Not Really New, Simply Returning

Hi Jan

I don't come on the forum much these days but when I do I always look out for names I can remember.  Are you still on Femara?  I recall you found it a trying regime.   I'm so sorry that you are having such a rough time now,  To have to cancel the colonoscopy at the last minute so that you are left in limbo again must be really distressing.   I know  there are people, where a scan has shown a possible abnormality, whose colonoscopy has shown no problem.  My fingers are crossed that that will be the case for you.  Please don't read too much stuff online.  It's easier said than done, I know, Perhaps you have an understanding CNS you can talk to?   

I'm glad you have posted again - this forum is one place where people understand your terror. 

Hello Anne,

Yes, I'm still taking Femara, however, I seem to have adjusted to the drug and am no longer looking it as trying as before. Now, it's just that little yellow tablet at bedtime.

It really is distressing. I had felt pretty okay up until ingesting that horrible preparation. Then, I was just so sick for days. I don't think that having a reflux problem helps any. I just don't know what to do now and my oncologist is quite hopeless. She just is never available for anything. With Covid 19, I haven't seen her in forever, just one of her residents on the telephone.

The years have been difficult. I am estranged from my only daughter and my 3 little grandchildren. I'm not even certain quite how it occurred. There was no great argument. She has no idea about any of what has happened.

As well, I fractured my humerus a year ago and my right arm is still weak. It put me out of commission for 7 months due to the fact that it wasn't reduced correctly.

My husband took early retirement which is making things worse. He is an unpredictable man and, from one day to the next, I don't know what to expect.

So, it's been everything and now this is the last straw. Anne, I don't know what to do. I come up with some ideas that don't make sense even to me ... everything from suicide to a hospice. Honestly, I just don't know.

Thank you so much for listening to my wandering all over the place. This is the first time I've permitted myself the luxury.

I do hope you're getting along well.

Ms Muggle

Hello Ms Muggle, I’m so sorry to read what you are going through, i think everything is just coming at you all at once. It sounds like you haven’t got a very understanding oncologist, but what about the oncological support staff in the dept? Maybe you should try and get some Macmillan counselling? This was offered to me, i think my gynaelogical oncology department would have organised it if i had wanted it. Why dont you try and see if they can do that for you or if they cant or wont then try Macmillan and see if they have counsellors in your area. Can you talk to your GP and tell them what you have written here? I think you just need someone to help you navigate your way through and to make sure that you get the best and right treatment. I think writing it down here was a good start but please take the next step and get someone to help you who will be at the end of a phone. Of course there will always be people here to support you too, but thats not professionals helping you. Sending virtual hugs XX

Paeony,

No, my oncologist is the least understanding doctor I've ever met. During Corona, I've not even spoken to her ... just her underlings. There just wasn't any point in asking questions.

Counselling is something I tried and was told that 'everyone has to die some day'. I found it little comfort since I'd figured that out all by myself. Forgive my sarcastic tone. It's the only I can cope with my reality.

Feeling so sick from that prep is over, thankfully, and now, at least, I feel okay physically. I'm thankful that has passed, however, I've not followed up on the test and doubt that I will. I simply refuse to go through feeling as I did that week. I guess, though, the good thing is that it brought me back here whereby I fail to feel 'silly' of 'whiny'. I just don't know what to do.

I don't go back for another CT scan until November and much can happen during those months. I fear going and I fear not going. I'm at a total loss. There is simply no one to advise me and I truly don't know what to do except read and let the hours pass until the best time of day ... bedtime. Usually, I'm an insomniac. Since this began, well, I can sleep at the drop of a hat. Dear God, I envy people who deal with this horrific disease rationally or, at least, deal with it.

Virtual hugs,

Ms. Muggle

Hi Ms Muggle. Reading your posts my heart goes out to you. It must be truly awful to feel your Oncologist has no empathy with your situation and that your counsellors just state "everyone has to die one day" is truly disgusting - surely they weren't Macmillan Counsellors? 

As for sounding silly or whiney, you're neither, you're just at the end of your tether. Other ladies on here have spoken to the Samaritans. Macmillan Support Services also offer someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

I'm sending you a great big hug B xx

Hi Jan

Well, that certainly doesn't sound like like helpful counselling.   I reckon that person was in the wrong job!  You don't say how you contacted him/she/it but there are several organizations that offer advice.  Perhaps you would have better luck if you contacted  the Macmillan Support line as MrsBJH suggests.  However I can well imagine that after such an experience you might not want to try again. What a pity your daughter no longer has any contact with you..  I note your  comment that your husband is  "unpredictable"  -  I think I can understand  what you mean as there are definitely  times when that word would be applicable to mine too!  I have found the last eighteen months quite stressful and I feel quite guilty as the isolation must be so much more difficult for anyone coping with health issues.   

Lots of love

Hi Mrs Muggle,

I remember your name. I've been here a while, not sure why!

So sorry to read of all your problems, but I agree with Paeony. You need someone professional to help you. And if there's one thing I've learnt about cancer, the sooner it's sorted, the better. 

Are you sure you can't talk to your daughter? I'm sure she would be horrified to know what is happening to you.  I do know how you feel about counselling. We all know we will die some day, but we don't need it spelt out to us. I studied Psychology at college years ago and thought it a load of mumbo jumbo then!!

Hoping you get the help you need. xxxxx

Hello Ms Muggle, I am sorry to read of your troubles, it sounds very hard. How about phoning your GP, telling them all about this and asking what they can advise? Can they suggest alternative investigations for your colon? A second opinion from a gastro-enterologist maybe? And also a more intelligent counsellor. I totally get your sarcasm thing, I find it hard not to be sarcastic when people are not helpful. I wish you the best of luck.

Hi Mrs. BJH,

It really is a horrible feeling knowing that I'm just another patient number to her. I gather it's the same with most of her patients. This woman should be working in some lab. No, absolutely, they were not Macmillan counsellors. This was someone private and, as well, a woman from the hospital.

It really feels as if I'm whining or being completely selfish. We all have problems and not simply me. This is just something that I know I can't handle alone and I do know my limits. I'll take your suggestion and speak with someone from the Support Services here or the Samaritans. I know things cannot continue as they have been.

Thank you so much and a big hug back, xx

Hello Nanny Anny, I remember you as well!

I know that you're right and that this is sooner sorted the better. To be honest, though, I honestly fear the results.

I think I need a team of professionals! Admittedly, I don't know where to turn. I know I can't continue to hibernate, deny, and bury myself in reading. There are things that I must do and yet, they seem huge.

Well, Lisa would be shocked, I've no doubt. It's just been such a long time since we've spoken and, to be totally honest, I truly don't know how she'd react. She'd be stunned yet I don't know that she'd care all that much. She has her own life which includes my little grandchildren. Honestly, I wish I could comfortably ring her. I so miss the little ones. Yet, Lisa is stubborn ... you can tell, I'm really torn about her. Well, after being told that by a counsellor, it rather destroyed my faith in the profession. You've made me laugh here. It can be just a pile of mumbo jumbo. 

I hope so, too. Thank you.

Ms. Muggles xx