worrying about secondaries, again!

Hi all

I am posting this here as well as on the general page.

Here I am, coughing away after a rough night with very little sleep, following on from many nights of very broken sleep. Being woken by the hot flushes which seem to be building up again now the chemo is wearing off.

So last night my mind went into overdrive thinking about all my aches and pains and wondering should I be telling a professional or am I being paranoid? I suffer from long term back ache in my upper back but this week it has appeared in my lower back. My belly is very distended, I’m thinking liver, or is it constipation? I go every day but am I doing enough? (lovely subject!).

I have strange pains in my head, always in the same place but they come and go, not like a normal headache (had this for a few wks now). Then there’s the cough, I’m thinking lungs.

I saw a doctor (not my sugeon) in outpatients for my 3 mth check, she barely touched my stomach so could she have missed anything, I’m thinking liver mets.

I suppose the point of this thread is how do we live with this dark shaddow hanging over us for the rest of our lives? And should I be asking for further tests? Had a bone scan 3 mths ago, all clear, just normal wear and tear seen. But on here I see that an MRI is more reliable and why has my liver never been scanned? I had lymph node involvement.

Any advice would be welcome. I’m sailing this wk end (my trip paid for by a charity) then off to Turkey monday (using the last of the savings!) for some sun so if I don’t respond, it’s coz I’m not here!

Irene

Hi Irene, Oh how I can identify with you! I’m just the same, but without the cough! Keep getting strange pains in my head, and over the last few days stomach pains - so I’m thinking brain mets and maybe liver mets. Also had another bone scan last Friday - previous one was 3 months ago, and carried out as a result of rib pain - but they thought it could have been brought on by my doing a lot of heavy lifting (have learnt my lesson now!). Go for 6-monthly check up on Thursday and results of latest bone scan, but I’m convinced IT has spread!

I don’t think we’ll ever get over the worry of IT recurring, and I have accepted that the natural pattern of my life from now on will be occasional scans and tests. I think it’ll get easier though, in the lucky event that we don’t get a recurrence - what I mean is the longer we go NED the less we will worry.

Can’t offer any advice other than make the most of every day - I do now. I cram as much as I can into each day - that way I don’t get much time to dwell on everything! I say to myself that my worrying won’t change anything either - what will be will be!

Do hope you’ve had a good holiday, and come back feeling much better and less worried. Sending you lots of love and hugs, and positive thoughts, Jean xx

There was an interesting article in yesterday’s Telegraph about this constant living in fear business. You might be able to see it in their online version.

Reg

Hi Irene

I think you put into words what all of us are scared of, i always say i feel i have a weighted sword hanging over my head ready to drop at any moment. Everyone worries it is so natural, thank God for this site where we can share it. I remember thinking when i was first diagnosed that as much as i am scared of dying I do not want to be afraid to live! I have visited the secondary link a lot these past few weeks and have followed a lot of the threads on it, for a long time i am afraid to say i was too scared to but i have found that instead of being frightened i have been inspired and also encouraged by the fantastic ladies who are truely living their lives to the full and i know that if the worst does happen they will be their for me helping me to cope.

Yes Irene we are are scared but like Jean says life is for living and we must try and live life to the best we can, i have made up with people i had fallen out with, contacted people i had not seen for ages and found out just how much i am loved also.

Hope you had a wonderful holiday and come back refreshed and re-energised.

Suzzanne

Whenever I’ve had concerns about the BC returning, I’ve been to see my GP and he has examined me and sometimes sent me for tests or referred me to the onc. Neither acted like I was being silly, and in general they all say that they would prefer me to come to them if I have any concerns, rather than waiting and worrying. Even if it’s not the cancer returning it still might be something that should be treated.
So my experience leads me to recommend going to your GP and getting him/her to refer you back to the onc. It’s what they are there for and it’s the only way to be sure and stop worrying.
Love, Lynn