Hi again

Yes it was good to go out again and it was warm enough to sit out with coats on.

a bit difficult whe people ask about my health my husband likes to speak for me in detail about the progression !

Hi Deb1E

Your story is a tough read, not just you but family members also. Even though I was diagnosed in March 2015 if I'm talking to someone about my cancer and or my life now in a wheelchair, I get a little emotional but when writing, I don't get emotional. 

I'll be following your progress Deb and I hope you prove them all wrong. 

Take care and stay safe Deb

Tvman xx

Hi TV Man - I certainly intend to try.  I get where you are coming from with the emotions so not told a lot of people I am ill (although the wig might have given it away!! - would use a smiley emoji today if we had them on the site) and outside the forum certainly not told many how things really are, will have to at some point but at least for now those that don't know treat me as they always have which makes me feel normal (or as normal as I was before this all started anyway).

Have a good day xx

Hi Deb1E

Sometimes if you want to insert an emoji you might be lucky with a punt at a standard one on your keypad. Leave a space and give it a try. You may be lucky or you may be faced with 3 question marks. Or, which is very common, you get an emoji inserted and another one six or so words previously that can be removed by clicking on it. You'll probably then be faced with a word "remove" which will remove the unwanted emoji when you click on the word. 

Right, as a trial I'm going to attempt to insert an emoji of hysterical laughter. So space . It worked, sort of. Ok, try again for a happy face. Space Way hay, worked again! Ok, how about thumbs up. Space  I'm on a roll here 

Now to insert a slight smile which is on the site but you need to go back to the time of 4+ years ago. Insert a colon and then a close bracket. When you insert a colon you have a few options that aren't too relevant then when you insert a close bracket sign you have only one option of slight smile. Here we go  There. That's guaranteed to work every time. 

Now however, we need to post the message, and cross our fingers 

Take care and stay safe Deb1E

Tvman xx

Hi all again, again,

Not been on the site for a few months - the consultant advised me to try and step back from my cancer for the summer, stop researching, googling, forum etc and actually go out to meet friends and do things, so I ate too much, went swimming, walking etc and confess that I was feeling quite optimistic (not stupid enough to think I will make old bones) but relaxed thinking that consultant seemed quite happy with the way things were going and there was a plan in place to push the boundaries as far as we could.

Fast forward to scan in September - no sign of original tumour ("tick") liver is clear and ok ("tick"), "specks" seen in January have not changed in any way ("tick") but the two that were growing are still growing but at a slower rate.  Good news I thought or at least good in the context of my new normal.  

As the "specks" have not done anything at all for 9 months I asked about ablation of the 2 that are growing.  I didn't see consultant but registrar this time as she was on holiday.  He told me ablation was a "painful and unpleasant experience not guaranteed success can cause more problems and would not recommend it".  Yet I have a friend who has the same cancer and mets but at a different hospital (Addenbrookes) and has had 5+ tumours ablated in her lungs to date, they are considering 2 more and her consultant has told her that they can carry out the treatment multiple times if necessary.  

The Registrar also said that the aim of any treatment would be to alleviate symptoms/make me more comfortable not slowing things down/prolong life - reactive not proactive - he also wanted me to agree to extend the time between scans but agreed to leave the next one at 3 months after I said not at this time although I think I was a bit more blunt that that as i was feeling quite down by then.

So at my last scan (and confirmed in my clinic letter) I was told I was still incurable but treatable and there were options for chemo and immunotherapy available to me to slow/shrink tumours but consultant didn't want to start treatment too early as very small and the longer gap between treatment the better the chance of working hence the wait and see. Now it all seems to have changed.

It doesn't help that hospital are still only allowing patients through the door unless you have a disability or are a minor so no back up in case I missed or misunderstand something.

Got my next appointment for January 2022 this morning but for a different clinic on a different day, different hospital (same Consultant/Trust) and it still says to "wear a mask and come alone" so not changing policy any time soon. 

I'm hoping that somebody a bit more objective than I am might see something I haven't.  Any ideas?

Hi Deb1e. I'm no expert on your cancer, but I think that if I were in your shoes I would be looking at a second opinion from Addenbrookes. Or somewhere. Rainie x

Hi Rainieday,  Much as I like my consultant I felt after my appointment I had been moved into another box.  I know they are stretched trying to catch up w all the cases that were missed during covid..  My friend has given me the name of her oncologist and interventional radiologist at Addenbrookes.so I can make a suggestion if asked.  I don't want to wait until my January appointment to ask so have started drafting a letter, if its in writing maybe less chance of confusion..  I will let you know how it works out. Thank you x

Your cancer sounds like mine. I have acc. I have had lung mets since 2010.

inwas told ablation was not a good idea and they suggested chemo. I read a lot and researched a lot and it helps me to know as much as possible. I had ablation 10 times in the end and it does destroy the mets . I believe it has given me longer to live. My mets have now grown and they are too big now for ablation so now I accept they all treatment is for quality of life. I now have base of skull mets and was offered chemo which I refused and then They offered me radiotherapy  which I am starting next week.

My advice is you do not have to accept what they offer you. They usually offer the easiest and cheaper treatment for them.

Atthe beginning when mine were slow growing I had 6 monthlyCT scans which I had to ask for as they were not keen to do them. It pays to ask. Sounds like you are good are good at standing up for yourself x

Hi Ruth

Thank you for this.  I have spoken to the clinic nurse now and she has given me an email address for the consultant.  I am hoping that she will reply in writing - hopefully less opportunity for misunderstanding.  It is difficult in appointments to get everything in order and remember exactly what was said especially when you are on your own.  I believe that ablating the two that are growing will give me more time and quality time especially as the "specks" have not changed in 9 months. 

I was pretty "innocent" when this started and it has cost me as what happened in the early days has caused or at least contributed to the spread.  Now I google and research everything all round the world. 

I will let you know what happens.  I have spent my working life standing up for people's rights even when they didn't deserve it but not so good at doing it for me.

Have a good day x

Yes. I have learnt to stand up for myself but it is hard when you are upset inside and trying not to show it.

my oncologist gave me his e mail address at the beginning he doesn’t do it for everyone but it has been so useful. He always replies and I don’t abuse it I only e mail when I have a problem. It was only because I refused the chemo he offered me that I was then offered the radiotherapy which I think is a better option for my quality of life actually a tacking the tumour where it is rather than poisoning my whole body and my cancer is slow growing so doesn’t react well to chemo.

keep-up the research x