My name is Amanda, have just turned 50, live in Sydney and been married for 25 years.
Hubbie Craig has terminal sqamous cell carcinoma which has metastized into his ribs. Aggressive eruptions occuring over his toes, feet, shin and groin has responded to palliative radio therapy but have continued to grow and as a result they have ended his engagements and are now looking at controlling his pain.
Totally gutted, angry and devestated....he has been under oncology and dermatology treatment for over 30 years and this has erupted and been an issue from Easter this year....to get a terminal diagnosis with no treatment options just wasn't even on our agenda.
I can find limited information on this disease with majority of information available for caught early skin cancers or melanomas.
Just thought I'd post to get some of the pain out of my system.
So hubbie has ended his second (and last) palliative radio therapy. He hasn't moved from the recliner for over 24 hours 😞
He is not eating anything I offer - just gets annoyed when I do, so I have not offered much today just to keep the peace a bit. Endone just doesn't seem to be reducing his pain anymore. We have a 2 storey house with bedrooms and bathrooms all upstairs, so there's not alot we can do other than make him comfortable down in the lounge room - he has the heater on 24/7 so at least he's warm.
Research has found a clinical trial in Qld but he isn't interested and doesn't even want me to check it out - I think he has given up and stopped fighting which cuts me to the bone. I know I should take his wishes and considerations on board, but all I want is for him to be around, healthy and fight this battle. So selfish of me...
I am trying to work as much as I can but of course hubbie's needs are paramount and as there is only a very small family (daughter, self and that's it) it is difficult to organise self, work, schedules and just general shopping etc...we will work through this journey, but geez it's horrid!!!
So sorry to hear about your hubby and yourself and the battles you are going through. My dad was given a terminal diagnosis earlier this year and he has been fighting so hard, but lately he seems to have lost his will, in particular it is after palliative chemo. Usually after about 3 days he perks up a little, I hope that your husband will do the same. Do you have access to palliative care, we are in regional vic and the palliative care team are wonderful and help immensely. Might be worth contacting the local hospital to find out, they come out to the house and organise medications, pain killers etc... Dad is on endone as well, but it does not help his pain so he is on endone now, which he takes as it has a fast effect and then oxycodone in various doses which he takes and they actually take the edge off the pain somewhat overnight so he can get some sleep. If you need to talk, feel free to contact me. xo
My name is Carol and I am a mother of 2 kids (9 &6), I am 43 yrs old and have had genetic testing for MSH2 (lynch syndrome) and BRCA2 which both came back positive. My grandmother, mother and maternal cousin have had breast cancer, onset was in the mid 40's. I have spoken to several medical specialists and it is agreed that my first point of preventative surgery is to have a hysterectomy with removal of ovaries and tubes. I am scheduled to have this procedure in September. However, I am very scared of the 'surgical menopause' symptoms. And i was wondering if anyone has experienced this and if they were able to give me some advice? Any information would be helpful. Many thanks..
thank you for your kind words and thoughts. Craig continues to sleep sleep sleep - he can't get up and about and we're not due to see his oncologist til mid september now.
Community nurses attend 3x week to attend to his dressings so he agrees to bathe on those days = takes about 2 hours to attend before his dressing times.
Prayers with you all during your journeys - may peace and comfort be with everyone during this time. x
No relief. 2 weeks til his next oncologist apt, not eating, not drinking....just exhausted sleep. I'm just so angry with this disease, the effects on those it captures and those surrounding...so so angry!
Anger is something that I understand and agree with, the unfairness of it all... I guess your hubby didn't want to have a go at the clinical trial?
If you need to talk please message me and I'll pass my mobile number on. I can't make the pain go away or be any less but sometimes just having someone to vent the anger and frustration to help.. Roni
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.