Hello

Hi I'm glad you have had lots of replys and good advice. I too have grade 3 stage 4 breast cancer with spread to bone mainly spine, liver, and more recently lung. But like many others here on this sight we are out living the sell by date. 

My care became palliative and "terminal" when it went to the liver and about 18 months ago I was denied breast surgery for another primary cancer because I was not supposed to live 3 months. However the reason I have just seen your post is that I underwent surgery recently and am now recovering. 

It is important to get your house in order but also important to remember to make the most of the time you have. 

It does get quite complicated at times especially making plans or trying to avoid making plans. You will probably  find it difficult to get travel insurance and you will not know when you will have good days or bad days. Long term plans you had may not be feasible anymore. You will find yourself not doing things then wishing you had. At times you focus on the one that will survive and give up your own dreams. Things can get so annoying and frustrating and then at times you feel nothing like what does it matter anyway, and what use am I. But all this is normal and tomorrow is another day so long as we are here we can make choices, change our minds about things as we wish, accept our limitations or not. Some days you will have great times and even forget you have cancer. 

When I did my funeral plan and wrote letters to leave for my husband, children and grand children it was so emotional and yet everyday life just went on. I wrote those letters about 2 years ago and they are there unopened but I am surprised that they are still what I want them to know so I am glad they are done and I can get on focusing my energy on fighting this cancer.

Take care and I wish you more good days than bad. 

Hello. It’s hard to get my head round. At the moment she said the spread is only slight, whatever that means in their terms.  It’s hard as you say making plans.  The only plan we have at the moment is to be away for Christmas down south in Oxfordshire as my husband is expecting his first grandchild.  We hoped to go abroad in February but date not book anything. When I got diagnosed we bought a static caravan over in the Lakes where we can escape to and my husband can work from. He works mostly from home anyway so it’s ideal.   I have travelled a lot over the last years, all over Europe. Australia and America for which I’m grateful.  It’s strange how I used to think we had better travel now while we can.  My will is in order and I have chosen one reading. I think I will write some letters. It’s all so damn hard. Wishing you well x

Dear Ellie

It is so hard isn't it? It's important that you have things to look forward to and the caravan is a great idea. We should all see to our affairs, regardless of our health situation, and it leaves you time to enjoy life. 

On a very practical note, I was prescribed some diazepam as I couldn't stop shaking when first diagnosed - I rarely took them but they did relax me when most needed.

Take care, xxxx

Hi Ellieellie, Just wanted to say welcome to the group, as you can see, we are a friendly bunch although we are all on this roller coaster! I did notice everyone saying about sorting out funeral arrangements etc but the thing that is very important for us is to have a Power of Attorney in place, so that when the time comes that we may not be able to let others know what we want, there is someone (or more than one person) who has POA and know our wishes! I sorted the practical things out quite quickly after diagnosis, which was in 2013 as I didn't expect to still be here in 2014 but here I still am as I had a great response to the Trial Target drug. It's not been an easy road but I'm still on it. Regarding making plans, we have already booked our holiday for February and have flights and hotel booked. However, now we pay a bit more for a booking that can be cancelled just days before, they call it a flexible booking, there's a nominal deposit of £5 pp then you pay the rest at the end of your holiday direct to the hotel! It's a great idea and gives peace of mind! Never say never!

This year we did think we were going to have to cancel our three week holiday in Feb/Mar as I needed spinal surgery but thankfully, we managed to work around it! Live life and enjoy every day. I have to pace myself as I find if I do too much one day, I have to rest the following day but it's better than not doing anything at all and feeling sorry for myself! Oh and we also have booked to go to Salou for two weeks from 27 September which will take in our 48th wedding anniversary!

Annette you do very well getting travel insurance I can never get it or once managed a quote over £2000 for a four day trip. 

I have risked it a few times and gone without the medical insurance and gone to places I knew there were lots of flights back from but my son in laws mother had a terrible time this year when she got to the airport to come home from Italy and collapsed just before take off. Her and her husband had to stay another 2 weeks while she underwent surgery and got to a stage where she could travel. The bill for just the car left at the airport was over £2000 then there was hotel, clothing etc as their bags were on the plane not to mention medical bills that weren't covered by the health card. It was a hell of a bill. 

My friends father took ill on a plane and it had to be brought down now that hit the nationals as it would have cost him everything to pay that bill so he had to fight it. 

Not very good things to hear I know but it can certainly put a damper on getting out there and doing what you want. 

However once I am back on my meds and stable again I will be trying for travel insurance again as I would like to take my grand children on their first holiday abroad next year. It annoys that I am classed as a high risk even though I am scanned and medically checked up to the hilt so know if I am fit to travel, the person sitting next to me is more likely to be that ticking time bomb or take risks that I would not. It's unfortunately a battle we are unlikely to win but at least there are nice places here in Britain to go and if you are lucky you may get sunshine. 

I have had problems with medical insurance ,but just found forces pension society 02078209988,if an immediate relative was or is in the forces then as long as oncologist says you're fit to travel and not terminal they will cover you 

had a really reasonable quote from them ,it is annual and low excess 

worth a look 

i am too scared to go without insurance

good luck

xxxxx

That is the thing I find difficult they always ask if you have had a terminal diagnosis. Now I have avoided getting a DS1500 (but could get one)  as that I take it is evidence you are terminal. My paperwork says I am on palative care and when I did the insurance medical screening they said that meant my cancer would be classed as terminal. Any ideas how to get around this? 

I am sure my consultant would be happy to say I am fit to travel but if anything did go wrong would I be told I was not covered because I am classed as terminally ill. 

Absolute pain. The problem is 99% you probably won't need it but if you ever did, being told they would not pay out would be terrible. 

Morning all, we're in the middle of this minefield at the moment.

My husband has a friend who's partner unexpectedly died during their holiday abroad last year. (unrelated to cancer) The cost of repatriation was absolutely staggering, and caused the family a great deal of distress.

My Oncologist said broadly speaking you can be classed as terminal if you've been diagnosed with an illness you're likely to die from.

I'm also on palliative care, and have been told I wont be able to get cover if my prognosis is less than 6 months from the date of our return. That's not a conversation I wanted to have.

A scan on 5th Aug showed that one of my tumours has grown, and I've had a recent hospital admission, but my case was discussed by the MDT last week, and for now I'm considered 'stable' again, and am staying on oral chemo. 

I have to have more scans in the next few weeks.

My Oncologist said they from their point of view a patient is terminal whe the cancer is likely to cause death within weeks or a few months, as they're able to keep many of us stable for long periods on palliative care.

Good luck! xx

Thanks, this is better than what I am getting from insurers which is just a no. But not sure how they would work out if you would be alive 6 months after return. Is this an indication that they will wait 6 months before paying out or that if you die within 6 months someone has to pay it back?

The odd situations we have to get involved in. I am not planning a trip just now as may have RT coming up again but I will do some ringing around again in the new year after next scan results as "awaiting results" seems to be another problem for them. 

Good luck everyone I know many have important trips ahead.