Bizarre happenings, is it just me

That is really shocking, Maz59. As a fairly "recent" member of this club that no-one wants to be in, I have yet to have any such treatment as you have done, and would certainly create a storm if it did happen. I am sure that most oncologists are not like this (or would hope so), although my initial meeting with the Respiratory Consultant was pretty brutal. He just said that the cancer was inoperable and terminal, and he would be referring my case to the MDT.

I hope you get the best treatment possible to keep you going, with a decent quality of life

John 

Hi ,

I don't know about bizarre but the words arrogant and incompetent are the ones that spring to my mind.  I would want to go in guns blazing at my next meeting with them as I know that it will not change anything but it will at least let them know how you feel about the way that you have been, and are still being treated.  If I didn't think I could remember it all I would write it down and maybe even post it to them in advance.

My oncologist is aware that I always request copies of any reports on tests or scans and I don't know if it has any bearing on it but I have always received decent feedback from my oncologist.  The main issue I have had was a lack of coordination between the scans, the reports and my oncology appointments but I complained via PALS and hopefully that has resolved matters.  I informed my oncologist and nurse in advance that I was going to contact PALS so they were aware of my concerns.

When I was first advised that my cancer had returned and spread, 18 months after an operation to remove it, I was advised by my urologist that it was terminal.  It was about a couple of years later that my oncologist became aware that I had been told that and he was really upset at the urologist and advised me that I was incurable but only became terminal once I had run out of treatment options and the cancer progressed.  Cancer treatments had moved on so much that the urologist was totally out of date, it sounds like your surgeon might have been in a similar situation.  I know that they are busy but you would think that they would listen to what others actually said at the MDT meetings.

I think we all wonder about what if I had done …? but the important thing to focus on is not being in that situation again.  I am much less concerned about being seen as stupid or impolite than I used to be if it gives me a better chance of living a better life for longer.   If I were you I would be starting to compile my list of questions for the next appointment and making sure that they answer them or have a plan and timescale to do so.

I hope that when you see them next they have some good options available for you.  In the meantime I hope that you are able to relax and enjoy some of the good weather that we are supposed to be looking forward to and do something nice for yourself and your husband.

Wishing you all the best,

love and hugs,

Gragon xx

Hi

That is a pretty shocking state of affairs. My healthcare is split over two sites - the central London teaching hospital for the cancer and my local hospital for other stuff. I take it as read that I need to chase and cajole the local hospital as “lost to follow up” is their mantra. But I do at least have faith in the team at the teaching hospital and in particular my oncologist. I can’t imagine having an oncologist who appears so uninformed as yours. 

For what it’s worth, I think CT scans are limited in what they can tell you. I have had nodes reported as malignant only to have that view rescinded nine months later when they didn’t change and then oops, maybe yes again as they’ve grown. It’s confusing and upsetting trying to understand this ambiguity as I started out thinking CT scans gave me some firm answers in an uncertain world. I’ve learned that they don’t. They are just part of the overall picture and how I’m feeling is a really important part of that. 

I am at the same stage as you as regards surgery - it is not an option as it’s too widespread. I’ve had my lifetime limit of radiotherapy (after a certain level, the risks start to outweigh the benefits) and the cancer is resistant to all routine chemo so I’m in trials territory. For me, “good news” is keeping things stable Mable. 

The ward sister at the trials unit told me quite wisely “you need to be the project manager of your own health”. It’s a lesson that is hard learned. Try not to beat yourself up with what’s in the past. Do what you need to do to let your team know you’re unhappy. Keep asking questions. 

Lots of love, big hug and a virtual custard cream dear Maz 

xxx

Thanks gang for being there I have not mentioned anything to my family yet as I was so cross and needed to get my head round things but equally so I needed to tell someone. Once again this site has come up trump's. 

I have had time to think and your replies have helped greatly I don't feel so ungrateful or unreasonable now. 

The clinic nurse and secretary always praise me for giving the kick up the butt the doctors need but sometimes you are beyond words. I really do feel for those who just can't fight their corner as the more I see and hear the more I know it is needed. 

Having sat and thought rationally the first cancers are now all stable , breast 1, bone and liver, on just the lowest dose of meds possible. The newer cancer in breast 2, which I strongly believe should have been removed when it first appeared, is more aggressive and spreading.  The oncologist who is naff but knows his meds thinks he has a solution for this but he needs the surgeon on side and some funding. 

I know there is never enough funding to go round but maybe as I have not had much in the way of treatment as I am hyper susceptible to drugs and need one third what others need l might get some funding. I am just worried that he will not make a good case or in fact forget to make it at all. 

I do feel bad wanting funding but my cancer is hereditary and if they can get it right for me hopefully my daughter and my nieces will benefit not to mention others.

I also hear what you said about the lung Mets and if that is the case everything could get back under control. 

I am going to have to leave it with them now and pray as the MDT is today and even if I emailed no one will even open it till next week. 

If I have to just keep going as I am I will at least I do have a loving family and good friends. Today I am counting my blessings and moving on. 

I met a friend last night and she asked what I got for my 60th I refrained from saying secondaries in the lungs but I thought it and it did not seem such a big deal. 

Thank you thank you 

Good morning

this site is brilliant for getting your thoughts in order, I think. I’m glad you found the replies helpful and you sound as though you’re on a much more even keel today. 

I tend to think of difficult meetings with oncologists (for whatever reason that difficult might be) as like shaking a snow globe. It takes time for the snow to fall and settle. 

Lots of love xx

Thanks for listening folks. 

I am able to talk about things now and I had a good chat with my daughter yesterday. As she said if it wasn't real it would make a good comedy sketch. 

The oncologist was very surprised by my cough as you do not get a cough with lung Mets apparently but breast pain is quite common with breast tumours. The surgeon pointed out the persistent cough is due to the lung Mets but was surprised by the breast pain as breast cancer is never painful. 

Putting this together with the fact that bone and liver Mets are not painful either I do not know why we are ill at all with cancer. 

I just wonder where they get there facts from and they obviously never talk to each other. 

Hope people are managing to enjoy some of the recent good weather. 

Thanks for the Giggle Maz 59.  As I often wonder how they decide what causes and doesn’t cause pain.  I have been complaining of bone pain since before my diagnosis of Mantle Cell. Apparently even though it’s in my bone marrow I shouldn’t be having bone pain but they have no other explanation! I shouldn’t need neurotics to control my pain in my pelvic region that is always in pain from enlarged nodes. But I’m hat shouldn’t cause me pain either.  Um okay guess I’m fine than! 

My brain just exploded

I hope your trails go well, I am not allowed on trails as my reactions to any meds are not normal so apparently I would skew results. Which is fair enough I don't want to spoil anything for others. 

Just when you need people the most my sister who can be very judgemental and pretty unpredictable but never the less probably my closest friend has decided not to speak to me. Last time it lasted for about 18 months over something that I was supposed to have said but hadn't. She then must have found out the truth and was back again no apology but the closeness was back. This time I am worried I might not have 18 months to wait but know she will not be pushed. My other sister is probably the culprit although she will not have intended any harm. Families can be very complicated things, I would rather things are dealt with when they arise without all the huffing and cloak and dagger at the best of times but now I think it is just so senseless to waste time. 

It is sadly true however that you can only be responsible for your own feelings and reactions you cannot change others. 

On a bright note I met with some of my ex workmates last night and we had a lovely meal and chat. I felt really happy and full of life. They even invited me to some training event today which was really good of them. I did not make it as I was exhausted this morning and was worried I might be rubbing salt into open wounds as I so much want to be back with them and it is not going to happen. I am seeing them for a leaving do soon though which I am looking forward to. 

This incurable / terminal thing feels sometimes like you are living in a half life not quite belonging anywhere. However I am very grateful for the good times and will try not to dwell on the hurts along the way. 

Love to you all 

Hi

I am really sorry to hear about your sister. You are a very forgiving person to be able to feel close to your sister after 18 months of not talking to you and then no apology. I don’t think I could pull that off. 

Your ex work mates sound a lovely bunch. I get what you mean not belonging anywhere. Except perhaps here? And who really wants to be a member of this exclusive club? I’m tempted to misquote Groucho Marx. I’m joking.  I’m glad to have found this club and I am glad you’ve found it too  

The half life bit feels true too. I’m just coming out of a long period of treatment - ten of the last 14 months I have been in IV chemo. 25 of the last 31 months I’ve been in one kind of treatment or another. It all takes its toll. I try really hard not to focus on what I can’t do and be grateful for the good times instead. It’s a much nicer  place to live. 

Lots of love 

xxx