Oncologist Appointment........

[willow]

Well......I've had my check up with the oncologist.......... What was I expecting .......I don't really know ....this was my first visit after finishing treatment. It was over so quickly ..for the last few weeks I have been noting down all these questions which I thought were so relevant and I wanted him to see me looking so much better and saying sensible things. I felt like I was full of tension and my mind was all fogged up again.....I didn't end up asking half the things I wanted to - my carefully rehearsed consultation was over and I felt empty....at a loss.....'See you again in six months because you're seeing the surgeon in March.' That's three long months away....What do I do now....I feel as negative and vulnerable as I did when they told me 'It's Cancer'. The tears are flowing and I can't seem to stop....Why....? All the old questions ...why is this happening ...what did I do wrong....I don't want this, I can't bear this, deal with this, live with this..........I am screaming again on the inside and it really hurts....... It's Christmas next week and I don't feel very festive but I have to smile. He told me it is now just a waiting game as it is for most cancer patients......that is not enough ...I wanted to hear something else, but what ....I don't even know or I can't really say it out loud. My brain is all messed up right now and I don't know what to do ...there is noone to talk to .....noone who understands....or who wants to hear that I am not thinking clearly or that I am once again feeling that horrible fear in the pit of my stomach. I thought I was coping....I want to wake up tomorrow and this last eight and a half months will have just been a really bad dream. I asked him when will I feel strong again, when will I stop physically hurting, when will the scary thoughts stop. He said it is quite possible you will never feel the same physically and certainly not mentally. I was in denial - I thought I would one day feel good again... me again........I wished for this so much...and I feel as if this little bit of hope has been taken from me....I wanted to feel good after today....... Willow

[benlisecca]

Hi Willow, I don't have any words or wisdom for you but just wanted to let you know that I feel your pain. Love and hugs Sharon xxxxx

[Sailor]

Hi Willow Yes it does take a while to find the new normal, but there are a lot of people out thee who do understand and have been through it. Get in touch with Cacner connect at 13 11 20 and ask to talk with someone who has been through the same treatments as yourself. Talk to one of the people on the helpline. There are others on this site who have had the same experiences - just wait until they have time to respond. It was a really good idea to write down the questions you had, and yes I've been through writing them down and then not looking at then in the consultation and feeling a fool afterwards. Don;t be afraid to write to your oncologist and say, I meant to ask these questions. Oncologists are human and do know that patients are like this. Next consultation, with your surgeon, see if you can get another person to go with you - give them the list of questions. Yep - your brain is all messed up - that is one of the side effects of all this treatment and it does take a while for that to reduce a bit and for you to feel like you can manage basic thinking again. I never use the coping word. A few years ago my oncoclogist made the remark that I appeared to be coping - my response was that I was not coping but I was managing - I was in control, and that has become a mantra with me - not coping but managing. Try and work out each day how you can be in control. You heads messed up, so write down things you need to do - keep a pencil and paper handy. Keep a box of tissues handy so you can have a good cry of you feel you want to. Do little things to pamper yourself and make you feel good - it is all part of managing thing terriblel thing we are going through. Take care Sailor Have you ever been at sea in a dense fog, when it seemed as if a tangible white darkness shut you in and the great ship, tense and anxious, groped her way toward the shore with plummet and sounding-line, and you waited with beating heart for something to happen I was like that ship before my education began, only I was without compass or sounding line, and no way of knowing how near the harbor was. 'Light Give me light' was the wordless cry of my soul, and the light of love shone on me in that very hour. Helen Keller

[Mrs_Elton]

Hi Willow, I hear your pain, I have a sense of the isolation you are feeling right now. There is NEVER a good time to be dealing with cancer and the crap that it brings to our lives, but dealing with it at Christmas time is especially hard. Keep talking to us, keep putting down your feelings, exactly as they are, you don't need to sugar-coat anything with us. You don't need to 'put on the happy face' with us. Just let it all out. Expressing it will release some of the tension, if only for a short-while. Totally agree with Sailor, find someone who can go with you to the next appointment with the surgeon (do you know what that is about?), have your questions written down, in priority order, with a space to write the answer. Give the list to your support person and ask them to write down the answers for you. If you can't ask the questions, get your friend to. Sending you big hugs and hoping you find some strength and support today. Jill xx

[samex]

Hi WIllow, I know exactly how you are feeling - set adrift? My husband's initial reaction was "well thank god that's over. Now we can all stop obsessing." He stopped - I didn't. (20 months down the track). I didn't seek any help initially and just "got on with it". We had a short holiday, I tried to get my strength back, went back to work and consequently cried in the shower every night from the pain and continuing fatigue. I had no-one to talk to except a couple of friends and my parents but I didn't want to bug them all the time with my woes. I cannot agree more strongly with Sailor that you should seek help ASAP in some form or another, for no other reason than to assure yourself that you are not crazy and to be able to cry with someone who gets it. I am still struggling with the new normal - haven't quite figured it out yet but I am coming closer I think. The fatigue does lesson and again I agree with Sailor with the idea of managing rather than coping and some days I manage better than others. I was lucky that the teachers with whom I work were wonderfully compassionate and my Principal actually sent me home one day for 2 days when she could see that I wasn't dealing with school at that time. These times became less frequent as time went on but there are still times when I just want to shout at the world "STOP". I am currently rading Petrea King's "Quest for Life" book and have found it to be quite consoling in places, and I think it is helpling me to find the new "normal". Christmas will become fun again and remember that if all else fails there is always someone hee to listen but don't be hesitant (as I was) to ask for some immediate help. There are plenty of people out there who actually do understand the disconnectedness that you are experiencing. Sorry if this was a little long winded, but your pleas struck a chord with me as I felt exactly the same. Take lots of care and book in for a pedicure!! S xx

[willow]

Hi Thanks for your reply - it was not long winded at all. I am so glad you understand the feeling of pain and fatigue after a day at work. I thought I shouldn't have been feeling that exhausted or achy and I didn't want to tell anyone as I thought they would think I was whingeing. My manager wants me to work three full days between Christmas and the New Year and I don't really want to. I really need him to understand.......I am going shopping tomorrow and am going to look for the book 'Quest for Life'. You also mentioned that you understood the feeling of being disconnected which was so good to hear - it is such a strange feeling and really hard to explain and not at all pleasant. I have recently started seeing a physcologist - I am hoping that she can help but it is early days yet. I went to visit my mother today - she is in a nursing home. (went in to full time care a few weeks ago - dementia) Spending time with my dad and dealing with his grief is difficult too as I have to stay strong for him - at 88 it is hard for him to accept that he can no longer care for my mother. I always feel a lot sadder after my visits and it takes awhile to get my thoughts back on track. I am sitting here listening to the Christmas Carols on the TV and I am determined to have a nice Christmas and just enjoy the day and to make sure that my parents and children do too. I am feeling a lot calmer tonight - and more positive and this is because there are people like you who take the time to reach out and show they care. I hope you are feeling ok and are looking forward to 2010. Thanks again and have a lovely Christmas with your family and a safe and Happy New Year. Take care, Willow

[willow]

Hi Jill How are you and your husband? I think of you and your family often and I hope that things are getting a bit better? You have touched my heart and I really wish I could take away some of your pain. Thankyou for your reply. You are right about just having to write it down - after my appointment I was so distressed I just had to express my feelings or I was going to explode - being able to just write what comes into your head is very helpful. And knowing that I wont be judged makes it easier. Sometimes my thoughts aren't always very clear. The visit to the surgeon is just a checkup and probably a booking for an ultrasound and mammogram? I have another lump in my breast which they have told me is benign but I don't like it being inside me as it is in the same breast as before. They don't think it is necessary to take it out but I am leaning towards having it removed. Now that the treatment is over I go to my appointments alone....not by choice but the children work and there is no-one else. After a difficult day I am actually feeling a lot calmer tonight. I tend to get overwhelming, scary feelings of panic and it is just nice right now to be feeling ok - to be just enjoying the moment - listening to carols and feeling a bit more positive. Thanks again for your kind message. Take care of yourself. Best Wishes for Christmas and the New Year. Willow

[willow]

Hi Sailor All good advice - I often read what you write on other blogs and you seem very wise and together. I love your quotes and notes on the end of blogs. I have been onto the 131120 no - without their support I don't think I would have survived the months of treatment. It is hard to organise my days as sometimes I am just not motivated to do things but I do try. You're right I have to learn to manage my days not necessarily cope. This is a terrible thing that we are all going through but talking to people like you makes it so much easier. Thanks for your support. Have a lovely Christmas and a great year in 2010. Willow

[willow]

Hi Sharon Thanks - I hope things are going ok for you these days. How are you travelling? I hope you have a lovely Christmas and a Happy New Year. You said you were having more treatment in January - Good luck with that. Take care. Willow

[Mrs_Elton]

Hi Willow, Glad to hear that you are feeling calmer tonight, I've just realized I had intended to watch the carols tonight and I got caught up with other things and missed them. I find them calming too. I will definitely watch the xmas eve carols at the meyer music bowl in Melbourne. That is tradition!! I'm sorry to hear that you have to do the appts on your own, years ago when we were having all our specialist appts after my miscarriages and ectopic pregnancies, Greg would always come with me and be able to 'fill in the blanks' for the stuff that I didn't hear/understand. It really does help, even just for moral support. I truly hope you can get someone to go along with you to see the surgeon. Greg is much better than he was last week, he is much less confused than he was and was able to come home from hospital on Tuesday. He is certainly happier at home and is starting to come to terms with his loss of independence (eg. driving). We see the oncologist on Tuesday afternoon after Greg has a chest/abdo/pelvic ct scan in the morning, that is to check up on the cancer everywhere else. Based on Greg's 'symptoms' the last few days, I have a feeling the oesophageal tumour might be growing again. Will just have to wait and see. Keep posting how you are feeling here, as you say, it sometimes can help prevent the explosion and you know that we all 'get' what you are going through, in one way or another. You are amongst friends here, no judgements, just tell it like it is! Best wishes to you, Jill.

[samex]

Hi Willow, Dealing with your Mum and Dad must be awfully difficult as well. I am lucky in that while they are elderly my parents are doing really well (Dad had prostate cancer but has it under control despite some radiation side effects). I am currently working on a piece of writing dealing with the sense of being cut adrift and having the sense of looking at aspects of life from the outside. Not for publication yet but soon. See if your boss can give you the time off. Maybe you can use your parents situation as well as your own for a rationale? While I have been doing really well lately i had an awful day on SUnday - tears all day. I think the time has come for me to see a professional too. Take care and I'm glad things are calmer. S

[Jules2]

Hi willow ... just wanting to wish you a merry christmas. I know its tough to get into the spirit as i am struggling with that one a bit this year, however, i am like you and want to be determined to have a good day. I had my first check up just recently and it was over and done with in a flash. I managed to ask a few questions and that was that! take care and let the fat man make you smile :) Julie