Hi again

Hi Ruth

I will - letter done after several re-writes as I wanted to make my point as politely and restrained as I could as she has been supportive previously - even feeling anything but,,, anyway now sent so will see what comes back. x

Hi all

Third time lucky my post keeps disappearing...

Had response from oncologist - apparently lung MDT agree with her watch and wait policy.  No other explanation as to why.   I have spoken to a medic I know (not in oncology) who said NHS are being pressed to deal with backlog "not being harsh decisions have to be made as limited resources and it may be that there the resources are being used to treat patients at an earlier stage who still have a chance of cure...." Not what I wanted to hear.

I have now received a new appointment for January 2022 it seems I was moved to the other clinic in error - still no idea what the purpose of that clinic is - cancer related but is off-site at the local maternity hospital (think that ship sailed a long time ago)  - but on the positive side have finally worked out the emoji thing!!

So going to try and be positive for next 3 months, carry on researching and keep fingers crossed that specks still don't change and the two that are growing if they carry on then they do so very slowly ....

Must admit night time me is having a hard time at the moment.  No problem getting to sleep but I have been waking up about 4am and struggling to get back to sleep.

Love to all x

Hi Deb1E, I have just replied to this post but couldn't get access to page 3,  it would not pass page 2, so when I replied I hadn't read this page. If it helps any, my oncologist and I decided in Sept 2016 after I stopped the drug to watch and wait. I was getting 3 monthly scans, bloods etc up to Sept 2020 when it was agreed they would now be done every 6 months.       I have to say it was a bit scary for a bit because a lot can happen in 3 months but I really feel fine about it now. I'm a believer of "what's for you, won't go past you" or what will be will be. So as you say Seize the Day and don't worry about things you have no control over! Good luck for January, please let us know how you get on!

It is hard to watch and wait and 3 months can seem a long time . But it can also give you a break from the worrying and let you have a nice a Christmas .

I know it can be hard to get back to sleep.

I sometimes distract my mind by taking a number such as 8 or 7 from 100 and go all the way down to zero and then add it to the number  nearest to nought nought on the way back to 100 and see if I got it right 

hope that makes sense x

Hi Deb1E, I've the same sleep pattern as you at the moment. Go off Ok, then wake up, usually in the small hours. If I ever see the cracks through the blinds indicating dawn then I count it as a result, but still feel like a limp rag when I do eventually get up. A friend with a similar problem always says he gets up and makes a cuppa - even watches a bit of TV with the sound low - then goes back and nearly always gets off to sleep again. Distraction. But that wouldn't work where we live: no instant heat to keep warm with - so having a cuppa in a cold house and getting chilled doesn't appeal.  And like you, I find extending the interval between scans unsettling - my oncologist is making noises to do this so it's an idea that takes some getting used to.  Take care.  Rainie x

Hi Deb1E

sorry to be joining this thread late but Ive finally learned tobe a better advocate for myself. The consultant will follow the mdt but theres no issue in seeking a second opinion at that point. For the big stuff Ihave two on the go then decide on the basis its my life. Initially this was a bit rocky but now myconsultant understands why Idothis and is relaxed. For the most part I go with him as both agreee. Since I learned 3rd line is as much a financial as opposed to a medical decision Ill keep doing this. Wishing you luck and peace

sylvia

Hi Annette, sorry for delay in response.  I am trying to get my head round it.  If I was NED or stable then I would feel a bit more relaxed about it all.  I am worried about the only 2 that are growing and can't get a straight answer why they won't ablate just those 2 given the disparity in size and growth compared to the others which are still specks and stable for the last 3 scans.  But you are right nothing to do until January and I can raise it again if still only 2 growing and maybe ask directly why not doing it. On a totally unrelated topic I can't believe it is November already and  I have done nothing towards Xmas I've usually made my cake and bought presents by now  - where has this year gone?  x

Hi Rainieday.  On the nights I wake up at silly o'clock (which is much more often than I sleep through to a sensible time) I have started getting up whatever the time, putting the washing on or whatever and watching tv for a bit with a hot drink.  I usually end up falling asleep on the sofa and never go back to bed...  I'm pleased to hear I am not the only one who finds it unsettling by the thought of longer gaps between scans.  I think I would be happier if everything was stable..  Look after yourself. x    

Hi. It is hard to watch and wait and I think that's part of my problems with sleeping, daytime me is getting by as there is always something to do but night time me has too much time to brood and over think things  I have been giving in and getting up.  I did try a-z - you know where you pick a subject say, cars or fruit and then go through the alphabet thinking of a car or fruit etc for each letter but kept getting stuck and giving up.  It's not as easy as it sounds.  I will try your suggestion although maths is not my best subject.... I hope you are ok. xx

Hi My consultant has been really supportive previously and I like her so feel a bit guilty about asking for a second opinion but for some reason it feels like there has been a sea change since July.  I understand that with 2nd and 3rd line treatments finance plays a bigger part in decisions re provision of treatment v benefits but If no change in January I will ask for a second opinion.  It's chilly but dry and sunny here on the south coast today.  Hope the weather is good wherever you are. x