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My Name Is NOT Cancer

Who are you?

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contribute to Coping with Cancer

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.

Retaining positivity; Living with/after cancer; Self esteem; Self help suggestions for patients/carers/students/parents/adult /pensioners; Ways to maintain identity; Meditation; Visualisation etc.

Weird anti climax!

Despite being happy about successfully completing treatment, there's also a very weird feeling of anti-climax. You're diagnosed with cancer, suddenly having chemo etc - all the tests, side-effects, examinations and then its over and (all being well) you finish everything and that's it, and with luck, this big nightmare/experience is over almost as suddenly as it started!

JW

Experiencing Chemo

During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun... and suddenly you're out. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous!

Melissa Bank

Relish those interludes!

If you get chance, give yourself permission to doodle, wander and be totally unproductive... and relish such interludes in your busy week because it`s the best way to increase your creativity and productivity (even if it`s only by a little bit!) It’s not about where you are today, but where you will reach tomorrow, because YOUR name is NOT cancer! Ƹ̵̡Ӝ̵̨̄Ʒ

Admin

Beautiful in a BUFF

This is one for the ladies:

If you feel you`re losing your identity due to hair loss, try wearing a soft Buff. You can buy them online and there are many different really fabulous designs that can be fashioned in several ways, and they wont irritate your scalp (and you can sleep in one too!)

Finish the look with another scalf (avoid silk as it slips) wrapped round and tied at the back - with the long ends trailing down either side and a slouchy hat (looks stylish and will help to keep the back of your neck warm)

Don`t forget t wear a bit of bling and long earrings are especially good as they give emphasis to your face and will help  you feel feminine!

These are some of the things that helped Meg and I hope you don`t mind me sharing these fashion tips with you, however there are also loads of online "shops" that do pretty scalves etc so it`s worth shopping around to see what you like and what suits you

Fiona (CEO MNINC)

Record each day

Keep a journal or diary: You are fighting Cancer, and although you don't want to think about it now, you might want to in the future! Record each day.

B Castle

Uniquely distinctly you!

I`m the best at being me (so technically I`m the greatest) and so are you! No one has anything on us and they can`t even come close! We`re all created to be the best at being ourselves and despite cancer, we`re custom fitted with skills and courage like no other person! 

There`s no need for comparisons because no two people are alike the whole universe (unless you`ve got an identical twin and even then you`re not the same, because we`re created to be original and we need to love and respect one another... and ourselves!

 So don’t ever feel like you`re less of yourself! You may have changed physically and emotionally but you`re still uniquely distinctly you, and this is exactly the way it should be...  and it`s a beautiful thing!

Rob


 

Being a Blood Donor

I`ve had chemotherapy and before cancer was a regular blood donor, however I`ve now discovered that blood donations are not accepted from cancer survivors, no matter how many years have passed since the end of treatment!

Don`t be disheartened if you can`t give blood, because you can always encourage your friends and family to donate blood on your behalf!

These appeals are really effective from current cancer patients (yes, you can use your cancer card!!) and many people who know you`ll want to do something to help... and even if you aren't going to need blood yourself, it`s cool to know that their donations will help others!

Anon

If you`d like to donate blood on behalf of someone coping with cancer, follow our link to find out how!

Look Good Feel Better

Look Good Feel Better is a cancer support charity that helps women manage the visible side effects of cancer treatment. This beauty charity teachest patients to look well when they feel ill and tired. Check it out!

Becki McGuinness

Good for morale

Ladies AND gentlemen... try Tai Chi and Palates! Both are non impact (which is important with any bone primary or secondaries) and providing you`re careful and have a good instructor (who knows whats going on with you) both can be really good for morale too!

Simon

Lost Libido..

Yes... I`m talking about S - E - X (there you go... I`ve said it!)

For those of us on treatment, our libido (sex drive) can be the first thing that goes, making us feel less than normal in an abnormal situation! This can result in feelings of isolation, anger and resentment, and you feel like you`ve lost your identity!!!

It`s hard to remember the parts of our bodies that used to give us (and our partners) pleasure, when they`ve been affected by cancer...

however, it`s REALLY important to realise that you`re NOT ALONE! Honest!

Don`t be embarassed to ask for advice from a clinical nurse (and ask to speak to someone of the same sex in your healthcare team if that helps overcome any 'cringe worthy' moments!)

Make it your mission (no pun intended) to find out about what support is available... after all, we`re all still sexual beings and despite cancer, entitled to enjoy intimacy (even if it takes some imagination!)

Good luck

Anon

Keep a fatigue diary

Have you seen the fatigue/pain diary that can be downloaded from Macmillan Cancer Support? If you`ve got fatigue (or pain) it`s really helpful to keep a diary and make a record of the daily 'level' (the scale is between 1 and 6) which`ll help you see if things are getting worse or need help/attention from your team!

I found it great, as I had fatigue (which isn`t just being 'tired') and every day sort of got lost into the next and I couldnt keep track as to how things were going! So I hope this helps you too :)

Anon

Collective hints and tips

We are 'The Christie Crew', a group of young people who are receiving treatment on the Young Oncology Unit at the Christie Hospital, Manchester. These are some of our collective hints and tips for coping with cancer. We hope they help

  • Watch funny films when you feel down
  • Paint you nails or do your make up so you feel more glam
  • Try eating something spicy when you feel sick
  • Get a family member to rub your tummy when it gets sore and painful

The Christie Crew xx

Hospices helped me be me!

I`ve been cancer free for 4 years, but when I was going through treatment, I not only had a lot of support from my GP, district nurses and Macmillan… but every Friday, I also went to my local hospice!
There, I had the opportunity to chat with other patients, have complementary therapies, and be involved in loads of other activities which kept me busy and was a welcome distraction from being ill!

I`d always assumed that a hospice was a place where people went when their lives were about to end, but I was wrong! It`s an amazing place and one of the lovely things was that they always had time: to chat; to listen; to help me be me!
Don’t be put off by the name “Hospice” as these places are much more!

Anon

Raising an eyebrow.. or two!

If you`ve lost your eyebrows… don’t try false ones! They`re meant to be fixed with adhesive but I had a disaster in town and lost one! I was horrified! I now used an angled brush (looks like a fine paint brush that’s had the brush cut at an angle) and using a powder, I draw a fine line over my eyebrow arch, with it slightly thicker on the underside nearest the nose! I find using an eyebrow powder is more realistic than a pencil and gives a more natural look. And, if you’ve lost eyelashes, a black khol pencil, carefully drawn on the inside of your eye line, really helps with definition (but don’t poke yourself in the eye!)

All this helps retain positivity when you`re probably feeling pretty horrid. It certainly helped me and I hope my advice is useful! (BTW if you havent the courage to ask for help, theres also plenty of self help books about how to do makeup on Amazon!)

Jackie

You`re not going nuts!!

I would suggest that you will feel a little more in control (and in my case… back to my rebellious self) by understand you`re not going nuts (honestly!) and the anxiety you may be feeling when diagnosed and coping with cancer is not unusual! I also hope that by knowing this, you will find it a comfort (and will talk to someone you trust about your anxiety) as I`d spent three days of agony before telling anyone about it… but I'm glad I did!

Julia

Living with a colostomy

After getting home following surgery for Bowel Cancer, I sat in bed, looked at the colostomy and had a little cry, knowing it was now part of my life! It was a bit like going home with a new baby...scary! But I was determined to still "be me" and not let the colostomy become everything to me! What I`m trying to say is that I understand how difficult this "thing" is- having a bag attached is foreign to what you have ever known before and takes some learning!

Initially I`d some problems with the colostomy bag leaking and assumed it was just part of having to manage a stoma. I did 'mention' it in passing to my stoma nurse at one of my follow up appointments and she made some alterations to the flange (the patch the bag attaches too) and the bag, which really helped... so I suggest you dont presume things are the way they are, because they may not need to be!

I love eating vegetables and soon worked out that I also needed to reduce the amount of fruit and veg I eat, as with oranges and orange juice, they all seem to upset my bowel. You need to work out what is right for you, however it may also be a good idea to only have the one glass of wine if you like to have a drink as acidic foods (and drink) in particular, can cause diarrhoea.

Please dont be disheartened if you need a colostomy, take a deep breath and remember, its probably saved your life so in a way, it is a bloody good friend!

So 'my name is not cancer', in answer to your question: who are you? Since my operation, I`m still me... only BETTER! (and I hope my email encourages anyone else facing a similar situation, that you can do this!)

Best wishes Heather

Support group helped me be myself

I live alone and when I was diagnosed with NHL, I joined a local cancer support group run by the Lymphoma Association.

I know it isn’t for everyone however the support I got was fantastic and it was really helpful being with other people who knew what I was going through.

It helped me be myself and I have made some lovely friends...

I understand there are studies that show the benefits of joining a support group and believe there are quite a few cancer specific groups across the country.

If you haven’t considered it, I would really recommend having a go and then making your mind up... especially if you are on your own and don’t have a huge network of family and friends to support you

DG (London)

 

 

Colour me beautiful!

Cancer can have an enormous impact on the way you view yourself... youre body image!

Sometimes, there`s so many physical changes it`s hard to keep up! One minute you drop weight, the next you could be putting it on!

I found the one off grant from Macmillan really helpful but then struggled with energy to go shopping! Cancer is sucha drag…!

Eventually I bought some really colourful clothes (lots`ve bright tops and funky socks) and because everyone said I looked ‘brighter’ (because of the colours) I felt better in myself!

Colours can really work in helping to lift mood... so think "Hawaii" and wear some sunshiney clothes!

 

Once treatment has finished... follow up fears!

I finished all my cancer treatment and had to see my doctors in follow up clinic. They kept a close eye on me to check out the effects my treatment, but it was also a good way to give me support until I`d got used to going it alone, so to speak!

Having so many people around when going through treatment can lull you into a false sense of security and you can start to depend on that level of support.
Getting back to normal life isn’t as easy as people think it will be (and can be pretty scary!)
You`ll probably be seen every week or so, becoming every few months and then eventually every year.

Thing is, as scary as it is leaving the hospital all that time ago, as soon as you get used to getting your life back, it`s the appointments in follow up that then become scary (the big one is what if the cancer has returned!?)
To be honest, you can feel just like when you were first diagnosed. THIS IS NORMAL!!

Best thing you can do is tell someone close to you how you feel when it`s getting close to your appointment. Just remember, it`s natural for the people closest to you to try and help reassure by telling you not to worry, and that everything will be okay! The intentions are good, but it doesn’t necessarily reassure anyone! So, what to do?

Explain how you feel and help them understand the level of support you need, and how and when you need it. This is important! If they haven’t experienced cancer themselves, how else will they know how best to help you?

Living in recovery or remission is a learning curve for everyone! If you want them to come with you to clinic each time, tell them! And, if you can, talk to the doctors or nurses about your anxiety. They may be able to help.
People say it gets better with time…
No it doesn’t… but you do get used to it!

AtB

Visualisation and Imagery

I came across and now use these suggestions as methods to help with relaxation, especially when patients are facing certain medical procedures that are causing them anxiety. Hope it helps:

  • Sit comfortably (or lie down), close your eyes and breathe slowly. Feel yourself beginning to relax. Give yourself time to do this.
  • Imagine a ball, perhaps a white light, forming somewhere in your body.
  • When you can visualise this ball of energy, take a low breath in and imagine this ball being transported to the part of your body that you may be tense or uncomfortable. When you breath out (don’t blow, breath naturally), picture the air you expel taking the ball away, and with it the uncomfortable feelings.
  • Continue breathing in and out , directing the ball each time and as more tension is “collected” the ball gets bigger until you are then able to blow the ball away from you completely.
  • Take time to enjoy feeling relaxed and don’t rush to get up.

You can use visualisation at any time by creating an inner picture that is representative of your battle with cancer and this may help you when coping with chemotherapy, radiotherapy or other treatment options

RGN

Keep a diary

Write down your memories and diary. This was one of my biggest regrets because my cancer affected my nerves I was unable to keep a diary and I would love to have one just to remind myself of what I went through and how I felt. It's not for everyone but I wish I had done it.

VS

The essence of life

I like this, I hope you do too:

Three men are standing around a vat of vinegar. Each has dipped a finger into the vat and tastes the vinegar. Their expressions show a different reaction to the taste.

The first looks all pinched and sour, the second has a bitter expression, but the third is smiling! The vinegar must taste really horrid, however, by working with, instead of against life’s circumstances, it is possible to change what is perceived as a negative, into something positive! (I bet he pulled a face though, when the other two weren’t looking!)

MF

Who am I?

Honest; cuddly; childish (very); warm; strong; funny; outgoing; determined; an explorer; caring; sensitive; passionate (especially about life); a bit stroppy; intelligent; practical (hands on); open but guarded; unique; reliable; crazy dancer; non judgemental; shy; kind; quick wit; scared; brave; stubborn; protective; loving!

CP

Between a rock and a ….

It is said that however you choose to pray, if you do it to a rock with enough conviction, even the rock will come alive. In the same way, once you chose to commit yourself to being honest and true to the principle of your inner being, whatever that inner being is, even the mountains and valleys will reverberate to the sound of your purpose. Cancer has caused me to question so many things but I'm still me.

J.

Cancer club

I have joined an exclusive club that no one wants to be in-I have cancer! I haven’t chosen it and others may have the same type, stage, treatment etc but my journey, and how I deal with it, is up to me. The choices I make are my own. I will not be dictated to by cancer. Here is my to do list:

  • wake up earlier
  • build strength
  • walk my dogs
  • get a wax
  • eat better
  • start OU course beginners French
  • visit France, Germany, Spain, Scotland, Dublin
  • wash my hair
  • do normal things
  • sort out photos
  • go shopping for clothes
  • get some decent cereal from Tesco!

This is me!

MF

Decisions

I need to decide who I am because I haven’t had chance to find out what I can do yet. I plan to nail this and get on with my life.

I want to run the London marathon!

Anon

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