Community News Blog

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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
  • Cancer and your sex life

    Couple at cafe

    Have you seen the Macmillan research that’s been in the news this week about cancer and sex

    A survey of women who’ve had breast cancer showed that a third of all women, and half of those under 55, have sex less often as a result of their cancer. 

    And this isn’t a problem restricted only to those with breast cancer, or to women. Sexual difficulties are one of the most common long-term consequences of cancer, affecting around 35,000 people in the UK. 

    Gietta Gudge, 48, a breast cancer patient from Northamptonshire, says: “Breast cancer left my sex life in tatters. I used to have sex with my husband every day, but after cancer, I was sore from the operation and my treatment caused menopausal symptoms that made sex painful.

    “Radiotherapy burned my skin which added to the problem and chemotherapy made me feel so sick and tired that sex was the last thing on my mind.” 

    Cancer can have a huge impact, both physically and emotionally, so it’s not surprising that this can affect people’s sex lives. However, many people find sex a difficult topic to talk about, so they might not be getting the help and support that they need. 

    Jennifer’s top tips 

    Jennifer Gorrie, a Macmillan cancer information nurse has these tips: 

    -       Try wearing a soft camisole top, bra, or other clothing to bed to boost your confidence if you are self-conscious about a mastectomy or scarring

    -       You can be intimate with your partner without having sex. Hold hands, kiss, hug and talk to each other

    -       If fatigue is an issue, it might help to have sex in the morning when you are feeling more energetic after a night’s sleep

    -       If arousal is difficult, get your partner to focus on other sensitive areas like your neck, your bum and inner thighs

    -       Experiment with which positions are most comfortable for you. For example, you may find it easier to have sex side by side, or change who is on top

    -       Talk to your partner about how the cancer has made you feel and how it has affected your sex life

    -       Talk to your GP or call the free Macmillan Support Line on 0808 808 00 00. 

    Whether you are male or female, have a partner or are single, and whatever your sexual orientation, cancer doesn’t have to mean the end of your sex life. Read more tips and information about cancer and sexuality or order our free booklet.

  • Get active, feel good: guest bloggers wanted to trial our new DVD

    Running shoe

    This summer, Macmillan will be releasing a new exercise DVD in partnership with Boots, and we’re looking for guest bloggers to test them out for us and let the Community know what they think.

    We’re working with Boots to spread the word that physical activity can be great for people living with cancer. It’s not about spending hours in the gym, but keeping active at an appropriate level during and after cancer treatment can boost energy and help to reduce the impact of side effects. 

    Get Active, Feel Good is specifically developed for people living with or after cancer. There are two to three different levels for each activity, so you can find a level to suit you. The activities are set to music and led by cancer fitness expert Dr Anna Campbell.

    It will be available for free in store, from Boots Macmillan Information Pharmacists who have undergone training about physical activity and cancer, or online from Be.Macmillan.org.uk.

    Testers wanted 

    We’re looking for Online Community members willing to try out a sneak preview of the DVDs before they are released, and then write a blog post to let us know how you found it.

    Ideally, you’ll be someone who isn’t very active at the moment, and you’d be willing to try out the DVD for four weeks. After that, you’d just need to email me the text of your blog and I’d publish it as a guest blog right here on the Community News Blog.

    If you’re interested in taking part, please email me on community@macmillan.org.uk, with a few details about where you are on your cancer journey.

    Stay safe

    Before you start using the DVD, please read the safety booklet that comes with it, and check with your doctor, nurse or physiotherapist if you are unsure what activities are safe for you.

  • Web chat transcript: Bengu Shail.

    Hello everyone,

    Thanks to those of you who managed to make it along last Wednesday to the web chat we hosted with Bengu Shail.

    Bengu spent an hour answering your questions on returning to work after a cancer diagnosis and also answered some questions which we received via email following the live chat.

    For those of you who were unable to make it on Wednesday, I've created a transcript which you can read below. You may also find the following link useful:

    http://www.macmillan.org.uk/GetInvolved/Campaigns/WorkingThroughCancer/SupportForEmployees.aspx

    Our next web chat is in the New Year and will be with a very special guest, so stay tuned!

    Thanks.

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

    I’ve been writing on CV’s that I have had cancer to explain the gap in my employment. Should I do this? Or leave it out?

    My view is 'why should I hide it?' People either accept you as someone who's had cancer or they don't. If you have problems down the line then they'll need to know about it anyway, so why hide it in the first place? Perhaps though, leave that information for the interview? I've asked myself the same question! My view is that if they don't want to employ me because I've had cancer then I probably don't want to work for them. It's illegal to discriminate based on health records. My view is that, if you've provided evidence that you're fit for the job and your Dr can back that up then there should be no reason why you shouldn't be employable. It's important to reiterate this in interview - keep telling them that you *are* fit for the job

    I understand that the disability discrimination act covers you from the point of diagnosis, but I had to give up a course of study 3 weeks before diagnosis (after 3 months of missed diagnosis) do I have any recourse?

    I'd love to be able to help you on this, but I'm not an expert in employment law. I recommend you call the 0808 808 0000 number to speak to a specialist at Macmillan who will be able to advise if you have any recourse.

    So if they ask 'how are you' I should reply the usual 'fine thanks' before the interview?

    Are you ready to go back to work? Either way you need the support of your Dr.
    Either to say that you're fit to work, or you're not fit enough. I had the benefits worry myself; fortunately I was supported by my Dr.

    I am at the stage that I want to start to get into work again - a new job - as I have to start again - I am currently on ESA - but am severely compromised as to confidence and energy levels etc Are there any other agencies that can support me in returning to work so I can do things at my own pace?

    It's a difficult question, would it be an option to look for something short-term to bridge the gap and keep applying for others? I'm in a different situation since I was working 60-70 hour weeks and I know I can't go back to that. Are there elements of your old job that you can pick up and do part time? Or perhaps side-step and work for a different line manager since your old one wasn't very supportive?
    Often volunteering allows you the opportunity to get your confidence back and develop new skills. You can then apply for jobs within the organisation you're volunteering in. If you're on disability benefits, then my understanding is that even if you're volunteering you're still entitled to those - so do check that before flagging yourself up at the job centre

    When at work, do I need to tell to other colleagues? They will have to provide cover for me when I'm at hospital appointments etc. My problem is that some people are 'skeptical' about my appointments

    I think that if you have appointments then it's only fair to give as much notice as possible. Obviously you don't have to tell anyone the details, that's your business and it's different for everyone. You may find in the long-term that it's easier to explain to the people who need to know that you will be attending appointments for cancer treatment, just so they know where you are and they can plan their workloads.

    Is it better to let your colleagues know you have cancer to save awkward questions when you go back?

    Everyone is different. Some people are very private and don’t want to draw attention or talk about it. Personally, I’d rather people got the facts from me direct (not from gossiping). It gets their questions out of the way, rather than having to watch them dancing around the houses being awkward, avoiding contact and thus, making me feel awkward (and paranoid).   I don’t think there’s a right or wrong way. Do what you feels right for you. Don’t let anyone make you feel pressured to deal with it in a way you aren’t comfortable. If you don’t want to involve people, don’t. After what you’ve been through, it’s totally your prerogative isn’t it?

    I work in a big company with a "performance culture" where employees are measured yearly and compared against peers. I have short term memory problems and the nature of my business is always learning new deeply technical things. Consequently 2 years after treatment I'm still significantly underperforming. They are not measuring me at the moment because of my treatment, but at some time I expect I'll be back in the pool with all the rest. The thing I've been trying to get my head round is whether it constitutes "reasonable adjustments" to expect them to measure me against my juniors into the future, rather than against those who were my peers before all this happened.

    How are you managing the short-term memory loss at the moment? Perhaps finding some coping mechanisms and ways to manage the problems will help. Myself, I'm dyslexic and I tend to be meticulous about writing post-its, keeping my diary up to date, writing to-do lists etc as this helps me manage the issue.

    Yes I have some coping strategies, e.g. dictaphone etc. The thing I haven't managed to do is find a way of keeping track of learning something new and complex. I can do it, but I'm so much slower than I used to be because my brain is such a leaky bucket.

    Always speak to your manager to find out what the policy is. And I'd definitely recommend sitting down and getting some advice externally. A union for example, could help or Citizen's Advice may be able to advise. Obviously it's going to take you a while to get back to pre-diagnosis state, but it's a work in progress. I can only recommend speaking to your manager and explaining the problems you're having, the measures you're taking to help and agree a plan to move forward that you're both comfortable with

    Is it easy to return to work after cancer, as lots of people seem to think that once your in remission, you are just the same as you are before you had treatment?

    For me to return to what I was doing before would have been impossible because my body simply can't do the things it used to do. I've had a lot of damage to my bones from steroid use and I also experience a lot of fatigue. I've had to be really honest with myself about what I can and can't do. Also, when you have cancer it really knocks your confidence, especially when you're isolated from your normal working environment.
    For me, volunteering in the short term was the best option. It gives me the opportunity to test my body and see what I can and can't do in a supportive environment that understands, so it gives you a chance to develop your confidence and gain skills and bring you back into a normal working environment.

    Bengu are you working now? What type of work are you finding helps you best?

    I'm volunteering now as I still have a year of treatment left. It's a great opportunity to ensure that I’m still out there and my brain is working and I'm using my skills. At the minute I'm volunteering in Macmillan's communication team and am helping to make a video which campaigns for 24 hour nursing for cancer patients at the end of their life. As I used to work in TV this project is really up my street and it gives me the opportunity to also use my experience as a cancer patient to really make sure that Macmillan are addressing the right issues. And I'm loving it!
    Ultimately my plan is to apply for a job either here at Macmillan or at another cancer charity and change my career altogether. At the moment my body cannot cope with a full time job and I need to be practical about what I can and can't do

    I feel unsure where to start - and feeling so vulnerable - and uncertain of my own capabilities, what do you advise?

    When you go back to work you have to be really clear about what you want, because once you've had cancer you realise that life's too short to waste on something that doesn't make you feel good.

    How has your cancer diagnosis changed your working life and have your priories changed?

    I think before I got ill it was all about my career and to be honest I worked myself into the ground. Because in my industry (television) to be seen as somebody with problems was a cardinal sin so basically I ignored all my health problems and almost ended up killing myself for my job. When I got cancer it made me sit up and have a really hard look at myself and my life and what my priorities were, and basically I had a choice; I either choose to have an exciting career which works me into the ground, or I can choose to have a life. And I chose life.

    Like you, I want something to do with a cancer charity, as being a member here for a year has opened my eyes lots, as well as going through cancer myself. I like helping people. How did you know what you wanted to do, and how did you get into it?

    Have you thought about retraining? Now is probably the only time you'll have the time to do that? There are lots of things you can do here at Macmillan. Have a look into volunteering; we've got volunteers in anything from fundraising to human resources to supporter services. You could even help in a local help centre if there's one nearby? It might be a good way to dip your toe in and see if it's something you really want to do without formally committing to a training course or anything like that.
    Have a look here http://www.macmillan.org.uk/GetInvolved/Volunteer/Volunteering.aspx or you could also consider becoming a cancer voice.

    What do cancer voices do?

    Cancer voices get involved in campaigns and help us shape our services, future cancer policy and get involved in press campaigns

    Do you think your employer understood how to deal with you cancer diagnosis?

    I was a freelancer and three days into my new job when I was diagnosed so my contract terminated as soon as I was admitted into hospital. My employers were obviously very concerned and sympathetic when I told them and sent me a lovely get well card while I was in hospital. To be fair, they only knew me for three days. That’s all I got and I didn’t expect anything else.

    Could your employer could have helped you more?

    Yes, I do think some my previous employers could have been a little more helpful in terms of giving me a job with fewer and more flexible hours. As freelancer, I was in a difficult place to begin with because nobody was obliged or legally contracted to ‘care’.  I was on my own and wasn’t prepared to compromise on my health to go back to working as I did before. I did explore options to side step into another role but I couldn’t justify taking such a huge move into a job that was essentially futile in terms of job satisfaction. My theory was, if I was going to come out of program making to do something unrelated, I should put my skills into something more worthwhile and meaningful.

    What has been your biggest challenge in returning to work?


    The biggest challenge for me was to accept that the career I’d spent my whole life working towards was no longer the best place for me. In terms of my new career, the challenge was accepting that no matter how much I push myself, I’m not quite ready to commit to going back to work. My body isn’t fit enough to do a daily commute or long days in the office so I volunteer to make sure I can physically manage working. Essentially, I had to accept that I’m a now round peg, so I need to take my time and find a role hole instead of trying to be something else. It’s a terrifying prospect, especially when you had your whole life mapped out.

    Has your attitude changed since your cancer diagnosis?

    Yes. Having cancer gives you the chance to take a long hard look at yourself and sometimes, you don’t like what you see. What I saw was someone who sacrificed her whole life for her career and spent a long time trying to please other people at the risk of her own life. Now, I put my health and my family first. I don’t put as much pressure on myself to be this amazing successful career woman because I know the people who love me judge me for who I am not what I am. I don’t do anything that makes me unhappy or compromised. Life is too short to be miserable.

    When you returned to work, I’m sure you must have been pretty apprehensive but what fears did you have that turned out to be unfounded?

    Having met a lot of the team in the capacity of a Macmillan Cancer Voice, I knew the team were lovely and I had nothing to worry about. I think my only worry was walking around with a wig on, knowing people knew it was a wig and that I’d be judged for it.  I was wrong. Nobody judged me at all.  I stopped wearing my wigs and feeling like I needed to hide. As for the lack of hair, nobody ever blinks an eyelid!

    If you go back in time before you were diagnosed and give yourself one piece of advice on how to deal with your cancer, what would it be?

    In hindsight, I wouldn’t be as hard on myself to be ‘brave’ all the time. I spent a long time suppressing my own feelings because I couldn’t bear to see my family upset.  These days, I’m a lot more open about what’s on my mind and if I want to have a rant, I do and then I do something positive to snap out of it.
     
    Where do you see the Facebook group going?

    Eventually, I’d like to see my group expand so I can reach my 5000 target. I’m a great believer in people power and I think amazing things can be achieved if only we all took a bit of responsibility and started doing more. One day, I’d like to find out that someone who joined my group and signed up because of my blogs were identified as match and that their bone marrow saved a life. If I can save just one life by using my experience to talk about this horrible disease, then to me, whatever I’ve been through this year had some sort of reason.

    What’s your favourite part of your new working life?

    I like working with people who have integrity and are as passionate as am about what they do. There are no egos where I work now and it’s really nice to work with other brilliant  creative minds who are as just as completely focused on helping people,  but don’t make you feel  under pressure to work over and above the required hours to achieve your objectives.

    Do you have new career ambitions and goals? What are they?

    One day, I hope to find a full time job in a cancer charity in a role which allows me to use both my TV skills and my experience as a cancer patient/survivor to make a real difference to cancer services in the UK.
     
    How was your first day?

    My first day was amazing. I couldn’t have wished for a nicer bunch of people to work with. My boss (the Head of Communications) gave me some work, assigned me a manager and let me get stuck in with a really interesting project. I came home and I felt like I really used my skills for something that will make a difference. It was a great feeling.

    Did you get back to work because you wanted to go back, or because you needed the money?

    I thought I would have to go back to work sooner that I was ready to and was really worried that when my benefits were next assessed, I wouldn’t qualify. I explained my worries about my specific physical limitations to my doctor and I that would find it difficult for a variety of reasons (mobility, fatigue etc). My Macmillan adviser helped me with my application, my doctor supported my re assessment to the DWP and ESA. Eventually, the support was extended so I was fortunate in that I wasn’t forced to return to work whilst still having treatment. 

    I’ve been really emotional and I’m not sure if I can hide it when I go back, any advice?

    Firstly, it’s ok to be emotional. You’ve had a horrible time and nobody will ever know what cancer is like, unless they or a loved one has experienced it themselves. I think it’s key to ensure that you are emotionally feeling ready to go back. We all know if we are going through inner turmoil it’s very difficult to be focused in work. You may be putting pressure on yourself to go back before you are really ready. To deal with some of your feelings, you may consider joining a support group or contact our Macmillan helpline on (0808  808 0000)  who may able talk about how to deal with some of your feelings. Personally, I find talking to other people who understand helps for me. Finally, you might consider arranging a meal/drink with some of your colleagues before you go back to work. It could break the ice a bit and make going back less daunting.

    For more information about Bengu, please visit her Facebook page.

  • The side effects of cancer treatment: Answers

     

    Q: I've just finished pelvic radiotherapy, and have internal radiotherapy to do this week.  What can I do to help the recovery process?  My MDT doesn't give me any clues!

    A: Following treatment for cancer you're likely to feel relieved and keen to get back to normal. However recovering  from any cancer treatment can take time and is usually a gradual process.

    One of the side effects of pelvic radiotherapy can be fatigue. So it's important to get plenty of rest and not to expect too much of yourself. Just be guided by how you feel. Our information on coping with fatigue may be helpful for you at this time. 

    Additionally eating well  will help you regain strength and gentle exercise can help boost self esteem and sense of wellbeing.

    Best wishes

    Anne

    Cancer Information Nurse Specialist

    Q: I'm 32 and was diagnosed last November with non-h lymphoma. I had 6 months of chemotherapy. I found this hard going but I only had trouble towards the end of my treatment when my temp kept getting high due to infections. I get aching joints, especially first thing in the morning and if I have been sat for a while. My kids keep me active though, they are 6 and 3. Macmillan have been fantastic in letting us know about financial support and things like that as my partner had to stop working to look after me and the kids. I have it in my bone marrow so don't really know what will happen in the future.

    A: I'm happy to read that Macmillan was a good source of support for you and your family. I can appreciate that the uncertainty which you're facing at the moment can be hard to cope with.

    Many people find it a struggle to get back to some sort of "normality" after they've had such intense treatment and are at the start of their recovery.

    You might find it helpful to read Macmillan's information on exercise after treatment, which may help to relieve some of the joint pain (though it sounds as if the kids are setting up their own fitness programme for you!). It's also well worth mentioning any problems to your specialist when you attend for any follow-up appointments.

    Best wishes

    Bill

    Cancer Information Nurse Specialist

    Q: I had breast removal and reconstruction in 1999. The silicon implant is leaking causing a metallic taste in my mouth and burning feet. I also have terrible pains 24 hrs a day in my legs, could this be bone cancer?

    A: I'm sorry to read about the problems you're having.

    It's difficult to say whether the pains you describe are related to the silicone implant leaking, but you may find it helpful to read about possible complications when silicone implants rupture. Your breast surgeon is the best person to ask about removing and replacing the ruptured implant.

     Anyone who has had a previous cancer diagnosis worries that any new pains might be the cancer coming back. It's understandable you're worried that the next stop might be secondary bone cancer.  But this is not necessarily the case.    

    Many women with breast cancer have hormone therapy as part of their breast cancer treatment and some of these drugs can cause bone pain. If this is relevant to your situation, you can read our information about hormone treatments for breast cancer

    Also you might be interested to know there is this research being done into bone and joint pain as many women complain of this following treatment for breast cancer.

    We'd strongly encourage you to speak to your doctor about the leg pain to try and find out the cause.

    Q: Since I had my chemo and radiotherapy and brachytheraphy a year and a half ago after cervical cancer, I have had bad bone and joint pain which is preventing me from sleeping. Is this normal, and will it go away, as its really doing my head in, and painkillers don't work?

    A: Unfortunately, sometimes radiotherapy to the pelvic area damages the pelvic bones. This may cause pain and difficulty carrying out daily activities. Painkillers and the advice of a physiotherapist or occupational therapist can help. There are also drugs that can be used to strengthen the bone. You can read more about treatment for this problem here.

    Possibly your pain is caused by this type of damage. It is difficult to say how long your symptoms will last if this is the case. However, please talk to your GP or specialist about whether any of these treatments are right for you. In particular, there are different types of painkillers. It is important to know how to use them effectively.

    Q: I am 3.5 years post treatment for Nasopharyngeal Cancer and I still have little to no saliva. Will this ever improve or is this it now? All of the Doctors seem to have a different timescale which ranges up to 5 years!

    Over the past year I have also developed a dripping nose which can be very embarrassing as I very seldom feel it coming! Is this normal?

    Why do some Doctors never warn us of forthcoming side effects? It would save a lot of anxiety and stress?

    A: The treatment you have can affect the salivary gland production and this can often take from 6 months or longer to return to normal. Sometimes the treatment may give you a permanent dry mouth. There is more information here that may help.

    A nasal drip can be what is called a late side effect of radiotherapy. It may be that there is no nasal hair left and this can cause a dripping nose. You will find information on nasopharyngeal cancer here.

    It's difficult for even the most experienced specialist to predict exactly which side effects any one person will have after their treatment. But people should be told enough to make an informed consent to go ahead with the treatment being offered.  As more and more people live longer after cancer treatment, more work is now being done to understand and manage some of these late or ongoing side effects of cancer treatments. 

    Q: I finished 6 months of TAC chemo and 4  weeks of radiotherapy last October. I'm not taking any medication at all now as my hormones weren't compatible with the tablets.

    Please can you tell me if all the aches in my limbs are to still do with the treatment? I still have little movement in the arm where I had the nodes removed. I feel more tired and emotional now than I did last year.

    I know the Macmillan nurses are always there for us but its hard when you know there are other poor patients going through treatment, I don't want to disturb the nurses.

    A: I was unsure exactly what your diagnosis is but from the information you have given, I imagine it's a breast cancer you had.

    Tiredness and fatigue can often continue for some time after treatment has finished. Patients often look forward to the time when their treatment ends, but many in fact have a really difficult time emotionally. You can read more about this here.

    It's important to maintain a network of support. Some people find counselling or support groups helpful; speaking to someone else who has had a similar experience can be very supportive. Perhaps having a chat with one of us here on the helpline would help. We could also direct you to what other support might help.

    It's difficult to say what's causing your aching limbs and joints. Again I am unsure what you mean when you say your hormones were not compatible with the tablets. I read you don't want to disturb the nurses but the role of the breast care nurse usually includes supporting patients after treatment has finished and it really would be a good idea to talk through your concerns with them.

    You can also talk to them about your limited range of arm movements; they may recommend some particular exercises for you. Our information about exercise after treatment might help.

    Kind regards

    Jane

    Cancer Information Nurse Specialist

    Q: I finished chemo in April and am now on Aromasin as I have secondaries in the bone (hips, back and ribs). I am getting pains in the knee and ankles which seem to come and go. Does anyone else suffer like this? I also find that the Zometa can bring on similar pains.

    A: Unfortunately joint pains like these are common side effects of Aromasin.  Mild painkillers can help but you may have to take them regularly to get the full benefit from them. As you can see from our information on Zometa you're right to be thinking it can also cause some aches and pains after it has been given. Once again painkillers can help. If the idea of taking more medicines is a bit off-putting these other methods of pain control may be worth discussing with your doctors. There are a number of everyday ways your friends and family might be able to help too.

    I hope this answer has been helpful. If you have any other questions or concerns please get in touch with us through the forum again. Or you might want to email us directly or call us on 0808 808 0000.

    Best wishes

    John

    Cancer Information Nurse Specialist

    Q: I finished radiotherapy six months ago for prostrate cancer. The tiredness is wearing off but still got problems with bowel control can be fine for a few days, I think I am ok but then get caught out . Any idea how long this is likely to last for?

    A: After treatment for cancer you're likely to feel relieved and keen to get back to normal. Recovering  after cancer treatment can take time and differs from person to person.

    Problems with bowel control can be one of the side effects of pelvic radiotherapy. For some people they can continue to experience some of these side effects long term and it is difficult to say how long they may continue. There are many medicines that can help with these symptoms and other ways of managing things too. It's important to discuss your symptoms with your GP who can refer you on to a specialist for further help if needed.

    Q: I concluded chemo 7th April this year and within a week had phlebitis in my right arm (vein). Confirmed as chemo side effect, the phlebitis infection lump went, although a clear track can still be seen down my arm then tingling/numbness in fingers started. Told this should go within a few weeks. Now nearly 3 months on and still a constant companion although not as acute as initially. Will this ever go and is there anything I can do to reduce symptoms (on bad days my arm cramps)?

    A: Unfortunately phlebitis can happen when having drugs intravenously. It usually resolves shortly after you finish your treatment. But can take longer for some people.

    However it sounds as if the tingling/ numbness may not be phlebitis, but a side effect of your chemotherapy called peripheral neuropathy. This can happen because some chemotherapy drugs can affect nerve endings, usually in the hands and feet.

    Your doctors will be able to confirm whether or not it is peripheral neuropathy caused by the particular chemotherapy drugs you had. If it is peripheral neuropathy, there are some things you can do that may help.

    Best wishes

    Lorraine

    Q: Why do I feel so stiff & tired my joints really hurt? I had a breast cancer tumour removed, total lymph clearance, chemo & rads nearly 2 years ago and still feel like s***.

    A: Unfortunately many women experience tiredness and joint pain as a result of their treatment.

    Although it is known that this is a common symptom as yet we do not know exactly why this happens or how long it lasts for.  There is however research being done to find the possible causes, how long it will last and how it can be treated.

     One possible cause for these symptoms is that treatment for breast cancer may cause an early menopause  or that the menopause has occurred naturally.  As oestrogen levels in the body become lower aching joints and stiffness can occur.

    It is thought that having a healthy lifestyle by staying active and eating a well balanced diet might help.  It also may be worthwhile speaking to your G.P about painkillers that you can take to reduce this pain.  Some women also feel that complimentary therapies may also help.

    Q: I was diagnosed with primary breast cancer April 2010. I had treatment; lumpectomy, mastectomy, chemo (FEC) radiotherapy. All were done by April 2011.

    I managed the treatment really well but since commencing Tamoxifen in Jan 2011 I have had a variety of side effects but the main issue is bone and joint pain. My oncologist changed the drug regime to arimidex in May 2011 to no avail. The pain is truly debilitating, I was always very active person but cannot get past the pain my question is - Is this it for the next five years? I take voltarol 50mg 3 times daily with little effect.

    A: Painful joints and bone pain can be a side effect of Arimidex  (Anastrozole) affecting about one in every ten women. Some women find it improves through the course of their treatment. For others it may worsen. Unfortunately I cannot comment how this may be for you over the next five years. There is, however, research ongoing to try and find possible causes, how long it may last and the best way to treat this. We do not have the results of this as yet.

    In the meantime as Voltarol is not helping you, there are other types of painkillers the doctor could prescribe that might help you more. There are also other methods of pain control which can be used on their own or in combination with painkillers.  Heat and cold methods may also be useful.

    Best Wishes

    Sandra

    Cancer Information Nurse Specialist

    Q: I am 44 and having chemo (gemcitabine) via iv following a whipples for pancreatic cancer. I have not had a period since 13 April prior to starting the treatment (not pregnant and suffering hot flushes) and so I wonder if this is most likely to be chemo-induced "menopause" in which case my periods are likely to come back or whether this is a natural process due to my age. Is there anyway to find out or is it a case of just waiting to see what happens?

    A: It is fairly common for women to find that their periods may become irregular or stop altogether when having chemotherapy. It is also common to find that you may have some menopausal symptoms such as hot flushes, dry skin and vaginal dryness. For some women, their periods may return after chemotherapy is finished but this can sometimes take several months.  The younger you are the more likely you are to start your periods again.

    If a woman's periods have not returned within a year of completing chemotherapy it can usually be assumed that they have become post menopausal as a result of their treatment. Blood tests can be done to measure your hormone levels to help determine if you are menopausal or not.

    We have information on coping with menopausal symptoms in the breast cancer section of our website. This information is also helpful for women who are having these symptoms as a result of treatment for other cancers. Even though you are not having periods it is still important to use contraception while having chemotherapy. If a woman becomes pregnant during or shortly after having chemotherapy there is a chance the foetus may be harmed. Men who are having chemotherapy should also take care to not father a child for the same reasons.

    Q: I finished my course of chemo about 6 weeks ago. I was on Oxaliyplatin and was ok until ten days ago. I have now got really numb and slightly sore fingertips and sometimes it affects my feet as well. Its so annoying and I don't know what to take, if anything, to relieve it a bit . I've spoken to my oncologist and she just said it might go eventually! Would be grateful for any help at all thank

    A: Good to read that you've finished your treatment - but it sounds like you're now experiencing one of the possible side effects of Oxaliplatin.  The numbness and pain in your fingers and feet are unfortunately typical signs of some damage to the nerve endings called - peripheral neuropathy

    It is a possible side effect of some types of chemotherapy.

    You can find some ideas on how to help reduce your discomfort here. I hope this helps you.

    Sometimes symptoms improve over a few weeks - but sometimes it can take several months before it subsides. Nerves are very slow growing cells and it can take a long time for them to heal. Very occasionally people are left with some degree ongoing discomfort or numbness because of the effect on the nerve endings.

    Best wishes

    Carol

    Q: I finished radiotherapy for breast cancer on 29th January 2010.  However, a year and a half later and my skin is still sore.  I still cannot use smelly soap, deodorant etc, and it is still quite sensitive to touch.  I've tried various creams (aqueous, dermol, etc) with no real results.

    I'm on Tamoxifen (and in my mid fifties).  I'm experiencing endless hot flushes and some weight gain.  The flushes come at any time of the day or night. I get them no matter what I drink: water or alcohol doesn't seem to make any difference.  Same with the weight gain, I have become a 'runner' to help me loose some: diet + running and still no results.

    Slightly 'girly' but I have become very conscious of my looks recently.  Looking at my half full cup of bra (had lumpectomy) can bring on the tears.  Not to mention shirt buttons that go 'sideways'.  I tried stuffing my bra with various 'stuffing' but they seem to annoy my skin even more.  Not a priority side effect, I know, but I miss 'dressing up' after a nice smelly bath without flinching as I touch my breast or crying when I see the wayward buttons! (Blouses are fine but with the extra weight...)

    A: Sorry to read about the side effects your still having.

    Radiotherapy can often affect a person's skin during treatment; it may be come sore or itchy. For most people this settles down once treatment has stopped. But, unfortunately for some people this continues.

    Hormonal therapies|, like Tamoxifen often cause menopausal symptoms as a side effect, including flushing and sweating. We have information on managing menopausal symptoms which you may find helpful.

    It's great you've taken up running; exercise after cancer treatment can have a positive effect on your health.  However it's not uncommon to notice weight gain when taking hormonal therapies. You may also find our information on weight management after cancer treatment  useful

    Cancer and its treatment cancer can have an impact on a person body image which can cause a range of emotions. You may find it helpful to talk this through with your breast care nurse, as they can advise you on alternative prosthesis that may be more suitable for you.

    Take care

    Valerie

    Cancer Information Nurse Specialist

    Q: Hi, I'm in middle of TAC chemo (5/6) for breast cancer. My question is why there is nowhere where we can find all the odd little side effects, which you almost think you imagine as no one else has mentioned them. I suffer from watering eyes (which interfere with reading and doing craft work), I've just developed a tinkling noise in one ear, swollen feet, and a very irritable and painful rectum/anus (sorry) in wk 2 after chemo - maybe linked to low white blood count? I also have numb finger tips, but no one talks about the wrinkled fingers and feet soles. I know they don't want to bombard us, but it really would help.

    A: I'm sorry to read you're experiencing a number of problems while having chemo and appreciate it's frustrating when you can't find information.  The trouble is, chemotherapy affects everyone differently and unfortunately it would be impossible to list every potential scenario.

     Our information lists the common and less common side effects. Some of the things you mention are included. For example, swollen ankles (fluid retention) and numb finger tips (peripheral neuropathy). 

    But people sometimes experience other symptoms which may be rarer side effects. Watering eyes is reported by some people on chemotherapy - but is not listed in the drug information.

    It's always important to talk to your health professional at the hospital about any symptoms you have. They can assess your individual situation and may sometimes want to carry out extra tests to clarify the cause of a symptom.

    Unfortunately, sometimes there'll be no clear reason why someone's experiencing a particular symptom. The online community is a good way of sharing your experiences with other people having similar treatment. People having cancer treatment often learn a lot about managing symptoms from each other.

    Take care

    Val

    Cancer Information Nurse Specialist

    Q: I have just started a course of B.C.G. treatments after having a tumour removed from my bladder.

    I felt uncomfortable when passing urine and was told to drink plenty of water as this helps, I have had an intense stinging sensation for about 6 weeks (informed G.P and Consultant at recent check-up ) and was told it should clear up, any help would be good.

    A: Drinking plenty of water will help flush the drug through the bladder and can help ease the stinging sensation when passing urine.  It might also be helpful to use simple analgesia such as Paracetamol.

    Just before each treatment though, you should reduce the amount you drink. A fuller bladder will be uncomfortable as you are asked to try not to pass urine for two hours afterwards.

    When the doctors say that it should clear up, often the stinging sensation will subside after 2-3 days.  You are still having the BCG therapy and so you'll likely have these side effects after each dose. 

    But it's important to tell your doctors and nurses if the stinging is continuing so they can make sure there is not infection in the urine. Some people find it helpful to keep a diary which can help when you're explaining to the doctors the symptoms you are having after treatment.

    Kind regards

    Allan

    Cancer Information Nurse Specialist

    Q: This coming September it will be three years since my month's treatment finished and I still get a rather sore tongue. It was okay before the radiotherapy as the cancer was removed from the mouth floor, but ever since I have suffered with the unpleasant side effects. Last year a biopsy diagnosed mucositis / ulceration due to the radiation damage, but no one can say when it will finally heal. Some days it does seem to be trying, but then it just comes back and I now wonder if this is something I will have to learn to live with ? Any help / suggestions would be most welcome, thank you.

    A: Radiotherapy to the head and neck can cause the lining of the mouth and tongue to become very sore, and small ulcers may form. This is called mucositis and can be very painful. Usually this is a short -term side effect lasting up to six weeks after treatment, but some people can develop long- term problems. We have information on treating mucositis  and tips on mouth care which may be help with your symptoms.

    Some clinical trials have shown that hyperbaric oxygen therapy may be useful to treat long term tissue damage caused by head and neck radiotherapy, although more research is required. You may wish to discuss this treatment with your oncologist.

    Regards

    John

    Cancer Information Nurse Specialist

    Q: How do I get over the worry that my cancer will come back? It's driving me mad, I can't stop thinking about it, I'm so paranoid.

    A; A diagnosis of cancer can bring many frightening emotions with it, even if treatment is successful and the doctors are very hopeful that the cancer will not return.  Many people find they are still worried about their cancer coming back.  For some these feelings are overwhelming.

    Some people find it useful to contact one of our information and support centres, some of which have counsellors.  Some people find talking things through with someone trained to listen helpful. By clicking on how we can help  you could use this to find the nearest local information and support centre.  Some of these centres also have access to complementary therapies which you may like to try.  Alternatively you could contact your GP who may be able to refer you for counselling or give you some contact numbers to try.

    The important thing to remember is that you can talk to us.  We are there is help people especially if they are having a tough time or if you just want to talk things through with someone.  

    Please note that our nurses won't be able to answer any more questions on this subject via the Online Community. If you would like more information, please contact our Support Line on 0808 808 0000 weekdays between 9am-8pm. You can also email a nurse via our online form.

     Although we make every effort to ensure accuracy, Macmillan Cancer Support cannot accept liability for this information, or for third-party information such as other websites to which we link.  If you are concerned about your health you should always consult your doctor.

     

  • Bowel cancer diagnosis – what was your experience?

    Apple

    You may have seen the news this weekend that bowel cancer rates have risen sharply among men in the last 30 years – much more than the rates in women. 

    The reasons for the rise are not fully understood, although risk factors for bowel cancer include, age, diet, smoking, a lack of physical activity and a high alcohol intake. Cancer Research UK has said that early diagnosis is essential to save lives. 

    Read more about the symptoms and diagnosis of bowel cancer.

    This got us wondering what experiences of diagnosis our Community members had. Were you aware that it was important to get your symptoms checked out, or did you end up leaving it for a long time? And when you did go to the doctor, did you find that the testing and diagnosis process went smoothly? 

    If you’re affected by bowel cancer, the bowel cancer group here on the Online Community is a great place to share experiences and get support. Recent discussion topics in the bowel cancer group have been:

    Chemo-radiation

    Rectal surgery and side effects

    Lack of appetite

    Living without a colon 

    If you are worried about bowel cancer, or need some support, you can also speak to one of our specialist nurses on 0808 808 0000 (Mon-Fri, 9am-8pm).