Any other parents with young children here?

Hi Scientist44 

Sorry to read about your husband, there are indeed plenty of people with young children here, our son was about 6 when my wife was diagnosed in her case Leiomyosarcoma.

Janice never wanted a prognosis and I really struggled with that. I spent quite a bit of effort thinking about how would I cope without her and given she had quite a few hospital stays in her treatment then the school run and the rest became really difficult. Finally I walked in our local Maggies and cried my eyes out. The helped me realise I needed some kind of break and the easy bet was some time off work. 

Many find the time between diagnosis and getting the information to make treatment decisions really very difficult indeed so I am glad you reached out on here. If you look at our Carers only forum  you will find many great tips and others who have struggled in the past.

You might also like to look at our pages on talking to children and teenagers.as I found that really helpful.

<<hugs>>

Steve

Hi Scientist44 I know it’s hard not to worry but once you have all the scan results back and a treatment plan in place then it will give you an idea of what lies ahead? It’s hard to predict what effect the treatment will have on your day to day lives. I had chemoradiotherapy initially and had early morning appointments so I could go in to work afterwards. Others have had extreme fatigue and sickness and struggled to get out of bed? It’s very much 1 day at a time which I know is hard when you have children to care for but he may be able to do a lot more than you’re anticipating?

I’ve listed this link before but I think it’s a really good one for young children so hope it’s of help?

https://www.bupa.co.uk/health/health-insurance/bupa-cancer-promise/understanding-cancer#:~:text=Talking%20to%20children%20about%20a,you%20can%20give%20them%20afterwards.

Please keep posting and we’ll help and support you both through this wherever we can

Take care

Karen x

Snap… my husbands 41 and we just got the results through the post on Saturday.  Hubby so strong and I am just crumbling.  We gave a daughter but she older… I am feeling your anxious doll too.  So many questions and no enough answers x 

Src60 and kareno62 thanks for sharing your experiences and for the links. They will be really helpful. We’ve talked a little to the kids but without using the word cancer. It’s hard for them to comprehend and at the minute Daddy’s hospital visits don’t seem such a bad thing since the last one we had my mum look after them and she took them to the park and let them have ice cream!

Jane1982 so sorry you are going through this too. The news just turns your whole world upside down doesn’t it? I really struggle with the uncertainty at the moment but hopefully as others have said things get easier with a treatment plan to focus on. 

It’s a roller coaster!  We have an appointment this week.. hoping for a plan of action…  I am lead to believe we are heading for neoadjuvant therapy then surgery but the letter was so vague. I hope your husband gets his results and next appointment soon. ️ Take Care x 

Jane1982 how was your appointment? I hope you have a good team taking care of your husband. My husband has had all his scans done and we are hoping they will discuss his case at the MDT meeting on Monday. So we should hopefully know more soon. The expectation is that we will also be looking at chemotherapy first then surgery. Hugs x

Our meeting was with the surgeon.  I had all my questions ready but really didn’t get the answers I expected.   We weren’t told the size…was told it didn’t matter.  Wasn’t told the stage…nor the type..was told once’s removed it would be looked at. Trying to be positive as the cancer hasn’t moved to other areas.  This week our meetings are with the chemotherapy team and genetics team due to my husband being young.   I am in the uk and I do worry about waiting lists… surgeon did say 12 weeks  . 

Jane 1982 I’m so sorry you didn’t get more info at the meeting. But hang on to the fact that it is localised that is really positive news. Did they biopsy at the time of the colonoscopy? Maybe they don’t have all the info they need until they have the surgical sample? But you would have thought if that was the case they would just tell you that.

Where are you in the UK? Hope you get more answers this week. Keep asking the questions and hopefully someone will give you some more clarity. Also good to know you are getting genetics done - I hope we can too as I do worry that there could be a genetic component and that that could have been passed on to our children.

Hi Jane1982 

He will be able to access it from via his GP . It all gets uploads on the clinical portal .

Most are quite free with this information. Not sure why he was not given it . Great it has not spread but he can call his GP at some point .

Court 

Thanks you,  my husband doctor actually left The tumor is localised but it is threaten an important layer of tissue therefore we believe treatment would be the exact .  So we plan to ask at the next appointment but right now we are trying to get around the thought of what’s to come.