Hi to you all, it’s silly o’clock and I am not sleeping again for two reasons.
1) I’m checking on my husband constantly as he had his first chemo round yesterday with Doxorubicin and was feeling ill almost immediately.
2) I am sitting seething how I am being treated by his oncologist today and two weeks ago in the hospital corridor
My husband has a rare sarcoma cancer which has spread from his leg (fibromotosis) which has been monitored as a benign growth for last 14 years, But has had a slow leak to both his lungs and turned aggressive. It has took a long long 9 weeks to find this out, As you all know cancer turns your whole world upside down and spits everything at you. I really have been struggling coming to terms with this for the last 9 weeks as we knew it was stage 4 cancer in the lungs we just didn’t know the type as they knew it wasn’t primary. My anxiety is terrible and I’ve lost almost 2 stone in weight with it all.
I have used support phone lines, low dose diazepam for severe anxiety from the GP, and had an appointment with a Physcologist from local cancer support. Who basically just sat and nodded and said absolutely nothing for an hour apart from ‘ I can imagine’
I am finding it so hard that I could be losing my husband to this aggressive cancer. .
The reason I know how serious it is, is not of a discussion in his oncologists room 2 weeks ago when we initially found out what it was and treatment. So in this room with my husband and adult daughter present, the oncologist said she did not want to give us the name of the sarcoma, could not give us a time and we did not need to know stages as this was not going to help us. I mentioned our daughter was getting married next year and the oncologist said nothing. She had said palliative chemotherapy so I think that was the giveaway to how serious it was. Which I got straightaway.
However, as soon as my daughter and I were to leave the room to give my husband privacy for blood tests. She ran to us in corridor and said straight into my daughter’s face, ' I do not know about the wedding next year.’ She did not say this to me, I actually ran out the hospital and was breaking my heart, when I gathered enough strength to return she approached us again saying go holidays and make memories. This has all been in my head 24/7 and I’m breaking. How can we go away when I’m literally shaking and crying all the time?
Then yesterday our adult son accompanied us to the hospital and I mentioned I did not want to stay too long with my husband before he was going to be administered into the chemo suite for fear of meeting this oncologist again. But yes you guessed it, as soon as we got up to leave and make our way down the corridor she ran after us. Stopped us and said I heard you did not have a good experience with the physcologist please go and see another if your not coping. Then she said, very loudly, ‘your husband has a 50% chance with the chemo, then if not we will try an oral method, then if he dies, he dies we have gave him our best chance.’
Am I being over sensitive here? As I don’t want to rock the boat for my husband but SHE is the reason I’m not coping, I’m absolutely terrified of seeing her when she just blurts everything out coldly in the middle of a corridor. Our son was completely taken aback by her lack of empathy. He agrees it is not in my health interest to go back for any meetings with her, they will support their dad in the hospital.
I’m trying so hard to get my head round it all and be positive for my husband and fight it together.
Apologies for the long rant but I’m angry that I did not say something to her yesterday after her saying If he dies he dies. Surely this is not acceptable?
I wouldn’t talk to someone like that even if it was regarding a budgie. Just completely cold and again had left me feeling so unhopeful that all I do is sit and cry, which is not doing my darling husband any good.
Am I being over sensitive? Thankyou
Hi ElaineT
Sorry to read about what you have been going through, I certainly get some of that from my wife's story when her gynecologist was convinced all her problems were down to cancer and missed the major infection and the sepsis. She ended up in intensive care and I was given a 50/50 as to if she survived but survive she did.
Eventually she was diagnosed with Leiomyosarcoma that had spread to her lungs. She too has doxyrubicin but in her case treatment was stopped half was through because it affected her lungs. Doctors managed to fix the lung issues and then went for treatment with gemcetabine - this managed to render her cancer stable and she has now been living with cancer for over 10 years.
I did a living with less stress course that really helped me. The bit about focusing on the here and now - day by day or even hour by hour helping me appreciate what we have - many of the things I imagined might happen never actually did. The breathing exercises are great for relaxation and when we do get some more challenging news - well that old saying step back and take a deep breath works mostly for me.
I have certainly seen some doctors who struggle when dealing with cancer and even more so relatives, Some doctors feel that just being factual can be helpful but for us it can be really hard. My first trip to Maggies I think I mostly cried for about a hour.
Do post whenever, it is hard but somehow we manage.
<<hugs>>
Steve
