Family and friends
These are just some suggested subject areas for your hints and tips as to how to retain identity and sense of self…different ways to manage a situation.
Advice (for partners/carers/family &friends); Relationships; Children; Practical help and support; Help for carers (financial and practical); Whether to share information; Facing cancer alone.
How "to be" when someone has cancer
To all family and friends Ƹ̵̡Ӝ̵̨̄Ʒ Please listen when we are angry. Hug us when we are sad. Help to make us smile. So the fog will clear when the wind blows. The sun will rise to mark a new day. And together, we will not only survive but we will thrive, because you were there... and My Name Is NOT Cancer!
Always with you...
If ever there is a tomorrow when we're not together... there is something you must always remember - you are braver than you believe, stronger than you seem, and smarter than you think!
But the most important thing is, even if we're apart... I'll always be with you
"love `em - feed `em"
Cooking for someone you love, especially when they are ill can feel rewarding, as you`re being proactive in helping them recover! It`s that 'love `em - feed `em' compusion... however, so many people feel disappointed when the food they`ve so carefully prepared, is then 'rejected' or unfinished, as your special person coping with cancer may not be able to eat what you`ve prepared :(
Please understand this is part of the reality of cancer and treatment regimes! It isn`t anything personal and is as upsetting and frustrating for the person with cancer as much as you!
By knowing this is 'normal' in these cercumstances, you can then 'expect' it to be the case... and that way anything that is eaten is a bonus and reason to celebrate :)
You`re doing great!
Embarrassment (generally mine) caused me to distance myself during my cancer journey, which I guess is normal following any traumatic event, but really doesn`t help matters!
I know this all sounds a bit sad (as I appear lonely and sexless) but I`ve some experience relating to this that may help others get through something similar…
- Firstly, I`d suggest you remember that some people really don’t know what cancer means or feel able to talk about cancer! After all, until diagnosed with cancer, I hadn’t a clue about how cancer impacts on someone’s life, mine or anyone else`s
- Even though you may be in a long term and steady relationship, this lack of understanding can make it tricky when trying to discuss feelings, that (pre cancer) you may`ve been open about
- By ignoring embarrassing things (like the chemo weight, changes following surgery etc) it can lead to mega amounts of mistrust and HUGE barriers can go up where there shouldn’t be any - which can then lead to a real breakdown in communication!
So my advice is:
- If you`re already in a relationship and feel things moving apart, this really is the time to try and discuss your feelings with each other - but don’t be too shocked or upset if you hear something you don`t like! To give you an example, I was expecting my issues to also be issues for others, and was shocked to learn that it was actually my total absorption in everything to do with cancer that was the problem - not the way I looked!
- Be aware that if you`re totally absorbed in being frightened and self conscious, it doesn’t leave any space for you to be “close” to someone, and the very thing you may need (for me it was those “snuggle up” moments) may not be able to happen because of constant fear of rejection! Sorry if that`s a shock, and it may not be like that for everyone, but fear of rejection made me feel that I was being rejected, so I rejected, which led to rejection (talk about a self perpetuating situation - shit!)
- I also really believe that if you`re willing to understand each other’s view of cancer, by being sensitive and working through all the embarrassments and fear, it`s possible to find a new way to be close - and more importantly - for that way to be okay!
So… who knows what the future holds, but when it comes to relationships, whatever that relationship is, honesty is the best policy when you want true intimacy
Knowing what to say...
This is my advice to friends and family who are worried about 'troubling' someone who`s coping with cancer:
- Never be afraid of getting in touch with someone who has cancer (especially if things are not going well or looking good)
- Don`t stay away or be afraid of saying the wrong thing... because, trust me, it`s better than saying nothing at all!!
- 'This place' can be a lonely place, and a nice chat (even about random things) can make all the difference!
- TBH - there`s no right thing to say, but sometimes that fact that you want to say anything at all is right enough... so don`t worry about getting it wrong!
- Don`t ask open ended questions (like 'how are you?') They`re difficult to answer! Be specific. Try: Good/bad day? Is your pain any better? How`re you feeling on a scale of 1:10? Have you been able to do much today? Lets get drunk!?
- ... and believe me when I say that, knowing people care enough to call, can REALLY help someone cope!
Your support is everything!
I hope you will always have support from people.
However, some of you who are sat here, reading this, will have lost contact with friends through your cancer journey(like me) but will also probably have gained new, very special friends, too!
My advice: don`t dwell on the friends who you`ve lost contact with, as that steals your energy (and you need that for this fight!) but keep positive... and spend as much time as possible with those people who mean the most: the ones who`ll always be there when you need them for anything, no matter how big or small!
I`m always driving backwards and forwards to Manchester, Leeds and home (Blackpool) to see friends and family. Whether its just going for coffee, shopping, meals, nights out or even chilling out watching a film... despite my cancer, I make the effort, and as longs as I`m with family and friends... I love it, and I they mean everything to me!
And to all family and friends supporting someone with cancer... your support is everything to that person! Just wanted you to know that!
I think it`s an idea to put some bits together for someone just starting chemo!
I`ve just done it for a friend, and some of the things I bought were a small soft toothbrush, some no chemical dry mouth toothpaste and some no alcohol mouthwash (I`d waited till I had a sore mouth to get these things so wanted them to have them from the start)
I also included moist toilet tissue! (believe me..... VERY IMPORTANT!!!)
My sister has also collected a box of individually wrapped foodie things, as they were told to follow a neutropenic diet right from the start..
Buy things specifically for that person in mind, and include a few "treats" if you can :)
The BUG Blaster!
We`re into the season of coughs and colds... and it`s especially difficult to protect the people we love (who`s immune system is compromised by cancer) but try and keep bugs at bay by having antibacterial hand wash available, and ask all visitors to wash their hands before entering your home! This really helps prevent the spread of infection!
(What about a specially designed antibacterial hand wash called the Bug Blaster for kids... ????)
Children and hospital
Having to spend time in hospital can be increadibly boring and especially so for children! Every minute can seem an eternity and this huge canvern of time can cause loneliness and depression!
Take in a healthy dose of smiles with a collection of books/comics/toys/dvd`s/portable computer games... or anything that may be a helpful distraction! xx
If you`re involved in supporting someone diagnosed with cancer (or any serious illness) I suggest you learn about the type of illness your friend has, the treatments they`ll be given and the most common side effects they may experience. This will help you understand what`s going on and by knowing what some of the words mean, can make it easier for your friend if they need to talk to you about something.
If you want to be a good friend to someone coping with cancer… give them a call but don`t become a telephone pest because talking on the telephone can be really tiring for someone having treatment!
My friend really struggled asking for help and was determined to keep her independence but as she went further into treatment and became increasingly tired, I was glad to be there for her when she needed me!
It can be really hard to ask for help so keep asking what they would like you to do and remember, just because they didn’t need anything last time you called doesn’t mean they don’t need something today, however, you cannot force help onto someone!
Be creative in your suggestions of help...
- Offer to cook a meal or organise a group of friends to join you and create a meal calendar which saves the problem of a dozen meals being prepared on the same day (btw, check what the family like to eat and be careful of food allergies)
- If your friend has children, ask if you can look after them, do the school run or help with homework etc
- Be practical…see if you can help with the ironing, shopping, cleaning or even transport to hospital etc.
The importance of listening
Don't undervalue the importance of listening! The person you are supporting may want to talk about their cancer, what`s happening and how they feel!
They`re not necessarily looking to you for answers, just someone to listen to their concerns!
But it can be really difficult to make time to talk about things that can be hard to hear.
My friend said it was really helpful to not be brushed off and be with someone who believed her feelings had merit!
We talked about everything, including dying! She needed to cover all subjects to help get things straight in her head and I`m glad I was, and continue to be, there for her!
So, please try and LISTEN!!
You DON’T have to fill in the spaces (It's okay to sit and be quiet together!)
Give your support, without overwhelming (by rushing around trying to make everything better!) or by being dismissive (an example: Oh well… let`s change the subject… you`re being silly… etc!)
Just having you listen can be helpful and it'll also help you understand a little of what they’re going through
One final suggestion... laugh, cry, be normal, be yourself, be a good friend, be there!
From a Friend
Chemo and Nutrition... advice from a friend
I wish to share some secondary experiences about chemotherapy.
I am writing secondary, because it's my friends wife that had breast cancer. She had intermittent chemotherapy over a period of 7 years!
During this time, I helped to support my friend and his wife, and we learnt that it is vital to care about nutrition; the minerals and vitamins you give yourself, since the impact of some chemo, can affect this balance, as we all know.
We believe that by getting advice from her doctor, who was able to give us information regarding the use of natural food supplement combined with better nutrition, helped her pass the periods of the chemotherapy, almost without side effects.
I feel I need to share this, since good nutrition really can help play a key role, especially during a treatment such as chemotherapy.
All the best, Josef Koch
Some cancer diagnosis can mean a 4-6 week stay in a side room, unable to venture from those four walls!
It felt like it was a lot of stress on my friends to come and see me, as they were at different universities.
Although I wanted to be treated like normal, it`s frustrating that I couldn`t do anything and that it's always friends coming in, but don't feel bad! If your friends are true, they will be there and contact you regularly. I now realise those friends who forgot about me were never worth the time.
I'd also advise any newly diagnosed patient to give an information book on the cancer and the things that may restrict them, to friends and family. Or...just tell them how you feel...that you really want to be treated as normally as possible.
Life doesn't stop because you`re undergoing cancer treatment. Friends should be able to work around the things you cannot do, and understand it is only temporary.
PS…decorate your room with lots of pictures and photos! It makes it feel more like a bedroom rather than a hospital
When I was diagnosed I was in a relationship with my boyfriend of two years. I found it so hard to continue having feelings for him once the chemo started. It was a mixture of things that did it, my complete outlook on life had changed and I saw him in a total different light. And I didn't want anyone near me because of my low self confidence. I also I had
nerve damage so if someone touched me, I was so sensitive so no-one was allowed near me (which would put a strain on a strong relationship which we definitely didn't have).
At first because I was bald, in a wheelchair and piling on the pounds with the steroids I was on. He stood by me through this and I felt like I almost owed it to stay with him. But little actions that he did and my own realisation that I probably wouldn't be like this forever and he wasn't what I wanted, so we split up! It was the best thing I ever did because things were not right and I was able to do what I wanted.
I think when you get into the frame of mind of facing a horrible illness you realise what you want out of your life and what people you want in your life I lost a lot of 'so-called' friends when I got ill. You realise who is there when you need them most and who isn't.
I also made a hell of a lot within the time I was ill. I know who my real friends are and I wouldn't have it any other way now.
Make friends and talk to people on the ward in a similar situation to you!! I met one of my best mates whilst in hospital and so many other AMAZING people 'my hospital family'. You would be surprised the support and compassion you have for each other. Its really good to share your experiences and talk to someone who is going through a similar thing to you.
Desire overwhelms us; Loneliness torments us; lust drives us; hatred finishes us; Anguish fills us; Sorrow drowns us; Despair empties us; jealousy consumes us; Anger hardens us; Joy delights us; Hope carries us; Faith reassures us; But it is Love, that ultimately bathes and captures us, in its soft glowing light, and reminds us that we are not alone in this world.
I like hugs, like to laugh, watch movies. I love my books and shopping and being close to someone special. I still need to feel loved just as much as I did before I became ill, but please don’t wrap me in cotton wool…I still need to be me. I may be bald and fall asleep when you talk, but keep visiting me, bringing me sunshine in my day and reasons to keep going.
Sometimes I find friends just want to talk about themselves. It's as though avoiding the "C" word or trying to stop me "becoming emotional" is the best thing (they don't want to upset me!) I feel really frustrated at them because I need to talk and sometimes it's as if they are ignoring me! I have so much going through my head and I need to be able to be open and honest about my own feelings!
I spoke to my Macmillan social worker and she was great. She has explained that they may be so overwhelmed about what is happening to me, that they are in some form of denial! She understood why I find it hurts! I've been encouraged to tell them how I feel, explain that I know my situation, know what's happening, and that being able to talk about my illness (when I need to) will help me. It's already made a difference and our relationships have improved. I now find it easier to have fun, as they are being more normal around me. I like laughing and didn’t realise how much it was missing!
There are still some though that are struggling. I have decided to cut them some slack. I guess they are frightened of cancer themselves!
Choosing who to talk to
Don't underestimate the importance of talking to someone. I was lucky to have an open relationship with some really good friends and my folks were great but I still offloaded a lot to a counsellor at hospital. My family worried I was keeping things from them but there were things I didn’t want to talk to them about.
Covering the same ground…
My family need to cover the same ground over and again. I think it's hard for them to sort out their own feelings and they feel really helpless. I try and encourage them to talk to me about their feelings and really appreciate their openness and honesty. We laugh and cry together…both produce tears, so always have tissues handy!
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