Incurable cancer

Hi Mac,

I’m new me here too, similar diagnosis to yourself, it’s a good crowd in here, all in the same boat. It’s a terrible situation to be in but there is a lot of positivity and support here, most just make the very best they can of each day.  Live life for the moment. I’m here and many others when you need to chat. 

Les

Thanks jvj24601

It just seems to very frustrating at times don't what to do or say when seeing your family in this awful mess I really don't know how they cope trying to keep things on an happy medium 

Hi Scottish Mac, you're absolutely not being selfish. It must have been quite a shock for you, your family and friends. Your emotions will be all over the place but try to stay positive and refuse to give up. 

There are new treatments and trials available regularly so hang on in there and stay in touch with us. 

I was diagnosed in March 2015 and I was terrified and upset because what I had planned for my retirement was gone in a flash. A few months later and my first grandchild was born and I had something to live for. 

There are many people on this site who are going through exactly what you're going through. Some have been given just months to live and are here many years later, thanks to new treatments and new trials coming on board. 

The first months are definitely the worst but as I said previously, hang on in there and get to know the many good people here who are so supportive. I'm sure there'll be others after me coming to reassure you, for some reason it's pretty quiet here. 

Tvman x

Thanks Tvman I know it hard when we're in this situation and I know it will get tougher but it the frustrating when you think of the life we had before cancer was the last thing I expected even though I watched both my parents go through the same my father a young 56 and mother was 85 i just never expected me going the same  thank you 

Hi Scottish Mac, I am also a Scot and we are hardy people, it’s just that you are in shock at the moment and wondering what’s going to happen. When I was first diagnosed, I stopped buying clothes, shoes etc because I thought “what’s the point, it will be something else my husband would have to take to the charity shop”. then some time later, I was lying in bed thinking am I giving up or not, the answer was a definite NOT.
I told my Oncologist I would try anything! Like Tvman and lots of others I am still here after I was told I had 5-7 months, that was in 2013. I would have written exactly what he did about new treatments etc. Can I ask do you have a plan of treatment or palliative care yet? I think once you know what’s happening things improve but never give up. Where there’s Life There’s Hope!

I thought I had sent this last night but then it disappeared and I gave up. To my amazement it was here when I clicked to reply, so sorry it’s late!

Hi Annette  Thanks for the reply, I don't get any treatment yet but it will start within the next couple of weeks, i have spoken to the  Macmiillian nurse and she is a lovely lady told me just pick up the phone if l need anything, you know Annette since l have spoken to you and other lovely people on this site my attiude has changed No l won't give up l like you and others we will take what life throws at us but that does not mean we have to lie down to it, l have a very supportive family and friends who encourage me to make the best of things and that's what I am going to do.  Again thank you for your encouraging words 

Joe xx

Hi Joe, Thanks for your nice comments. That’s great your treatment starts soon. Do you know what it will be yet? Once the first one is behind you, you will get into a routine that will be the new norm and you will get used to it very quickly! It makes such a difference when you have a Plan of Treatment (or action!) laid out. You will probably have good days and bad days. The idea is to do something you like, go out for lunch, go a walk etc on the good days and on the bad days, just rest because that is what your body needs. I do hope the good days will outnumber the bad days.

Please stay in touch and let us know when treatment starts! You can do this! 

Hi Annette, lovely to hear from you, I have been told l will start with Folfox to see how things go and will be able to try new remedies when and if they come along, I think that was what was wrong as at first it was test after test which by the way landed me in hospital because of the pain, but the meds l am receiving now have helped a lot, I like you know about good and bad days l have some now, but my wife helps tremendously keeping my spirits up, we do go out for lunch and walks which is great and rest when I don't feel up to it, I will keep in touch and let you and the other lovely people on the site know how things are going,it's because of you and people like you that my attitude has changed from negative to positive. Thank you again Annette for your encouraging words.

Love Joe xx

Hi Joe, Tests can be a pain (literally!) but necessary so that we get the right treatment. I am so pleased you know a bit more of what’s happening now and what drug(s) you will be getting. At first it feels like being in limbo doesn’t it. I am so pleased you are in a more positive frame of mind and instead of wondering how the family will cope without you, I’d be focusing on doing everything so that you go nowhere, except out for lunch or walks etc that sounds lovely. We were out yesterday with our daughter and 2 of our 3 grandchildren. I now know you have a supportive wife which is tremendous, do you have any family, children or grandchildren? I went to your Profile page to find a little bit about you but you haven’t filled it in yet! Are you a Scot who lives in Scotland or a Scot who lives elsewhere?

Sorry several hours have passed since you wrote but we have painters in atm, so after getting up at 8ish to let them in, we left them to it and went for lunch. When we got back it was a case of moving some of the furniture back and it took forever. I don’t know who was more exhausted! They are back this morning, so I’d better try to get some sleep. I don’t sleep much as I have Neuropathic pain, so this is my time for popping in here, then I do some free jigsaws on an App. I hope you are fast asleep and wake up to a new day!

You are probably still in shock. it took me almost a year to feel myself again but that was also because I had radiotherapy to sort out my shoulder (cancer is also in my bones) and that knocked me for six. Im a year and a half in and beginning to get the measure of it now. Its that old cliche of a rollercoaster but as time goes on you know there will be an up after the down so you can weather the hard parts much better.  

Hang on in there. You are not alone.

I just went to a cancer support group organised by my oncology team that had 50 of us incurables in a room together and it was both heart breaking and encouraging in equal measures. Hearing how some are just starting and some are 15 years + on the road is quite an eye opener. Life has no guarantees for anyone but now you know you know and it can be freeing - I no longer sweat the small stuff and its great!