Thank you for your support. I will let you know what he says. I feel very flat and exhausted. It’s hard to keep focused on anything but I’m doing my best.
Let’s hope that seeing the oncologists and getting treatment, whatever that is, makes the situation clearer and more manageable.
There are people who survive lung cancer, or keep going with it. Even the more advanced cases.
I know exactly what you mean about having a hard shell when dealing with loved ones. I’m struggling with the sympathy of some people. I just don’t want to go there but that feels selfish.
My husband is being loving and positive but know I’m feeling bad that he’s got to deal with his wife in this predicament.
I cant even tell you about my feelings about my sons ( 20 and 18) because it’s too much. Now I’ve said it and started to cry!
Just venting. I know I’ll get to a better place in my head.
It's not at all surprising that you feel as you do. How are you recovering from your pneumonectomy? It is still early days since your procedure, so please be kind to yourself and rest as and when you need to.
I've got my fingers crossed that something can be done for you.
Thank you so much for leaving a message for me to read this morning! I am comforted by knowing you are thinking of me. My boys are also here today. I have lots of rest, lots of help in the house etc, and my husband isn’t working much so he is around to care for me. I am recovering really well from the pneumonectomy. I miss walking my dogs and going to the gym but I can go and meet my husband at the end of a dog walk, go to the shops with him and see friends and I’m already building up my walking. Otherwise I’m happily snuggled on the sofa.
Yesterday was hard because my mum, who has lymphoma, managed at the moment by immunotherapy, took herself to hospital because of worsening back pain. She’s having an MRI scan in the next few days. She is a full time career for my dad who has dementia and has to take him everywhere with her or he cannot cope and panicks so that is very difficult for her. I just can’t believe that me having this disease has come along out of the blue to add to her situation. I can’t do anything to help now and she is two hours drive from me.
As regards me, I know there is everything to play for and I can accept a changed perspective on my life- I just need to get used to it. The mental side is the trickiest bit!
Isn't it strange how additional worries are often heaped upon people who already seem to have more than enough of their own? I have been where you are and know how difficult it can be, but you sound like someone who will find a way to cope.
I hope that you enjoyed having your boys home with you and, that they have come to terms with your diagnosis. Keep them in the loop with all that is happening and, they will not feel excluded. People often try to save loved ones from the worry, by withholding prognosis and other upsetting information. Instead of reducing worries, this only serves to make them feel excluded and upset as a result.
You will soon get back to walking your dogs, but it sounds as if you are recovering well after your surgery. Just be sure to take plenty of rest. I hope that your mum's MRI turns out well for her. I have been waiting for one for 12 weeks and, got a phone call yesterday offering me a brain scan on 4th January. I can't say that I am looking forward to it, but I'll be glad to get it over with.
A diagnosis like this does change your perspective on life and, this is not always easy to adjust to, but I'm sure that you can do it. There is still plenty to live for, so take every day as it comes.
I hope you are both okay. NYE is another difficult one. I am glad you got the brain scan Jolamine. Despite the dread of having it done, we all know the upside if it’s clear and everything crossed it will be.
People talk about beating cancer but although I’m a novice at this and my view might change, it seems to me right now that it’s more useful to focus on beating the fears. At least that’s more within our control.
I’m seeing the oncologist on Thursday morning. I have researched my cancer and it is very rare. It is pleomorphic carcinoma, and represents 0.1 to 0.4 % of lung cancers. It is aggressive, refractory to chemotherapy and has a poor outlook. It is basically a mix of different cancer cells. I was/ am at stage 4 so, notwithstanding the surgery, my chances of surviving 2020 are not fabulous. I know that you also had a rare form of cancer Jolamine and you had to battle over the treatment at first. I am wondering what my next steps would be if I don’t have confidence in the oncologist on Thursday? It feels like I have one chance to get the best possible treatment option, but how will I know if I am? I have read only two reported cases of 5 year survivors (whose survival was due to drug treatment and not the original curative surgery). One had standard chemo (which it seems has not been thought to work normally, although due to the rarity of the cancer studies are few and numbers followed are small) and one who had immunotherapy. I know that depends on the genetics and I get lost when I look at that. It seems I would be lucky to have a match for immunotherapy.
My instinct says wait and see what the doctor says but I feel like I just don’t know or understand enough to be able to judge. I am lucky that I am a private patient and can get a second opinion and even treatment,potentially from anywhere.
You are so right, beating the fears and being positive are 2 of the main lessons to learn when trying to beat cancer. I can fully understand that at stage 4 with an aggressive cancer, the outlook doesn't make it easy to be positive about the outcome. However, no two cases are the same and, there are people on this site who have been given a very poor prognosis, but have beaten the odds.
If you don't have confidence in your oncologist, change to someone that you do have confidence in. One of the benefits of having private care is that you can to some extent choose who is treating you. It took me a year to change my 'care team', but I have never looked back since I did this. It really does make all the difference having a team who will do everything it can to hold on to you.
Draw up a list of questions for your oncologist on Thursday. If your husband is accompanying you, give him a copy of the questions. While you are asking them, get him to write down the answers. It is all too easy to forget to ask pertinent questions or to forget the answers given guring a consultation. You will quickly get to know who is going to do their utmost to save you and, someone who is just doing his/her job almost mechanically.
I sincerely hope that you find the right team to help you through this. I don't know whether or not you are a believer, but I shall certainly hope and pray that you find the help you need and that this helps you to be one of the people who beats all the odds.
