topic difficult day in Diagnosis and treatment

Hi...from another newbie

smartyaligatorp — Fri, 02 Aug 2013 08:38:53 GMT

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.

Re: Hi...from another newbie

smartyaligatorp — Sat, 10 Aug 2013 11:39:01 GMT

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!!!

Re: Hi...from another newbie

little_stitcher — Sun, 11 Aug 2013 06:14:55 GMT

I'm so sad that you all have to go through this. Hugs, Emily.

Re: Hi...from another newbie

Roni — Mon, 12 Aug 2013 10:43:00 GMT

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

Re: Hi...from another newbie

sharpster8 — Tue, 13 Aug 2013 11:46:00 GMT

God bless you.

Re: Hi...from another newbie

carolc — Mon, 19 Aug 2013 02:22:09 GMT

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..

Re: Hi...from another newbie

carolc — Mon, 19 Aug 2013 02:30:12 GMT

I am so sorry, i posted this in the wrong section... I am so sad to hear what you are going through, hugs to you and your family xx

Re: Hi...from another newbie

smartyaligatorp — Thu, 22 Aug 2013 02:08:33 GMT

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

Re: Hi...from another newbie

smartyaligatorp — Sat, 07 Sep 2013 07:32:04 GMT

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!

Re: Hi...from another newbie

Roni — Sat, 07 Sep 2013 09:43:55 GMT

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

Re: Hi...from another newbie

smartyaligatorp — Mon, 16 Sep 2013 01:27:51 GMT

this is such a dreadful debilitating disease. confusion has taken over his mind. when he is awake which is in short periods of 5 minutes every few hours he is confused, annoyed and in so much pain. nurses come twice a week now for his wound dressings. he won't accept my assistance with offers of food, physical nor emotional support. all the recommendations are to make memories, talk and capture positive moments - this is just so difficult and unachieveable. i don't want to be a victim too - I just want to - goodness...what I want just isn't achieveable anymore.

Re: Hi...from another newbie

smartyaligatorp — Thu, 26 Sep 2013 01:03:47 GMT

The villan was just too powerful my darling....you fought valliantly, ferociously and for so very very long. Go with the angels my love....no more pain. We know that you will always know what you mean to us and how much we love you and we know you did all you could to protect and support us with your love. We love you forever. Death may have taken you from us physically but for all eternity you will never be far from us and will always be with us. xxx

Re: Hi...from another newbie

Roni — Thu, 26 Sep 2013 04:02:40 GMT

It is a horrible disease, but when things are where they are for you it is so very very important to look after yourself. It's not selfish, it is human nature to survive, and you must do that. I won't judge you, far from it, I understand how difficult it is and sometimes the thoughts that come into your head are difficult to comprehend, but don't punish yourself... If you need to get anything off your chest you can call me on .... Thinking of you.

Re: Hi...from another newbie

Roni — Thu, 26 Sep 2013 04:03:41 GMT

My heart goes out to you, and my condolences to you and your family.... He will always be with you....

Re: Hi...from another newbie

purpleangels — Thu, 26 Sep 2013 09:40:32 GMT

G'day Amanda! Love and hugs and support and understanding coming to you......cancer is tough.....and unrelenting! Take care of yourself over the coming weeks and months...it does get easier.......just takes a long time to build a new normal............ I lost my husband in February.......my condolences and may you find some peace now too!! PA

Re: Hi...from another newbie

smartyaligatorp — Thu, 03 Oct 2013 12:12:15 GMT

then today craig's mum passed away. this is all too much!

Re: Hi...from another newbie

little_stitcher — Thu, 03 Oct 2013 12:19:05 GMT

I hurt for you my friend. xx

Re: Hi...from another newbie

purpleangels — Mon, 07 Oct 2013 10:01:18 GMT

Thinking of you......hope you have gotten some rest and peace.........and find some time to laugh in the sadness.......laugh and remember the good times.......it isn't easy at all.....but it does help......a psychologist told me once ( and I have since read this) that laughter and tears come from the same energy.......so i usually start off crying....and make myself remember something hilarious and then cack myself......and then I feel much better!! Weird but hope this help!! PA XXX

Re: Hi...from another newbie

smartyaligatorp — Thu, 07 Nov 2013 09:36:05 GMT

so very alone so tired so sad

Re: Hi...from another newbie

purpleangels — Thu, 07 Nov 2013 09:44:49 GMT

Hey there Smartyaligatorpants! I am sitting in my kitchen willing my daughter to go to sleep so I can go to bed and just collapse in a heap........ Thinking of you and sending positive hugs your way........ Be super kind to yourself!!!! And cry and cry and cry........it will make you feel better and it will pass......... Take care of yourself!! PA XXX