Cancer support Q&A with Macmillan and a panel of MNers with experience of cancer

 Macmillan know that it can help those who have cancer (or who have a family member/friend who has cancer) to talk to others who have experience of cancer to share advice/tips and receive support.

And we certainly know, from the many amazing cancer-support threads on Mumsnet, how valuable this kind of peer support can be. 

With that in mind, a panel of 'experts', MNers who have experience of cancer, have answered a selection of your questions

The panel

KurriKurri

I was diagnosed with breast cancer in 2008, aged 48. I had a mastectomy, followed by a second op for lymph node clearance as it has spread to nodes. I then had six months of chemo, followed by radiotherapy, a year of Herceptin and now I am on Tamoxifen for five years.

As well as my family I have had support from local cancer charities, cancer sports groups I joined, from MacMillan, Breast Cancer Care, from the MN Tamoxifen thread (found in the General health topic - brilliant women), and from friends who have also been through cancer.

SweetestThing

I was diagnosed with a rare and aggressive form of cancer in my parotid (salivary) gland in April 2011. I had surgery to remove the parotid gland and the lymph nodes underneath, where the cancer had spread to, followed by 30 sessions of radiotherapy. During the surgery, my facial nerve was severed, so I have facial paralysis on one side of my face, which has meant further surgery, physio and ongoing Botox!

I've had fantastic support from the NHS all the way through. A specialist Macmillan nurse was with me and my husband when we were given my diagnosis and I used their website and drop-in centre a lot, even now, almost two years after my diagnosis.

BlueyDragon

I was diagnosed with bowel cancer in August 2012. Since then I've had surgery to remove the tumour, and I am currently undergoing chemo to mop up any stray cells. The early days of diagnosis were a horrible shock to me and my family and friends, but between them and the medical professionals (including the Macmillan nurse at the hospital and the Macmillan helpline) we're getting through it. Now I have to deal with going back to work after prolonged absence and whilst still dealing with the chemo after-effects - my employer has been fantastic up until now.

Thanks everyone for their questions and I think it's wonderful that so many people are looking for the best ways to support people with cancer and those around them. If anyone has more questions, or questions they'd rather not share on this thread, I'll happily exchange private messages with them.

tacyn 

I was diagnosed in early 2012 just after the birth of my second child with a soft tissue sarcoma. I have had a lumpectomy to remove the original tumour (on my bum/hip) then further surgery following wound infection. I had four weeks radiotherapy on this site then four months of inpatient chemo (a doublet regimen) to deal with the spread.

My condition is chronic (incurable) so although I am currently not in treatment and cancer is in remission, I have to be scanned every three months to see if more treatment is needed. I have had support from Macmillan, my specialist nurse and the doctors and  nurses that treated me. I also see a dietician, psychotherapist and a physio to help with the effects of this plus massage and acupuncture. Most importantly, my family and friends keep me going.

Pamela, Macmillan Cancer Information Nurse Specialist
The fifth member of the panel, Pamela, a Macmillan Cancer Information Nurse Specialist.

Macmillan cancer information nurses provide support and evidence based information to people with cancer, their families, friends and carers. This can be about any aspect of their cancer including being worried about symptoms, information about treatment or care or to help make sense of their situation. It’s Macmillan’s aim that nobody should face cancer alone. Anyone can access information and support from a Macmillan cancer information nurse by calling the Macmillan support line free on 0808 808 00 00 (Monday to Friday, 9am-8pm)

 

Getting a diagnosis | Supporting those diagnosed with cancer | Helping over long distance | Offering the right kind of support |  Returning to normal if treatment finishes Gifts for those undergoing treatment | Waiting for a diagnosis before telling your family | After treatment finishes | Telling others | Understanding returning cancer in a loved one | One thing you wish you'd known | Recalls for testing | Lobular Neoplaisia | 'Blackheads'

 

Getting a diagnosis

"My advice, if you feel you are not being taken seriously, is to ask to see another GP if it's a group practice. I also found it helpful to write down a list of my symptoms."

Q. Swallowedafly: How easily did you get a diagnosis and what advice do you have about this stage? Do you have any advice for people worried about themselves or loved ones in terms of proper treatment by GPs?

Q. Tallwivglasses: Yes, I'd like to know that too. My ex-partner was fobbed off for months and he had lumps on his head and neck that were getting bigger. Finally diagnosed with lung cancer and lymphoma by which time it was too late. I'm also concerned about the pain and discomfort he went through, though to be fair, he wanted to stay alert for as long as possible.

A. Tacyn: The first signs of my cancer was when I had a painful hip/bum when pregnant with my second daughter. As I had something similar with and after my first daughter, I put it down to pregnancy aches. I mentioned it to my consultant and even saw a physio who just suggested exercises. Didn't say much about the lump developing.

Well, lump continued to develop and eventually I had an ultrasound to rule out a blood clot. By the time I had DD1 I was in excruciating pain and couldn't walk, sit or lie properly. Was whipped off for MRI the day after she was born then more tests resulting in lump removal three weeks later.

Maybe if someone had spotted this sooner I could have avoided pain like I have never known and the cancer might not have spread but as it is unusual type of cancer, it is probably simplistic to say that it would have been easily caught and treated. There is a very real chance I may die in the next few years. Cervical cancer is easily treatable if caught early on - for sake of bit of discomfort please get a check.

A. Pamela: More often than not symptoms can be caused by conditions other than cancer. GPs will assess the symptoms they have and the risk of someone developing a cancer to rule out other conditions before referring to a specialist.

However if a symptom persist for a few weeks we would always recommend going to the GP to have it checked out. The National Institute for Health and Clinical Excellence (NICE) provide Cancer Referral Guidelines to help GP's know when to refer to a specialist.

A. Sweetestthing: I was very lucky in that I was referred to a consultant for investigation and seen by him in under two weeks from my initial visit to the GP. I want back to the GP after a week, because I was concerned that my lumps were growing (I had an appointment for a fortnight after my initial visit, but was told to come early if I was concerned) and was referred that day to hospital and given an appointment to see the consultant three days later. I was fortunate that I was taken seriously by the GP, because in about 90% of cases presenting like I was, the cause is innocent. 

My advice, if you feel you are not being taken seriously, is to ask to see another GP if it's a group practice. I also found it helpful to write down a list of my symptoms, when I first noticed the lumps, whether there was any pain, if there was any change to my routine that might give some clues, etc. because when I speak to health care professionals, I often forget what I want to say. Polite but firm insistence will often work.

In hindsight, I think if I had felt I wasn't being taken seriously, I would have used the resources of Macmillan and asked for suggestions as to how I could be taken more seriously, or even contacted the hospital myself, but that demands a certain level of awareness about what you think your condition might be, which isn't always obvious. Mine certainly wasn't!

A. Pamela: Patients commonly worry that painkillers will make them drowsy and less alert. However there are many different types of drugs that can be used to manage pain. With stronger painkillers, such as morphine, there is no standard dose.

For this reason patients' are usually started on a low dose which is gradually increased by the doctor or clinical nurse specialist. By doing this there should be a balance of managing the patients' pain and minimising the side effects, including drowsiness, to ensure the patient has a good quality of life.

 

Supporting those diagnosed with cancer

"People often worry about what to say to someone with cancer; however there are no rights or wrongs."

Q. Bestbefore: What do you say when someone says their husband/partner etc has cancer?

A. KurriKurri: I think the best thing with anything to do with people affected by cancer is to say something. It doesn't really matter if what you say is a little clumsy - it's much better to show people that you are thinking of them.  Cancer affects whole families, and I think others often get forgotten in the concern for the patient.

I would say, acknowledge that you have empathy with their situation, as well as the shock of someone they love having cancer, they have most likely become a carer, their life has changed emotionally and practically. They will be worried, frightened, but also tired from doing extra tasks and picking up the housework/childcare/work shortfall that happens when someone becomes ill.

Cancer patients can be hard work (I can say this having been there!) Emotionally up and down, and steroids affect your mood quite considerably, so you can be snappy and irritable. So it is quite likely that the spouse may feel angry, upset, fed up, and not realise that actually all those feelings are OK. Often partners feel guilty that they are struggling, when their spouse is having to deal with cancer - they feel as if their troubles don't compare, and should be suppressed.

I would always ask them how they doing, and make firm offers of help, a trip out for coffee for a break, a chat on the phone, just being there with a sympathetic and unjudgemental ear if and when they need it, a chance for them to say what may be on their mind. Or to just let them talk about normal everyday stuff and escape from the cancer bubble which takes over your life.

A. Pamela: People often worry about what to say to someone with cancer; however there are no rights or wrongs. One in four people diagnosed with cancer in the UK will lack support from family or friends during their treatment and recovery. It's important to remember that being there for someone is just as important as what you say to them. 

You might find our information on talking to someone with cancer and our not alone campaign useful.

 

Helping over long distance

"There's nothing wrong, in my opinion, with someone getting in touch and saying, "Sorry not to be in touch before, just heard what's going on, that's terrible news and we're thinking of you" followed up with, "Hi, thinking about you all,".

Q. Jedigirl23: We have a friend who has recently been diagnosed. We have been a bit crap at keeping in touch since we all had children and now finding it hard to be supportive without being trite/disingenuous or worse, e.g. I realised today I was moaning on Facebook about my vague sniffle. Can you offer advice on how to be helpful? Especially when you can't actually go round to help out as it's too far?

A. BlueyDragon: From distant contacts, some of the best support for me has been ongoing contact in whatever form. So for example, I have a school friend with whom I didn't have much more than Facebook contact before diagnosis. Since diagnosis we've exchanged messages and letters and she has sent me some lovely care parcels of foot cream and warm socks (chemo can play havoc with your feet) and the occasional little present. But it's not the content that's made a difference, it's the ongoing communication. Knowing that someone somewhere is thinking of you and is relaxed about when/how/if you respond is really nice.

There's nothing wrong, in my opinion, with someone getting in touch and saying, "Sorry not to be in touch before, just heard what's going on, that's terrible news and we're thinking of you" followed up with, "Hi, thinking about you all" etc etc. I've always enjoyed hearing from my friends about what they are up to - it gives me something to think about and talk about other than cancer, because your world can really shrink to a round of hospital appointments and doctors and drugs and side effects. The friends who've been the best support are the ones who acknowledge the cancer, ask how treatment is going, ask any questions they want and then talk about other stuff, because although I have cancer it has not got me and being treated like "me" is the best thing.

I said the content of communication wasn't important but a) I think the best present anyone sent me was a pair of slippers (the foot cream and fluffy socks are a close second) - the chemo I'm on means I am very sensitive to cold in my hands and feet and warm fluffy slippers are a must for me - it might not be a side effect of all chemo regimes though; and b) I've never found it helpful to be told of miracle cures, or what supplements I should be taking, or the results of anyone else's Googling (usually highly inaccurate and very scary for everyone - I Googled one of my side effects once when I had a particularly bad week and convinced myself that I had irreparable damage to my stomach nerves meaning I would never be able to eat again, which did my mental state no good at all) so I'd stay away from suggesting anything that might help unless specifically asked.

My one exception to this is my mother, who has turned a combination of Googling and calling the Macmillan helpline into some lovely food to keep me and my thoroughly toxic body boosted. But she just feeds me it then tells me afterwards.

Their other half or whoever is closest to them and dealing with the day to day fall out also needs support, so if you can offer them a friendly ear that's also useful.

Some days are better than others, some weeks are better than others, so my friends who are relaxed about how often I get back to them or how quickly are the ones I appreciate the most. On some days I'm almost incapable of holding a sensible conversation because my brain just can't process it (please try and supress the chorus of "No change there then"); on other days I don't want to do anything but be left alone and some days I'm frantic to find human contact BUT I never know when these are going to be.

Please don't worry about moaning about sniffles and stuff - life goes on elsewhere!

A. Tacyn: Firstly, I will admit to having being mildly irritated by people moaning on Facebook and such about sniffles etc. I didn't actually post a pic of me having chemo when someone had posted a pic of how ill she was with a cold but was seriously tempted! But life does go on and when such issues irritate me, it is a bit like wishing all talk of babies, pregnancy etc would vanish if you are trying to conceive or have a miscarriage. So don't feel bad for being normal.

I think if you can't be with someone who is going through cancer, then contact (phone calls, letters, text, email etc ) is great. And the more normal the better as when you have cancer, you are still you, so still care and have other concerns.

I had lots of lengthy chats about our kids, death of Whitney Houston, office gossip, the Great British Bake Off, whether my wig made me look like Hilary Devine on Dragons Den, and wanted to hear about others' problems.

Also don't feel you have to protect the other person from issues in your life - a friend split up from her husband whilst I was being treated and I was grateful to be able to support and talk to her about her issues as it meant a lot that I could still be her friend.

Don't ignore their husband or partner if you know them well enough- they will appreciate a bit of moral support, chat, pampering etc as it is very tough on them too, especially if they are picking up slack with kids.

 

Offering the right kind of support

"If their family support network doesn't extend to cooking meals, looking after their children during appointments or much that is particularly practical, friends pulling together can provide that."

Q. Wigeon: A close friend of mine's husband has testicular cancer and has had his first round of chemo. I am really struggling to know how best to support her. I live about an hour away, and she works four days a week so it's not practical for me to drop round periodically. I text her sometimes, especially if I know her husband has had a big hospital appointment or something, but she often doesn't reply, which is of course fine - I'm pretty sure she just feels overwhelmed by it.

But I don't know how often to be in touch. What is enough so that she knows I'm there for her, but not so much that she feels hassled and annoyed?  What sort of support did you and your partners find useful when you were going through treatment? How much contact from friends was good? I'm also not sure how I can help, practically - is there anything which you found useful?

A. BlueyDragon: Carrying on keeping up the communication, on your friend's terms, is probably the best thing you can do. As I mentioned to JediGirl, the person dealing with the day to day fall out needs just as much support and a friendly ear may be welcome. The frequency is a tricky one and one you might not get right - I'd suggest you judge it based on how close a friendship you have and how much you might ordinarily be in touch and then up it a little from there. If it's any help, those who contact me frequently probably text/email once a week or so and then there are others who pop up maybe every few weeks. Either's fine with me, as long as they're relaxed about how quickly I respond!

From a practical perspective, it's worth considering what their support network might be and their personal circumstances. If their family support network doesn't extend to cooking meals, looking after their children during appointments or much that is particularly practical, friends pulling together can provide that. I'm very lucky in that I have an amazing family support network so the practical support is covered and my friends are mostly in an emotional support role, ensuring that I get out and do things (even just have a coffee) and cheering me up on the bad days. And you can always ask if you're unsure what might be best.

A. Pamela: It can be difficult to strike the balance between being supportive and feeling like you're hassling your friend. I suppose it's quite an individual thing too. Some people might like daily contact from their friends and others might just want to know that they are there if they need them. A good place to start might be to discuss this with your friend and maybe ask what support she needs. Our information on testicular cancer and how to help might give you a bit more guidance.

 

Support during remission

"Just let them set the tone - don't drop them or stop contact, as often the first spell out of treatment as you have no focus is horrid."

Q. Floweryhat: How can a friend best be supportive when the treatments are over and the remission starts? Practical help when needed was easy, but how to remain supportive during life after cancer with the ongoing checks etc?

A. BlueyDragon: The side effects of chemo can last for some time after treatment, apparently (I'm still undergoing chemo), so the practical support may still be needed if your friend is still very tired. I would imagine that having someone who knows you are still dealing with this disease and who is still keeping in touch, checking how they're doing and helping them get back into normal life - days out, going for drinks or whatever - would be very welcome in the post-treatment era. Again, ask them what would help and be prepared to be flexible.

A. Tacyn: Just let them set the tone - don't drop them or stop contact as often the first spell out of treatment as you have no focus is horrid (treatment provides this focus and it is scary when they stop). Ask how they are doing - listen to the reply. If you know when their scans or checks are, be aware that these are horrendously stressful no matter how well you feel so a sympathetic ear (and distraction) is welcome.

The hell of waiting for years and being reminded of where you were first diagnosed and confronting the fear of cancer spreading and coming back lives on. You may have forgotten about the cancer as time goes on but your friend won't, so be tolerant.

 

Returning to normal if treatment ends

"Thoughtful gifts might be a way to show your concern and care."

Q. Waterbiscuit: My best friend will not be having any further treatment. How do I stop myself from calling her every day? Or should I do so? I live hundreds of miles away in a different country. Should I go home? How do I be 'normal' with her when the situation is far from normal? How do I balance concern-from-a-distance against hovering-over-a-crisis? She'd never ask for me to do anything; we talk almost every day but not really about "it".

A. Sweetestthing: I think you're a great friend for thinking of ways to help her and I'm sure she knows this. Do you not talk about it because she's shown she doesn't want to? Again, I can only speak for what helped me when I was at my lowest point - sometimes a thoughtful text, just saying that someone was thinking of me, really made me feel cared for. A good friend used to write me letters, saying things that, face to face, would have been too emotional - is this something that might be helpful? Maybe you should just come right out and say you don't know what's best for her but want to do what would be right for her? Or can you ask her husband what he thinks? He might welcome some support - I know I really felt that the strain on my husband and children was immense and that they needed some release. Perhaps he would welcome the chance to talk to someone who cares as much as you do about his wife.

Small, thoughtful gifts might be a way to show your concern and care - you know what she likes, I guess? Or maybe a scrapbook of things that mean a lot to both of you: photos of you both together, memories of time spent with her, things that make you both laugh. It sounds as if you desperately want to see her again . I hope you find some way to comfort both her and you.

A. Tacyn: I am sorry to hear about your friend. Firstly, can you pour out your grief somewhere else - DH, other friends, counsellor, priest (if you are religious). You need to make sure that your grief has an outlet but not that it impacts more than it should onto your friend. Some of your desire to bombard her is better placed here, not on her - however much you love her.

I don't know how often you spoke or saw her so it is hard to say what is best thing but I would be guided by what you feel is right. If you chatted quite often then keep it up - if not, then by all means call (or maybe email, text or use social media. personally I would go for this as it is easier to respond when you feel up to it if you are unwell).

By all means arrange to go and see her but I would speak to her family first about when to go, how long for etc as you want a quality not quantity visit.

 

Gifts for those undergoing treatment

Q. Chimchar: What sort of gifts did you, or would you like to have received when you were undergoing treatment? A lovely lady I know is having a really shitty time at the moment, and has been told her survival is not likely to go beyond five years at the most. I really want to give her a gift to say that we're thinking of her, but I don't want to seem insensitive or belittle what she is going through.  Is there a right or wrong thing to say?

A. Tacyn: It is lovely you want to be so thoughtful. I think what people would like varies massively depending on age of kids, type of treatment etc. But as a general rule, any offers to help with kids (school run, have them over etc) are likely to be appreciated as most types of treatment either make you tired or involve lots of hospital time. Therefore not having kids to worry about is a big help.

"Offers to cook, hoover, do stuff round the house are great. It's all the kind of stuff that often get suggested when people ask how to help those with newborns."

Similarly offers to cook, hoover, do stuff round the house are great. It's all the kind of stuff that often get suggested when people ask how to help those with newborns.

On other gifts, that's a matter of preference but iTunes vouchers or kindle vouchers (as music, films, TV and books come into their own) or books and boxsets. Pampering sets (nice toiletries, nail varnish, bedsocks, pyjamas etc) are good. But I would be wary about food, especially if they are having chemo unless you know they are craving something - your taste and appetite can change lots.

Similarly offers to cook, hoover, do stuff round the house is great. It's all the kind of stuff that often get suggested when people ask how to help those with newborns.

What not to say? Well, there's loads I could say on this, but I will confine myself to the main areas.

  • Don't ignore the issue or avoid your friend. It is OK to be honest and say "this is crap" or "I don't know what to say."
  • Don't, however, say "I know how you feel" (you don't). Don't say "You will beat this" (how do you know) or that there are so many things that they can do - yes there are but unless you are an oncologist don't go there.
  • Also lots of people, like me, don't want to discuss or know details with their doctor (my husband does that) so why would you discuss it with someone else.
  • Don't say "You look well/terrible."
  • Don't get upset about it- I know cancer is a terrible thing but spare us your projections. I have a shit list now of people who have done this and it is amazingly hurtful and unnecessary. It is hard enough to deal with it without this so cry somewhere else.
  • Spare them any anecdotes - x got this and is fine or have you heard about y diet or thought about this. It is well meant but unnecessary as it strays into the "you will be fine" territory or out and out woo shit.
  • Don't cock your head to one side or use a gentle caring tone of voice - I have cancer, not a licence to be patronised.

And if I had a pound for every "your hair looks good" or "it really suits your head's shape" for hair comment post-chemo... I happen to like my hair like this but I am afraid that everyone says this to every chemo patient so it's sort of devalued.

A: KurriKurri  All the usual things for someone who is ill and having to spend time in hospital.

What about:

"The nicest things I got were letters and cards - my mother and wrote to me twice a week with news and gossip, my sister e-mailed constantly and sent little bits and pieces in the post. That sort of thing means a lot, when you know people are rooting for you and care about you."
  • Books and mags - I found audiobooks great for when I didn't have the energy to read myself.
  • Favourite tunes on an MP3 are also good.
  • Soft comforting clothing (because your skin becomes very sensitive) – fluffy socks, soft PJ's, cotton t-shirt.
  • Treats, like things to help with the nasty taste in your mouth and queasiness – I liked fruit and herbal teas, sweets you can suck, nice juice.
  • Nice potted bulbs - I had these, and I could watch them grow and flower.
  • Posh hand cream is good too

But really the nicest things I got were letters and cards - my mother and wrote to me twice a week with news and gossip, my sister e-mailed constantly and sent little bits and pieces in the post. That sort of thing means a lot, when you know people are rooting for you and care about you.

As for the tight and wrong things to say, anything that shows you care is good. But anything along the lines of 'you just need to think positively' or 'I know someone who had the same cancer as you and she's fine now' is to be avoided!

A. Pamela: You might find our information on talking to someone with cancer and how to help useful.

 

Waiting for a diagnosis before telling your family

"No one was upset that I kept the news from them until I knew for sure what I was dealing with - that includes my mum, who didn't even know that I was having any investigations, and other close family."

Q. Hopeforever: Having visited my GP this morning to talk about a lump in my breast, I'm waiting to be seen in the two week fast-track breast clinic. Is it best to wait until I've had a diagnosis to tell people other than my husband or will my close family be upset that I've kept this from them? I obviously am hoping it's just a cyst, but with two family members who've had (and survived) breast cancer I'm keeping an open mind.

A. BlueyDragon: I'm sorry to hear you're in this situation, it must be nerve-wracking for you.

I told anyone who absolutely had to know, which didn't include anyone other than my husband and my parents, until after I knew that cancerous cells had been found in the biopsy because I didn't want to worry anyone unnecessarily and nor did I want to deal with lots of people asking what the outcome was. I did tell one friend who was having treatment for breast cancer because I knew she would understand the worry I was going through. Everyone else could wait until I knew one way or the other – my husband and my friend were the best support.

If your family are upset because you didn't tell them earlier, you have the perfectly valid reason of not wanting to worry them. Whilst cancer does seem to end up being about the whole family, it really is up to you how you want it handled and who you want to know.

A. Sweetestthing: First of all, I hope it all turns out to be innocent and that you don't need this advice at all.

Speaking for myself, I told very few people that I was having investigations, on the basis that it might turn out to be something innocuous. I didn't want to have lots of people worrying about me if it was unnecessary. Only once I got my cancer diagnosis did I tell anyone other than that small group of people and even then, I didn't broadcast it widely. My husband and I waited for over a week before sharing the news with our son (aged 19) because we wanted to be sure that we could talk about it without getting upset and could show him that we were calm and positive about what was happening. I had to tell my then employer, because of the need for hospital appointments, etc.

No one was upset that I kept the news from them until I knew for sure what I was dealing with - that includes my mum, who didn't even know that I was having any investigations, and other close family. I think everyone took the view that it was my news and my decision to deal with it how I did and, quite honestly, being upset about not being told something is not something they focussed on.

In terms of "who needs to know and who will be your best support" - the people who need to know are usually the ones who will be your support! Once I had my diagnosis and told other people, the support network really started to fall into place. I found talking about my cancer very difficult in those early stages, so set up a contact network where either my husband or I would contact someone with an update and they would then share that with the people on their contact list (like the school contact tree!). I also found emailing much easier than speaking directly to someone.

I found practical support invaluable - people offering to cook meals, do our laundry, give me lifts to places - those sort of things helped remove some day-to-day responsibilities and left us all more able to concentrate on what was happening to me. In terms of emotional support, I relied very much on my husband and children, and another friend who had been through cancer treatment herself and was also a radiographer, so could give me some insight into what was going to happen at that stage of treatment. I found being prepared in that way really helped me deal with it. In my experience, people really want to help and give their support.

 

After treatment finishes

"I don't think life ever goes back to 'normal' after cancer, there will always be the nagging feeling in the back of your mind, and you will always worry about aches and pains."

Q. Doyouthinktheysaurus: I had cervical cancer around seven years ago and have since had the all clear. I've never really got faith in my body back though. I had no symptoms, didn't know anything was wrong until those fateful words. So now I'm healthy, but there's still that nagging doubt that comes up every now and again - how do I really know what's going on inside me?!

I fear if it's happened before, it could happen again. I know there is no basis for this and I do keep myself fit, running a lot and stuff but I don't think this fear will go. Does anyone else in recovery feel like this?

A. KurriKurri: I don't think life ever goes back to 'normal' after cancer, there will always be the nagging feeling in the back of your mind, and you will always worry about aches and pains. I don't really know a solution, apparently it gets better as you get further from diagnosis, but cancer is a massive blow to your confidence.

I can only tell you how I deal with it (but I won't pretend it always works). Having had cancer, you are more aware, you get to know your body better, and I believe you have a good idea if something is not right, - that's an advantage because you know to act promptly and be pro-active with your health. And doctors take you seriously.

I try to get back some control by being careful with diet and taking plenty of exercise. I work at relaxation - yoga, and meditation for me, but whatever is your thing. And I tend now to get on and do the things that I want to do. You can't change the past, or predict the future, so you have to get on with today, make the most of the good days and be kind to yourself on the bad ones.

Talking about it with people who have been through cancer helps, and I also read an article called 'After The Treatment Finishes - Then What?' by Dr Peter Harvey, which is full of insightful advice on this topic.

A. Pamela: Worry and fear are natural emotions to experience, especially after a cancer diagnosis. However if you feel it's starting to take over your life you might want to look at ways you can manage it. Here's some information on life after cancer, complementary therapies and survivorship that might be helpful.

If you feel it would be good to talk you can call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm) or talk to someone who understands in our online community 24/7.

 

Telling others

"Children are incredible in what they can understand if necessary"

Q. LIZS: Can I ask for tips for telling others, especially children, about another family member's illness even when we ourselves know relatively little and are not local? Also what support was most helpful to the patient at each stage of treatment - pre/post-surgery, during chemo/radio and beyond?

A. Blueydragon: It depends on the age of the children and the closeness of the relationship really. Macmillan has some good information on how to tell children about cancer but you may think it's not necessary to say much more to them than, "[Relative/friend] isn't very well and needs to go to hospital and have some medicine that makes her/him very tired", or whatever's appropriate to the level of contact and understanding they need to have. So my two (daughter age six and son, two, were told all about cancer and good cells and bad cells and needing to be in hospital to take the bad cells away, and then have some medicine that will make Mummy a bit poorly and tired but is to make sure all the bad cells are gone, but my niece and nephew, who we don't see very often, know that I'm not well but not much more than that. If children are going to see someone who is ill, it can help to know in advance if they've got anything attached like drips or oxygen tubes so you can forewarn children - my daughter was very freaked out by all the tubes I had post-op.

I guess what I'm saying, in a roundabout way, is don't say more than you have to but that children are incredible in what they can understand if necessary. Also worth considering is what might get said in the playground, as some children will have experience of people who die of cancer and it's worth having an appropriate response prepared if children raise this, depending on the situation - again, this may not be necessary for you as the relationship might be sufficiently distant for children not to be talking about it.

As for telling other adults, I haven't found an easy way to do this so I tend to do it rather bluntly. If I was passing on the news that someone else had cancer, then I would first think about whether that person would want me to pass the information on - I don't care who knows and will happily share the details, but others may be more private, or possibly embarrassed by the type of cancer they have if it is somewhere that's not generally a topic for public discussion.

The Macmillan literature on this is really good and I would recommend it to anyone. Also my Macmillan nurse has been wonderful and given some great pointers tailored to our situation. I haven't tried the helpline but they have given great support to family members with questions that I haven't had the answers to, so they may be able to give more specific help.

As for the support: I've drawn a lot of support from people just keeping in touch, maybe more frequently than usual but that's fine by me, and reminding me that there's a world going on outside a cancer diagnosis. Cooked meals can be helpful as sometimes simply cooking is the last thing you want to do because the chemo makes you feel so rubbish. The person dealing with the day to day can be the one who really needs support, so perhaps post-surgery they might need help with childcare so they can visit hospital, or during chemo lifts to appointments may be helpful. Radiotherapy can require daily visits to hospital for a period of time so again lifts might be useful if you're able to offer them. Ask and keep asking what you can do or what would be helpful if you're not sure, as every person's experience of cancer and its treatment can be very different.

A. PamelaIt's always difficult to break the news that a family member has been diagnosed with cancer, especially to children. We have some information on talking about your cancer and talking to children that you might give you some tips on doing this. If you're feel it would be helpful to talk to one of our cancer information nurses you can call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm).

 

Understanding returning cancer in a loved one

"Sometimes the best way to start is to tell her that you'd like to help and then ask her what she would find helpful. It may be that there are some practical things you could do – like cooking a meal from time to time."

Q. TicTacSir: My friend has a returning tumour for a third time. Early 30s. Three young children. Don't know what to do or say to support her. First one (stage 4) in the mouth; second one and this latest one in a lung. Also appeared in lymph nodes. Already had chemotherapy, radiotherapy... several ops. I so much want to help her but what is she fighting against here? She feels well.

A. Sweetestthing: I hope your friend has a treatment plan sorted and is receiving the care she needs. I don't know what she's fighting against other than this nasty disease but I do know that your care and support will be something that could really help her and her family.

Although she feels well, she might welcome some practical help, so that might be a way to help her - maybe taking her children out, or helping with shopping or cooking. Or she might just want to talk - sometimes I could say things to friends that I couldn't say to my husband because it was too raw and painful. I felt a great need to remain strong in front of my husband and children and tried not to get upset, so a release valve where I could cry and rage about the sheer unfairness of what was happening to me (and to my family) was absolutely necessary. Could you ask her what you can do to help?

A. Pamela: I'm sorry to read that your friend has been diagnosed with mouth cancer that has spread. It sounds like she is now dealing with a more advanced cancer now. You say she feels well which is great. And hopefully she'll respond well to further treatment.

It is hard to know how to help. Sometimes the best way to start is to tell her that you'd like to help and then ask her what she would find helpful. It may be that there are some practical things you could do – like cooking a meal from time to time. But firstly it's important for you to decide what you can realistically do. Sometimes just being there to listen is enough. Sometimes just taking her out for a 'normal' outing like shopping or a movie might help.

If you feel it would be good to talk things through you can call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm) to speak to one of the cancer information nurses. We would be able to get more details about her situation and hopefully be able to give you a bit more guidance. In the meantime you might find our information on talking to someone with cancer useful.

 

One thing you wish you'd known

"The one thing I wish I'd known before? That everyone's experience, even of the same type of cancer, is different."

Q. FairyJen: What is the one thing/tip that you know now that you wished you knew before the diagnosis?

A. KurriKurri: This is hard, but I think I wish I'd known that there is a lot of support out there, but you have to look for it. When I was having treatment, I was too ill to access things that could have helped me, and sometimes they aren't as well advertised as they could be. Local cancer support centres, national groups like Macmillan, agencies for support for specific cancers, young women's groups etc – I would start using these things straight away, as I found them hugely helpful.

A. BlueyDragon: The one thing I wish I'd known before? That everyone's experience, even of the same type of cancer, is different. My treatment regime is surgery and chemotherapy, but others I know of with bowel cancer have chemo then surgery, or radio and then surgery, or surgery only. Chemo is different for each cancer, meaning the side effects can be different (I've kept my hair, for example, but chemo for breast cancer often seems to result in hair loss), and can even sometimes be different for the same cancer. And chemo is not a precise science - the first few cycles particularly felt as though I was an experiment as we adjusted doses, drugs and administration techniques - and the side effects can differ even between people on the same set of drugs as you. So drawing comparisons even with those with the same type of cancer may not be useful. I went into treatment expecting something relatively straightforward with known outcomes and side effects and a clear path to the end, but that hasn't been the case and it is deeply frustrating at times.

Can I have a second one? That blood in your poo is NEVER a good thing and you should see your GP about it pronto. Even if you think it is just piles. If your GP is dismissive or uninterested, and sadly I know from experience that some are (not all of them, most are completely marvellous), keep hassling. I'm very young to have bowel cancer (38) and was fit and healthy with a good diet. I'm not a classic case. But here I am and I really wish I'd pushed the point with my GP sooner.

A. Tacyn: That there will be good days and bad days, things can improve as well as get worse and it is possible to have a normal , happy and full life with even the worst sort of cancer.

In the words of John Diamond, cancer is a word, not a sentence.

A. Sweetestthing: For me, the best tip is to let people do things and to show your feelings - both things I found hard, because I am a coper and was used to doing things, taking responsibility for decisions, etc. and to find myself in the position of being told what to do (and rightly so, by the experts) was hard. Showing my feelings was also difficult, because I have always just got on with things - it took me several months and sessions with a psychologist to see that showing my feelings about everything that had happened to me was absolutely healthy and that I needed to do it, not just for me, but also for my family, who felt they couldn't get upset or angry about it because I didn't!

As for what I wish I had known, this is a really hard question to answer, because there are lots of things I wish I'd known, at a practical and emotional level! I am going to cheat and say there are two things I wish I had known before the diagnosis - one is that life does go on after diagnosis and treatment; it might be a slightly different life, it might be that the pieces of your life jigsaw are arranged in a different, or smaller, picture, but it is possible to laugh, cry, enjoy, hurt - in short, to live a normal life, even if your "normal" has changed. The second thing is that I don't have to be defined by my cancer. I am still me, still the person I was before, but now I am living with having had cancer.

A. Pamela: You can read more about the ways Macmillan can help and living with and after cancer on our website.

 

Recalls for testing

"Try not to panic (hard I know) recalls happen for all sorts of reasons other than cancer."

Q. MeganlilyMai: My mum's had a recall. She had a mammogram last week and has to go for another tomorrow. Anyone had this?

A. KurriKurri: Your mum has presumably had her appointment now, and may have a better idea of why she has been recalled. Try not to panic (hard I know) recalls happen for all sorts of reasons other than cancer. However if they do find something suspicious, then she is in the very best place and will already be on track for her treatment and recovery. Once you know what is going on it will be easier to deal with, the ‘not knowing' is a very anxious time. I wish your Mum and you the very best, and hope everything turns out well.

A. Pamela1.6 million women attend the NHS breast screening unit each year. Around 4% of these women are recalled after a mammogram but only 1 in 5 of them will be diagnosed with cancer. Sometimes women are called back not only if an abnormality has been found but also if the picture just hasn't been clear enough. A mammogram will also detect benign breast conditions (non-cancerous) not just cancer.

The aim of the breast screening programme is to detect breast cancers in the earliest stages. We know that the earlier a cancer is detected the more treatable it becomes.

No doubt you have been worried sick about your mum's recall. It's a stressful time when a loved one has to go through tests and investigations but hopefully this information will offer some reassurance. You're also more than welcome to call our support line on 0808 808 0000 for support. We're available Monday to Friday 9am – 8pm.

 

Lobular neoplaisia

Q. Camacha: Is lobular neoplasia cancer?

A. Pamela: Sometimes called lobular carcinoma in situ, lobular neoplasia describes changes to the cells that line the breast lobules but it is not a cancer. Most women will not go on to develop cancer although it may slightly increase their risk. For this reason it is usual to have a regular check-up after it's been diagnosed.

 

'Blackheads'

Q. Invicta: One question I have is regarding the 'blackheads' I have on my boob following radiotherapy last year. I assumed they would just go. Should I squeeze them, or am I stuck with them?

A. Pamela: After radiotherapy it's common to experience skin changes to the breast. Your skin may be more sensitive due to the radiotherapy and squeezing may cause more damage. You might like to consult a beautician to see if they can recommend a treatment that might help. Your breast care nurse would also be able to give you some guidance. 

Last updated: 24-Sep-2013 at 2:41 PM