Feeling pretty low today. This incurable diagnosis has hit me all over again. What it means for the family and the uncertainty of how much time there will be.
I've managed to stay fairly upbeat taking it one day at a time so far. Been lucky enough to get away several times with my hubby and continue meeting up with friends and family.
I had six cycles of chemo with CT scan half way through which showed things had not altered from three and a half months before which seemed positive news. Due another CT scan at the weekend. Meeting consultant on 15th Nov. She has mentioned might be good idea to do some radiotherapy. Not ever got into a discussion of time scale/prognosis as too scared. Apart from fatigue after chemo been pretty lucky with side effects.
I've just been acting normal whatever that is with my kids 29 and 27. Not discussed things as don't want to upset them. Today though I can't get thoughts out of my head like I'm not going to see my 2 year old granddaughter grow up, my kids marry etc
. Dont think the dark nights are helping my mood. I'm ok while occupied with TV shows visits out. Just after some advice really as to whether other people have discussed the future with their friends and family talked about things they fear not being around for. Guess if is very personal. Or talked to a professional or had counselling?
Sorry to bring down the mood in the group ans for this rambling post!
Oh suze I'm exactly the same. I think about not been there to see my kids get married and my granddaughter growing up .I also blame the dark nights and it's gets very lonely especially when you live alone like me. If your able to you should book few days away coach holidays that's what I do. I'm of to york today then in December I'm of to torquay for 5 days. I go on solo holidays. Sometimes I just jump on the bus to the next town for coffee it gets me out and stops my mind working overtime. I don't speak about my illness either I think its our way of coping and trying to act normal. Try to stay strong xx
hi suze99, i understand, thinking about family and knowing you wont be there for them hurts and trying to be strong all the time is difficult at best. i am lucky to have good friends i also see a councillor she is great" weekly at my local hospice. joined my local cancer charity "there should be one near you" who are great and keep myself active, i too have been through treatment hormone + 20 agressive treatments on the sun bed which has changed me physically and emotionally so do 3 exercise groups a week have 2 massages and physiotherapy group too plus many of the activities the cancer charity do. I can"t tell you what a wonderful place it is. and yes long dark nights effect millions of people my partner has it so bad she emigrates to her sister in Aus till springtime but as she has done it for many years and i have enough to keep me busy i will be ok. suze there is nothing normal with living with terminal cancer i am a very positive person and i find myself in tears "i blame the hormones" all the time, i also have many years experience in healthcare a 5 in cancer so please contact your local cancer charity and as for counciling one of my macmillan nurses suggested it, i was a little wary but never regretted it once. know we want to strong all the time but we also have feelings and emotions and we should never bottle them up. take care eddiel
I'm sorry to hear you are struggling with being incurable. I think we all do, to be honest, some call them bad days or bad moods. I think it's to be expected though, given our circumstances. I had a bad day last week, couldn't sleep the night before so was weary, thinking what is this all about, I'm just waiting for cancer to come back, what's the point in anything, I'm going to die anyway, kind of mindset. To top it off I open the freezer door in Aldi and pots of leaky yogurt start falling off the top shelf! Luckily it was just tights and bag covered!
I have had a course of telephone counselling, my specialist nurse referred me and it was through Macmillan. I was still struggling after it and was referred to psychiatry at a local hospital. I was referred by the chemo nurses. Both helped. I also read a lot, I can recommend How to live, when you could be dead by Dame Deborah James. This helped with goals, which I kept simple and are things I like to do such as reading and crafts. I can also highly recommend Radical Remissions by Kelly A Turner - these are real stories and the factors that keep appearing in them. These cases are rare but they gave me hope when I had none at all.
I have been honest with family and friends but older close family don't really get it or don't want to. I am currently stable after treatment and I think they convince themselves that cancer is finished with now and that I am "all clear". I'm told that "God's good" well maybe He is, but cancer is even better at finding a way to come back because that is what it does. I don't have an answer for this situation and just have to concentrate on taking care of myself. I'm not in control of what people want to think.
I hope I've given you a few ideas but everyone deals with their lot differently, it just takes a while to find the best way for you.
I am a Macmillan volunteer.
Macmillan Support Helpline
0808 808 00 00
7 days a week between 8am -8pm
Thanks for your reply. I think the weather does play a part easier to be positive or at least stay reasonably ok when sun shines
I am lucky enough to have a very supportive husband and we have been able to get out and about.
Hope you enjoy your trip to York. It's a lovely place. I was at university there many years ago!
Thank you for your reply. It's helpful hearing from people who get the anxiety. I guess it is totally unrealistic to expect to just carry on as if nothing has happened. Got to allow ourselves to grieve for the life we thought we were going to have.
I don't think is anyone of us who can say we don't suffer from this fron time to time, I know I do. Never be sorry for your mood or what your feeling, it shows your human and you came to the right place to voice your concerns, we all know the feeling well if we're honest no matter how well we deal with out diagnosis for most of the time.
Just keep putting one foot in front of the other and you will get through, recently it was me that came to the forum for some support, I wanted to argue with myself and everyone around me, the support I got was just what I needed, I dont know my prognosis not because I don't want to know but b cause It helps me if I focus on my treatment and I tend to find friends and family can talk about how my treatment is going and about my scans, and I make plans with the family to do things. I did ask about prognosis, my consultant was willing to discuss but he suggested if I focus on my treatment I would benefit more, I know I'm treatable not curable and that's good because those around me know I can't be cured and I have to live with cancer. I thinks it's an area of discussion that you are in control of so my advice is do what you are comfortable with what makes you happy.
I hope I helped a little but if I haven't at least I've distracted you for a few minutes reading my post.
I hope you have a good day
hi suze99 i sometimes get the, whats the point feeling, and take a day or two off living, which i always regret as its a missed opportunity to do something or see someone you care about i get upset and tearful at some pretty embarasing times, i get frustrated when reasonable questions" medical" get no reply and as for the waiting, its a good job i am bald.i get the never smoked i dont drink i exercise, why me feeling. i look for any sliver of hope knowing there is none but the worst thing is my "terminal" cancer wont kill me, my messed up heart which has somehow managed to give me 50 years i had no right too, has decided to call it a day. does this make me anxious, depressed, frustrated and angry, of course it does but not as angry as wasting what precious little time i have left. take care.