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Very confused and fed up..

Posted by

Hi all, Jon went to see the oncologist last Tuesday and since then I have been having a bad time. The news was quite good, so this is very confusing!

His main tumour is still stable, mets have grown slightly (so good news really)...we have been told, by two different oncologists that Jon is now on palliative care only, no more treatment. We are now on our fourth oncologist!!! And he has said, Jon has roughly about 6 months, possibly a little longer as he is in fairly good condition. He also said out of the blue, that maybe, if he's well enough in February, he could have his first line chemo again??? This also depends on if it's growing, if it stays the same they will do nothing. Two questions come to mind....WHY are they waiting for the tumours to start growing more aggressively when they are growing slowly now!  WHY is this oncologist saying maybe more treatment (if well enough) when the others said no more treatment? I have lost faith in all of them because they have changed so much...this one says he is here to stay...humph! This has happened over a 14 month period.

They keep moving the goal posts and I haven't a clue where we are or what we are doing..... the district nurse came yesterday and I had a melt down. She has since made an appt. for me to see my GP as she is worried about me. She wants me to take antidepressants which I am dead against, but I will see the GP. I am only like this because I am totally confused! I just get my head round what I'm told, then it's changed. I do realise things change in this situation, but I don't feel like the oncologists and us are on the same page at any point. 

On top of all of this, we are trying to sell our house so Jon can sort his affairs out, and it's fallen through for a third time!! I don't think anything is going straight for us at all. I'm really tired.

Friends heard the "good" news and are now treating it as though all is fine and will continue to be. They don't live with it!! Jon is very tired all the time, not eating a great deal and his breathlessness has worsened. The Oncologist has put him on antibiotics/short course of steroids "just in case". My mood is low and so is Jon's...all we want is everyone to tell us the same thing.....not too much to ask is it?

Sorry to be having a moan, just a bit fed up.

Tina x

Posted by
Hello Tina, I'm listening and feel like you. my hubby was always told at the start this is not curable but it is treatable for a while. My hubby has also been told he is palliative, I think they use this word to be clear about where this path is going to head and the direction of it will never change, it just depends how long you're on it. Following my hubby,s first scan after an onslaught of chemo and radio, the news was the primary has stopped growing but there are secondaries with a small spread, H and I quite crushed, but the medics seemed pleased and I think that's because without the treatment they expected the picture to be far worse. Second scan, following a full rest after treatment mets spreading and growing , but slowly and I had thought like you, why didn't! You put him on maintenance then, to keep the growth as slow as possible and it's been explained to me like this - these drugs will kill you faster than the cancer if we get it wrong and give him treatment when his body can't work with it because this treatment kills all the good cell growth as well as the cancer growth, so it's constantly a risk probability , one side of the scales - cancer, the other side of scales - toxic treatment, in the middle - my hubby, There's no doubt that leaving the treatment off through the summer has given him a brilliant summer he's felt better than when he was first diagnosed and I don't mean better as in normal, I mean better than first diagnosed and treated, which because this disease is with him for good, I guess is the only way you can compare 'better' with better with cancer. You're right, I too feel people take all this news as positive and good, whilst inside I'm still dealing with the ' nott curable but treatable'. you're still on the same path, it's still going in the same direction, we just haven't started to waiver off it yet, but that time will come and that thought never leaves you, because we have to live our lives on that path, other people come and visit but they have the freedom to leave, we can't. Hubby was crushed after the first scan result, we naively thought we'd beat it, because we forgot 'not curable, only treatable'. hubby is on anti depressants and it's enabled him to have less of a black feeling, he's stopped getting his binoculars out and trying to see where the end of our path might be, instead he's got his magnifying glass out to see in magnificent detail the life we have every minute, every hour of each step we take on this awful harrowing path. Sending lots of understanding and hugs, try the antidepressants, if they're offered or anything else that's offered, they're only cushions, rose tinted magnifying glasses to help get the most out of what you have here and now. Izzy x
Posted by

Dear Tina, please don't apologise for having a moan. We all need to to, and deserve to from time to time. I'm sure you'll be seeing another one of mine soon!

Continuous change of oncologists doesn't help. We're on our second one at the moment, a better relationship with number 2 to be fair. Number 1 had a bedside manner which made even good news sound like the end of the world. I can understand your confusion. It's the uncertainty and sense of lack of control which really gets to you.  The fact that treatment is being mentioned in any form at any stage, while unexpected, is a positive. They most likely want to monitor growth, and not intervene with something which may make Jon feel worse, until it's really required. (I'm getting a little concerned about the opposite scenario for my husband, but that's another story).  A chat with your G.P might help, and he/she may actually be able to enlighten you in relation to some of the confusion.

You have so much to cope with at the moment. Hopefully the house will sell soon, and that will at least be one thing less to think about. The steroids will hopefully help Jon's appetite and once he feels a little better, it will help to lift both your moods.  You sound as if you really need a rest also, so is it possible for you to get a few hours or a day away just relaxing and doing something for yourself?

Thinking of you and sending you big hugs xx


Posted by
Hi Tina I was so sorry to read your post this morning. It is SO confusing, especially when you see more than one oncologist. We have one main one but when he has been unavailable we have seen two others, each of whom were far more positive than our regular one and it's amazing how different they can make you feel when giving very similar information. Today we are going to see our regular one and he is definitely a half empty person. I'm dreading today as we have another X-ray and will learn if the Tarceva ( which our regular guy told us almost certainly wouldn't work) is having any positive effects. At least that's what we are expecting to hear - but who knows what information we will get - as you say It could all be completely different. I think it's really that they simply don't know the answers to many of our questions, especially what is going to happen next. I have been told that by the oncologists time and time again and wonder why, if they really don't know, they tell us things which we then hold tight to, only to learn the next time that it's all different. Last time we were told by one of the more positive oncologists that Lung cancer is very unpredictable and that's why anything they tell us can change within days. Not very happy news but does explain some of the confusion we have experienced. Your time scale has improved and there is hope of more treatment. Try to hold onto that. I'm sure they would start the treatment earlier if they thought it would be in his interest and I'm sure they will do so if Jon's situation starts to change. As you know only too well the treatment can have detrimental effects and it is a very fine balancing act. As for the anti- depressants I can understand you not wanting to take them I wish my husband would try them but he won't and if I'm honest I don't think I would want to take them either. I read on here some time ago about something that I think starts with a P. which people said was available without prescription and helped them keep off anti- depressants. I didn't make a note of it and wish I had but maybe someone will know what I mean? Moving house is hard at the best of times and can't imagine how stressful it must be for you. I do hope you get some new interest soon. Be kind to yourself With love Yvonne xxx
Posted by

Dear Tina,

This is the third time I have written a reply only for the system to throw me out just as I am ready to post! GGrrrrr. Anyway here goes again….

I have sometimes been confused about the plan of treatment for H.  I suppose that as every patient’s disease progresses differently and as everyone responds differently to treatment the oncologists can just choose what they think is the best treatment at any particular time. When the disease then doesn’t react as they would expect they have to change the plan or other options may become possible that weren’t before.  I have to admit I wouldn’t want their job!  Izzy’s explanation makes a lot of sense too.  But none of that helps us! We just manage to get our heads around something and then it is “all change” and we are off again on a completely different route!

With trying to sell your house on top of everything else it isn’t surprising your mood is low – I am so sorry that the sale has fallen through again! Go to your GP. If you are against trying medication then maybe they can arrange some therapy for you (although I went for my first session this week and the therapist said I shouldn’t rule out medication…). It think it is better to seek help before you reach bursting point which is what I was trying to do.

As for friends and family who leap at any bit of“ good news”, you are right, they don’t live with the reality of cancer  and serious illness every day.  I think they want to be happy for us, I also think that sometimes they just don’t want  to be dealing with friends who have no quick fixes for their problems – there are more “fair weather friends” out there than I expected!

I hope the steroids and antibiotics help Jon and make his breathing a little more comfy.

Sending a comforting and understanding hug to you with love,

Hiloa x

Posted by

Hi Tina, Boy, you're having a tough time of it.

I know what you mean re confusing difference of opinions, though we've only experienced it with minor things. Your head must be all over the place with worry. It's enough coping with the day to day stuff let alone the stress of this plus the house sale as well. My heart really does go out to you.

I sooo empathise with your point that others don't have to live with the life we have. It's all so clear cut from the outside but when you're in it and living and breathing it, it's anything but! I don't know if you're like me, but I get sick and tired of trying to explain the facts and hard core truth of John's cancer. They see that treatment has ceased so he is cured of everything and life is 'normal'  as far as they're concerned. Even some of our close family fail to 'get it' so I tend not to bother with explanations any more.

I'm glad you are seeing your GP. He/she may be able to suggest something that will help support and see you  through this difficult period. I once accepted anti-depressants and they really did help me through a particularly hard time I was having over a 6 month period. They just gave me some extra strength and clarity to cope better when I desperately needed it. .

My love and supportive hugs to you dear lady. 

Zute xxx