Confused?

Hello

just note palliative care is note just about end of life, it’s about all sorts of support emotional care, pain relief and many other things. I have a palliative care doc, she talks to me about anything and everything, at the moment I am fairly fit and planning my return to work, the palliative care team have been a great help with this. So if you need anything please give them a call.

make everything about memories and happiness, we all have cancer that doesn’t mean mean don’t have life.

Big hugs to both you and you wife and have a great day I have sent you a friendship request all you need to do is accept it if you want to message me outside the public forum I’m happy to help if I can

Donna

Thanks Donna,

yes I have found out all the support that they give & have also found all the nurses, doctors etc, we have met are very supportive in not only my wifes interest but also mine. It was just a surprise when i realised it was end of life care as although i have (thought) I had come to terms with things it took me staright back to the initial appointment when the consultant broke the news of it being incurable. Just a shock really. Thanks for the friend request of which I will take you up on. I am amazed at how many people on here are supportive to others whilst going through their own turmoil. All are hero's. 

Hi

As I’ve said I’m happy to support when I can, if your wife is in a position to chat and wants to tell her to message me, always happy to support carers like yourself. Cancer treatments are changing everyday, you never know when the breakthrough will be made that makes another cancer curable, so I keep hope and live my life. I know it’s difficult at times to be positive but I never give up so if ever you need a chat I’m here.

in the meantime enjoy the day, it’s lovely and sunny here I hope it is where you are, just to make you smile today, I lost my hair when I had my chemotherapy cycles and recently it started to grow back, I measured the hair growth on my head to I have 2 mm lovely, tomorrow it will be a bit longer, funny imagine me standing at the mirror with the tape measure, yes I do and I laugh. My dogs have more hair than I do but I’m catching up.

have a great day hugs 

Donna

Ho Donna

Thanks for your response. You are comical Re:- your hair, great to see you so cheerful. Today our Macmillan nurse has contacted a Prof. at Christies in Manchester who will apparently contact us for an appointment to see if she may be eligible for any Trials going on. However thi

So will also depend on when we get results from London to say if she is eligible for Immunotherapy?

Looks like wheels are in motion. We now have at least in our heads a roadmap of may be or not?

When she feels up to things I'm sure she will contact you albeit at present she is still not the lady she was before she recdeived this horrible news. Still not eating properly whic is getting me worried, although her mood has become far better than of late?

I am watching her eating as if no change in a few days I will contact either Mavmillan or her G.P.

You take care (still laughing about your hair comments) Wish you could bottle your optimism & send us a gallon over? lol

Best wishes.

Steve & Lorraine.

Good morning Steve and Lorraine

I’m pleased my hair comments made you smile, 

when I was first diagnosed my mood was all over the place sometimes I cried sometimes I was angry sometimes just sad, as your wife moves through the process things will improve for her, I bet her biggest issue at the moment is the waiting for answers and the not knowing, I know it was for me. What I can say is be patient with yourself and your wife, the situation will improve. 

regarding Lorraine’s eating, I’ve had a few problems eating, food tastes funny/different so I popped on one of my lovely posh hats and went shopping, I brought all sorts of foods that I wanted to eat, some of my favourites are thick creamy yogurt lovely ice cream fresh ready meals such as spaghetti carbonara and lasagna, it seems I can tolerate these things much better, just to make you smile I have a chat to the items I choose to eat in the shop, I ask them if they fancy helping me to eat, no I’m not mad but you should see other peoples face when they hear me talking to the food. It makes me smile. Anyway what I’m trying to say is I understand what Lorraine is struggling with, so anything she fancies eating at the moment is ok and it’s  better than eating  nothing and loosing weight. Small amounts and more often can be better, I eat about 5 or 6 times a day in small amounts. Can I also advise that Lorraine doesn’t leave this situation any longer if it’s cause for concern speak to your specialist nurse or doctor, please get some support with this sooner rather than later. When I was really struggling to eat my doctor referred me to a dietitian who prescribed something called fortijuice, it’s a concentrated fruit drink, I don’t have them in place of food but in addition to food. Sorry don’t mean to preach, but it so important To keep your strength up. Please remember you need to look after yourself as well, so please make sure you are eating healthy food.

Good luck with any results, take every chance offered for treatment, we all react to treatment differently and with some treatment there are side effects that can make you feel like giving up, but don’t ever give up side effects abate after a few days and you adjust to living with the treatment plan. 

my thoughts are with both of you, I will try and help you get through the rough times and laugh with you in good times and just give some kind words and support if you need it, tell Lorraine I’m here if she needs anything even while she not feeling so good, sometimes a chat with someone going through the same thing can really help, I’m no medical professional, but I am a sensible individual who had good ears and will listen. When I was first diagnosed the people on this forum gave me brilliant support and advise and continue to do so when I need it, because of them I’m in a good place and I can show support for others.

Take care both of you have a great day, I’m here if you need to message.

Donna

Ta Donna you really brighten the day. Thanks for taking the time to post it really is a boost to know that someone is knoiwledgable about what we are going through & are available to discuss matters. You take care This group needs people like you to cheer up someone's dark moments. God Bless. 

Steve & Lorraine

Hi 

As Scrappy Doo says I have puppy power lol that’s where I get my sense of humour. It took me a while to work through my feelings after I was told my diagnosis. I have not asked about my prognosis, I focus on my treatment and doing things that make me happy.

I never have and never will read stuff on Dr Google or the internet in general most of the information is either out of date or incorrect. My specialist nurse said the best source of information is the macmillion site cancer research uk or Roy castle site. I stick to those sites, they lol have good up to date information and that includes information on trials. Your specialist nurse and you cancer docs can also help with trial information. Best advice I can give you is stay away from Google, Scrappy Doo can give you better advice than that. 

If Lorraine has concerns about chemotherapy and wants to chat with me about it I’m more than happy to chat. I never regretted my decision to have the chemotherapy despite my hiccup after the first cycle. Just because I had a hiccup doesn’t mean she would have any problems. I was told I was in control of my chemotherapy treatment so it was my choice to commence it or not or to continue, you can stop treatment at any time as the. Patient it’s completely up to you. What I’m trying badly to say is, she needs to give herself every chance. 

Hugs

Donna

We were nervous about chemotherapy, my husband has just finished 5 courses, 1 more to go.  He has been amazing, he was sick for the first 2 , for a day or so so the hospital gave him a large anti sickness pill which lasts 5 days, he has this when goes in for chemo. It has worked a treat ! Other than a little tiredness he’s great ! Scan after the 3rd has shown the cancer has shrunk enormously!! 

Seems your Husband is a fighter & good luck to him, & long may the cancer stays shrunk. Horrible disease which i would not wish anyone to be afflicted with. My wife is now prepared to try a "dose" of chemo to see how it will/will not affect her too much, if manageable she may well have more. However, still awaiting her Immunology report which will be her 1st option should she be eligible? Best wishes to you Another Day & your Hubby. & thanks for your response.

Again Donna Thanks for your offer of talking which she knoiws about but is at present still anxious of what may or may not be the results of the Immunology report. She is (slowly) getting back to her old self & as you mentioned earlier it does take time. 

The info I have seen on Google is really non important to me as i treat most as nonsense & full of "Quackerey" with Ghouls just after making profits from peoples desperation?

We are supposed to get an appointment this week with a Prof. from Christies Manchester for info on any trials that may be going on, so although initially things looked stark, there is more than at first we thought?

Stay cheerful & keep positive & keep up with your comical stories. Best wishes