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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.
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
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.
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.
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.
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.
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
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
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.
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.
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.
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.
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.
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.
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
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.
our benefits advisers Sarah Presto and Kath Tindall answered your questions in
a live webchat.
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.
Kath answered questions on topics including Disability Living Allowance,
Employment and Support Allowance, benefits for carers, and help with heating
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
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
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.
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.
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.
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.
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
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.
has some more information on Disability
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?
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
Why do you keep telling people to
phone the number? Can’t you help here?
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.
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
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?
government’s information about Carers Allowance is here: www.gov.uk/carers-allowance/overview.
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
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
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.
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
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?
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.
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
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?
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
We have some
information on our website about changes
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
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:
Our next web chat is in the New Year and will be with a very special guest, so stay tuned!
------------------------------------------------------------------------------------------------------------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 jobI 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 centreWhen 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 appointmentsI 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 withIs 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 campaignsDo 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.
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.
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
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
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.
interested in taking part, please email me on firstname.lastname@example.org, with a few details about where you
are on your cancer journey.
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.
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).
If you have any questions about our organisation our Macmillan team would love to hear from you
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© Macmillan Cancer Support 2010
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