Practical help needed for 31 year-old

Hi Keller86                                                                                                                                                                                                                                                    I am not in your position but i am in your friends.She is blessed to have you as a friend,there are many on this site who would appreciate such a good pal.Is your friend on this site? she would find so much comfort and support here, people who now what its like to have an incurable diagnosis like me i would help in any way possible.At the moment she is probably  thinking how long have i got left, i have to sort thing out, what about my family and friends,all of these thoughts are going around and around in her head, as for the positive word when you are in our situation you can not see anything in the first few weeks even months as positive, you would be surprised how many people say be positive and you want to strangle them.She just needs time to think things through and get her head around things. Coming on this site and reading other peoples journeys will help her a lot. This site is not all gloom and doom if anything its the opposite. So many funny stories and about how we all deal with cancer.I am in the group for people with incurable cancer and that,s were she might have a look as we are all in the same boat.New treatments are being found all the time there are people on here who have been living bone met cancer for 10 years or more so if she comes on this forum she will see there is more hope than she realises.                                                                                                                                                                                                                              You are doing everything right, you are helping her emotionally that,s the most important thing.As for what can i say or not that,s a tricky one i find my friends who listen and let me ramble on are the ones i choose to contact, just listen. Chemo affects all people differently she may not have bad symptoms so deal with that one when it happens.I don,t know if this has helped i hope it has,she is again blessed to have you has a friend. I wish you all the best x

Hello wino,

Thank you so much for your reply! Anything helps! It's been really helpful to read posts from the group you're in and thank you so much for your comments again.

She's the sort of person that would not tell when feeling down and while she's learning to ask for help and rely on other people, I feel like I'm trying to pre-empt most of the things or support she might need so that I can make her instantly feel better. Hehe. 

Today she mentioned having really dry skin. So I'm going to add another question to my original post: are there any creams that could help? Coconut oil? Almond oil? Shea butter? I'm pregnant and use this for my skin but not sure if there anything more effective for dry, scaly skin.

She also said that food tastes horrible when she has chemo. People have suggested pineapple juice to get rid of metallic taste... Is that a myth or does it actually work?

She's far away from family (they all live abroad) but she does have a good bunch of friends who are very supportive. I've been really happy to hear that she's finding it easy to speak to me, and while I thought I was being absolutely useless, it feels like listening to her vent was exactly the right thing to do! Who'd have thought?! :-)

I've recommended the group for people with incurable cancer, there are some hilarious posts in there which I think would be right up her street. 

Thank you so much for your words of reassurance. I mean, I have to admit I did use the "keep positive" phrase but I'm definitely not making that mistake again! It actually sounds really patronising if I say it out loud. Let's face it, half of us don't know what to say and we just end up talking out of our 'derrieres' most of the time! ;-)

Hey keller86,

She's the sort of person that would not tell when feeling down and while she's learning to ask for help and rely on other people, I feel like I'm trying to pre-empt most of the things or support she might need so that I can make her instantly feel better. Hehe. 

Understanding that it's OK to ask for or to accept help can be the hardest thing to learn for both cancer sufferer and cancer carer. Talking is the real key here. If the two of you could talk openly and freely before cancer, don't let cancer become the wall between the two of you. If I could suggest one thing - don't try to pre-empt everything. In the beginning, I was trying to do this for my late wife, but soon enough she told me (in a nice way) to stop taking all the choices out of her life - that was cancer's job. 

Today she mentioned having really dry skin. So I'm going to add another question to my original post: are there any creams that could help? Coconut oil? Almond oil? Shea butter? I'm pregnant and use this for my skin but not sure if there anything more effective for dry, scaly skin.

When my late wife was having chemo, the nurses warned us that dry skin is a common side effect (along with hand-foot syndrome). They strongly recommended 2 creams - Udderly Smooth and MooGoo (originally developed for the dairy industry to keep milking cows teats supple). Both of these are urea free which is important for chemo recipients (for medical reasons that flew over my head). 

On hand-foot syndrome (HFS), this is a common side effect of chemo where the palms of the hand and the soles of the feet turn red and can become sensitive to the point of being painful. At it's worst, they will not be able to hold a cup or put their feet on the floor due to the pins-and-needles type pain.

They can also develop blisters from HFS. Be very careful with this and DO NOT POP THEM. Popping them opens a direct pathway to the interior of the body for any bacteria or virus that's floating around. All you can do is keep them off their feet and assist where needed until the blisters subside.

Please bear in mind that I'm no doctor - just a carer that has been there, done that. If you go with your friend to her medical appointments, check with the medical staff about possible side effects and what can be done to mitigate against them. Don't stop asking until you and your friend have received answers that you both can understand.

On the subject of medical appointments, if you go with your friend, write down questions you want answers to before you get there and take notes on what the medical staff say. It can get hard to accurately recall what was said, when it was said and by who. I kept a diary that we wrote questions in as they came to mind and hit the medicos with them at each appointment. We also write copious notes as the medico were telling us things (change this med to that med, alter the frequency, modify the dosage, etc.) but we did make them explain why things were being changed and what to expect from the changes.

She also said that food tastes horrible when she has chemo. People have suggested pineapple juice to get rid of metallic taste... Is that a myth or does it actually work?

This is another relatively common side effect of chemo. Margaret's sense of taste went walkabout on several occasions - prawns tasted like they were coated in chili, chocolate tasted like soap and pears tasted coppery. We never found anything to eliminate the metallic after taste but found that some foods were not affected at all. It may turn out to be a hunt-and-peck exercise to find the foods that are palatable for her. Pineapple juice may work as it is the type of flavour that pushes everything else aside; strong, overly sweet and acidic.

Fingers crossed that you and friend find an acceptable path.

Peace,
Ewen :-)

Hi Keller86                                                                                                                                                                                                                                                   I am glad to be of any help,and if your friend wants a chat at any time she can contact me or others and we can have a chat or a moan.The gentleman before was brilliant at answering all of your queries i think i will be asking him for help in future haha.Take care both of you Xx

Hi Wino,

Only in the distorted world of caring can you legitimately start a conversation with the above greeting. LOL.

If you want any info and I have it or can dig it up, I'd be only too happy to help.

Through the kindness of others, I've found that caring extends beyond any disease. My late wife's cancer made me a better man (there has to be a positive somewhere). Feel free to ask away or message me directly.

Peace,
Ewen :-)

Hi Panic                                                                                                                                                                                                                                                        Oh thank you, you are font of information and i will take up your kind offer and add you as a friend many thanks.                        keep well and safe 

As long as you bear in mind that any information I have comes from within the Australian health care system and may or may not be applicable or available in the UK.

Mind you, I'm a little jealous of your Mac nurses. They sound like a brilliant adjunct to home caring.

Cheers,

Ewen :-)

This is sooo helpful Ewen! I've shared the info with her and she's already bought the Udderly Smooth cream - I can also vouch for the miraculous properties of this cream! I used it A LOT when cycling long distances.

Thank you so much for your super helpful comments, really appreciate the time. I'm really sorry to hear about your wife too... xx

Hi Keller86 were do you get the Udderly Smooth cream from i am going to get some in x

Hey wino, 

Found it on Amazon: https://www.amazon.co.uk/dp/B000LNQ90Q/ref=cm_sw_r_wa_apa_i_qQ1DEbGNNT7ZY. 

If you're not one for Amazon then you can also get it from their website: https://udderlysmooth.co.uk/product/extra-care-unscented-moisturising-cream-urea/

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