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.
Exercise; Sleep; Body changes; Eating well; Complimentary therapies; Professional help/support; Cancer in later life; Socialisation; Self-help.
Simple Baby wash is just perfect for showering - as its gentle on the skin
Have a duvet day!
Duvet days! If you don't feel like doing anything, don't have the energy, or having a down day - grab a duvet, grab a DVD, and stop on the sofa. No one will blame you for taking a rain check on the coffee, or dinner date. You need REST, and when your body tells you to - DO IT!
Gain an appetite...
Tune in to Ready, Steady, Cook (or something similar) This helped me gain an appetite for dinner, with all the cooking & tasting, plus it was good fun to watch!
Also, eat cream cakes and all things fatty!! You need to keep your strength up, and keep your weight at a good pace, so the perfect opportunity (maybe the only in your lifetime!!) Eat lots and lots of fatty foods, cream cakes, crisps, full fat yogurts, and keep your weight at a 'good-un!'
Massage therapy and pain control
If you`re in pain I`d like to suggest having a gentle massage because it can help provide some relief from certain types of cancer pain (such as bone pain) and helps relax any tension in tired and stressed out muscles! Having a massage is also great if pain has prevented you getting any rest because a massage can help you sleep (I dozed off each time I had a massage...it was great!)
You may need written approval from your oncologist because massage increases blood flow and there are certain treatments, such as radiotherapy where you shouldn`t rub the area thats been targeted, as it can irritate the skin and make it sore.
When coping with cancer, MNINC wellness means working within any limitations you may be experiencing and taking small steps! However, it`s important to understand that when faced with any adversity, you need to remain calm and this can mean taking a step back to stay strong, stay grounded... and then pressing on!
A good goal!
When my dad had cancer he set small goals, even if it was just a walk down the street just to breath the fresh air - to "get his blood pumping"! A short distance is better than no distance and walking to a lamp posts is a good goal :)
A Zeal for Zumba!
I've been doing zumba nearly a year now, I sometime have to drag myself there, but it has helped loads and strangely does give you more energy...it has helped improve my stamina (and lose some weight too!) Two of the local zumba classes are run by men, and quite a few men have attended too. The classes I've been to are open to all levels and you can go as slowly or fast as you like. I find the classes during the day time are usually attended by an older audience (and they cope very well with it) and these classes may be suitable for people feeling the affects of cancer as the teacher adapts her lessons to the people who turn up! There are classes available at most leisure centres, health clubs, but also now in local churches and schools. Also, try aqua zumba, it`s great for anyone who might find impact exercise too tough for their joints!
Have a go at Chairobics on Sky! Got it on my planner and do it when I know I should exercise but don't have much energy. Always feel better afterwards. Its on Fitness TV (Sky 282) at 1pm Sundays. Worth checking out!
I was given a 'buddy' by my hospital. It's not an official thing, but I asked the nurses to put me in touch with someone and it was super helpful to have someone who`d been there done that. I hope to do the same for someone else now... Ask if you can have a buddy and I hope this helps you too
What`s a PEG?
A Gastrostomy (PEG) is a small tube which is inserted into the stomach during a small operation, and food suppliments can be given through this tube to help keep your weight steady!
It can sound pretty off putting, however if you`re struggling to keep weight on whilst coping with the side effects of treatment, having a PEG can help you "get past" this grotty phase!
It`s understandable to feel anxious about any surgical procedure however, this is a small op, and look on the good side: suppliments taste pretty awful and if you`re already feeling sick, they can make your nausea worse... having a PEG is a bonus because you avoid the taste of the suppliments!
When you're having chemotherapy remember to slap on sunscreen with a high SPF. With your consultant, discuss how to do this without ending up with a Vitamin D deficiency, like I did!
We hear such a lot about eating well when having cancer treatment, however I wanted to say don`t worry if your taste buds are dictating not -so- healthy foods!
I`ve craved some really wierd things with my chemotherapy, and during one round of chemo, I could only eat onion bhaji`s... for a whole two months!!
Don`t panic if you don`t find healthy food appealing, once your treatment`s finished, your taste buds will change and things will improve :)
Tantalize those taste buds!
We`re all different and have different diet needs especially when we have cancer!
And I think (to be honest) that the info we`re given regarding nutrition can be confusing...
Have you noticed that some people eat what they want and others change their diets completely to try and boost their immune system in their fight against their cancer? One thing I realised is that each of us often need to follow diets that are different from what we may think of as healthy!
For most people, a healthy diet includes lots of fruit and veg, whole grain bread and cereal, some meat and milk products and a small amount of fat, sugar, alcohol, and salt!
Ah, but, when you have cancer, you need to eat to keep your strength to deal with the side effects of treatment… and this is very different from when you or I were healthy because eating enough food wasn`t really a problem (but when dealing with cancer and treatment, this can be a real challenge!)
Having cancer may mean needing extra protein and calories and perhaps including extra milk, cheese, and eggs! If having trouble chewing and swallowing, you may need to add sauces and gravies, or the way your body is reacting to treatment may require you to eat low-fibre foods instead of high fibre!
Is it any wonder you feel confused to know what to do?
My advice: be open to different things because your taste buds will probably be affected by treatment (as mine were) - and do your best!
Eating when feeling like you`re going to be sick? eating with mouth ulcers? ho hum! Try everything to find out what helps you: the ginger, the soups, suck on lollypops, blend, experiment... and do your best!
If you can crack the nutrition thing, it`ll help you feel stronger (honestly!) but don`t be too hard on yourself if things are just too tough! If this is a problem for you, get some advice and help from your oncology team - then tantalize those taste buds and try again!
Been there done that and "ate" the t-shirt!
Float Away :)
If the stress of it all is getting to you, try having a massage as this can really help and if you have peripheral neuropathy, a foot massage or reflexology can help to stimulate the nerves in your feet! You can combine these treatments with aromatherapy and float away on some gorgeous smells :)
What a tonic!
Today is a new day and I feel a bit better! After months of Chemo, my hair is growing back well and I`m booking my second hair trim tomorrow! I`ve been using a good shampoo and tonic that I can recommend if anyone would like the info: The shampoo is by Clynol - Anti Hair Loss - and the second product to use afterwards is a tonic (not a conditioner like you'd normally think to use) It`s also by Clynol - Anti Hair loss tonic! Fab... and I`ve been using both since my last hair trim! It`s working wonders :) Hope you're ok xxx hugs.
Superficial Thrombosis (lumpy veins!)
You might have the same problem I had after chrmotherapy and notice some of your veins feel lumpy and hard! Having had all my chemo using cannulas (I didnt fancy a central line) the blood clotted causing superficial thrombosis, and I just want to let you to know this can take months to improve! However, if you still dont want a central line but are worried about lumpy viens, I found that doing regular "grip" exercises using a power ball has really helped (and if you cant afford a powerball, try squeezing a tennis ball or sponge! They`ll work just as well!) This type of exercise will help your circulation and improve your strength! Good luck
Following my surgery for squamous cell cancer, it took about a year for my swallowing to improve (85%) and important to be able to eat and drink properly again! From my own experience, I know many foods may cause problems!
So my hints include starting recovery with supplement drinks, then purees and then soft foods, especially if you have had treatment to your neck, throat or face.
If you fancy some bread, try crumbling breadsticks which will give you the taste of bread! Also, I love roast pork and crackling but can`t swallow the crackling... however, I found that if you dip the crackling in apple sauce and lick it, you get the taste of the crackling (yummy) without choking!
Chocolate was a massive help when I was having chemo! Not because it's naughty and nice, but it was the only thing I could actually taste!
I found trying to eat things I couldn't taste impossible, so before each chemo session, I would buy a big bag of different types of chocolate, and that's pretty much all I would eat for about a week! (Maybe not the healthiest thing to do, but it worked, and kept my calorie count up and my stomach from rumbling!)
Sucking on a piece of chocolate was also great, when the sore mouth kicked in, because it was soft and easy to dissolve!
Note from MNINC: We advise that a balanced diet should be followed, if at all possible, especially during treatments such as chemotherapy... however if you`re struggling to eat (or have problems with your weight) please get advice from your medical team/nutritionist
A 'Clean' Diet
Even though the nurses had spoken about it at my chemo sessions, I didn’t really know anything about neutropenia… I`d been feeling quite tired which I put down to being my usual mid-chemo session 'run down' feeling, but then started running a temperature of over 39C! I`d picked up an infection from some dodgy food I`d eaten, and had to spend time in isolation hooked up to an IV drip of fluids and antibiotics! I was pretty ill for a while!
As a result, I follow a special neutropenic diet (sometimes referred to as a ‘clean diet’) which I`d like to share with you. It basically means avoiding possible risky foods which are known to contain a higher level of bacteria (not just the dodgy indian, chinese, pizza or occasional kebab!) We all need to eat, and if we are fit and well, our bodies can normally fight the infections... but when having treatment for cancer, its worth taking extra care, especially if your immune system is low!
Here`s my food sheet...
- Water: Choose boiled tap water (home filtered water is NOT infection free) Use this boiled water for drinking, making ice cubes and also in the preparation of food.
- Milk: Choose pasteurised, Sterilised or Long Life (UHT) versions.
- Fruit Juice: Pasteurised or UHT (long life) is okay… but NOT freshly squeezed.
- Yoghurt: Choose pasteurised or UHT (Long life) styles. Under no circumstances use any of the 'live', bio, or live ones containing fruits, nuts or other additions. Avoid all 'bio' yoghurt based drinks or health additives.
- Cream: Use pasteurised or UHT (long life) only.
- Cheese: Use hard cheeses only (Cheddar, Red Leicester etc) Don`t eat any blue veined cheeses (Stilton, Roquefort etc) or unpasteurised cheeses (Brie, goats, Camembert, Parmesan etc). Don`t eat any fresh or frozen cheesecake!
- Eggs: These must always be eaten when cooked with a hard white and yolk. Even fried eggs with soft yolks mustn`t be eaten. Don`t eat any product containing raw egg (eg: souffle, mousse, fruit meringue, mayonnaise, tiramisu)
- Fresh meat must ALWAYS be well cooked (rare beef or pink lamb is not acceptable)
- Cold precooked meats must be bought in ready sealed vacuum packaging.
- Don`t buy 'open' from delicatessens or any other source.
- Always prepare and store meat and poultry carefully (some hospitals can provide you with a copy of the MAFF booklet "Food Safety")
- Avoid ALL pates.
- Poultry must always be well cooked and NEVER be pink due to blood!
- Do not consume hot or cold cooked poultry from retail outlets (which includes takeaways; vans or supermarket rotisserie stands!)
- Only buy precooked poultry in vacuumed sealed packages and never buy 'open' cooked meats from delicatessens
- All fish must be cooked or tinned.
- Under no circumstances eat sushi or smoked salmon, kippers or any other cold smoked fish.
- Eat no shellfish whatsoever (cockles, crab, prawns, mussels etc)
FRUIT AND VEG:
- Do not eat over ripe or damaged fruit
- All fresh fruit must be peeled
- Avoid ALL dried fruits.
- All vegetables must be peeled and cooked.
- All salads must be avoided.
MISCELLANEOUS: All nuts must be avoided either as in packets or included within other products and also avoid
Pepper (black or white - condiment) in any form
And as a final note... if you`re an inpatient and following a “clean” diet, be sure that any food brought in by visitors also follow the guidelines for neutropenia and if in any doubt, ALWAYS consult the medical staff!
NOTE FROM MNINC: Please take medical advice BEFORE following any diet
When I was diagnosed, there was mixed advice about whether or not to eat certain foods. There tended to be an attitude that it really doesnt matter so long as you manage to eat! However it was recommended I read a book called 'Eat to Beat Cancer' by Rosy Daniel and Jane Sen.
Now I`m not saying that it will cure someones cancer but gives good advice on what you can do to eat a healthy diet (which has also been backed up by research!) and are sections on why, how and what to change in the way we eat.
It`s not easy making radical changes to what you eat however I found I had more energy throughout my treatment (which may be coincidence) but may also be linked to eating better! So if you have cancer, or know someone with cancer, then this book is definitely worth a read
Focusing on a positive outcome
I think that as long as you`re not denying your vulnerability, then focusing on a positive outcome can only be helpful (and I think we shouldn’t underestimate the power of our minds to aid our healing!)
When coping with cancer, I was given a CD that claims to combine the science of affirmations and technology, while concealing positive sayings in the sounds of nature, which bypasses our conscious mind and gets straight to our subconscious, which then realigns itself towards the positive messages! Sounds hard work but I found it helpful and used my CD everyday during treatment (and was able to maintain a positive attitude much of the time)
If you want, have a browse through their website (www.kiki-health.co.uk) in the ‘inner talk’ area. The CD`s are not cheap (about £23) but the one on sleep is particularly good
Did yiu know that if you`re in the UK and under 16 and away from school for over 15 days you can get home tuition. I didn’t realise until one of my teachers contacted my mum. Because it`s through the local education authority, its free.
MNINC have checked this out and would like to provide more information:
- Home tuition (up to 10 hours a week) is provided by the LEA in the UK, for pupils under 16 and in full time compulsory education. This will depend on how well you are and if you`re able to get into school at all.
- You may be allocated one or more qualified teachers (depending on your subjects) but they will tend to focus on core subjects such as English, Maths and Science (and whatever subjects they may be specialist in, if that links with your chosen subjects ie Geography)
- The home tutors will link with your school and help you work through the schoolwork that`s been provided.
Some boroughs will allow you to combine home tuition and school, and can work out a timetable that fits in with hospital/treatments etc. Internet and emails are great ways to keep up with schoolwork and some schools will email work to you and you can email completed work back
- If you are looking at home tuition, just a note on health and safety: You are expected to have an adult present in the home throughout the time a tutor is with you. It`s expected you will have an appropriate space to work in, no TV or music, and pets must be kept out the way.
- For more information, contact your school or Local Education Authority.
- Over 16`s are not usually able to access home tuition, but can link with ‘Connexions’ for guidance and support (look on the web for an office near you)
Getting grumpy through lack of sleep
Okay, I`ve posted about steroids and sleep, but these are my suggestions if you still can`t get some zzz`s
- If you are worried, it can stop you sleeping! You know what it`s like… 4am, body desperate to sleep, bed comfy and yet your mind wont turn off! Having cancer can really mess sleep up and we have all been there and understand! Try talking it through with someone- friend, nurse, councillor doctor… it can help. Don’t be some type of super hero and keep things to yourself. There`s nothing heroic about being too tired to do something about it so please, try talking to someone (trouble shared trouble halved and all that...)
- Our feline friends are great however avoid being like them and constantly cat-napping during the day (if you can) Thing is with sleeping during the day, you get used to it even if you don’t actually need it! If you are a regular sleeper during daylight hours, try and limit these catnap sleeps to one or two. Just another suggestion, if you need to sleep during the day, allow yourself 20, 40 or 60 minutes… that way if you do manage to sleep you`re following a recognised optimum time frame of beneficial rest (wow...sounds like I know what I`m talking about but to be honest, I read somewhere that`s what world leaders do to keep going!)
- A bedtime routine can help. Sort of sets the tone! Whatever way you feel may help you “unwind” ( tv, reading, music, a hot chocolate etc) relaxation tapes are helpful but make sure they`ll turn off themselves (I listened to one and the tape became stuck, made an awful racket, just as I`d fallen asleep!) and be careful of the type of book or program yo`re listening to. If it`s really exciting and gets the adrenalin going, it may defeat the object of helping you to sleep!
- Doing “something” during the day and that feeling of having been busy can help. See what your energy is like and perhaps try and get some regular exercise if you can.
- If you a bit older (like me) you may not need as much sleep. Still worth doing all the above because resting and relaxing can all be beneficial especially when fighting cancer (and who knows, the resting and relaxing may even lull you to sleep!)
Hope this helps
Has your appetite has gone? No enthusiasm for food? Here are my hints and tips:
If you haven’t already got one, treat yourself to a really nice plate or bowl that is attractive (perhaps has a nice design) and a size smaller than normal! If you are in hospital, ask if you can bring in your own mug for drinks. I even had my own cereal bowl and spoon with me! Sounds totally weird I know, but I like the familiar feel of my own bowl (it`s comforting, especially with rice krispies in!)
Don’t make it all about the food, so have some music playing quietly in the background (tv can be distracting especially if something gross is on!)
Smells are important and can affect appetite. If this is a problem, try keeping a scent of something you like close by to put on a napkin or a neutralising air freshener block could help.
Don’t rush eating. Drink plenty of fluids (I found a very weak blackcurrant squash or apple juice helped)
Ready meals can be great when the thought of cooking is too difficult!
BTW: Just had a thought for kids struggling to eat; party plates (not the flimsy paper type) would be fun and could help make food more attractive. Saves on the washing up too!
A combination of radiotherapy and chemo left me with mouth ulcers which made eating and drinking difficult. I tried a spoonful of honey (a bit like the song without Mary Poppins) and it was really soothing (Nutritious too). Guess it's okay if you`re not allergic to bees but you should check with your nurses before eating anythinG.
Don’t push yourself
If you're tired, go to bed, whatever time it is... your body knows you more than you think and if you push it too much USUALLY you get sick. I used to always get sick when I had pushed myself to do things.
Listen to happy music and watch happy films when in hospital things that will make you laugh and smile.
Eating and drinking
Eat what you fancy, when you can and keep your fluids up. Don’t get too concerned about your diet just try and have a balance and things in moderation. Sometimes juicing veg or making things into a soup can be helpful!
I have a dry mouth and get thirsty, especially after radiotherapy, so always carry a bottle of weak squash with me, wherever I go. Some supermarkets, sport and camping shops, stock plastic bottles.
Celebrate your achievements
Try making a list of the things you achieve. It may be getting out of bed, dressed, walking, socialising etc. However, also celebrate that which you achieve on days you aren’t feeling so energetic; having something to eat, drink, cleaning your teeth, listened to the sounds of the day!
They are all things to be recognised and be pleased with… because no one knows better that you as to how tired you are feeling…so well done!
Getting quality sleep is important. However, I occasionally have vivid dreams and sometimes, I dream of chemo and that I'm going through it all again. Very strange! I understand it's totally normal… just my mind being weird! I try and focus on other things when wanting to sleep and find listening to quiet music helps. I particularly like a CD called the Rainforest, by Midori :-)
Massage is good for peripheral neuropathy (altered sensation in fingers and feet which can be a temporary side effect of chemo). It can feel a little weird at first but helps the circulation.
PS. Just an extra note: always a good idea to make sure anyone doing massage is trained, as you don’t want to hurt your hands or feet with too much pressure!
My oncology unit offers complimentary therapy. I have a massage at least once a week and have been taught visualisation and meditation techniques too. If you can do a combination (massage and meditation/visualisation) it's SO relaxing! It's good to have some where (a nice place, somewhere warm, perhaps by the sea?) in your mind to focus on as it takes your head away from cancer, just for a while!
I visualise scuba diving, sitting on the sand and watching the pretty coloured fish. My breath sounds are calm and all I hear are parrot fish nibbling on the coral (sounds like little pops and crackles) lovely.
Why don’t you have a go… what is your special place?
I have started Tai Chi. I have no coordination and my balance is shot but everyone there is lovely. My energy is an issue and I get frustrated with myself. The mind is willing but the body just won’t co-operate… so I do some unwritten Tai Chi moves (perhaps I should write the alternative to Tai book!) I have noticed that my sleeping is a lot better (had some problems there!).
I have been doing hydrotherapy with my physiotherapist (I don’t have a central line and no infections :) My muscles are weak following treatment so I've been told it’s a good way to strengthen them. Thought I would just be able to get in and swim but it's not as simple as that… I did a rather inelegant impersonation of a beached walrus! 10/15 minutes and it’s a real workout (but also helps that the assistant is hot…lol) I'm seeing an improvement in my walking and stairs are easier. Even though it takes effort to do… its fun.
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