Highlighted
Member
Posts: 15
Registered: ‎11-09-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hello funnyface,

 

Just wanted to say thanks for sharing your story. (I've just been diagnosed, and I particularly appreciate hearing about other women's stories who've been faced with BC much longer).

 

You're right that waiting times can be long/er with the NHS and that sometimes treatments have to be fought for - I guess it also depends where you live in the UK. I'm in Scotland and so far things are looking relatively good. It's very early days for me, though.

 

Thanks again,

 

Rapunzel2018

 

 

Member
Posts: 1,418
Registered: ‎19-04-2017

Re: Newly diagnosed and don’t really know how I’m feeling

Aww, thanks Avibaby, that is so nice to hear.  I'm glad I've been able to help in any way at all.  I just feel like this has been an awful thing to have landed on your life and I just can't switch off from what others are about to face.  I started doing so much research as soon as I was diagnosed and networked with others and I don't want that knowledge to be lost.  Cancer is so mentally exhausting and you're trying to learn everying in a hurry.   Let's hear it for Lola! Smiley LOL  http://lifeafterlola.com. xxxx

Member
Posts: 71
Registered: ‎16-07-2018

Re: Giving back to the community.

[ Edited ]

 

 

 

Member
Posts: 71
Registered: ‎16-07-2018

Re: Giving back to the community.

[ Edited ]
 
Member
Posts: 71
Registered: ‎16-07-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Mai,

 

I look at what you have said and done and all I can think of is that there is no one else who has given back more! You are such a fighter - and only 18 months from your own diagnosis! And again, you have given me more inspiration with your Benjamin Franklin quote!

 

Thanks so much for being so amazing! You are shining light to us all.

 

Avibaby

 

 

Member
Posts: 1,418
Registered: ‎19-04-2017

Re: Newly diagnosed and don’t really know how I’m feeling

[ Edited ]

Funnyface, yes, my experience of medical care in the USA has been fantastic, paid for privately on medical insurance.  After having a severe aura migraine on the slopes once, I went to the medical centre, immediately received an injection and was back skiing after an hour.  Usually a migraine takes me out of action for a day or two.  Over here I have never been given effective medication for aura migraines.  Naproxen works fairly well, which I have taken in Canada OTC but over here it is only sold under the brand name "Feminax" and only licensed for period pains.  I am always looking at the USA to see what's available and like you say, over here we have to push for things a bit more and I push at any opportunity.  I think we have a duty to fellow cancer suffers past and present to do this.  Many are too ill to speak up so those of us well enough to push have to do it for others.  We pay for our NHS through taxes and we love that everyone in the UK is treated equal regardless of socioeconomic status.  I suppose there is a price to pay for this: we have less  funds to make decisions which treat a minority/which have less success/or are very expensive, we have to target the tried and tested which works on the majority.  There is no easy way but I'd like to think reseach will enable us, globally, to one day look at cancer with much less uncertainty.  My eyes have seen much more than I wanted to see and my heart is forever scarred from what I have had to watch others in the cancer community endure.  That's why it so important to grab hold of life and live it every single day.  Here's a quote I saw recently which made me think:  "Dost though love life?  Then do not squander time, for that is the stuff life is made of" Benjamin Franklin 

Best wishes. xxx

Community Champion
Posts: 3,737
Registered: ‎01-05-2012

Re: Newly diagnosed and don’t really know how I’m feeling

Nothing is really free and all systems have their faults, which can include a poor medical team and not being your own advocate. Over the years I've seen more than I would of cared to see from medical care. Good luck! FF

Member
Posts: 151
Registered: ‎29-05-2018

Re: Newly diagnosed and don’t really know how I’m feeling

I wouldn’t say our health service is ‘free’ 🙂 You sounds like you are getting excellent treatment, which is great news x

Community Champion
Posts: 3,737
Registered: ‎01-05-2012

Re: Newly diagnosed and don’t really know how I’m feeling

Hi ladies, I've been wide eyed since 1:30 AM, so have been reading posts. I'm a secondary lady and have been posting on the forum since 2005. I'm from the USA and saw a comment about statistics and how our insurance effects it. My oncologist was from the UK and when I was scared with metastatic bc he had told me how much better our insurance in the USA is. I can tell you that if I have an CT have the results in 2 days. If my treatment has failed it is decided the same day what the n ext treatment will be. The secondary ladies on here wait weeks for a CT and then a few more weeks for results and a few more for a change in treatment. I have never waited this long. I also have had treatments long before they were available in the UK. One drug in particular called pabocilib was given to me in 2015. I was also given this drug after 5 different other lines of treatment and 10 years of mets. UK girls have to fight to get it. NHS doesn't want to cover it. Yes, you are lucky that NHS is free, I don't feel our health care changes the statistics. 

 

My primary BC was 1995. No nodes involved. Scans and check-ups every 6 months for 5 years. Then once a year. Ten years later in 2005 mets to lungs and lymph nodes In chest. I'm at 13 years with mets. I feel very well taken care of. 

 

Just wanted to let you know that we are very well covered. FF

Member
Posts: 151
Registered: ‎29-05-2018

Re: Newly diagnosed and don’t really know how I’m feeling

[ Edited ]

Well donfor reporting Nhana. Idiot

Community Champion
Posts: 2,893
Registered: ‎17-03-2016

Re: Newly diagnosed and don’t really know how I’m feeling

Hi all,

I have reported the Nhana post below, unfortunately they come in occasionally, stay safe. 

ann x

Member
Posts: 5
Registered: ‎25-08-2018

Re: Newly diagnosed and don’t really know how I’m feeling

I really appreciate all of your messages and kind words, it really does help to speak to other ladies going through or sharing past experiences, it makes you feel like you’re not on your own so much!

Already a few days in, this forum has helped greatly and even just reading some of the blogs that people have written it all helps to see a different side to things that I wouldn’t have seen before.

Ive looked at some of the YouTube videos on wigs, make up etc and the ladies look fantastic! Whatever will be will be, so will take each day as it comes and go from there. I’ve found the more I try to take it all in the more it goes in one ear and out the other lol.

Thank you again ladies, I feel a lot better about it all.

Xxx
Member
Posts: 1,418
Registered: ‎19-04-2017

Re: Newly diagnosed and don’t really know how I’m feeling

Becky, we all go to Dr Google after diagnosis even when advised not to.  I looked up all statistical stuff early on to prepare myself fr the worst case scenario and that doesn't help at all. (I guess worst case scenario planning is human nature).  The best thing is use Dr Google for healthy things like healthy eating, mindfulness etc but avoid those stats as they'll send you down a wormhole! Xx

Member
Posts: 1,989
Registered: ‎03-09-2014

Re: Newly diagnosed and don’t really know how I’m feeling

Hi Becky

 

I don't think your vain at all. You're a young, single woman. I didn't need chemo, but I'd have been bothered by hair loss etc. too, as a single 46 yr old, at the time. But I've seen women who I didn't realise were wearing wigs until they told me, because they looked so fabulous. There are loads of women (unfortunately) on the chemo threads, who are full of useful tips and ideas about what to do, have some good chats and fun with even.   

Also, I understand you not wanting to upset people, but the poeple who really care about you, would prefer you to be open about how you're feeling, however a mess you feel. They will want to lovingly support and care. This is a major traumatic thing for anyone to go through, so learn to lean on them, and ask for help, be that physically or mentally. My Mum (bless her) and a few good friends were absolute rocks. Plus, it's nice to get a bit of light relief too.

Yes, this Forum's invaluable, so use it as much as you will or can. Great for sharing feelings, experiences, advice. Don't be afraid to have a good moan, rant or sob. You'll get lots of sympathy, support, and no doubt a few laughs too.

Golly - you've got a lot to get through before Friday then, if you're to have fertility treatment, I presume to harvest some of your eggs. Glad you've decided to go for it, as you may have regretted it had you not. Better to have the option there, just in case.

Good luck with it all, darlin. Keep posting to let us know how you're going on, coping or not.

Lots of love and good wishes

Dellywelly xxxxxx  

Member
Posts: 60
Registered: ‎01-07-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hi Becky,

I've sent you a private message as we're the same age and I've also had to deal with the fertility issue. Please feel free to get in touch if it would be helpful for you to speak with someone in a similar situation.

It's a lot to take in, but this forum has been a godsend.

Caroline x

Member
Posts: 151
Registered: ‎29-05-2018

Re: Newly diagnosed and don’t really know how I’m feeling

A lot of the results on google are based on stats from the USA and the facts / patient survival rates become distorted because of the way medical insurance works over there. Thank goodness for our wonderful NHS! 

In my case yes, time has seemed to go so quickly. I didn’t have chemo, went straight to radiotherapy. Please don’t try to take it all onboard in one go...easier said than done I know! The invaluable advice on this forum taught me to take things one stage or step at a time. My BC nurse also wrote down everything said in meetings for me, which helped enormously. 

Member
Posts: 5
Registered: ‎25-08-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hi JaneBelinda thank you for messaging back, I’ve already made that mistake! Dr Google did not give me peace of mind at all, walked into an appointment yesterday crying my eyes out and the lovely nurse told me off (in a nice way haha) and to not read anything on there!

Does it really feel like it goes quick? I’m really dreading the chemotherapy, I don’t want to sound vain but it’s just the changes that scare me!

Member
Posts: 151
Registered: ‎29-05-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hi Beckyr31, Your feelings are entirely natural! So pleased you have read some of the stories here and that you are embracing the situation in a positive way. Believe me it DOES get easier to deal with once you know your treatment plan etc. For me, diagnosed in early May, it felt like the world had stopped turning. Everything seemed to happen in slow motion but now, two thirds of the way into radiotherapy treatment I can look back on the last few months and say, bloody h3ll where did THAT time go! 

There is some wonderful advice on here and if I can offer one tip....my own two pennies worth it will be stay away from Dr Google! 😬😏

Member
Posts: 5
Registered: ‎25-08-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hi there, thank you for messaging back. Glad to hear you’re doing well! It helps (in the weirdest way) that there are other ladies who don’t know personally but have experienced and are experiencing the same thing as what you’re going through, it doesn’t make you feel as alone ❤️
Member
Posts: 5
Registered: ‎25-08-2018

Re: Newly diagnosed and don’t really know how I’m feeling

Hi Ann

Thank you for messaging back, I’ve been reading some of the forums and info pages on here and can see how lovely and supportive everyone is, I feel a bit better reading other people’s experiences and how they’ve dealt with it. I know not everyone is the same but I’m sure that like lots of ladies on here it came as a big shock! It’s just all a bit overwhelming at the moment but I’m sure in time it will get better, it’s all just scary and new, got to put my big girl pants on and stay positive!

Xxx