Bad news today

[badnews943]

Had a nightmare today. Received news that I have type 3 breast cancer which may be in my lungs. I'm having a lung biopsy next week but the Dr seemed pretty certain.

I'm not sure what to think. Any advice or support?

Yes my nurse was unhelpul and also knew nothing about my subtype of cancer. The MacMillian kiosk never had anyone around just a load of paper leaflets. That was it, no support. I was bald from chemo and got no support, no wig no advice, no help no nothing.

It upsets me when people say how amazing the NHS support was in cancer because I got ZERO support from my hospital.

I will never donate to MacMillan. I would choose Penny Brohn and Maggies instead who were wonderful, but I didn't find them till much later on.

Good you've found some energy xxx

Good about Diabetes UK too!!

Keep us updated x

@MrsKypp 💐 I'm sorry to hear about your complete lack of support. It's very sad that you felt so alone and dismissed, almost dehumanising. It's at times like this when you are depending so much on people doing their jobs and when they don't, it almost feels personal.

My hospital is a mixture of competent and awful. The Macmillan centre has actually been very helpful. My nurse is dismissive at best. I contacted oncology today because of pain and changes and no one got back in contact with me.

I still have energy! You've no idea how good it feels. I've been dragging myself around and it's not such an effort to move. The breathlessness is still bad though.

I've had a busy day phoning people and have a list of specialist hospitals that I'm going to ask my Dr, when she gets back, to refer me to.

Hello OP. It's great that you have an energy boost. I hope it's continuing!

I just wanted to say thank you to who ever suggested PALS - I think it might have been you. They have sorted one of those Byzantine circular NHS bureacracy problems in less than 24 hours. And I now have an out patient appointment tomorrow due to a cancellation. Amazing.

I think of you often and you have really inspired me to get cracking on sorting things out in the house. ( or rather arranging for others to do it.)

All the best OP

Thanks and I'm delighted you managed to sort out your appointment. I found PALS really helpful once I knew what they did.

Sorting out the house will make you feel so much better. There's a certain peace of mind when your environment is organised. I have a cleaner now who helps with washing and putting away shopping. I'm over the moon as I was really struggling. Perhaps you can organise a needs assessment if you're finding it difficult to manage.

I still have energy! I spoke to the Dr today and she said it should be the treatment working but I start some medication tomorrow and the side effects look like they can be bad. Let's hope they don't effect me too badly.

I hope your appointment goes well tomorrow.

I've been really busy as there were developments in the area I have cancer (pain in the lymphs, swelling, numbness and a new mass) and I've been trying to be seen. I eventually had an ultrasound booked (tomorrow) but no one was taking me seriously.

When I finally saw a Dr, she said even if it's progressed, we wouldn't change your treatment. I'm really fed up with my hospital and am thinking of asking them to move my treatment to a different hospital.

I have been chasing up respiratory as I need to get my breathlessness diagnosed in order to start another medication. I've been vomiting as well which the Dr thinks could be gastritis so I need to get that investigated as well.🙄

My home help has been awful, I'm looking into changing agencies if possible. Good news is I still have energy. I've only been on my Letrozole since 21st but no side effects yet. I have felt hot now and again which could be hot flashes.

Name changed as I forgot log in details.

I'm sorry to hear you are also on this journey and hope you don’t mind me jumping in. I have endometrial cancer, which has now spread to my lymph nodes and spine. I won’t post all my details as this is your thread, but I have also had breathlessness with none of the tests and scans really giving any answers as to the cause.

What has been useful that you don’t mention having received is physiotherapy advice. My gynae-oncologist referred me, but I had to ask her to do so. I was seen by a specialist cancer physiotherapist, who gave me practical advice for managing the breathlessness episodes breathing techniques and positioning - which help with the symptoms and make me feel more in control, as the episodes are scary, especially at first.

Thanks and sorry to hear of your diagnosis. I was given a physio appointment but I missed it because I wasn't feeling well. I have rebooked so let's see if that's helpful. I'm glad yours was useful.

It's good to see you back OP. Glad to hear the energy is up still, and sorry about the physio appointment. I hope the replacement one is helpful.

How are you doing OP

How are you getting on now, @Badnews935 @badnews943 ?

I hope the vomiting and breathing have improved since you last posted. x

Sorry to hear of the frustrating healthcare you’ve been receiving. How are you doing now?