Lack of understanding

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In the autumn of 2019 I was diagnosed with stage 3 peritoneal cancer and had various treatments, including chemo over the following year. A year later I was in hospital again with post operation problems from scar tissue resulting in another operation.  A year later, despite being on immunotherapy drugs to keep the peritoneal cancer away, I had breast cancer and a double mastectomy.  I didn’t have chemo despite being offered it; borderline benefits and it makes me so ill - another six months of my life would have been under the cosh.  So I am carrying in with life as normal, reasonably well though the prescribed hormone tablets give me unwelcome side effects.  That’s the context, now here is my rant.  A good number of my family - including my son of 40 and his wife - think I am now OK.  They think remission means I am all but cured and don’t understand my anxieties when I have the three month blood checks including the CA125 cancer markers. Nor do they get it when I am thoroughly tired and not able to do stuff I used to.  I am 72 and though look sprightly do not have the strength I used too. Some friends take the same view. I  have started to have arguments with my son who gets angry when I say I can’t do things like pushing a pushchair or I get things wrong with IT stuff - classic switch of the parent/child relationship. It’s almost like he is saying when did you become a negative dope. A ‘cancer buddy’ who I met in hispital has just died and she was so inspirational.  Her family was so supportive and helpful, though mainly her daughter - is it a male thing with my son? And  some of my friends tell me me ‘we all will die of something” , I.e. you are no different to others.  Maybe I am not. End of rant, I  can’t work it out despite a background as a counsellor. Feel sad and overwhelmed by it all. I don’t want sympathy but I do need positive help to make the best of life in realistic ways. I do say this, but it’s so often not heard. .  Sorry this is long!

  • Hello Glenis it seems our sons (I have two) are born with their own characteristicts and I don't have the experience of a daughter's. My husband although I know he loves me, lacks the same empathy and discernment as my sons. So he's different again. And it's hard to accept that just sometimes when you need them to takeover and make you feel that it's ok. So I understand where your coming from. Like you I was a super active 76 year old untill I was diagnosed in Oct 2022 with NSCLC. Now i am a shell of what I use to be. I do have a group of amazing supportive friends. And my eldest son only lives round the corner and is always there when i need him. My other son lives the 'van life' abroad but he's on the end of a video chat. And says' he's only a flight away! You can join our Chit Chat group. There are many there will be able to support you and you can rant to your hearts content. Take take care and remember you are not on your own although it ay feel that way Judy xx

  • Hi Glenis and welcome, I am sorry to hear of your diagnosis and the loss of your buddy, but can relate to how you get treated by family and friends. I have 2 girls and a boy, all well over 30, the girls are great the oldest lives local and we get on perfectly, my other daughter is a farmers wife with 5 kids and is 15 miles away, we call each other all the time and see each other most weeks, My son if he answer the phone i am lucky. I have 3 groups of friends, my friends from my 15 years in healthcare who are understanding and supportive and my non healthcare friends, lets just say they are a mixed bag, and all my new friends have or have had cancer, as i find it so much easier talking to others who understand. Glenis and Judy much as i would like to sing the praises of men, i can't, sad to say we fall way below the girls when support with cancer is needed. I think we would all like to more than we can, and be more in control of our emotions but i think that's just part of having cancer and life. Surely a counsellor is allowed to see a counsellor, mine is so important to my wellbeing, As Judy says rant away, we all do it. take care.

    Eddie

  • Thanks Judy - really helpful.  Yes, be good to join your chit chat group - how do I do that?  X

  • Thanks Eddie for your helpful and honest reply.  I  have had counselling and think I may go back to it,  I have  a couple of good friends who are understanding and probably I ought to expect less of some other folk.  I have just had another conversation with my son which was a lot more positive - I think he struggles with it all and has a pressurised job and two small children. Sometimes deep breaths are needed and reflection, as well as a rant!  Good to be part of a cancer community. 

  • Hello Glenis, Just seen your post and wanted to say hello. Just post in the Morning chit-chat listing on this part of the site. You don't join anything as such. The chit-chat gets full up and so gets changed every month now as it gets very busy, especially in the morning. Keep posting, always somebody here with a hug, a kind word or some advice. Rainie x

  • Hi Glenis. I struggle myself moving arond the forum But you scroll to the top and click on the lightening symbol. Click on one the people who are in the cit chat conversation and just but in. Any problems that I will ask the expertss in the thread to help you

    Judy

  • Can anyone help Glenis to join the chit chat thread  ?

  • Ah my lovely, what a crap hand you've been dealt!  I get what you mean with your son though, my brother is 56 and autistic, so he doesn't pick up on alot of things. My mum is 77 and she struggles with him a great deal.  Now I have my myeloma diagnosis, he can be good in someways and awful in others. He doesn't get that we can't do what we could do.  The only comfort I can give you in this moment is that there are people here that totally get where you are coming from! You can rant to any of us I think, and sometimes a good rant is needed just to make you realise you are not alone and you are not mad.  Get your support here, there are so many who are willing to give you a virtual hug.

  • Glenis go to the top of the page and click on living with incurable cancer (it’s in bold letters) it will give you a list if you scroll down. Click on Chats and it takes you to daily chit chat. 
    Judy