Community News Blog

Priscilla - admin

Community News Blog

This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.

Latest Entries
  • Are you baking, sipping, munching or brewing for Coffee Morning?

    Hi Everyone,

    As you probably know it's just 2 days until the World's Biggest Coffee Morning and we're getting pretty excited about all the cake eating opportunities coming our way in the next few days.

    What I wanted to know was how will you be celebrating on Friday? Are you having a few friends over for a cake and a gossip? Maybe you've organised an event in your local area? Maybe you're going to M&S to join in the celebrations there? Have you got a celebrity involved perhaps? Tell me all about it in the comments box.

    World's Biggest Coffee Morning is our flagship fundraising event and helped to raise over £8 million last year. With your help we hope to surpass that this year.

    Please tell me all about your Coffee Morning and send any pictures to community@macmillan.org.uk with the subject line COFFEE MORNING 2010 and I'll feature my favourites on the blog next week.

    I'll be hosting a coffee morning at home on Saturday (that way I get 2 whole days of cake!) but I'm still to bake anything, oops...

    If anyone has any amazing cake or biscuit recipes please leave them in the comments box for me! Here's a picture of my last effort:

    Chat to others about Coffee Morning and share tips and recipes at the Worlds Biggest Coffee Morning group or Sign Up to host your own, there's still time!

    Happy baking (and eating!) everyone,

    Rebecca.

  • Duathlon webchat transcript

    Catriona Morrison, triathlete and duathlete

    On Thursday 19 July, we hosted a live webchat with Great British duathlete and Macmillan Supporter Catriona Morrison. Cat has represented Great Britain in both duathlons and triathlons and has brought home lots of medals, including a gold medal at the 2010 Duathlon World Championships in Edinburgh.

    Lots of people came along to ask questions, including many fundraisers planning to do the London Duathlon for Macmillan. Cat answered questions on triathlons, duathlons and Ironman competitions, sharing her tips on training, equipment and mental preparation.

    Many thanks to Cat for her answers, and good luck to all our London duathlon participants!

    You can read more duathlon tips from Cat on our website, or visit her own website at www.catmorrison.com.

    I'm signed up for the London Duathlon in September and I’m in hearing any tips. It's my first one so mostly I'm wondering how hard to push the initial run.

    You should run so that you are comfortable, probably not as fast as in an all-out running race. You need to find a pace where you know that you have more in the tank.

    Makes sense. Is the course quite flat?

    I’m not too sure but, given the location, I imagine that it is flat.

    Someone told me that cycling can actually be bad for you if you're a runner - unless you train the right way. Is this true?

    No at all; cycling provides excellent cross-training benefits and can enhance your running. You just need to make sure that you have a well-fitting bike to start with!

    How soon before a race can you eat? For example, if it starts in the morning, would it still be OK to have breakfast?

    I would have breakfast in the morning - try this out in training. Have your normal breakkie and then see how long it feels for you to be good for exercise. You should always make sure that you have enough energy in the tank - even if you have to get up earlier!

    What breakfast would you typically have before a race?

    I tend to have toast and a banana and some honey; coffee and a sports drink. Everyone is different and this is why you should try things out in training.

    I've been trawling the internet for duathlon training plans for a beginner.  I'm doing the Classic 55k distance at the London Duathlon.  Can you recommend any websites that might be a good place to look? 

    There are lots of good resources - tri247 often has links and the publication Triathlon 220 has good links too. 

    I just wondered if there is an essential equipment/clothing that you couldn't do without for your training and also for the events?

    I can't live without a good pair of cycling shorts to protect my bum in training. For the race, a good pair of tri shorts that you can run and cycle in are great. And a rain jacket this summer...

    I have a hybrid bike, so nothing like a top-of-the-range road bike. Am I putting myself at a big disadvantage by using it for my first triathlon? Should I get a sleeker model?

    I was just going to ask something similar! I did my first tri last year with a mountain bike and felt like every man and his dog was whizzing by on super sleek bikes.

    No bling required! Just a bike that is roadworthy and fits you - if you enjoy the experience you can always think about pimping up your ride later. The best investment is some "slick" non knobbly tires - these will make you go faster! Slicks are a good way of increasing speed for little investment - ask a bike shop, they’ll be able to help.

    Would you also recommend a service before a race?

    Yes, you want to be safe and to be safe for the others in the race too - and to prevent a "mechanical" that would out a dampener on your day.

    Any tips for readying the muscles groups for the transition?

    Move the bike into an easier gear a few minutes before transition to get some more blood flowing and the legs moving faster.

    Any tips to reduce the wobbly legs effect after the transition?

    I'm afraid wobbly legs happen to the very best - the only way to get better is to do some bike-running in training. You may not get better but you will get used to the feeling.

    So both disciplines in the same training session as often as possible?

    Yes, both disciplines in same training session - at least once per week.

    I would love to know how to get more confidence on the bike with descents; I slow down too much.

    Practice makes perfect for confidence on the bike - I think that asking a more skilled friend to let you follow them on the bike and learn by doing is a great way to get better.

    Do you spend an equal amount of time training for running and cycling? 

    I spend more time cycling at the moment, for Ironman, but for duathlon, I also prefer to spend a little more time on the bike, as I can do more without being so beaten as I would get in running.

    A less technical question - what has been your favourite course or location?

    I love any course with hills - I loved triathlon Alpe d’Huez last year and St Croix, where there is a mighty steep hill about half way through the bike section. 

    Tri suits? Are they really beneficial to wear? I'm too scared to even try one because of what I might look like!

    The thing is that everyone goes through the same thing with the tri suit. I would say have a good pair of shorts with a light pad and a close-fitting top. Only invest in a tri suit if you start to take the sport more seriously.

    Is there any other form of exercise that you would recommend to help prepare for a duathlon that doesn't involve running or cycling?  I'm just wondering whether swimming or Pilates would be beneficial to help mix up training. I'm already getting a bit bored of continuously running/cycling and there's still a long way to go!

    Mixing training is always good to prevent injury. Pilates is good for injury prevention, too, and swimming for cardio benefit.  I also use the cross trainer in the gym for a good cardio workout without pounding the legs.

    Do you have a preference over triathlons and duathlons?

    I like them both, although I have to say that I like any event where I am successful! So it depends when you ask me... 

    In a triathlon, do you just pull your riding shorts over wet swimmers and let the wind dry you down?

    I wear a suit that I can run and swim in - so no change required. You can pull on your shorts - it can be tricky when you are wet. The key is that you are happy and confident in what you are wearing.

    I have done a triathlon (Olympic) before and marathons; I feel it's time to attempt an Ironman but I fear the training will take over my life. Realistically, does it?

    The training for Ironman does take more time away from your "life" but you may develop a new kind of social life through Ironman. Like everything, keeping to good schedules will help maintain work-life balance.

    Would it be advisable to try a half Ironman first and build up, or just go for it and do a full Ironman? There's certainly a lot more half Ironman events out there now.

    I have seen people thrive on the challenge of attempting Ironman from not much triathlon experience, but also there are those that gradually build up. The truth is that, as long as the training is in the bank, you can do it either way - some like to take the plunge!

    Could you remind us what the Ironman distance is?

    It’s a 3.8km swim, an 180km bike ride, a marathon, and a long sleep and a beer afterwards!

    Yikes! How do you keep going mentally with all that lot?

    It’s all about focusing on the moment and what you can do in that moment - the trick is one step at a time and not to fixate on how far away the finish line is. 

    I am doing a duathlon in September. Any tips for completing the 10k run?

    Make sure that you have at least a couple of training runs at 10k distance in the bag already. I like to attack the run in bite size stages, and tick off the kilometres as I go. Start conservatively and, if you feel strong, build the pace up as you go.

    The swimming element I find the hardest. I'm a weak swimmer - do you have tips of getting stronger?

    Technique, technique, technique. Find a lesson or a coach or a friend to help you with how you swim  - this will give you the best return on training investment.

    What’s your next race?

    I would love to be racing, but I have had an awful 2012 for various reasons! I have bilateral Achilles problems, which look like I may be racing for surgery in the near future.

    When the going gets really tough, do you have any kind of motivational mottos you say to yourself in your head to help you dig deep and keep going?

    My mantra is: fitter, faster, stronger. I also like to think of a time in a previous training session or race where I have pushed further than I though possible and this pushes me on.

    Would you recommend joining a tri club?

    I love my tri club – organised, structured sessions; great people; misery loves company; and like-minded individuals. Its' a hot pot of ideas and action and advice - so yes! Join a club.

    Who are your top tips for the Olympic triathlon?

    Helen Jenkins and Nicola Spirig - and then the beauty of the Olympics is that ANYTHING can happen!

    Do you have rest days? How important are they to have in your training?

    Rest days very important. Physically, to allow training to sink in and your body to adapt to training, and also, mentally, to have a break. Generally I have a down day every week with light training and a full day off every two weeks. 

    Do you train to music?  If you do, what sort of music would you recommend listening to whilst running?

    I have a pretty crap selection of music! There was a program on the BBC not so long ago that said that 120-140 beats per minute was the way to go. Mine is cheesy chart music (too young, really, for my age) - a good beat that you can loose yourself in! I bought a Glee workout album - very bad but fun to exercise to!

    What is your best song to train to? 

    Florence and the Machine, Dog Days - I love that.

    How do you stop training from becoming boring and monotonous?

    Training can sometimes be boring. I try to change my routes as often as possible and I try to train with others so that there is some more motivation and a social interaction - even if it is at the end of the session as you are too busy trying to breathe during! 

    I’m doing the ultra distance in London. I am a better runner than biker. Should I give everything on the first run (20k)to get good start on the bike, or save a bit?

    Save a bit, as, if you use up too much on the run, your bike will suffer. The bike is the longer proportionally so you need to feel stronger there.

    The bike course is 7 laps of 11k approx. Could you treat every second lap as time trial? 

    Your body will fare better if you are more even paced - bursts of speed will wear you down more. Even stephens is the best way to go and, if you can, build gradually through the bike section if you feel strong. 

    I find pacing myself through the different disciplines hard, too.

    Pacing is a matter of practice. You get to know just how hard you can push one discipoine without endangering the other - its a bit of give and take

    What surface is it best to run on when training? I'd love to just use parks/tracks but usually end up pounding pavements.

    All surfaces are good, as variety will help your proprioception - ability not to fall over! And variety also means strong muscles. However, it is good to find tracks and grass to run on, and try to limit too much pavement-pounding where possible.

    Does it excite you how popular triathlons and duathlons are becoming? It really is an addictive sport.

    It's great to see people embracing any sport - especially kids. But everyone loves their own sport and I think that it is fab to see tri getting some media coverage and being a really good way to raise awareness of charities.

    Do you use protein shakes?

    I do use protein shakes but, as a rule, only after long or intense workouts where I may not be able to have a good meal straight afterwards. A post-training snack with carbs and protein are good for energy replacement and recovery. If you can't afford expensive supplements, chocolate milk is a great option.

    What about those gel sachets? Would you use them?

    Yes gels are good for providing energy in a convenient form during training and racing, but it can be a personal preference. Also, you need to try these things in training before you race with them.

    I'm taking part in a team triathlon with Macmillan. Have you got any tips for a speedy handover?

    Have a chat to your team mates beforehand - if you can, have a look at the handover area, perhaps pick a spot and have a practice. In the actual race, don't get caught up in the adrenaline - slow things down to 80% and do them right and you will not make time costly mistakes 

    I’m also taking part in the team triathlon. With the swim, where would you position yourself when entering the water? 

    Position in the swim very much depends on your ability and confidence as a swimmer. If you are happy to be in the mix, in the turbulence, etc then get in the middle - you may get a good group to swim with and a faster time. If you are not so confident, position yourself at the side so that you have clear water.

    If you could give one piece of advice to Team Macmillan what would it be? 

    Enjoy the moment – there’s nothing quite like crossing the line and having all your hard work come to fruition.

    If you’ve been inspired to sign up for a challenge event for Macmillan, find more triathlon and duathlon events on our website.

  • Guest post: Jellytot83’s chemotherapy survival guide

    Jellytot83  is an Online Community member who posts regularly in the Breast Cancer group. She also has her own blog: http://thelittlestjojo.blogspot.co.uk .

    Woman in waiting room

    I was diagnosed with breast cancer aged 28. To say it was something of a shock would be a massive understatement. I’m part way through my treatment now having just completed 6 cycles of FEC-T chemotherapy and I have surgery, radiotherapy and tamoxifen still to go. When Macmillan asked me to do a guest blog post, I thought about what I would have liked to have read at the start of my journey. I decided that some tips and hints ahead of starting chemotherapy, to alleviate my fears and prepare me, would have been invaluable, so please see my musings below.

    Visit the chemo ward

    If possible, visit your chemo ward before you start treatment. I was able to go to the chemo ward before I had FEC which helped put me at ease, as I really knew what to expect. When I switched to the T at a new hospital, I didn’t know what to expect, and so was absolutely terrified. I had read so many scary stories about T, so I felt as if the chemo nurse was leading me to the electric chair. I had no clue what was going to happen and how I was going to feel afterwards. I know that if I had been to the ward beforehand, it definitely would have helped me.

    Oral hygiene

    First of all, have a read of this helpful link on mouth care and chemo  from Macmillan. Chemotherapy kills off the fast-growing cells inside your mouth, so make sure you visit the dentist before you start to check you don’t have any underlying issues that may become worse during your treatment. Chemo is really a time to listen to your mouth.

    Use a mild, dry toothpaste (I used something called Biotene) and a mild alcohol-free mouthwash. I also used a child’s soft toothbrush and changed the brush every chemo cycle. During the T part of my chemo I developed oral thrush every time I had treatment. It shows itself as a white furry carpet on your tongue, makes everything taste creamy, metallic and disgusting and makes your tongue feel flabby. If you develop these symptoms, speak to your GP, they will likely prescribe Nystatin and/or Fluconazole. I also had a toothbrush set aside (again changed every cycle) specifically to brush my tongue with. 

    The other thing that I found that helped was pineapple ice lollies. Ice lollies are great because they help soothe sore mouths, and also pineapple is a natural cure for oral thrush so you’re getting two benefits with the one lolly.

    One of the side effects I had on T was that the inside of my mouth peeled, I mentioned this to my chemo nurses who suggested Difflam mouthwash, it works by reducing inflammation and also acts as a local anesthetic, causing numbness and so pain relief.

    Food

    It seems logical to say, but eat right, eat healthily. Have a look at this helpful link on eating well  from Macmillan. After you’ve had chemo, don’t eat anything you like. It sounds silly, as you might really be craving a certain type of food, but after chemo is finished, you will forever associate said food with chemo and nausea. Your appetite will be peculiar during chemotherapy, some days you will want to eat everything and the next day you will barely feel like eating anything. Some people gain weight, I lost weight.

    Your taste buds will change. Chemo affects them, and for me the result was that things tasted metallic. Bland food was what I wanted, especially when I felt nauseous. My top cravings were mashed potato, rice, ice lollies and apple purée. I also really wanted pineapple (fresh/chunks/drinks/lollies) – it was one of the foods I could definitely taste. Some people find they like more strong tasting foods like chilli, curry & highly spiced foods because they can actually taste it. In the end, it all comes down to what your body is asking for. 

    I was advised to avoid certain foods (soft cheeses, pâté, shellfish, cured meats, bagged salads, live yoghurts and buffet food) and follow a “pregnancy diet” during my chemo. This is due to your immune system being compromised and therefore your risk of infection being greater. Other people I met were not told to avoid anything, so my advice is just to be sensible.

    Heartburn

    Can be a very common problem. Some people say milk is a good cure, others say it can make it worse; I found it helped me, as did mini milk lollies. I also spoke to my chemo nurses about it and got prescribed Omeprazole. 

    Constipation

    Can be a massive pain in the b*m (ha ha!). Your BCNs can prescribe meds for this or there are natural remedies such as prune juice and kiwi fruit. 

    Water

    Water, water, water. This may sounds boring but it makes such a difference to recovery time. Drink plenty of water before, during and after chemo treatment. It will help to flush the chemo through your system, and will help to keep the bladder from becoming irritated.

    Keep a diary

    Write down how you feel on each day, that way when you have your next cycle, you can look back in your diary and see how you felt last time and you will know what to expect. Plan nice things – using the diary you should know when your body is bouncing back -  see friends, go to the cinema, just be you.

    Red urine

    If you have Epirubicin, don't be frightened if your urine is red or pink tinged, for 1-2 days post administration. This is normal and is due to the red colour of the Epirubicin.

    Hair loss

    Have a look at this helpful link about hairloss  from Macmillan. If you can, try and get your wig ahead of chemo. I also got my long hair cut short pre-chemo ready for the inevitable hair loss, as it was a kind of halfway stage between my long hair and total loss.

    Your hair tends to start shedding around days 14-19 after your first chemo and can be pretty distressing. There are however plenty of good websites out there for buying hats and bandanas. Your eyebrows and eyelashes will also dramatically thin (or you may have total loss). The good news is that my head hair has already started to grow back and now, 5 weeks after my last chemo, it’s about 2cm long all over.

    Nausea

    Take all the anti-nausea medications that you are given as directed - do not wait until you feel sick as by then it will be too late. I did exactly this and was only sick a few times throughout my whole chemo experience. If you do have nausea though, have bland food, little and often. Ginger is good for nausea, ginger biscuits, crystallised ginger, ginger ale, arrowroot biscuits – all helped me. It is very important to eat something (no matter what) and keep hydrated.

    Work

    Some people choose to work during their chemotherapy and others don’t, it really is a personal decision. I’m very lucky in that my work fully supported me throughout my chemo. I was able to be off sick, work from home or go in to work depending on how I felt and that was a massive anxiety lifted off my shoulders. Macmillan provides some very helpful information for both employees and employers.

    Support 

    When you’re first diagnosed it is so totally overwhelming that you don’t know what to do. I joined a couple of forums: Breast Cancer Care, Macmillan and a Young Woman’s group on Facebook and they have been a massive lifeline for me. If you can find a support group in your area, then please join one. I go to a young women’s group once a month which is great because I felt so young when I was first diagnosed and knowing that others of a similar age are out there is a massive help.

    Help yourself to deal with this. Try not to look at the whole picture. Take it one step at a time. Focus on each day at a time; then move to the next day and then the next day. Before you know it, your treatments will be over. I still can’t quite believe my chemo is done.

    One major point though, please remember that everybody is different. Although you can read blogs, join forums etc, you need to remember that the person you are reading about is not you. You need to really take the time to listen to your own body and do what feels right for you.

  • Skin Cancer Web Chat Transcript

    Hello everyone,

    Thanks very much to those of you who came along to our web chat with skin cancer nurse specialist Carol Goodman earlier this month.

    For those of you who didn't make it, here is the transcript which includes some really helpful information about staying safe in the sun for those of you who don't have skin cancer - so don't think it's not relevant!

    I hope you find it useful, and please enjoy the sun safely.

    ----------------------------------------------------------------------------------------------------------


    Q:  Carol, have you found that skin cancers are more common or less common now that people are more aware of the risks and ways to help prevent skin cancers?
    A: Skin cancers specifically Basal Cell Cancers (also known as BCC) are more common than ever. 75% of skin cancers are this type.

    Q: Do you think it's mainly due to better rates of detection/awareness, or because people are taking more risks?
    A: It is probably because we are much more aware, older people are showing the signs of years of not protecting their skin against the harmful suns rays because it was not an issue back 40 years or more. The damage starts in childhood. Also we have a tendency to strip off as soon as the sun appears!

    Q: Are you pleased (like me) that under 18's won't be able to use sun beds anymore?
    A: I am very pleased that the government is limiting the use in younger people; melanoma is very prevalent in those between the ages of 15-34.

    Q: Do you know if there's any research that's shown that certain methods of persuasion work better than others - eg, advertising campaigns in other countries that have effectively helped reduce the amount of skin cancers?
    A: Good advertising definitely works. There is a great way to show us what the sun is doing to our skin: a black light or UV lamp will show up the skin damage which is very good to scare you off. It shows people up to have terrible pigmented marks even when young. These marks then show up as you get older.

    Q: Where can you find a black light or UV lamp to do this?
    A: Dermatology clinics have the black light lamps and imaging systems that can do this.  

    Q: I am pleased to hear of increased awareness and education for children and parents on the risks of sunburn and spotting skin cancer early, but there appear to be too many cases where doctors have missed early signs of skin cancer – is anything being done to address this?
    A: It is often difficult to ascertain what lesions or changes are skin cancer and what is not. Early cancers like BCC (basal cell carcinoma) and SCC (squamous cell carcinoma) are often mistaken for solar lentigo, and psoriasis.

    Q: But what about misdiagnosis of melanoma?
    A: That is a difficult one. Moles can appear benign but are not.

    Q: My hubby has CML (chronic myeloid leukemia) and I have also noticed a hard lump on his right shin and it’s getting bigger but he will not go to the doctor. He loves the sun and I have just got him to use sun screen
    A: It’s good that your husband is protecting himself in the sun. The hard lump could be anything, I suggest you see the GP

    Q: I think we need to educate all parents of the importance of frequently applying sun block to kids when they are outside, even when it is cloudy and a campaign aimed at kids so that it would be a normal part of their life.
    A: Educating sun protection in children is vital and this is being addressed more and more in schools, as well as nursery and pre-nursery. Indeed making us all aware that even on a warm cloudy day you can burn. Applying lotions frequently especially if children are swimming is vital. There are also some new lotions (factor 50+) for children that are coloured pale green.  These show if you have missed a part of the skin when applying the lotion. Very helpful.

    Q: Is there any advice you can give about differentiating between all the different sun creams out there? Does a cheap cream generally mean it's not as effective as a more expensive option, even if the SPF is high?
    A: Cheap creams can be just as good as expensive ones. They are all tested in the same way and use the same rating systems.  The more expensive ones tend to be well known cosmetic brands. High sun protection factor (SPF 30 up to 50+) is good, or SPF15 used very freq. High UVB and UVA 5 star rated are the best. Always use up lotion within 2-3 years and try to get one that protects for both UVA and UVB rays.

    Q: I’m worried about a mole but my GP says it’s fine, what should I do?
    A: Ask your GP to refer you to a dermatology out patient clinic for absolute diagnosis or have it removed by them if need be. It is very difficult to decide if something is a cancer or not.  The National Institute for Health and Clinical Excellence (NICE) has produced guidelines for GP’s to help them with their assessments.

    Q:
    I’ve finished chemo for lymphoma in December, I know my skin is still sensitive, is it best to avoid sun at all cost?
    A: Cover up after chemotherapy if possible. Sit in the shade or stay out between 11-3pm. You can buy special UVA protection clothing, but normal close woven cotton is good too.

    Q: Hi Carol - are there things people should ask their GP before letting them remove a lesion from the skin? Like should they have specific experience in doing this?
    A: Some GP’s are trained to do this if they have a special interest in skin cancers. Ask if they have this specialty as an interest and have they trained to remove lesions.

    Q: What about IPI any signs of it being used more here?
    A: Ipilimumab (IPI) is a monoclonal antibody (MAB). It is being used in Professor Patel’s trial which finishes this July. Used for stage 3 but with very specific criteria.
     IPI for stage four is said to provide a few more months of quality of life. A trial comparing it with chemotherapy ended in 2008.

    Q: My husband is stage 2c and is really well at the moment. We are obviously concerned (understatement!) given his 5 year survival stats. He had no SLNB (sentinel lymph node biopsy) and his last ct (Computerized Axial Tomography scan) was October. Anything we should or can be doing to improve his odds?
    A: We would like to spend time talking with you about this so could you call our helpline 08088080000 and ask to speak to a nurse this may be helpful. We can talk to you in much more detail and specifically to help your husband than this short web chat will permit.

    Q: This is probably a stupid Q, but is there any kind of injection or alternative method of protecting your skin from the sun other than either covering up, or slapping on sun cream at regular intervals?
    A: I’m afraid not. The tried and tested ways are the most trustworthy. If an injection or tablet is ever produced it would have to be trialed thoroughly and to do that it would have to be randomized and controlled over many years. That would mean some of the participants would get a placebo. I am not sure how that would be ethically. If they expose themselves to the sun over many years and assume they are getting protection? I suspect that is not something that could be considered?!

    Q: I thought it was worth asking anyway - you never know, the rate technology/medical science is progressing these days there might be something out there that's in development.    

    Q: What do you think of the lack of scanning available to advance malignant melanoma patient Carol?
    A: Like many types of cancer the need to diagnose really early is vital and is not readily available. It should be as it would save so many lives. Bowel is now checked earlier, if lung, skin especially melanoma, and cervical all were caught early - oh how good that would be!

    Q: Another question on follow up appointments. As I understand anyone with malignant Melanoma gets 3 monthly follow ups for 5 years, but from what I have seen what happens in these follow ups appointments really varies across the country. Some get a full body check; others get a quick 5 mins in/out.
    A: Yes it does vary from place to place. Most appointments should really involve a bodily check depending on the original cancer. Any signs of lymph nodes or other signs and symptoms.

    Q: Would you recommend people had photographs taken of all their moles?
    A: Yes photos are good to keep a record, as is examining moles regularly. You can always photograph your own if you are worried, not all trusts offer this but could always ask

    Q: it's hard to tell if moles have changed I find? What should I look out for?
    A: Yes indeed it is hard to tell – The method of ABCD should be used. See our website on melanoma for this. It stands for asymmetry, border, colour and diameter shows you what to look for

    Q: I have felt that ct (Computerized Axial Tomography) scans with regularity would be more reassuring for myself and my husband.
    A: Given his chances of being stage 4, the earlier this is detected, the better chance he has of receiving ipi (Ipilimumab) or plx (PLX4032 biological treatment) because conventional treatment has to fail first. You can find more information in this journal.

    Q: If someone is diagnosed with melanoma from a biopsy, what sorts of things should they ask their specialist to help them understand the situation? What will happen next? More tests?
    A: It depends on whether it is thin; under 1mm or over 1mm and what stage, if that or later.

    Q: If it's over 1mm what should people ask about?
    A: The stage and thickness of the tumour and the spread, has it ulcerated etc.

    Q: What other reasons other than skin cancer can cause a change in moles - growth or other changes?
    A: There are lots of conditions that can make moles look a little odd that may not be cancer. For example Seborrhoeic keratoses.

    Q: Carol, do you think enough information is provided regarding lymphoedema after lymph node dissection?
    A: I would say more than before but probably not enough. It is a shame because it is a big problem but often can be helped. It’s also common in other cancers breast especially, so clinics tend to be more geared for this.

    Q: I would be very interested in more info on lymphoedema, as I have just had a block dissection and would like to avoid it if possible!
    A: We have booklets available through our helpline or on our website. We can send the booklets out to you if you call the helpline. Booklets are also available on www.be.macmillan.org.uk. Here is a link too.

    Q: Should everyone have a skin cancer specialist nurse?
    A: It is helpful if you have access to a skin cancer nurse specialist/contact.

    Q: Where can people get information and support when dealing with skin cancers and malignant melanoma? Who would you recommend?
    A: I recommend the Macmillan information pages, or the support line for advice and support. The Online Community is also an excellent source of support. Other charities specifically for skin cancer include Skcin, The Melanoma Foundation at St. George's Hospital, and more generally, The British Skin Foundation.

    Q: Where should I go with this my check isn’t until July and I don't see plastic surgeon until June?
    A: You could go to GP or ask to see the specialist earlier.

    Q: I have a specialist nurse but we keep missing each other I have e mailed her but not sure if she can reply to individual e mails?
    A: She should be able to reply to individual emails. Maybe she is not getting these. Often they can go into her spam mail? Try to arrange an appointment first. Don’t be afraid to call her.

    Q: My wound is right on my elbow every time I bend it, it puts pressure on it. Is there anything I can do?
    A: That is difficult. Try to avoid bending it too much in the early stages to permit healing. After a 5-6 weeks gentle exercise and skin care could help.
    Check with you GP or Nurse specialist
       
    If any of you have any suggestions for future web chats, please email me.

  • Benefits webchat 28 February – transcript

    Kath Tindall and Sarah Presto, Macmillan benefits advisers

    Last week, our benefits advisers Sarah Presto and Kath Tindall answered your questions in a live webchat.

    There are lots of benefits available to help support people affected by cancer, but it can be complicated to work out what you are entitled to and how to apply.

    Sarah and Kath answered questions on topics including Disability Living Allowance, Employment and Support Allowance, benefits for carers, and help with heating bills.

    If you’ve got a question about benefits, you can speak to an adviser like Sarah or Kath on freephone 0808 808 0000 (Monday-Friday, 9am-8pm).

    My mum had bowel cancer last year, and has a whole host of health problems with her heart and kidneys, and is diabetic. She is 74 in March and gets high level Disability Living Allowance (DLA) and housing benefit. I am her full-time carer, and I get Employment and Support Allowance (ESA) - is there any other benefits she or I can get without affecting her DLA?

    Depending on your mum’s situation, she may be entitled to Pension Credit and may possibly also be eligible for a Macmillan Grant. You could call our helpline on 0808 808 0000 for a full benefit assessment.

    We have some information on our website about Pension Credit and the Macmillan Grant.

    My mum has recently been diagnosed with breast cancer. She has six months at full pay, then goes down to half pay. Her husband is self-employed. Would they be able to claim any benefits?

    I'm sorry to hear your mum has been diagnosed with breast cancer. It may be worth contacting us on the helpline now so that we can do a benefit check based on her current circumstances. Our helpline number is 0808 808 0000.

    Certainly when your mum is due to go on to half pay as there is a benefit called Employment and Support Allowance that she should be able to claim. We could also do a check to see whether she may qualify for a Macmillan Grant, too.

    We have some information on our website about Employment and Support Allowance.

    Your mum’s husband might also find it helpful to look at our information on working while caring for someone and self-employment while caring for someone.

    I get ESA. I had chemotherapy all through 2011, and I am still recovering. How long can I have this benefit for?

    Do you know if you are in the work-related activity group or the support group? 

    The support group.

    Contribution-based claims are limited to 364 days (unless you are in the support group), but there isn't really a limit on income-related claims. Claimants are normally put through assessments to assess capability for work. If you are in the support group then the assessments are less frequent. 

    I would encourage you to call us if you are worried that your benefit is going to be stopped at any point, or if you receive any correspondence from the Jobcentre.

    Our web page on Employment and Support Allowance also has some information about time limits.

    I get higher rate DLA. If I move in with my partner, will it change?

    DLA is a non-means tested benefit and would not be affected by income or savings, so moving in with your partner would not affect entitlement.

    Our website has some more information on Disability Living Allowance.

    I need to take mum away for a short break. Can you give me some email addresses of people I can write to for help?

    Depending on your Mum's financial situation, she may be able to apply for a Macmillan Grant for a convalescent break. Please call the helpline on 0808 808 0000 to discuss this further.

    Why do you keep telling people to phone the number? Can’t you help here?

    Sometimes we will need to take a lot of financial details from you to work out what benefits you are eligible for - this is why we ask you to phone, so we can go through it in more detail.

    I'm not sure what benefits are available. I get income from my employer via their income protection policy, so I haven't claimed ESA as it felt too messy. Is there anything else I would be entitled too - not necessarily income-based? 

    Do you mind me asking how old you are, please?

    I’m 45. I'm off work on long-term sick and my side effects mean I'm effectively house bound for a week.

    There is a benefit called Disability Living Allowance which isn't means-tested. There is some basic information about this benefit here: www.gov.uk/dla-disability-living-allowance-benefit/overview. If, after reading it , you think it may apply to you, then please phone us on 0808 8080000 for a chat. We could also help you explore whether it would be worth claiming ESA too. Admittedly the benefit claiming process isn't always straightforward, but we can help as much as possible with it. 

    There are two ways of claiming the benefit - one way is based on care and/or mobility problems, which you must have had for three months as result of an illness. 

    There are also some special rules under which the benefit can be claimed, but this is for people with a poor prognosis. Does this sound like something that may apply to you? 

    Would that link include information on Carers Allowance? Husband is self-employed but he’s the only one who looks after me and my eight-year-old daughter. Is he entitled to anything? 

    The government’s information about Carers Allowance is here: www.gov.uk/carers-allowance/overview. 

    To qualify for Carers Allowance, though, the claimant must be caring for someone in receipt of DLA at the middle or higher rate of the care component. Their earnings must be less than £100 each week - so it is possible to work and claim it. 

    This page on self-employment might have useful info for your husband, as might the section on working while caring and the page on Carers Allowance.

    I have secondary breast cancer with spread to the bones, womb and ovary. I am about to start a new job but, after having a bit of a panic attack when asked a simple question on the phone yesterday, I am wondering if I am unable to work, whether I could claim any benefits. I have worked all my life and I am in receipt of a small pension. I am 55.

    If you are not able to work due to sickness and have to give up your job, you may be entitled to claim Employment & Support Allowance and, depending on household income and savings, there may be other means tested benefits which you could access. I would encourage you to call the helpline on 0808 808 0000 for a full benefit check and for advice on Disability Living Allowance. 

    Can I get help with my gas bill? 

    We have some advice online about keeping warm including grants, funds and dealing with energy suppliers. 

    Macmillan have a grant which can help toward fuel bills if there is an increase due to a cancer diagnosis. In order to check whether you would be eligible for a grant, and for other benefit advice please call the helpline on 0808 808 0000. 

    Who is your gas and electric supplier? It may be worth letting them know you have cancer, just in case there is any assistance they can give you such as a cheaper tariff.

    Why have I got a letter telling me that my ESA is being reduced from April 2013, and is there anything I could do about preventing this please?

    Are you having any treatment at the moment? Please would you mind telling me what type of cancer you have? Have they said how much your ESA will reduce to? And did you recently undergo an assessment? Sorry for all the questions - just trying to work out the likely reason as to why they are reducing your money.

    I have just finished six months of chemotherapy (Jun-Dec'12), following surgery for colorectal cancer (Apr'12) and six weeks of radio and chemotherapy (Nov'11-Jan'12). I am due to have surgery to reverse my loop ileostomy at end of March 2013. They did say I needed to have an assessment but then told me I was being placed in a Support Group, I think? Then I heard nothing more. 

    I think you may benefit from phoning our team so that we can help you with this as it sounds as if they may be putting you into the work-related activity group. 

    You may have grounds to appeal against this, and we can help you to identify whether it would be worth doing this - particularly in respect of your impending surgery. Our number is 0808 808 0000 if you want to call us.

    Basically, if you are in the support group then this means that you do not have to undertake any work-related activity and face fewer assessments. The amount in the support group is also higher.

    I was also meant to complete another extensive form which I had been putting off. The initial forms were so convoluted for my chemo-brain that I got a bit stressed out. 

    I know that form! We can help you with that over the phone - it may just take some of the pressure off you.

    I am waiting for my extra benefit from Atos for my Employment Support Allowance. I have been waiting three months now.

    It sounds as though you are clearly missing out on money you are entitled to. Give us a call on 0808 808 0000, and we can advise you on this.

    If Atos call you for a face-to-face interview and say they think you’re fit for work, what can you do if you feel you’re not ready?

    You have the right of appeal if you disagree with this decision. Ideally, I would encourage you to call us so that we can discuss your problems at length and see if you have a case to appeal with. 

    We have some information on our website about appeals and complaints

    Our number is 0808 808 0000, if you they do make that decision and you're not happy with it. Understandably, lots of people worry about this. It may not be the case, though.

    I'm in receipt of Disability Living Allowance. When do I have to apply for the new benefit that will take over? 

    The Personal Independent Payment, which replaces Disability Living Allowance, is being  introduced for new claims in April 2013. Those already in receipt of DLA will not be affected in the first phase of benefit reform.

    We have some information on our website about changes to DLA

    I was late sending back my DLA renewal. They are saying that they haven’t received it and that I need to start again and be a new applicant, which means waiting another maybe eight weeks and no back pay! Can I do anything about it? I hate those forms, please help! 

    Did you take a copy of the form?

    Yes I did – well, most pages. 

    You could try sending them a copy of this to prove that you did complete it. How long ago was it that you sent it back, and when was due to be in for? 

    I sent it back almost five weeks ago. My claim stopped at the end of January, about a week after I sent it back. I’ve been in hospital in the meantime, so I didn’t contact them sooner. 

    I would try and send them a copy of this with a covering letter to explain what has happened. If you want any help with this, then please phone us on 0808 808 0000. If they refuse this, then unfortunately it would be a new claim, but we could help you with this too if you meet the qualifying criteria. 

    I have finished work to look after my husband and I. I’m claiming Carers Allowance. I am 49, my husband is 65, and getting a pension and Attendance Allowance, and worried about my stamp. 

    Don't worry - while you are claiming Carers Allowance, you are credited with Class 1 National Insurance contributions.

Page 1 of 116 12345Next 5 >Last >>