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.

  • Breast cancer webchat transcript

    Josie and Ellen, Macmillan cancer information nurses

    October is Breast Cancer Awareness Month, so last week, cancer information nurses Josie and Ellen joined us in the chatroom for a breast cancer webchat. 

    They answered questions about topics including checking your breasts, family history and breast cancer, side effects of treatment and the cold cap. 

    Here are all the questions and answers from the chat. 

    If you’ve got a question, you can speak to a nurse like Josie or Ellen by calling our free Support Line on 0808 808 0000 (Monday-Friday, 9am-8pm). 

    I am currently in hospital with a suspected infection in my reconstruction breast. Why have they taken a biopsy? I am afraid they are looking for a return of cancer. 

    Ellen: Sorry to read that you are in hospital with a suspected infection. Sometimes doctors take swabs to confirm that it is an infection rather than a biopsy perhaps you could ask the doctors if that is what they have taken 

    My mum and sister have had breast cancer and I am enrolled on the breast cancer screening programme. I keep getting what I think is a milk spot on my breast and I don't know if I should bother my GP with it or not. 

    Josie: If you are at all worried, I would speak to your GP. 

    We’ve got some more information about breast cancer and family history on our website. 

    I had a delayed left TRAM flap reconstruction on 6 August. Over the last week, I've started to get pain under my arm and it feels like there is a swelling or a lump there, or could it be part of the tummy tissue that hasn't softened yet? 

    Josie: I wonder if you have a breast care nurse you can speak to, or maybe speak to your GP? 

    I don't have a breast care nurse I can get hold of at the moment, as I had diagnosis and mastectomy in Lincolnshire and I’m now in Cornwall, where I had the reconstruction. I’ve been told to speak to the recon nurse if I have a problem, but being only one in a large area I don't want to waste her time. I’m seeing the doctor in a few weeks, so I will ask him. 

    Josie: I don't think you are wasting their time. If you feel this is bothering you then I would speak to them. 

    I am being treated for breast cancer. I have HER2 positive and I’m undergoing chemotherapy. I have had four rounds of FEC and now have four rounds of Taxotere. But I have had a bad reaction to my first round of Taxotere, and I’ve been told I will have to go back to FEC for my last three rounds. My question is, will this have a good or negative effect on fighting the cancer? 

    Josie: I think, if the doctors think this is the right treatment at the moment, then they will hope this will have a good effect on you. The doctors will have weighed up all the different factors, and they must feel this is the best treatment for you. 

    We have a whole section on our website about treatment for breast cancer

    How can I do some sort of self assessment to verify that my breast is ok? 

    Ellen: Here are the common symptoms of breast cancer. Although it is important to say that most breast symptoms are not cancerous, it is important that everyone is breast aware. 

    Breast Cancer Care has some information on being breast aware

    It is important to know your own breasts and how they feel. If you notice any changes, or are concerned about your breast health, you should make an appointment to see your GP. 

    I had a mastectomy on 18 September, along with four nodes removed due to grade 2 breast cancer (2 tumours) both HER2+. I have been for a CT scan today and fingers crossed it is nowhere else. I am now waiting for my chemotherapy to start (no date as yet). I feel extremely apprehensive about the whole thing but think I am coping quite well. I wanted to ask about the cold cap, as I have the opportunity of having it. Is it worth it? Or shall I just face up to losing hair now and deal with it? 

    Josie: It’s quite an individual thing. A lot of people do find benefit from using the cold cap, although lots of women do struggle with iy. Maybe try and go to the Online Community Breast Cancer group and see what other ladies think, this could maybe help with your decision. 

    We have a useful section on our website for anyone worried about hair loss due to treatment. 

    Is a full node clearance as bad as mastectomy? I am just getting back my feeling under my arm. Some days still feel like I have a tennis ball under my arm. I feel quite sad that I’ve got to go through all this again. Will I have another drain when I come out of hospital?

    Josie: The doctors usually decide what is the best treatment for you. You might have another drain and be discharged with this. I hope it goes well for you. 

    We’ve got some information on our website to help you cope with all the emotions you might be feeling. 

    I had chemotherapy, a mastectomy and 15 sessions of radiotherapy, finishing in April. Should I still be getting swollen feelings and discomfort in the wound area? 

    Ellen: Sorry that you are still experiencing a swollen area after you have had your radiotherapy at your wound area. It is not uncommon to have these feelings for many months after treatment has stopped. It may be better if you could speak to your breast care nurse or doctor to check it for you. 

    I know the answer will be we have a website for emotional support, and everyone us unbelievably supportive on this site. But, I just don't know how you get through this: damaged body, poison chemicals and live in hope it all works. Yet so many people are doing this. How do we survive? 

    Ellen: I’m sorry to read that you are having such a tough time. It is not uncommon that to feel emotional at times. 

    I’m glad to hear you’ve had good support on our Online Community – it can be a really good way to get emotional support from others who are in a similar situation. 

    Breast Cancer Care also have an online community that you can join for support and they also provide peer support were you can talk directly to someone who has had a similar experience. 

    Could you tell me how long I can expect to have aches and stiffness from Taxotere treatment? I had my last treatment at the end of June and my legs and feet are still very stiff and painful. 

    Josie: With chemotherapy, you can sometimes find the side effects of treatment can be with you for at least six months, but they should hopefully easing off. 

    If anyone would find it helpful to read more specific info on Taxotere treatment, it's on our website. 

    Is it recommended to keep creaming and exercising every day as a matter of routine for all the foreseeable future? Sometimes it seems the more I do, the more discomfort I feel. I was at follow-up last week and all seems ok. 

    Josie: I think if they are recommending to cream and exercise then, yes, keep doing it for now. Once you have good movement then there would be no need to exercise as much. 

    I am on FEC, and I’ve not had the best of times. I had four cycles so far and I’ve been admitted to hospital after each due to side effects. After the third cycle, I was found to have steroid-induced diabetes and I am now on insulin to try to control it. I’m ok but, after the fourth cycle, I have found that I am extremely light headed all the time. Can you tell me, is this a normal side effect? 

    Ellen: I'm sorry to read that you have experienced such a tough time with your chemotherapy. If your blood count is low, sometimes that can cause you to feel light headed, but I would suggest that you contact your chemotherapy unit and let them know that you're having this symptom. 

    We have information about FEC treatment and side effects of our website. 

    We also have some information on how physical activity can help with side effects. 

    Do you have any information on the use of the mirena coil and breast cancer? My mum and sister have both had breast cancer and, at the family history clinic, they said they didn't recommend using the mirena coil as it has a trace of hormones in it but they didn't suggest anything else I could use. I was a little confused by the information I was given as prior to having the coil fitted, I bled for 2-3 weeks each month and my understanding was that the coil (which has stopped the bleeding) would even things out with my hormones, which would be better then having the constant fluctuations in hormones. When I spoke to my GP about it, they'd not heard anything about this and the mirena and couldn't provide any more information. 

    Ellen: We have a little bit of information about the mirena coil on our website. 

    There are alternatives to the mirena coil. There is a non-hormonal coil IUD device that can be used .Female condoms and spermicidal lubricants can be used, or alternatively male condoms. Perhaps making an appointment at a family planning clinic will help. Alternatively, you can call our helpline on 0808 808 0000 (Monday-Friday, 9am-8pm).

  • 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.

  • 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).