Too sensitive or should I complain?

Hi ElaineT 

Glad to hear your husband is feeling a bit better today. 

<<hugs>>

Steve

What a terrible, uncaring person to be an oncologist, no bedside manner at all. How awful to cause you more stress than you have already.  Coping with cancer, especially seeing a loved one suffer is unimaginably painful.  I know from experience, it’s brutal.  You have my sympathy, and I wish you all the strength to cope.  

Thank you Shanna16, my husband doesn’t want to complain and for his well being and health I will take it no further. 
She is a vile uncaring woman, who has no empathy whatsoever, I will no longer go into any appointments with him until I feel stronger, he will be supported however with our adult children. 

Thankyou, thank you, thankyou  for your caring message. I am struggling but I will not let her take away any hope. Xx

Hi Elaine,

Your post resonated with me - when I was supporting dad with his oncology visits, he had a few oncologists that he would see as part of the team and one of them we just did not get on with at all. This particular oncologist had a very 'brisk' and matter of fact manner which I personally found difficult to tolerate when I was so emotional as dad and I were still reeling from his diagnosis. I think in fairness to the oncologist, it was a clash of personalities but the difference in bedside manner made some of dad's appointments very difficult to withstand and we would both worry that each appointment it would be this particular oncologist that would be there to see dad. I too was very worried about 'rocking the boat' for dad by complaining - I was petrified of being seen to criticize and risk damaging the relationship with the department that was caring for dad, but I struggled to make the relationship work as some of her comments were very direct and hard to hear when dad and I felt so fragile. I hope this is a fair assessment, but I think sometimes the medical professionals can be so used to discussing these things it makes them lose their empathy. I'll never forget how shocking it was to hear even the word cancer used so frequently and naturally by the doctor in the consultant's office, when at home, I was still really struggling to even say the word out loud. 

Do you have a Macmillan Nurse? At the time, I confided some of my issues to the nurse and she was able to reassure me and offer some support. They can attend appointments with you and sometimes it was helpful to have her there as the Macmillan Nurses focus on the person rather than just treating a patient and their approach dealing with dad (and me really) was very different to the oncologist. I think if you feel strongly, you can request a change of oncologist without having to explain why - I would appreciate one of the community volunteers verifying if this is correct just in case I haven't got it right. At the time, I asked my Macmillan Nurse if other families change oncologists and she said they do and for various different reasons. If you don't have a Macmillan Nurse, I would really recommend asking for a referral as they provided the much needed emotional support for dad alongside the appointments. 

Make sure you take care of yourself too and don't underestimate just how taxing (physically, emotionally and mentally) it is to be part of your husband's support network. Again your post resonated with me as I have been medicated and offered counselling but nothing was able to really reach me, What has helped was finding these community boards and reading other people's stories. I hardly ever post on here but reading other 'normal' people going through what I had experienced has been a comfort and makes me feel less alone on the darker days.  

Sending you and your husband lots of love and strength x

Thank you so much for your lovely reply . You have captured everything I am feeling. You and your dad sound like you have a very special dad & daughter relationship, which is absolutely beautiful to hear. My dad was my absolute hero so I can understand your bond. 

We haven’t been appointed a MacMillan nurse but I think I will look into this. Just now I am too scared to ask anything for fear of an answer that will tip me over the edge again. As I really am not coping with this at all. 

Since his first chemotherapy appointment on 8th Oct, he was been so ill and now has a chest infection. 
I feel completely exhausted and done in by it all. I know I have to start looking after myself as I’m not sleeping or eating much.. I’m living on adrenaline most of the time. 

I am trying so hard to accept all of this and keep fighting with him. But that horrible oncologist has really made me feel helpless. Sadly there is no way of changing her as where we stay there is only 2 and my husband doesn’t want to change her.

Honestly thank you for your advice and your experience, it makes this whole dreadful situation a little easier for me knowing I’m not alone. As I feel very alone just now, 

Thank you  sending you a large hug x

Hi Elaine, I too can empathise, my husband also has a sarcoma that has spread to his lungs and is aggressive. The waiting is what I'm struggling with as his treatment hasn't started yet, and, well, the clock is ticking. They asked if we wanted to know the prognosis, which I did,  but its scary. Likewis its making memories and doing what he wants whilst he's well, but I am findng it so hard to think he may have a year, maybe even less.

His oncologist was matter of fact but not unpleasant  like yours, my hubby prefers that, he didn't want it sugar coated, but I was reeling from the news, still am in some ways.

As you say just knowing you are not alone can help, it doesn't change our situation, but maybe helps us feel less alone. Keep talking, I find that helps, but I cry a lot too.

Give yourself permission to look after you too, I have to remind myself of that.

Oh sending you lots of love and hugs. I totally understand the waiting. We had to wait 7 weeks for any diagnosis. It is utter hell. 
thank you for replying, knowing your not alone truly helps. But the day to day trying to live any normal life is so hard. 
I so hope you get a treatment plan soon, please keep in touch xx

Elaine, how is your husband now? I hope they are getting on top of that chest infection. X

I get so exhausted too, not helped by having severe arthritis and not being too mobile. 

I think it's often the case that the oncologists don't have much rapport with patients or relatives. My husband's oncologist gives us very little time or information, if we ask questions he refers us to the MacMillan nurses. Your experience has been made harder by this person, and we all know how much we need support and gentle treatment in our situations. I'm sorry I don't have any advice for you, I just wanted to say that I think you have every right to feel angry and upset. Nobody understands the effect a cancer diagnosis has unless you've been there, even oncologists. Sending you love and hugs.