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New to all of this...

18 REPLIES 18

Re: New to all of this...

Flowerpot, I'm sorry this is happening like this! I do hope you are feeling better with the fluid drained! I hate we all have to go through this! FF

Re: New to all of this...

Hi All, hubbie took me to a and e on 2nd Jan, I couldn't breathe at all. Upshot is I have mets in lung and liver, I have a chest drain in that has taken off 3 litres of fluid from my right lung, I am devastated, I have also seen oncologist I start chemo on Tuesday, tablet form, I'm hoping many years of keeping this all under control, hoping to be out of hospital by Friday as well, going to start looking at posts on liver and lung mets, oncologist told me I have been so unlucky getting secondary so soon after my first lot of treatment, that doesn't help

Sarah

Re: New to all of this...

Hi Flowerpot,

 

I just want to wish you as good and positive a day with your oncologist tomorrow.   Your GP obviously must have missed the class in med school about talking to patients!  Too obvious I suppose to remind them to treat communications with patients the same as they would a family member or friend.

 

Warm regards,

 

Stacey

Re: New to all of this...

Hello flowerpot, welcome, but sorry you have had to join us. Sorry, too, for the stupid, insensitive way your GP broke the news to you! How awful is that?!

 

Re your question about working. I currently work part time (2.5 days a week), and find that manageable (just, but due to other - back - problems). The change from full time to part time was a company thing at work, not due to chemo. I have found that my immediate work colleagues are brilliant, and the lovely HR lady, but that some of the other bosses (my line manager particularly) can be very cold and uncaring (in fact, I think she thinks I am putting it on). I think the only thing to do is to see what you can do. You might not be aware that you now fall under the Disability regulations and your employers have to abide by certain regulations. If you need (and it is practicable in your job) to go to part time, you must ask them. You will find much more useful information under one of the other main forum headings (Moving Forward after Breast Cancer; Work, Finance and Travel).

 

I wish you good luck. Barton.x

 

Edited to add: just goes to show - I should have read the rest of the thread before replying! Marionp has beaten me to it re employment, and with much more useful information than I gave!

Re: New to all of this...

Hi Flowerpot, sorry to hear about the delay with your results. If only the medical profession knew the strain it puts on us. Seems a lot of us have appointments/results around the same time so lets hope for some positives. Please let us know how you get on. x

Re: New to all of this...

Flowerpot, I just saw your post about using the inhaler. Back in 2012 a tumor was closing off my Broncos  and my lung had collapsed. They did radiation on me to shrink it. About a week after the radiation I was feeling really short of breath and sitting at a school in my bus waiting for my students to come out. I had an inhaler but hadn't used it in months. I was picking up my wheelchair student and her extra equipment. This meant I had to latch her wheel chair to the floor in four places! Drag her "stander" on the bus. I was shirt if breath sitting in my seat and coughing. I decided to use my inhaler hoping it would help. Well that was a big mistake. It made my heart race which made me more short if breath, short of breath made my heart race more. I was in a vicious cycle that wouldn't quit. I called my husband to come get me. I called my boss to send a driver. I landed in the hospital for 3 days! It was my 30th wedding anniversary to make matters worse. The root of this was I had pneumonitis from the radiation which is inflammation of the lung. I was already in this cycle with my heart and lungs, but the inhaler increased my heart rate which mad matters worse! Please be careful using the inhaler. Hope you're hanging in there. The 5th is almost here. FF

Re: New to all of this...

 

Re: New to all of this...

Hi Flowerpot,

 

Sorry you didn't get the results, particularly as you are struggling with your breathlessness. Waiting's bad enough without feeling rotten too.

 

Hopefully once they've got your treatment sorted, you may see an improvement in your lungs fairly quickly (I did) so try to go with it for now and use Christmas as an excuse to stay on the sofa!

 

Maybe you could use some of the time to research the different treatment options so you are prepared when you see the onc and can get started straightaway? There's info on this website and / or ask on here if you have any questions.

 

Hang in there,

 

Marion

Re: New to all of this...

I didn't get the results of the ct scan, now have to wait until 5th January, chest is very tight, can't walk upstairs without using inhalor.  Feeling really down and tired.  We were suppose to go away on Boxing Day, now going tomorrow as exhausted.Smiley Sad  I hope you all had a good Christmas.

Re: New to all of this...

Hi Flowerpot,

 

So sorry you've had to join us - and at this time of year too. Glad you've got a proactive BCN though.

 

I have more or less carried on working full time but I am lucky that my employers are flexible and I can work from home sometimes which helps me manage fatigue. In case you don't know, cancer is counted as a disability under the Equalities Act and employers have to make 'reasonable adjustments' to support you. There is more information about it here - http://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-emplo....

 

Hope you get some answers soon - we're here if you need us.

 

Best wishes,

 

Marion

Re: New to all of this...

Oh thanks ladies, you have given me hope tonight, I did speak with my BCN this afternoon, she is watching out for ct scan results, if they come through by Thursday she has got me a very late slot with consultant, if they don't come through I have to wait until 5th Jan.  My dog is such an energetic Jack Russell he needs exercise all the time.  Tell me ladies do you all manage to work and are your employers good and do they understand the need to take time off when you are not well.  My BCN told me that gp has written straight to oncology and excluded my breast care team, 

Re: New to all of this...

Hi Flowerpot, I will have had lung mets for 4 years this coming February. I am about to change treatment but have been largely stable for the last three years. Eat well and keep walking your dog - I have a Lhasa Apso called Molly who is the love of my life. Long walks by the sea with her really help. I hope this gives you some hope, you will feel better once a plan is in place xx

Re: New to all of this...

Hello flowerpot
Ps ...don't Google ....you will find more info here if you move around the threads from real ladies !!
Xxx

Re: New to all of this...

Hello Flowerpot12, This diagnosis is difficult to hear but at the holidays it really sucks!  You will feel more in control once you have a treatment in place. I also have lung mets! I've had them 11 years! Don't lose hope! FF

Re: New to all of this...

Hi all thanks for your support.  I am so cross how insensitive my gp was, is this the new way of telling people, over the phone when they are on their own, my husband broke his heart over this.  My BCN is back today, she is key to my diagnosis before Christmas, she arranged the ct scan at very short notice and hopefully she will get my consultant to look at it this week.  I feel so encouraged by how well you all manage your secondary.  I have felt for the last week it was a death sentence, I can't google stuff it frightens me, only yesterday speaking to the nurse did I realise it is manageable and as a result I feel somewhat calmer

big hugs and merry Christmas

xxxx

Re: New to all of this...

Hi, so sorry you received this news and especially in such an insensitive way. I am surprised that they would give a a dx like this without confirmation from a CT or scan. Must be agonising to wait so long over Christmas, have you asked your BCN if there's any chance of seeing someone this week? Especially if you are still experiencing symptoms.

I was dx just over a year ago after repeatedly asking for a scan and being told it was just the after effects of primary treatment. Confirmed in lungs and liver plus blood clots which was what was causing the breathlessness and pain (which was horrendous btw but resolved quickly once treated).

If the CT does confirm mets then please know there are lots of treatments available and while none are a "cure" it can be managed quite well these days. A year on, I feel so much better than last Christmas.

Sending you lots of hugs and best wishes

Paula

Re: New to all of this...

Hallo Flowerpot You must be feeling totally gutted. We don't always get given bad news in the most sensitive way and now you have a long wait for an appointment at a time when you feel you've got to appear happy and cheerful and you are still in a really dark place. Waiting can be the worst thing. On this site you will meet lots of women who have been where you are now but have learnt that life can and does go on. Life won't be the same but it carries on and we deal with it. You need have no doubts about saying how you are feeling here, people will recognise where you are and support you.

Lots of big hugs Bonariensis xxx

Re: New to all of this...

Hello flowerpot
Firstly welcome to our support group where u will find some lovely kind ladies with help and advice.
Well, you must feel you have been hit with a double decker bus with news like this and given so insensitively on the phone when you were least expecting it.
Your oncologist will put a treatment plan into place as soon as you get the appointment so it's going to be a waiting game over Xmas which is not the best timing!!
I think we all expect to have the treatment and then move on with our lives but in the real world sometimes this goes pear shape!
Sending you lots of Xmas hugs xxxx

New to all of this...

Hi Everyone,

 

Was looking for some support, this website seems to be a bit of a comfort blanket for me.  I spoke with one of the lovely nurses yesterday who suggested I chat with all of your lovely people.

 

I had a mastectomy and lumpectomy in August 2015, chemo fec-t and five weeks radiotherapy finishing in May 2016. I had 16 lymphs taken out and only two were infected.   I am taking anastrozole which makes me ache all over.  I am back at work and I caught a cold which lingered for 3 weeks, I wasn't well on it but carried on walking the dog and working, I rather lazily couldn't be bothered to go to the GP to get signed off.  I did however go and see my breast consultant and breast care nurse during this time with chest pain.  He gave me a good check over and said my radiotherapy was peaking and that was why I was having shooting pains.  I have been feeling breathless about a week ago, so I did go to the GP for a chest infection, she sent me for a walk in X-ray on the Friday, she rang me at work on Monday to tell me it has metastasized onto my lungs - my world has fallen to bits so soon after I completed the primary treatment.  How can GPs be so insensitive  to tell such devastating news whilst I'm at work.  I had a CT scan on Saturday morning but now have to wait until 5th Jan for my breast consultant to see me for the results.  It is the waiting ladies that I can't deal with, this time last year I was in the middle of chemo and not particularly well, this year my husband and I wanted to celebrate 12 months on with the family.  I am struggling to find positives and deal with anxiety, any help would be greatly appreciated.Woman Sad