Hi Everyone, I haven't been very active so far on this site - but find myself logging on more and more. Also, have shied away from writing blogs etc, too shy. But now I need to talk about things, or fear I'll crack up.
I have very rare cancer called 'phaeochromocytoma', which is a tumour arising in the adrenal gland.It's linked to another type of tumour called paraganglioma, which usually starts in head and neck, but can start anywhere. It's also hereditary. My sister had neck tumour 10 years ago, (before hereditary link was known about) and I was diagnosed last year.
'It's notoriously difficult to treat' one doctor said to me. Surgery first, but if it's spread, no cure. Best you can hope for is control rather than cure. But the usual treatment that shrinks and controls tumours was ineffective on mine. (I have secondaries in liver, lymph nodes and small nodule in lung. I also had large secondary tumour removed from my pelvis last year). I'm now on a mild chemo drug called Temodar, used to treat brain paragangliomas. But only 33% of 'phaeo' patients respond to it. So I have no idea if it's doing anything yet. All I know is I have weird pains everywhere. I just seem to swop one pain for another. I've had pains in my side for about 7 months now, and suddenly, in the last week or so, my right hip (where I had tumour removed) has swung back into action too. I've had no pain there for months, and now I'm getting funny shooting pains all over the place. Saw my Prof in London yesterday, told him pains were increasing, freaking me out. He said they'll probably scan me after 6 cycles (I'm on 5th now).
But worse than that, worst of all, my son, who is 24 (he's our only child), has been having pain as well. He's waiting for genetic testing, but his GP did some bloods/urine tests, and his hormone level was raised (first sign). He's now waiting to see my Professor at St Bart's and I'm terrified. I had about 1 hours sleep last night thinking I don't know if I can bear it if he has tumours too. And then I think I'm so selfish and weak, I have to bear it, for his sake, and other people do.
But I'm fed up today with putting brave face on, trying to live 'normal' life. I'm worried sick, pains are getting me down and I feel like crawling into a hole and not coming out for a while. Thanks for listening xx
FormerMember
Oh Jeanie my love, you are quite justified in feeling the way you do. Thank goodness for this site where you don't have to put on a 'brave face'. I must admit I have not heard of your type of Cancer but we have all faced the aches and pains after diagnosis that before we would have hardly paid attention to but after we think all sorts of horrible thoughts.
I'm sorry to read about your son, no wonder you are worrying about him too. You are not being selfish and weak, you are being a mum and we mum's worry about our kids regardless. If it makes you feel better then have a 'duvet' day today to charge up your batteries again so you can face the world tomorrow. Take all the help offered to you and take a deep breath and take one day at a time. I know, it's easier said than done but we can only concern ourselves about what is happening TODAY, tomorrow isn't here yet.
Sending you a big hug and lots of positive thoughts to help.
I can't even imagine how you are feeling, its an awful situation to be in. We all have days were we don't want to wake up let alone get up, its natural, your body and mind are having to deal with so much. Be kind to yourself, you don't always have to put on a brave face, share your fears with us or someone you feel you can talk to who will just listen to support you. Its OK to be scared or cry. We are all here you can talk to us as much as you want and we'll support you if we can.
Just take it one step at a time, there is no point worrying about things that haven't happened - your imaginings are always worse than reality.
Hi Jeannie. Like the others, I can't even imagine how you are feeling and how you are coping. You sound to be doing amazingly. I'm not a sufferer myself, it's my Dad but I will say that this website is wonderful. You can't get a straight answer out of doctors and nurses and sometimes you just feel too embarrased to ask the questions in case you are judge as being mean or unfeeling in some way. You get none of that here. This is a place for people who are going through what you are going through. Don't bottle up and don't fear being judged. Just know that there are people here who understand and are there for you if you need us. Hope my ramblings make some sense! xx
hi jeanie ,just got to say i agree with every one else you are doing an amazing job already coping with all that has been thrown at you. i can understand your feelings totaly where your son is involved ,i have had breast cancer but have been told that the type i have can be genetic i am also waiting to see a gentic counceller a couple of months ago my eldest daughter who is 27 found a lump in her breast i was out of my mind with worry also guilt thinking i could have passed the cancer on to her ,luckly she didnt have cancer it was over active breast tissue though she having 6 monthly appointments which is good . have the drs looked at your pain meds ? have you got a macmillan nurse ? if not please ask if you can be assigned one they are brilliant also they can sort out pain meds for you as they know which medication is best for the pain that you are in. i havent heard of your cancer, but have experienced the pains like us all .so know what you mean it plays with your mind. come on here jeanie & express how you feel it does help i wouldnt have got through this past year without the love & support off people on this site they helped me on my darkest days .just to let you know we are all thinking of you & willing to listen any time take care love n hugs theresa xxx
