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My Name Is NOT Cancer

Taking control

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We have received these suggestions to help you retain your identity and sense of self. We hope these comments help retain positivity and increase your self-esteem whilst living with or beyond a cancer diagnosis. 

Sour Candy - worth a try

When I started treatment, I was told some people experience dry mouth as a side effect of chemotherapy. I did!

I tried everything but found that sucking on hard boiled candy sweets helped - and the 'sour' flavours were the best. They really helped combat that lingering metallic taste from the chemo (and also helped my nausea) Hope this info helps 

worthatry

Following a Laparascopic anterior resection for bowel cancer

I was given Oxaliplatin intravenously every 3 weeks for 8 cycles. For the 2 weeks following I had to take Xeloda in tablet form for 2 weeks.

For the first 2 cycles I was given the amount that they had worked out to suit me, but I had terrible side effects from this. I had Peripheral Neuropathy in my hands and feet and even my face, which seemed to get worse by the 2nd cycle. I felt sick all the time, despite taking various sickness prevention tablets. I felt like a weight was sitting on my stomach all the time...

  • One of the things you must do is eat with the tablets, as they only work with food (but I found this extremely difficult)

I also felt like I had the flu by the 3rd day after treatment.

  • My oncologist made sure I had the Oxaliplatin given to me very slowly, over a period of 9 hours, to reduce the side effects (but I was unfortunately cursed with all the side effects!)

During the intravenous treatment, I would progressively experience a tingling in the arm that the cannula was inserted. This was very sore after a few hours and having the cannula taken out and plasters took off was very painful. I would feel like I had a bad burn on my arm.

  • This would last for a few days but would improve each day. 

I had a lot of constipation and sometimes diarrhoea which gave me a lot of pain in the bowel area. One night I had a temperature and a really strong continuous pain in the bowel/stomach area. I was not even able to drink enough fluids or eat any food. I had to stop my tablets for that evening and was taken to hospital.

  • I was given morphine and strong painkillers to take home with me. I was sent home at 2 o'clock in the morning (even though I felt like I was dying and, never one to make a fuss, I did find this difficult!)

By the 3rd cycle, my oncologist reduced the dose of both drugs. I still had the burning sensation during treatment (this was due to leakage from the vein) but some of the other effects were reduced and after the 2 weeks each cycle, I was able to return to my volunteer job as relief manager at my local Hospice shop (which I had previously before cancer)

  • This helped me enormously as it gave me something else to think about and made me feel normal for a week. 

I have now had my 5 years clear. I am picking up my life now although I no longer work (I had to give it up due to family commitments)

There are a few side effects still with me...

  • my joints ache a lot and my bladder has been playing up - but it is a small price to pay to still be here.
  • All the treatment and side effects are all worth it, although this is difficult to see at the time. 

Not all treatments are the same however, as just nine months before my diagnosis, my mother had bowel cancer and I was looking after her and working (I felt so tired! What I didn't know was that I also had the same disease) My mothers treatment was different to mine. She had radiotherapy first then an operation to cut out her tumour, and after three years she was given chemo to shrink a tumour that had developed in her liver. Following this, she had to have 80% of her liver removed. She had very little side effects from her chemo and is still doing very well with no sign of her cancer coming back.

I hope this is helpful to you,

Mrs Gerry Marksteiner

 

Genetic Testing

Genetic testing is putting cancer researchers that little bit closer to a cancer cure and cancer prevention for cancers with a hereditary component. We all hear the news about the latest (and greatest) trend for cancer prevention, what new food to eat (or what to avoid) however one thing we've always known, is that genetics plays a large role in each person's risk of cancer and finding this link prior to a cancer diagnosis could change the world of cancer! Ask about genetic testing now, especially if you have a family history of cancer!

Fatigue tips

If you're suffering from fatigue, try to do a bit of gentle exercise like yoga or walking even if you really don't feel like it. It does help (and also with the nausea) Get your partner/family/friends to drag you out. I do understand as I've just had my 5th chemo this morning (so its on my mind!)

Michelle Whaley

 

Providing for pets if you're in hospital

If you have pets, it's sensible to consider what to do (who'll look after them) if you have to go into hospital even if it doesn't look like you'll have to go into hospital!

Pets pick up on the stress sand anxiety of their owners, so keeping to a familiar routine is always reassuring to any pet in these circumstances, so try asking a reliable neighbour, relative or a friend first (they need to live) as they could help you by feeding, walking, etc!

Also, have a word with your vet, because they may know a local volunteer support scheme and could give you some valuable advice.

Checkout organisations such as the Cinnamon Trust (01736 757900) or the National Association for Registered Petsitters (across the UK) but they may charge for this service :(

As part of the National Assistance Act (1948) your local social services department has a duty to provide care for your pets if you're admitted to hospital and there's no one else to take care of them. It may not be free, but it's worth finding out if they can help!

Get in touch with your vet, the RSPCA or local cancer centre for more advice...

 

What Chemo is like...

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

Flower Power in Isolation!

 If you need time in isolation, have a jug or vase of fake flowers that can be washed/cleaned! These were mine from my transplant two years ago...

Also have photos or posters laminated so they can be damp dusted and wiped as needed. Beats the dull walls of cubicles!

Liz Dando

Chemobrain Card...

Do you have "chemo brain?" Is there such a thing as chemo brain? Ask any person who's had chemotherapy and they will most definately tell you: YES!!!

Were you able to think clearer before treatment started? Are you having a hard time remembering things much more than you use to? Is reading (for any length of time) difficult and do your eyes feel strange (like they're jumping in your head?)

There's now evidence of a link with the chemical affect due to chemotherapy being in the system having a direct impact on the brain, with one of the most noticable being the reduction in concentration and focus, including forgetfulness!
You're not strange if you are experiencing these side effects of treatment however you need to understand - they can take ages to go away!

So, if you have chemobrain, copy and paste the card, insert your photo and name and resize to whatever you want... because if you've experienced chemotherapy, you're officially a chemotherapy survivor! 

 

Chris

Protect your hands and feet!

DID YOU KNOW... that some drugs used in chemo treatments can cause your skin to become dry and irritated, making you prone to infection from even the tiniest of cuts!

Wear gloves and protect your hands and feet (and in this cold weather be extra aware of painful, cracked hands and feet)

Because a low white blood cell count is one side effect of chemotherapy, make sure you`ve plenty of skin and antibiotic creams available, be cautious of all skin reactions and irritations... and treat them before they develop into something more serious!

Admin

Itching that wont go away!

Uncontrolable itching is not only irritating, but can make you feel depressed! Thing is, if you`re suffering from itching, it`s a common problem but can be difficult to cope with because antihistamines don't work.

However, I`ve discovered other treatments that can work...
For itching around a wound, try using moisturising cream or ask your team if they can use hydrogel sheets when doing any dressings
And... test out a TENS machine (Transcutaneous Electrical Nerve Stimulation) Small pads are stuck on the skin which release a small electrical charge, making your skin feel tingly! It works by stimulating the nerves that run up the spine to the brain, blocking the message that says you`re itching, and it really helps!

I`ve also heard some people take antidepressants, although I didn`t try them, so can`t comment.

S

Heat helps!

Hot water bottles or microwave bean bags really helps the aches (I had trouble with my kidneys and leaning on a hot water bottle helped a lot)

B Castle

Layering up!

Wear bed socks & knitted hats! Keep warm, especially in the winter months. Wear layers, and big fluffy slipper socks!

B Castle

Anti Sickness medication

An antiemetic (anti sickness) is a drug that prevents or reduces nausea and vomiting (a really common side effect of some chemotherapy regimes!) They work by preventing the centers in the brain that "feel" nausea from signalling that they`re nauseous. Thing is, these medicines are only really effective if they`re already in your system before you feel sick, because once you`re queezy, it`s too late!

However...because we`re all unique, what helps one person may not work on somone-else, so it`s important to tell your medical team if the type of anti sickness drug you`re taking, doesn`t work so they can change it one that does!

Don`t "tough it out!" Feeling nauseous and vomiting is grim and affects your ability to cope, so follow the directions of your medical team, get an antiemetic that works for you... and keep a constant level in your system - it`s worth waking up for!

Admin

Stressed out?

One reason you may be feeling stressed (apart from the obvious) could be a direct result of having too many thoughts bouncing around your head! I find that choosing my most important thought - and concentrating on it, clears my mind and allows other thoughts to follow...

However being diagnosed with cancer is REALLY stressful and can play a huge part in the ability to cope, can contribute to feeling 'out of control' and cause all sorts of problems!

But what exactly does being stressed mean and what can it do?

Talk to your medical team about stress and they`ll explain stress "can have a biological, psychological and negative effect on your mental and physical well-being" - and knowing that coping with cancer is hard enough they`ll want to alleviate any additional stress as much as possible, so here`s some signs that could indicate you`re feeling "stressed out!"

  • Having memory problems and trouble concentrating
  • Feeling pessimistic, anxious or constantly worried
  • Finding that your thoughts are "racing" or that you`ve started a nervous habit (biting nails, a nervous twitch, rocking, pacing)
  • Feeling moody, irritable, short tempered, agitated or unable to relax
  • Feel overwhelmed by everything
  • Experiencing loneliness and isolation (even when not alone)
  • General unhappiness or even depression
  • Having unexplained aches and pains
  • Troubled by diarrhea or constipation
  • Feeling nausea or dizzy
  • Experiencing chest pain or a rapid heartbeat
  • Have lost your sex drive
  • Feeling run down (as though you`re getting a cold)
  • Eating more or finding you`ve lost your appetite
  • Sleeping too much or struggling to sleep

Just keep in mind that some of these may be a direct side effect of your cancer treatment, however it`s worth keeping your medical team updated on how you`re doing... and by you knowing what to look out for, can help clear your thoughts!

Anon

 

"pop" that vein!

I`ve a fabulous suggestion for anyone having chemo and struggling with veins! Ask your nurse to use a blood pressure cuff instead of a tourniquet (which are sometimes not tight enough!) If they pump the pressure until it`s just above the diastolic (don`t worry, they`ll understand!) it really helps your veins to "pop" and makes the whole thing easier!

Anon

Chemotherapy Induced Peripheral Neuropathy

Chemotherapy Induced Peripheral Neuropathy (CIPN) affects 20/30% of people coping with cancer! It`s caused by certain chemotherapy drugs which can damage nerve cells - causing chronic pain, tingling, and numbness (mainly in the hands and feet although some people have even reported it being in the tip of their nose!)

Having CIPN can interfere with your ability to do everyday things, so it`s important to not ignore any altered sensation in your hands or feet (or nose) Let your team know asap so you can discuss the best way to manage this side affect, or it may interfear with your treatment regime!

Admin

Wheat or White?

A question I`m asked over and again as a nutritionist is which bread is best?  Wholemeal bread helps the digestive system however it isn`t necessarily good for everyone! Anyone suffering with intestine or stomach problems may find wholemeal causes cramps, as it`s difficult to digest! If that happens, use white bread instead and if problems persist, avoid bread altogether! Certain treatment regimes for cancer can really mess with the gut so take advice from your team and it`s then a case of trial and error!

Anon

Losing Your Hair

Trevor Sorbie MBE, the famous hair stylist, cuts cancer patient wigs for free. More information can be found via his charity website www.mynewhair.org

Becki McGuinness

Udderly Smooth Skin!

Some chemo can leave feet and hands cracked and to be honest, applying diprobase twice a day can be really annoying after a time!

Udderly Smooth have some wonderful products and have produced an Extra Care Cream, especially for use in oncology! I have tried it and its just a good after chemo AND radiotherapy!

Also, I suggest you invest in some cotton gloves and booties (from places like Boots or the Body Shop) and then put cream on before going to bed... and let it soak in overnight!

Anon

Juicy Fruit

When you have a dry mouth, try eating fresh juicy fruits as they are really refreshing - and good for you too! Be careful if you have a sore mouth though, as the acid in the fruit might sting... and also take care if you are neutropenic because you must only eat fruit allowed on a neutropenic diet

Julia May

Soft Stuff!

If you have a sore mouth and are finding it difficult to eat, try eating soups and custards as you don't need to chew them. Ice lollies and ice creams help too as the cold neutralised the pain for a while!

Julia May

Crash course to a Bone Marrow Transplant

When you`re told that you need a BMT, it might come as a shock and all sorts of questions come to mind. You can also feel scared, lost and emotional about the unknown!

Some of the question you might think of might include:

How long will I be in hospital?
What am I going to do with my life (because you have to put it on hold)?
What does it involve?
What are the side effects?
How should I prepare?

Then, when you get the basic information, it makes you think of things like:

What about my education/work?
What am I going to do to entertain myself?
How am I going to cope?
What about seeing my friends and family?
Can I personalise my room to make it like “home”?

Everybody has a different experience when having a transplant, so some things I describe might be different. When the time comes, your doctor will go through all the important details you need to know about the procedure, and then you have to sign a consent form. Everybody will have a different treatment plan but similar experience. 
Once you`ve signed up, then everything starts, and your thinking in your mind "wow, what`s going to happen" and you think about a whole load of stuff! This in NORMAL!!

During the transplant, you`ll have a named nurse and are allowed to have two people come in your room, but they have to wear a plastic gown! (I found it pretty strange having my mum dressed in white gown the whole time!) You can have other people visiting you, but they can only see you from behind closed doors.

My transplant started with two days of intense chemotherapy and it felt like a BOGOF (buy one get one free) ... it just didn’t stop! I was very ill with the chemo, but, after all, the aim is to get rid of your bone marrow! I had my transplant at my local Children’s Hospital (I know I wasn’t a kid at the time but I knew everyone and decided to stay!) Then on the third day, I went to Christie Hospital for Total Body Irradiation (TBI). The radiation treatment aims to get rid of your bone marrow (from head to toe) I was there for five days, and had two 20 minute sessions everyday. The radiation can be scary because you can’t see anything. It isn’t like chemotherapy where you can see it coming down your line! During the radiation sessions, you have to lie still and you will occassionally be moved in different positions to get equal exposure. You might have the option to take some of your favourite music CDs to play during the sessions (I highly recommend this!)

After you`ve had your TBI, then you`re "ready" (well as much as you can) for the most important point in you life: to receive the donor cells! It`s a totally amazing time when you see the bone marrow going into your body and you find yourself thinking “this is it, no going back” ...

Then, pretty much it is a waiting game - to wait for your white cells to increase. This was the annoying part and can be really frustrating! One day they go up, then the next day they drop, then they go up... and then back down (and you want is to just go home!)

Just remember, when you receive your bone marrow your neutrophils are none existent (I couldn’t believe this) This means you have to be in isolation and follow a ‘clean diet’! You`ll be on a variety of different medication, such as painkillers, anti-rejection drugs and antibiotics. You`ll also need some blood and platelets until your counts improve. Once your neutrophils reach a certain level, you be able to move to semi-isolation which means you get to go home every so often and you can have more visitors (as long as they`re not ill!)

The main hurdle with a BMT is Graft Versus Host Disease (GVHD) At the beginning, your like “what?” but you soon get used to this term. It mainly affected my skin and stomach (so I loved my hot water bottles, specially the microwave teddies that my mum burst on a few occasions :) oops!)

So here are some of my tips whilst you`re in isolation:

  • Try to have plenty of entertainment because you`ll be in isolation for sometime - depending on your white cells.
  • Before you go in, you`ve the opportunity to stock up on pyjamas! You`ll need loads because you have to take a shower everyday and they can lose colour fast!
  • You might go off your food, so just send your family to get whatever you fancy... even if it isn’t healthy (like crisps and chocolate) but be careful as crisps can scratch your mouth and make the lining sore... check with your nurse!
  • You`re not allowed to have takeaways or anything that is open and in the fridge so I suggest you get the little cheeses and tiny butter packs.
  • When you get home, you still can’t eat anything that`s not fresh... so hands off the leftovers.
  • Take some items from your home to personalise your room, such as bedding, pictures and any gadgets you enjoy.

Finally take it easy!!! You WILL have good days and bad days... but remember, YOU CAN DO IT!!!

Love Leila x

Fatigue Action Plan (FAP)

I had problems with treatment related tiredness and it lasted for several months! I was okay at first but then I felt useless :(

The Radiologist explained I had fatigue, which is a common side effect of treatment, and encouraged me to keep a track of how/when it affected me! We then developed a Fatigue Action Plan (FAP) which I`d like to share.

I was encouraged to:

  1. Take advantage of the best times of the day (so, by making a note of when you`re at your worst can help you organise to NOT go shopping avoiding falling asleep in the cereal aisle!)
  2. Have consistent times for waking up and going to sleep (which helps gets your body clock into a regular pattern!)
  3. Cut back on (but don`t cut out) my favourite hobbies (because they`re the things that keep you normal and motivated... however there`s no point in doing something that makes you feel ill)
  4. Find chances to rest during the day and don`t volunteer for extra duty or responsibility (this is a time to be responsible to yourself!)
  5. Change normal activities so they fit in my resting schedule (although this can be hard if you`ve children at school and have pick them up and drop off!)
  6. Ask (and allow) others to help (especially doing things like the school run/shopping/cleaning... however this can be hard to follow, especially if you`re normally a do-er in the family!)

I`m not saying that the FAP is a cure for fatigue but as an action plan, I found it pretty good! Remember, cancer related fatigue can knock you to your knees! It`s isn`t just relieved by getting more sleep, which can be frustrating! If your doctor doesn’t ask about how your doing (or if you have any side effects) I suggest you speak up... because it`s YOUR responsibility to mention them!

Best wishes

Sleepless in Seattle

Post-it!

One thing I did when I got my radiotherapy dates, was to put each date and time, on a little post-it note, and stick them on the back of my front door!

Then, every time I go to a session, I take that particular one with me!

It's really helped to have something tangible to chart my progress... and to see them disappearing is the best feeling ever!

Hope this suggestion helps (and just letting you know I have 3 radiotherapy sessions to go... but there will only be 2 post-it notes left when I get back later!!)

Jenny G :-)

Powerports

If you`re considering a portacath, and depending on your planned treatment, it might be worth asking about a power port rather than a straight-forward portacath! I`ve a powerport and it allows high speed infusions, so the contrast used in CT scans can go through it, whereas a portacath can`t be used like this! I hate needles, so anything that helps not be stuck with one is a bonus!

Anon

Ground Arrowroot

I`ve problems with wind and diarrhoea during and after my chemotherapy and have found that Ground Arrowroot works wonders. I take a small teaspoon in the morning mixed with squash and that seems to have helped with my wind and also has firmed my number 2's up! It is an old fashioned remedy, but perfectly natural. You can find Arrowroot in the home baking aisle, as you can use it as a setting agent for flans etc. Hope this helps!

Muriel

Message from MNINC: Just for safety, please consult your medical team before taking any remedies, natural or otherwise to prevent possible contra-indications with your treatment regimes

Placing Ports

Having cancer = lots of things to cope with! But there`s nothing worse than having to go through the same procedure twice, if its a question of positioning!

So my suggestion is for all my female friends...

If you need a port, ask for it to be placed by your neck (sort of on your chest) If they put it under your bra line, not only is it really uncomfortable to wear a bra (as it can rub on the cut) it can sometimes flip and you may have to have it moved!

Girlpower

Pleural Effusions

I want to tell you about pleural effusions, as they`re quite common and I`ve had one! I`d been stuck in bed for a while (having heavy duty chemo) when I felt like I`d got a tight band below my boobs and round my back, making breath in difficult!
To be honest, I had a bit of a panic when an X-ray showed I`d got a build up of fluid between the layers outside my lungs, which wouldn’t allow them to fill up properly (and couldn’t be coughed away) and that I`d need a pleural effusion (tap) This is when, under a local anaesthetic, a long thin tube is inserted and positioned between the ribs to where the fluid has built up, and then connected to a bag so it can drain away.

I found sitting up and leaning forward onto a couple of pillows helped me get comfortable, and I used my bed table for extra support!
The area felt cold when they clean the skin and to be honest, the anaesthetic did sting but didn`t last long (the sting, not the anaesthetic!) and really wasn’t as bad as a bee sting!

The worst bit was the thought of what they were doing! However, and I know it sounds like a broken record as I`ve had this advice so many times, but the very best thing you can do, is try and concentrate on your breathing to keep calm (though I know it`s hard, as you can`t breathe in properly, which is why you`re having it done!) but it really does help if you can try and relax. The person doing it will tell you when they need you to breath in/hold your breath/breath out… so be guided by them! You`ll feel what I can only describe as a "pressure" as the tube is inserted (and when they do this it`s important to keep still and not pull away) but the relief of being able to take a deep breath when it`s all in place, is worth the anxiety

So I hope this has been helpful as I`m the world`s worst when it comes to needles, tubes and the like, but please believe me (and be reassured) when I say it wasn’t that bad!

(worldsworstwimp)

Cutting it short

If you`re told you will lose your hair because of treatment, cut it short so it feels like you`re losing less hair when it does fall out! I couldn’t face shaving my head straight away though I had mates on the ward that did! Be prepared though… it`s really cold without hair so make sure you have a soft beanie handy!

Tom

Blood tests before chemo..

If you`re needing chemotherapy, it`s normal to need blood tests before every session to check you`re fit to have treatment. Just an idea... but it may be possible for you to have bloods taken at your GP surgery, 2-3 days beforehand which can save you waiting around at the hospital before your chemotherapy starts. Worth asking your team if you can do this - anything to reduce the time you need to be in hospital!

Anon

 

Double up!

If you`ve lost your hair because of chemo, chances are you`ll feel cold (even when it`s warm outside!) Try wearing two hats, one snug to your head and the other slouchy. This traps a layer of air and keeps your head warm (and if your head is snug your body will feel warmer too!)

Stephen

CT Scan

When having a CT scan, try sucking a fruit pastel! It doesn’t affect the scan and makes the whole process a little better!

Pippa

Tailored to our needs…

Having cancer is a scary time when all you can do is imagine what`s coming... it makes everything so uncertain!

All I can say is, your options may not be totally limited and it`s good to find out what is available to help! It may be a good idea to find someone who can help with stress management, because this is a really stressful time, whether it`s a councillor, doctor, massage therapist, acupuncturist, yoga (ist) etc. (and being under stress can certainly makes matters worse!)

You`ll be monitored each step along the way, and I figure treatments will vary for each of us and they`ll be tailored to our own specific needs (so we`re in good hands!)

So take control... and dont let your imagination scare the shit out of you!

Anon

 

 

Night Sweats after Surgery

I had a mastectomy and after surgery (and the rest...) suffered from hot flushes and night sweats. My tip is to check out what type of mattress is on your bed. I had a memory foam mattress but got rid of it after realising it was making matters worse! I`d tried changing the timing of my medicine around after taking advice from my breast nurse and taking them at night definately helped, but then realised the mattress was also making me too hot and sweaty! I know it seems a lot of expense, but changing my mattress has helped me sleep better and I have a 'Chillow' to hand for the occassional night sweat.

AJ

Avoid the taste of the flush!

During treatment, if you have a hickman line (central line), a portacath or picc lines. I always found that you could taste the flush of the saline when the line was accessed. However, I discovered that if you breathe through your mouth and have your mouth open during the flush you can avoid the taste. x

Kim Rossall

Steroids affect sleep

I`ve always needed regular sleep and have gone through enough things that keep me awake because of cancer, however my experience and advice is that if you need steroids, try and avoid taking them at night or in the evening, as they can really interfere with being able to sleep.

If you`ve been prescribed night time steroids as part of your evening regime, ask your doctor if there is any way they can be altered for the morning instead. (BTW in case you didn’t know…smoking and caffeine keep you awake too...so if you need some zzzz`s , I would also advise avoiding these in the evening, if you can!) Hope this helps xx

Sleepless=Grumpygit xx

Is your food tasteless in treatment?

When I was going through treatment for cancer, I felt pretty weird the majority of the time and either felt like I was going to throw up or just couldn’t face food. I didn’t fancy eating anything and the food I used to like became pretty tasteless!

Chewing was a problem as I had a dry mouth (so no spit!) and my enthusiasm for food was poor (definitely not myself, as I LOVE food!)

To keep my energy up, I tried a few things. Some helped; others were filed away just in case! Here`s my hints and tips if you`re having trouble with taste, feeling sick and dry mouth.

  • Don’t eat greasy food (it increases nausea, sticks at the back of your mouth and makes all your other food taste weird)
  • Marmite is great and strong flavours help! (Hated marmite before everything but totally converted now and can`t get enough!)
  • Don’t add extra salt to food...try different herbs if your good at cooking
  • If I had a bad taste, I would suck boiled fruity sweets or some mints. Munching on ginger biscuits also helped.

And finally, if youre dropping too much weight because you can`t eat properly and have to have the food supplements in a drink, like Ensure Plus, put them in the freezer (not the fridge) as they taste better nearly frozen! Better yet, get some lolly sticks from the supermarket and make ensure lollies so you can suck on them throughout the day

Grace x

A bad hair day

People talk about hair loss as a side effect of chemo but I didn’t lose mine. I sort of built myself up to expect to go bald and was surprised that I didn’t and became worried that my chemo wasn’t working because I still had hair!

My hair did change though and I had some really BAD hair days! It was harder to manage and became really dry. Using a hairdryer made matters worse as it`d then break and my scalp was so sensitive I had to be careful with the type of shampoo I used. I would be worried about brushing my hair just in case I brushed it out! I did buy a wig though, and sometimes felt “safer” wearing it as my own hair looked & felt awful!

Despite not losing my hair, I have finished chemo now and am 18 months down the line :) I`m doing okay and my hair has grown back. We (my hair and I) have become stronger…though I`ve noticed it`s a shade lighter than it was before cancer! Just shows you that hair loss doesn’t always happen with chemo! Anon

Ps Try eating as well as your chemo will allow you to, as a healthy diet helps hair

Mouth matters

Did you know…:
Chemotherapy doesn’t just cause your cancer cells to die, but affects healthy cells too however the good news is that the healthy cells can recover and repair any damage caused, once your treatment`s finished!
It`s because your mouth has such a soft lining that chemo sometimes has a side effect that can be uncomfortable.

The things you can do:
• Because your mouth can become sore and susceptible to ulcers (and occasionally your gums may bleed) check out and inspect your mouth daily! Look out for the areas that may be red, sore, swollen, bleeding or have white patches!
• Clean your teeth (or dentures) at least twice a day (a soft toothbrush is generally recommended but I found an electric one was pretty good)
• Be careful if you floss cos this can cause bleeding gums even when you are very gentle
• Crisps and crunchy food are a nightmare when you have ulcers or bleeding gums though I did find quavers satisfied my crisps urges (they dissolve easily though I also needed a drink with them)
• If your WBC is low (meaning you`re neutropenic), remember that your resistance to infection is also low… and this can increase the risk of fungal infections like thrush (I got it on the insides of my cheeks!) Anti fungal medicine doesn’t taste great but works!
• Try and avoid acidic drinks like orange and grapefruit. I like apple juice but found it helped to water it down! Herbal teas are meant to be really soothing though I didn’t try them myself!
• Chemotherapy can make your mouth dry so always carry a drink with you and if it’s a real problem, talk to your team about artificial saliva or see if there`s something they can prescribe to help.
• Sucking on ice can help
• Try a lip balm to help moisten your lips…especially if you haven’t got much spit
• BTW, if you really can`t eat because you have mouth problems…DON’T SUFFER IN SILENCE!! Tell your team immediately. Leaving the situation hoping it will go away can make things a lot worse. You are not alone!

And finally… Don’t panic! I know these side effects can be very uncomfortable… but they`re usually temporary and disappear once your treatment has finished

anon

Keeping a Symptom Diary

My nurse asked if I would help them control my symptoms and the side effects of chemotherapy by keeping a diary. He suggested that if I made a note of any symptoms that happened before my next does of medicine, it would help my doctors assess if any drugs needed changing if I needed them increasing

We are all different and the way we respond to medicine can vary. I needed and extrat strong anti sickness tablet although my friend K*** was okay on a mild one!

So help control those side effects by keeping a note of how you are doing

J

Staying cool

When you have a temperature, you may start shivering and feel cold. Try to cool yourself down by taking off your socks and put a fan on. Taking deep breaths will also help relax your body for a second. Always let your team know if you have a temperature though, as it may be a side effect or infection, so always best to check!

Akky

Ginger

Ginger can be extremely helpful in controlling nausea (feeling sick) I never liked ginger but my taste buds changed with my cancer treatment and I found ginger biscuits were very beneficial! Perhaps you might also try ginger tea or ginger ale (though the biscuits helped me and satisfied my need to chew!)

Iain (50)

A question of cutlery

If you are having chemotherapy, or other types of treatments, normal metal knives and forks can leave an unpleasant metallic taste in your mouth. Try using plastic ones instead…I found it helped

Mary aged 47

PICC line

I’ve had two of these….I’ll tell you about the second one as I don’t really remember the first (sedation works wonders!)

So yeah, having a PICC line: I’d honestly say, the worst part about it is the numbing injection before (though that might just be because I’m a serious wimp when it comes to injections!) But once that bit is done, the rest is easy!

One thing I would say is, don’t panic! I did, both times; and I got myself into that much of a state, crying everywhere, that I made it worse for myself when really it wasn’t even that bad!

So…….keep calm! They know what they’re doing, and the nurses are sooo nice! You’re in safe hands!

All I can say is …I love whoever invented the PICC line!

SB

Honesty is the best policy

Be completely honest with your doctors (even if you don’t want to be) unfortunately most of the time they do know best. Also, don’t hold back on the embarrassing things e.g. toilet trouble etc. Believe me, they have seen/heard worse!! It`s what they get paid for!! :D

VS

Messy eater!

One of the biggest tips I can give to you is when on chemo you have got to EAT!! Most of the time the last thing on your mind is food, my mum used to force me to eat she used to keep asking and asking and wear me down so in the end I was like "right I will eat something".

I usually had some toast or some crackers or something that would not upset my stomach but I honestly think it worked. If I had chemo on an empty stomach I used to be so sick and if I just had something even a small thing like a glass of milk it seemed to help with the sickness. Obviously hospital food would turn the strongest of stomachs anyway so I would advise bringing some snacky things in when you are on overnight stays. Your taste buds will probably change with chemo and the foods you used to love and vice-versa so satisfy your food cravings when you get the urge so at least you are eating.

I had a central line in my chest and used to stay in for five days at a time. The thought didn't even cross my mind on my first chemo that I was going to be hooked up to a machine for 5 days and so I ended up in the same T shirt for 5 days. I am a messy eater so it was a bit gross just so you know the nurses can do a nifty thing when changing your chemo over if you ask them and they can feed your T shirt through so you can change (girls - layer up if you don't want to be sat there in your underwear!!). And remember, bring your comfiest clothes you got!!

VS

Hair loss

I started losing my hair after the second session of chemotherapy. I was coping with such a lot at this time but to be honest the loss of my hair was the worst! People would try and say the right things (trying to make me feel better) but the truth of the matter was I felt bereaved!

We wear our hair as part of our identity – it shows how we are feeling (good hair day/bad hair day/bed head, etc.). Losing your hair can be a real blow to your Self image (it makes no difference if you're male or female!) Being a bit of a control freak, I cut it off and invited my closest friends round, to help me lose the rest! We shaved it off with laughter…always a good tonic, and it felt so much better, doing something about it.

When my hair started growing back, I went to the hairdressers and had a number 2 cut to tidy it up and then had a leaf pattern shaved on the back…just to be different.

MF

Good veins/bad veins

Always try and be well hydrated and warm when going for blood tests/chemo or other tests that involve needles and veins (doesn’t apply if you have central/pic line) It can help 'plump up' them up and make it easier to stick you!

PS. being well hydrated means NO tea, coffee and definitely NOT alcohol!

SW

Hot skin

If you are having radiotherapy, it`s a good idea to gently massage the treated area with Aqueous cream. Do this from the start and as many times as you can remember. It helps 'cool' the treated area and my skin didn’t get sore… I think it was because of the cream! Just an idea x.

MF

Radiotherapy

Ask the suite you are going to if they have a CD player, and if not, can they get hold of one? Take in some favourite music so you have 'company' when having treatment…and don’t worry…it won't interfere with the machine or your treatment (and may help make the time go quicker!)

MF

Altered taste

Different chemotherapy can leave a metallic taste in your mouth. I found pineapple juice helped, although check with your nurses before eating/drinking anything to make sure it's okay.

FR

Stem cell removal

Harvesting stem cells can be a REALLY long and boring process and depending on how many are collected in the day, you may need to go back! You have to keep the arm which the cells are taken from, as still as possible (because it can interfere with the flow of the line) so can ache after a while, especially in the shoulder and elbow (and my hand went very cold) so try taking a soft pillow (or cushtie cushion) and perhaps a soft glove/ small fleece blanket.

Also..there`s not a lot to do whilst hooked up so take things to keep you occupied (ipod, puzzles, book, etc) last thing…go to the loo b4 you get started as its really awkward when things get going! Hope this helps.

MF

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