Feeling like our life is on hold

Hi Bazza43 

Thanks for posting this as I think your story will echo with many on here. I have been on a cancer journey for about 10 years now but for the last 8 years Janice's cancer has been stable - our new gold standard and we are very much living with cancer.

Of course we have had a few near misses with plans from time to time. With issues with Janice's lungs she cannot fly any more but that does not stop us having holidays in the UK and we recently went to Paris on the train.

When I talked openly about cancer at work I actually found quite a lot of people who came to talk to me afterwards. There is after all quite a lot of us out there really but many try to keep it private. 

You are far from selfish, just like the rest of us doing an outstanding job in dealing with a next to impossible situation.

<<hugs>>

Steve

Thankyou for replying to me i appreciate it a lot. 
You sound like you are doing an amzing job aswell. I have plenty of people I can talk about what im through but not many that understand what I’m goin through if. My job is a hairdresser and I have shared with my clients what is happening with my hubby in case I need time off last minute etc. the only thing with telling them all is they all want to ask how he/ I am and want talk about it all the time but it means I get no mental time off from it. It all comes from a lovely place but it’s exhausting. 
I am Finding it a big help reading posts on this forum  and reassuring that what I am feelin is ok and valid. 

I definitely’get’ the life on hold feeling, that and being constantly in a waiting room.. waiting for an appointment, a result, a diagnosis, a treatment plan, a prognosis..  have you also noticed that when you do tell someone what is happening in your life, they always have a story of someone they know…. I want to cover my ears and scream I DONT WANT TO HEAR..  or is it just me?

I get that entirely . It’s exhausting in a way but also so necessary for all of the tests etc etc. friends mean well but they don’t really understand the gruelling emotionally and physically taxing journey we’re on. I reckon it’s ok to tell them that a bit . I must say , I feel pretty tapped out atm . Such a long battle . Hope you’re ok , sending courage your way . 

Hi, glad you know there are plenty of others going through this bewildering situation. I have a passion for language, words mean so many different things to people. Eg Cancer Journey. I became irritated by journey, irrational but I did. I changed Journey to Experience and it works for me. Another good maxim is "turn should into want and see how it feels'. Hope this helps, all we can do is share. 

Take care

Hi Bazza43

My wife has lung cancer. 8 years ago she had small cell lung cancer. After chemo and radiotherapy she was clear. She now has what they term treatable but not curable. She had chemo and immunotherapy last year. Tumours have grown, so now back on chemo. I feel bad leaving her on her own so home has become an open prison. Second marriage so my chided live 40 minutes away but hers 360 miles. She has never been very social, on the other hand I used to have a large number of friends. I don't get to see my children or friends as I feel tied to the house. I can't discuss it with her as she gets stroppy. I feel totally cut off. I recently retired as she was getting lonely as I worked nights. I seem to have lost all contact with the outside world. I have always been very active and greatly miss all the activities I used to enjoy. I have friends all over that I can't visit.  Places that I hoped to travel to when I retired. None of which are now viable. Sounds like I am whinging  well I am. Following this week's chemo I have been no further than the local shop and up all night on Thursdsy.

All I was trying to say is that I get your situation

Enough from me

Me too! And doesn't it make you feel guilty, even though you know deep down that these are normal and expected feelings. (I'm caring for my dad who has a terminal diagnosis with no treatment options and palliative care)

I'm surprised to find that I'm avoiding meeting friends and if I do I have no conversation and don't particularly enjoy being out. I would normally share everything with good friends but this business is so all-consuming I'm not saying much at all.

Thank goodness this forum reminds us that we're not alone or weird, just trying hard. 

HPT

I can relate to that keeping thoughts to oneself when with friends in a group. I almost sense friends just don't want to hear. The truth is there is little they can say that doesn't grate or appear fatuous. Not their fault at all and have probably done the same. Alone in your head is exhausting. A quick blast on this forum has made me feel almost proud to be weird. Thanks

I have moved back in with my 76yr old mum after pancreatic cancer diagnosis. She has always been one of my best friends but she can be an absolute pain a lot of the time and 100% worse as she has gotten older.

They are allowing her to have folfirinox chemo at 50% strength as she is 41kg currently and I honestly feel so sorry for myself about having to deal with her during it. 

She is very forgetful so I have to explain things over and over. This was particularly  hard on first diagnosis as I kept having to explain what was happening to her and having to judge how straight or how fluffy i needed to be. She also handed everyone over to me to tell them  what was happening so I had to re-live that pain again and again.

She can't tell me what she is feeling like, if she says she feels sick and I ask, do you feel like vomiting, or tiered, or weak, or do you think you are low mood, she just says I don't feel well.

She started itching a month after her stent was put in and I was concerned as it is a symptom of a blocked gall balder. After blood tests came back clear the nurse suggested piriteze. I asked each day if the itch was better or worse. She said it was the same so I stopped the piriteze. then she said it had got worse. I told her we'd have the piriteze again but she needs to tell me if it's better or worse. Every day I asked 'I don't know' I explained I needed to know if it was working or not so we could ask for another solution. Next day 'I don't know'

I am so worried about her side effects from the treatment as I feel like it's going to be a struggle to try and reduce them as she just can't seem to assess what is happening to her.

I have wonderfully supportive friends and family who all tell me I should feel sorry for myself as she's a terrible patent at the best of times and they feel sorry for me.

However, that doesn't stop the gut wrenching guilt I feel for thinking how hard this is on me!

You're not alone in being selfish, and maybe we have a right to be?

Hi everyone update on my husbands treatment. He has now finished 3 months of chemotherapy and 25days of radiotherapy/chemotherapy. The latest scans showed that his primary rectal tumour is ready to removed but the nodules on his lungs are still a concern so they are getting another thoracic consultant to look at them and come up with another treatment plan. This could mean more chemotherapy, radiothErapy and/or surgery on his lungs.My husband is obviously upset at the thought of more chemo

it is my husbands 40th birthday tomorrow so we are having a bit of a party and I’m taking him away for the weekend as we won’t hear any more news for a week or so now.

the cancer battle continues for us, hope you are all doing well and smashing it as always ️