Now Ye're Talking - to a cancer patient

Toots wrote: »

Wishing 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?

Thank you so much

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.

Danbo! wrote: »

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?

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.

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.

Danbo! wrote: »

Did you have any experience of cancer (as in anyone close to you) before this?

I don't have any experience with cancer no, this is all new to me.

Danbo! wrote: »

Do you find all the medical terminology and information a lot to take in?

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.

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.

Danbo! wrote: »

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?

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.

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.

harr wrote: »

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.

Honestly everyone approaches it differently. Some people didn’t say anything, others gave cards, flowers, offers of help.

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

SCOOP 64 wrote: »

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 wasn’t waiting four week, that was m'lady who was waiting four weeks.

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.

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.

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.

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

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.

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 

We definitely do need to talk about it more, I 100% agree with you

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?

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.

My treatment plan is chemotherapy, surgery, radiation therapy, physiotherapy and mental recovery. I hope to be finished all treatment by Autumn of next year.

RedXIV wrote: »

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 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.

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

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!

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.

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.

livedadream wrote: »

You are a true superhero, keep battling on.
I guess my question would be:
whats your day to day like during treatment?

Thank you so much

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.

noble00 wrote: »

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

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.

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.

LynnGrace wrote: »

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 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.

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

Thank you all so much

Persephone kindness wrote: »

Hello.

I will just say I wish you a quick recovery. I think you are very brave much love.

I do have a question. Thank you for doing this.

How can a friend or family member help you through this? How can we understand? There isn't any breast cancer in my family either side and I don't know anyone who has had it. So is there something we should know?

Like if there was something ANYTHING someone could do right now for you ..what would that be??

Also what charities do you feel have helped?

Also what should we NOT do?

Thank you so much 

One thing I found really helpful was having someone (friends, family etc.) do was to listen. I know that sounds really simple, but often people will give advice, or say something to try and make the patient feel better or lift their spirits if they’re having a bad day but listening and just letting someone rant, give out, whatever it may be but just to get everything off their chest.

Rather than give advice etc. just listen and take in what that person is saying. Ask questions so you can try to have some understand of how that person is feeling. I know it sounds really simplistic but it really does help. It helped me anyway.

Include them as well, chemotherapy in particular can be very isolating because patients are at a high risk of infection so if you’re planning a meet up, rather than go out maybe arrange coffee/lunch/dinner/games nights’/movie night etc. in someone’s home, if possible. Going to someone’s home is still risky as anyone could have an illness/cold and not show symptom early on but going out to restaurants, coffee shops etc. is riskier (according to some nurses I’ve spoken with) because they’re not as clean as a private home would be. Chances are you know what your friends’ homes’ are like, how clean/hygienic they are, whereas public places are very different because people are sneezing, coughing around tables etc. and there’s no way for staff to be on top of it, whereas in a private home, it’s slightly different in that if someone sneezes on the table, you can disinfect it. It’s little things like that that were pointed out to me by nurses.

Do some research of your own, read blogs, get books from the Irish Cancer Society, do any research that you can and educate yourself that way you will have some information, knowledge, understanding etc. of what that person is going through but it is important to remember that you will only ever have some understanding of it. You won’t fully understand it all unless you go through it yourself. A lot of people (in my experience anyway) think that because they have some knowledge and some understanding that suddenly they know and have full understanding of what it is like to have cancer and to go through cancer treatment.

I will have to think about that one. What could someone do for me now. There are so many things, I will have a think about this one and come back to you.

The Irish Cancer Society have been incredible. They have given so much advice, support etc. to me and I am so grateful to them for that. I never realised just how much they do for patients until I needed their services myself. They are absolutely incredible.

Don’t give advice unless it’s asked for. I know this sounds ungrateful but so many people have given me advice on various different things throughout treatment, I know that sounds ungrateful and I genuinely don’t mean it in an ungrateful way but patients will get so much advice, opinions, thoughts, information etc. that it is overwhelming and chances are whatever you’re giving advice on, they’ll have already been advised by their CNS, an oncology nurse, an oncologist, consultant etc.

Don’t say that because today is a bad day that tomorrow will be better. No one knows what tomorrow will be like and no one can say it will be a good day.

If someone is having a bad day and decides they want take away or a duvet day or a glass of wine or whatever, let them have it. I found when I wanted take away or a glass of wine I had friends giving me advice left, right and centre and telling me horror stories of people who got sick, ended up in hospital etc. Really, no patient needs to hear that. Before you start treatment your consultant/CNS/oncologist will go through everything what you can and can’t eat, drink, do etc. so stick with the advice/information of professionals.

My friends meant their advice in a good way and it wasn’t them trying to be protective or anything but at the same time, it can get tiresome when they give advice all the time on everything. It started to grate on me because I’d already been advised by my medical team so I knew what I could and couldn’t eat/drink/do.

joefromireland wrote: »

I wish you a quick recovery.

I do have a couple of questions.
Did the doctors give you any advice on what to eat or drink ?
[font=Open Sans, Arial, Helvetica, sans-serif]Have[/font] you read the book" stop feeding your cancer" by a Dublin doctor John Kelly
Or have you heard him speak about his book last month in a online [font=Helvetica, Arial, sans-serif] interview on [/font][font=Helvetica, Arial, sans-serif]iTunes[/font][font=Helvetica, Arial, sans-serif] or [/font][font=Helvetica, Arial, sans-serif]here[/font][font=Helvetica, Arial, sans-serif] (if you don't use iTunes).[/font]

I was advised by my CNS, oncologist and oncology nurses on what I could and couldn't eat. They go through all of that with you before you start treatment as each treatment is different and I was lucky that I really didn't need a particularly strict diet, however I was still careful with what I ate and drank and I followed all medical advise strictly.

I haven't heard of that book but I will look into it. I haven't heard that podcast but I will definitely listen to it, thank you so much for the link.

skimpydoo wrote: »

I saw my EMT specialist yesterday and I am having one of the swollen lymph nodes in my neck removed next Monday morning.

I got diagnosed over 2 months ago and I should have started treatment by now. I have had a lot of delays and results etc going missing along with certain departments not arranging appointments for me when they were told too.

My day to day life has changed too as I can't do as much as I used to until my immune system gets back to normal, and one positive is that I have stopped drinking coke a drink I used to love. I mainly drink OJ and also water at home and that has made such a difference. Also as I will be home alone a lot I decided to convert my living room into a mini man cave and I treated myself to a 49 inch 4K smart TV, a 320 Watt sound bar to go with the TV and a new X Box one S. Within 3 weeks I will know what treatment I will be receiving and also the exact type of Non-Hodgkins Lymphoma that I have.

Living alone has its benefits as I have nobody to disturb and if I need someone to be there for me over a few days I stay at my parent's house.

I got negative thoughts and tears for the first time yesterday and I was glad that nobody else witnessed it and I aim to make sure that is a rare occurrence.

Thanks for the hugs and I am sending some right back at ya.

That is fantastic news, I hope Monday goes smoothly for you and you know soon what type of Lymphoma you have.

That is awful about the delay, I had a delay myself, buy only by a few days which I didn’t mind too much but two months I wouldn’t be happy with.

Yeah a healthy diet, loads of water and juices really help, they help with the energy levels too. You did right by treating yourself, it’s something we should all do more often. Whether it be a new TV, box of chocs, new candles etc. just something for yourself no matter what it is. I often see people treating others and buying gifts for others, but rarely for themselves. That’s something else I have learned to do. I rarely bought for myself and would always find an excuse to treat others but not myself but since my diagnosis I’ve learned that it is more important to treat myself and take care of myself like I do for others.

It’s great that you have the best of both worlds. How are your parents with everything? It is a hugely worrying time for them, and for you too of course, parents tend to worry more though, in my own experience and in the experience of other patients I have spoken to.

Let yourself cry when you need to, don’t force yourself not to cry, whether you are alone or in company. It’s important to let your emotions, fears and insecurities out, bottling them up won’t help at all and can increase your anxieties* in what is an already scary, stressful and worrying time.

*anxieties as in when we’re diagnosed with cancer or another serious illness, it tends to create a lot of anxieties around our health, treatment, life etc.

Thanks for the hugs & the best of luck with everything, I hope you start treatment ASAP.

jopax wrote: »

I admire your openness to share with us your experience.
Do you mind me asking if anyone in your family ever had breast cancer, as they say it can run in families.
Also, has it changed your view of life in general & how much we worry & winge on about nothing.
I wish you all the best in your recovery & thanks for sharing.

Thank you 

Ask away, no one in my family has or has had breast cancer. I am the first person so this is new to all of us. It can run in families definitely, but it can also happen that is a one-time thing to happen in some families. I’m hopeful that it is a one-time illness in our family. I don’t carry any genes that link back to cancer of any description which is a huge relief.

Yes, it definitely has. I view life as far more precious now. There’s a few things that I would love to do that I kept putting off, but this has made me really think about them and consider putting a plan in place so that when I am finished treatment and back to work I can start working on that plan and working towards some things that I want to do/achieve in life.

There are so many things I worried about before and now I can see how insignificant they are (and were) and I don’t allow myself to worry about them now. I say “if there comes a time I need to worry about them, then that’s the time I will worry about them, but for now, I won’t worry about them”. Seven months ago I wouldn’t have said that and would have worried over various things, now I don’t. I worry about what I need to worry about and let everything else go.

It took a while and a lot of determination and help from my counsellor for me to do that, but I’ve done it. Anyone can do it, you just have to stick with it and constantly remind yourself that if it’s not an issue now, don’t worry about it until it is an issue.

Use that energy for something more positive, something that will reduce your stress, something that will make you happy etc. Don’t waste it worrying on what’s not an issue, there’s plenty of time for that.