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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

Thanks for the insurance info Sarah. I used MIA many years ago but they stopped insuring for USA and long haul (for secondary BC ladies) so it’s interesting that they are now offering it again, even at such a high premium. However, like you I’d rather have peace of mind and would never risk going to USA without it, especially with their high medical costs if you weren’t covered. I have travelled many times to Europe with only my EHIC card plus a travel insurance policy that excludes my pre existing condition although now use Eurotunnel which is very reasonable so have full cover. Like you I like to have some sunshine between the showers/clouds - very well put!

Nicky xx

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Re: Bone mets - please join in

Yes my coping mechanism is right let's get busy and book a holiday - got to have rays of sunshine in between the clouds😊. Good luck for your scan results and enjoy your hol distraction. I have really struggled with insurance due to having a pleural drain - one of the only companies that would insure me were MIA it cost £500 so not cheap but gave peace of mind I also used them to travel to USA xx
Community Champion

Re: Bone mets - please join in

You’re right FF, it has been very quiet on here, good to see you’ve woken us all up though 😊 I think you must have lol of our rain as the UK seems to have been very dry this whole summer, even areas which normally are known to be wet. Send it over, I’m sure you will want to get rid of it.

Bon, hope the anti sickness meds help and don’t add to our ever increasing chemo brain (I blame all of my many treatments for this’ll!) Sorry to bear though of the slight progression but it’s good that a hormone combo has kept you stable for so long. Take a deep breath and try to not think of what they suggest next (that almost sounded like the ‘take a deep breath, and hold, hold, hold, breath out’ instruction for our bloomin’ scans!) Enjoy you last 2 Go Campervanning treat and I hope the weather picks up for you, it will be a welcome distraction whatever the weather.

Sarah, wow, well done you leaving your dream trip to Thailand. It does help when you are faced with a new treatment to come into it refreshed and having been away from the whole hospital/oncology circus. Can I just ask who you used for travel insurance as it is so difficult to get companies to insure us mets ladiesfor far flung places.

Hope everyone else is doing OK and coping well with treatments, SEs and the general grind of appointments. I’m in between scan and results time but have crammed in a holiday in between so scanxiety doesn’t kick in too badly. Good luck anyone else with scans or results due.

Nicky x

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Re: Bone mets - please join in

Thanks Sarah and Ff. Forecast for today looked dreadful but has improved. Found out yesterday that i have progression but I did well to get 3 years out of exemestane. I will put it all on one side and deal with it when i get home.

love Bon x

Community Champion

Re: Bone mets - please join in

Sarahlew, I've been on E & E for 17 months. I'm on the full dose and its going OK. Fantastic that you got to fulfill your dream. We deserve some treats with what we are going through.

 

Bon, Enjoy your camping. I wish we had a camper van. 

 

FF

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Re: Bone mets - please join in

Hi all
Have had an anxious and frustrating few weeks waiting to hear if I was eligible for trial - I wasn't so another wait to start e/e and after lots of emails phone calls starting it Wednesday so hoping it has some effect as pleural fluid has increased a lot lately. On a happy note went to thailand a couple of weeks ago which was amazing and feel so happy and fortunate that I was able to fulfill that dream😊with my family.
Enjoy your trip bon and hope the rain stops soon ff!!! . Hope everyone else is OK and managing with their treatments xx
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Re: Bone mets - please join in

No results yet. Am on new anti nausea drug. Not doing a lot for my brain! Going camping to Cornwall on Wednesday. Husband decided to sell our campervan and had found a buyer but I said I wanted one last trip this year so I have got to go! Think I'll turn off my phone. Might be no signal anyway. There are lots of places where I live (S Devon) with none.
Love to all Bon xx
Community Champion

Re: Bone mets - please join in

Quiet on here! Hope everyone is off having fun. Only way to have fun here is to be a duck and get your waddle on! Rain, rain, and more rain! This is the most rain I've ever seen in a summer. Good thing I like my colorful polka dot umbrella. 

 

Hugs! Take care! FF

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Re: Bone mets - please join in

Hi Kate21 & bon.....

 

How are u? Take care.....

 

silver...x

Member

Re: Bone mets - please join in

I don't know that drug. Mine are Denosumab injections & Letrozole. There appear to be such a variety of onco. drugs. Bestest luck with your bone scan. How long do u have to wait for results. I'm in a whole lotta pain.....awaiting pain specialist appt....xx

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Re: Bone mets - please join in

I have been on exemestane for nearly 3 years. Had primary in 2009. Bone scan on Thursday. Last one was 16 months ago. Have been feeling a bit unwell this month. Fingers crossed. x
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Re: Bone mets - please join in

Hi bon,

 

How long have u notched up? And where are u in your t'ment regime?? xx

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Re: Bone mets - please join in

Hi bon,

 

As a relative newbie, I'm learning loads on this forum. Can u elaborate about the consultant to GP ball passing...please..xx

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Re: Bone mets - please join in

Dear Silver

Buck passing all round then. Sorry I was telling you stuff you already knew. I don't have any personal experience of our hospice yet but I am surprised at your hospice's response to you.

 

This ball game berween consultants and GPs is not uncommon.

 

Bon x

Community Champion

Re: Bone mets - please join in

Ok silver...that’s pretty strange as my hospice outreach team have said they would be able to help if need be..the onc prescribed something, but I need to try it.the team came out to my home to assess me and offered to look at my drugs...they have doctors employed by the hospice, who. I can chat privately / independently if I’m concerned about an aspect of treatment and they offer Reikhi and other therapies at the hospice if you’d like them.
The team visit during a 24 hour service.
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Re: Bone mets - please join in

dear bon,

 

Many thx for your ever so prompt reply. I undestand now. My oncologist just keeps telling me to contact the hospice for pain relief. So what has just happened to me is unexplainable!!

 

The Director of my hospice wrote me an email saying she is not an expert in chronic pain and discharged me to my G.P.

 

I'm gobsmacked & I'm never ever one to complain...it appears I'm not terminal enough. I do have a multifactorial presentation...high b.p., diabetes. inflammatory arthritis and Max of course.....xx

 

Member

Re: Bone mets - please join in

Hi Silver

You probably have a hospice local to you. Most people think of hospices as places where you go to die but hospices do far more work in their communities supporting people to live as long and as well as possible. My local hospice requires a referral from a GP or consultant. They are good at things like pain relief. Maybe you can ask your GP about your local hospice.

I'm sorry your pain is bad and hopeyou can find some help

Hugs Bon xx 

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Re: Bone mets - please join in

Can u please elaborate...who are the hospital outreach team??

Community Champion

Re: Bone mets - please join in

Thank you Silver,,,

 

 

i too am in pain,  tummy and arms etc....I found the hospice outreach team helpful..,think they re better t pain control, so will be askiing them

 

 MOijan

Member

Re: Bone mets - please join in

@ moijan,

 

As i promised....over a week of 900mgs Gabapentin a day on top of Butec, Morphine sulphate....absolutely no pain relief.....I'm a bit concerned...seeing G.P. 2moro but she's an efficient pain-belittler so i'm not holding my breath.....I hate 'Max'!!!