as you need to. Anyone going through cancer, no matter what type of cancer will need to make some very hard and very big decisions so no question is stupid/silly etc. It is utterly important you know and understand everything you are being told so you can make informed decisions and you know and understand everything. There is a huge amount to learn (more for your own sake than anything really) so the more you know and understand, the better.Do you find all the medical terminology and information a lot to take in?
I was like an interviewer whenever I was in the hospital or any appointments because I always had loads of questions. The staff are more than happy to sit with you and answer any and all questions you have, if you think of something at home, and don’t want to wait, ring them. They won’t (well they shouldn’t) get mad/snappy etc. Anything they can do to make it an easier/more bearable time for you, they are only too happy to do) within reason of course.
They definitely do, and to be honest, I would have been one of those people who heard all the bad things and went with them, my own experience has been the complete opposite.I know hospitals get a bad rep on a&e waiting times, etc, but once you're "in" the system do you think it's better?
When there is something really wrong, be it cancer or another illness, once you are in, you are seen straight away, there is no waiting around etc. I am a public patient, so I’m not paying out for each appointment and I’ve no private health insurance, yet, I have received top-class care.
When I was diagnosed I was seen immediately and started my chemotherapy two weeks later.
The week I was diagnosed, I was in hospital every day for tests/scans/appointments. I was not left waiting at all.
The only thing that I do have an issue with is that women in Ireland under 35 are put on waiting list until they’re called for an appointment, anyone over 35 is seen within two weeks, because women over 35 are more at risk.
Now to me, symptoms are symptoms so regardless of age if you present to your GP with symptoms and are then referred, you should be seen ASAP not put on a waiting list. That is one thing I would prefer to see changed as soon as possible.
Honestly everyone approaches it differently. Some people didn’t say anything, others gave cards, flowers, offers of help.Well done on doing this AMA ...one question how do people approach the subject when they find out you have cancer as I have had a few relatives and work colleagues diagnosed but I am unsure and nervous as to what to say to people...
Thanks and wishing you all the best.
I know for me personally when people kinda looked first (I lost my hair straight away so people knew immediately without me telling them) they would ask how I am, how’s life etc. and I would straight out say “I’m good, I started chemo recently but everything is going well even with that” and then ask how they are, and continue on the conversation just as normal.
It is very awkward, but it is important to know that the person who has cancer finds it just as awkward as those (such as yourself) who know but aren’t sure how to approach it. When I was first diagnosed and the “news” was “just out” I didn’t even know what to say, it was only from reading various websites, blogs etc. that I decided to go the direct route.
Also, if you hear through friends/colleagues etc. X has cancer, don’t be afraid to say “I heard from XX that you are unwell, and I just wanted to wish you well” or something, so many people have approached it that way with me and it’s never been an issue personally. You will find some people are awkward, no matter what way you or they approach it
I wasn’t waiting four week, that was m'lady who was waiting four weeks.First Thanks for putting yourself forward to answer these questions,
hope you don't mind me asking but with the 4 weeks wait , was it private medical insurance or was it public ? Thanks
I am a public patient, wouldn’t consider going private personally because 1) it is very costly and 2) the public system is far better IME.
I know of one person who went private, paid through the nose and did not have a good experience, they themselves said the public system is far better and quicker.0 -
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The only thing I had was excessive sweating, but I had put that down to something else but as it turned out that is connected with my cancer.Mountainsandh wrote: »Did you have other symptoms, like tiredness, or "feeling" something was wrong with you, prior to finding the lump ? You seem like a strong young woman and I wish you a prompt healing and recovery.
For about three months I had suffered excessive sweating and I wouldn't generally sweat that much, but within those three months some nights I would change pyjamas 2-3 times, which was highly unusual for me. I had fans on at night, I couldn't stick any type of heat.
When I then discovered my lump I Googled breast cancer, saw the symptoms so I went to my GP and he then made the referral.
I had a feeling there was something but I honestly just thought it was an abnormal cyst as there is a history of cysts in my family, but I didn't think cancer and definitely not at my age anyway.
Cancer is one of those things where you hear about it and think "that won't happen to me", you hear of your grandparents, elderly relatives, neighbours, family friends or whoever that have it, but you never ever think that it could be you. That probably sounds really odd
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I have cancer, AMA wrote: »
I had a feeling there was something but I honestly just thought it was an abnormal cyst as there is a history of cysts in my family, but I didn't think cancer and definitely not at my age anyway.
Cancer is one of those things where you hear about it and think "that won't happen to me", you hear of your grandparents, elderly relatives, neighbours, family friends or whoever that have it, but you never ever think that it could be you. That probably sounds really odd
Stage 4 Hodgkins. Two years in the clear now. Same thing I thought when I found a lump. It's just a cyst, no rush. People on tv on the hospital shows get cancer. Not me. Turns out that wasn't correct
What treatment will you have to undergo and for how long?0 -
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Thanks for doing this AMA, there but for the grace of goodness and all that...
When you told people, did anyone's reaction surprise you? Someone you thought would be really supportive that wasn't or vice versa.
Did you think about your bucket list when you were diagnosed? What was top?
Good health to you in the future, it really is better than wealth!0 -
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I haven’t, but in saying that, I do try and see a funny side or put a fun spin on things wherever I can, it definitely helps and it does help to lighten the mood at times as well, because if I were to be serious all the time I would be quite down I think so I try to make fun/jokes wherever I can baby and crumble wrote: »Have you had any experience of the funny side of it all yet? I say that as someone who has seen a few of the people closest to me go through what you are now, and some really stupid funny stuff happens (in my experience) that you just have to laugh at. It helps you get through the really ****ty, awful experiences I reckon.
Seriously well done for doing this. We need to talk more about cancer and all forms of illness if you ask me.
We definitely do need to talk about it more, I 100% agree with you
Congratulations, I’m delighted to hear that. Well done Yeah I thought the same and I learned very quickly that you can never say never because you really don’t know what is around the corner or what the future holds. It is scary.Canis Lupus wrote: »Stage 4 Hodgkins. Two years in the clear now. Same thing I thought when I found a lump. It's just a cyst, no rush. People on tv on the hospital shows get cancer. Not me. Turns out that wasn't correct
What treatment will you have to undergo and for how long?
My treatment plan is chemotherapy, surgery, radiation therapy, physiotherapy and mental recovery. I hope to be finished all treatment by Autumn of next year.
I would say it is harder for guys more so than women, some of my male friends (of various ages) really don’t know what to say or ask and they find it so awkward, I wouldn’t resent anyone for not asking/speaking about it because I know that it isn’t meant in a nasty way or anything, I know they are awkward/uncomfortable about it and they don’t mean to be.As a typical guy I've generally found it hard to address difficult topics like this in general and I remember going through a phase where a good friend of mine had Leukemia and my approach was to basically treat him no differently, plenty of slagging, still got together regularly for gaming sessions etc, practically ignored it. I always wondered if a part of him resented the fact I didn't address the issue with him, or maybe he was grateful that some people didn't start treating him differently? I know women are generally much better are sharing and dealing with this emotional trauma but have you encountered anyone who treats you the exact same since diagnoised? Do you resent them for it?
Hope you recover soon!
I would say you did the right thing in continuing on as normal, it is important that you do treat anyone with cancer as normally as you can because at the end of the day, they are still normal, they are still the same person but they’re going through a really, really difficult time and their normality has changed hugely so anything that you can do to keep their normal, normal, is important, in my opinion anyway
Thank you
I was surprised, I have been lucky enough not to experience any negativity, everyone has been amazing, people I wouldn’t know well have offered help, sent flowers/cards etc. that surprised me because it was unexpected.Gloomtastic! wrote: »Thanks for doing this AMA, there but for the grace of goodness and all that...
When you told people, did anyone's reaction surprise you? Someone you thought would be really supportive that wasn't or vice versa.
Did you think about your bucket list when you were diagnosed? What was top?
Good health to you in the future, it really is better than wealth!
The one thing I really wanted was to beat my cancer so I could go and visit a relative next year, and with the luck of God, it’s looking like that will happen for me.
I 100% agree with you, health is far better than wealth.
Thank you so muchlivedadream wrote: »You are a true superhero, keep battling on.
I guess my question would be:
whats your day to day like during treatment?
Day to day for me is pretty relaxed/chilled (though it doesn’t always feel like that).
One a week I go into town with family/friends, go for coffee and a catch up, then I’ll do the grocery shopping with family, then come home, relax with some YouTube videos, a TV show/movie and generally take it easy.
On the days I don’t go into town, I chill at home, again, movies/tv shows, maybe some cooking/baking if I am able, I’ll take a bath to relax, Skype family/friends etc. I always try to fill my days so I am not bored, but equally, I make sure to take it easy. I also started a blog which keeps me occupied and it helps me as well just to talk about everything.
Thank you so much. I am so sorry to hear that, four weeks certainly seems to be the norm, but if you have more than one symptom go back to your GP and get them to ring the clinic/hospital you were referred to and ask them for an urgent referral and the clinic/hospital will then ring you with an appointment.Hi just wanted to say I hope you recover well and stay positive , I also had a different type of cancer just over a year ago , four weeks ago I found a lump on my breast I'm still waiting on a scan , is this the normal waiting time the waiting is killing me ,once I get the scan how long is the normal waiting time for results thanks best of luck
They could ring at 5pm with an apt at 10am the following day or ring at 9.15am and say they’ve an apt at 12pm though so you need to be ready to go immediately.
Waiting times for results can vary, I know people who were waiting a few days, some were a few weeks, I was ten days personally, so it can vary.
One thing I would say is, watch how you word it to your GP as some GPs can fob you off if you've been given an apt for four weeks.
Rather than say "I want to be seen quicker" say "I need to be seen quicker". Everything I need rather than want. It's only one word, but it is the one word that can make a huge difference.
If I can offer any (non medical) advice please ask. I would be more than happy to help in any way I can.
I'm sending you big hugs because I know what an anxious and scary time it is. Be kind to yourself and do whatever you need to to look after yourself.
I wasn’t disappointed by anyone, I was surprised by how kind people are. People I would never have expected to help (because I didn’t know them well enough) but everyone has been amazing.Similar to a previous poster, that was one of my questions - did some people surprise you or disappoint you in how they reacted?
How often do you attend for the chemo?
Do you attend alone or have someone accompany you?
Thank you for doing this, and I wish you every good wish for continued strength and a great recovery.
I had two types, the one I had first was every two weeks and the second type was every week. I had someone accompany me every time. It was recommended by my Clinical Nurse Specialist that I have someone with me every time.
Thank you so much 0 -
First of all I wish you a speedy recovery.
How important (if at all) is it that you maintain the "fight" to recover?
The reason I ask is that we hear about the fight very often and I wonder are there times that the patient just isn't up to fighting it and if they ever feel there's too much expected of them in that phrase?
Do you think a positive attitude is necessary for recovery and is it always expected of you, to be seen as strong and chirpy almost?
A friend of mine received a diagnosis recently and he's coping well, better than what I think I'd cope at least.
It's always the nice people who get the knocks.0 -
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Hello. Thanks for doing this AMA
Were you working or studying or anything when you found out that you had cancer? Have you had to pause everything while you receive treatment?
It seems like your treatment will be going on for quite a while, that must be hard if you've had to put things on hold.0 -
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Thank you so muchFirst of all I wish you a speedy recovery.
How important (if at all) is it that you maintain the "fight" to recover?
The reason I ask is that we hear about the fight very often and I wonder are there times that the patient just isn't up to fighting it and if they ever feel there's too much expected of them in that phrase?
Do you think a positive attitude is necessary for recovery and is it always expected of you, to be seen as strong and chirpy almost?
A friend of mine received a diagnosis recently and he's coping well, better than what I think I'd cope at least.
It's always the nice people who get the knocks.
It is very important I think, I guess for me when I was first diagnosed I knew that treatment and fighting my cancer was my only option, giving up wasn't. I have so much that I want to do and I am still so young and have my whole life ahead of me that I am determined to fight my cancer and beat it. I refuse to allow it to get the better of me.
There definitely are times when we're not up to fighting, we're tired, physically and mentally, our whole lives changed, everything is put on hold and our cancer and our treatment(s) consumes our lives and that's very hard to accept, especially because it is sudden.
In my experience I am always expected to fight and continue fighting but that is because I know I can do, I am doing it and I am going to continue doing it until I get my all clear. My friends and family know I can do it so they expect me to do it, because they know that I have it in me.
I don't like to let negative thoughts creep in and anytime they do, I think of a positive so that I remain positive because having a positive mindset helps hugely.
When I was diagnosed I thought "oh god I have cancer" but then I think "I have a curable cancer" so for every negative thought I put a positive spin on it.
It sounds simple and easy, but it is far from that. It really isn't easy remaining positive all the time, or keeping on top of the positivity but negativity is draining so I don't allow myself to be negative if I can at all.
One thing I always tell myself is that this is temporary, it isn't forever, and that helps.
I was studying and yes I've had to pause everything unfortunately but as I said above there, it is temporary. As soon as I am well enough and able enough I will be going back to studying and working, there is no doubt about it.Hello. Thanks for doing this AMA
Were you working or studying or anything when you found out that you had cancer? Have you had to pause everything while you receive treatment?
It seems like your treatment will be going on for quite a while, that must be hard if you've had to put things on hold.
It is hard, but I've a great support network with friends, family, professional support which helps hugely.0 -
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