The Live Better With cancer community forum is an incredible family – every day you share emotional support and help each other with practical tips and advice. Here’s our roundup of some of the latest forum discussions…

There are around 363,000 new cancer cases in the UK every year, according to Cancer Research UK - more than 990 every day (2014-2016). Although more than half of new cases of cancer are breast, prostate, lung or bowel cancer, some are rarer types of cancer, but others fall into the category of cancer of unknown primary (CUP). Although CUP rates are going down, there are still around 8,800 new cases in the UK every year – making up 2% of all new cancer cases.

New member, juliecreative, was recently diagnosed with CUP:

‘I wondered if anyone else has CUP too. Would love some feedback, have had my first chemo…’

Unlike the most common types of cancers, such as breast or prostate cancer, CUP attracts very little publicity, so it wasn’t surprising that even active forum members such as RobertA and LouiseJ hadn’t heard of it.  CUP was, however, all too familiar to community member, Norrie, who – like juliecreative - had been treated with chemotherapy:

‘I am suffering from this. I’ve had radiotherapy and I take a chemo drug (Palbociclib) and hormone drug (Letrozole). I’m on my 12th round of Palbociclib and have very few side effects now. They found the cancer in my lymph nodes near my neck and seemingly it goes around my body and the chemo drug targets it and gets rid. The two scans I’ve had over the last six months have shown no cancer in my body, so the drugs are working for now. It’s the thought of always having to take the drugs that upsets me sometimes, but I suppose I’m lucky compared to most of the people on this site.’

As LouiseJ said, sharing information on a less common cancer can be very helpful and thought provoking, even if the diagnosis is different from one’s own:

‘Thank you so much for shedding some light on CUP, I had not come across this before. To be honest there are so many cancers I hadn't heard of until I joined the community and others shared their experiences. I am assuming that the cancer travels via your lymphatic system and reared its head where it wanted to? I am so glad that the chemo drug and hormone meds are proving effective in getting rid of the cancer and that you have very few side effects from taking them. I can imagine the thought of having to take them always must at times get you down.’

Louise J also had some reassuring words about chemotherapy for juliecreative:

‘I hope you are managing with the chemo… It is an up and down thing, depending on the type of chemo, you may find you have good weeks and bad ones. I made sure to take all the anti sickness meds I could get my hands on, which I found really helped me. Please don't hesitate to get in touch, there are many of us here who have been through chemo. We understand what it is like. Even if the cancer is different, quite often we experience many similar side effects and other issues resulting from cancer. You will find lots of encouragement, support and friendship here.’

RobertA agreed:

‘We may have different cancers, but we are here to support and encourage each other. We don’t mind when someone is having a bad day and we celebrate the good ones together. I hope you will keep in touch.’

Read the full thread here.

For more information on CUP, visit Macmillan Cancer Support.



Looking out for the positive

Although many of our forum threads are about specific cancers or particular types of treatment, some develop into a more general conversation that takes off in a variety of directions. For example, Sunshinedaff posted a thoughtful message on an October Friday…

‘I know for some another round of chemo has just begun, others are beginning a new type of chemo or going for yet another round of treatment or in hospital. I hope for all these days pass as side-effect free as much as possible.’

 She also shared some good news about her progress and about a welcome chance meeting with someone special:

‘Today I was able to go swimming, the first time in a long time. I met a lady who I know, and hadn't seen for a very long time. It was her first time back too since Feb. Unfortunately she was diagnosed with cancer in the womb, a massive shock for her after having been free of breast cancer for 18 years. She is a wonderful lovely lady, has been through so much recently and although much of it very painful and difficult, she brings joy and a kind word and thought for others wherever she goes. It is a privilege to know her.’

In no time at all, other forum members were sharing details of outings, events and activities that helped them feel better and more positive about things, despite living with cancer or going though cancer treatment.

For jackspart x1, it was spending time with some very special family members and celebrating an important birthday:

‘I have seen a lot of my darling grandchildren, which is great! Although little I gave me a huge unexpected snotty kiss and I went down with a three week cold and chest infection! But do you know it was worth it just to know how much she loves her Nana! She is 14 months now and walking about picking flowers and flower is her favourite word! T, H and F are wonderful too, F just celebrated her first birthday! So pleased to have shared their first birthdays when I think I was so scared I might not achieve that.’

You’ll find much more to enjoy in this uplifiting online conversation, which you can read in full here


Karin Sieger on coping with cancer when you are self-employed

Our online community forum discussions are full of helpful tips and advice but Live Better With also has a panel of cancer experts who can offer much-needed support and information on many aspects of cancer and its treatment.

This month, for example, cancer counselling specialist, Karin Sieger, had a special message for people who are self-employed and living with cancer or having cancer treatment. There are now more self-employed people than ever in the UK – an estimated 4.8 million - and one in two of us will be diagnosed with cancer at some point during our lifetime. Whichever way you look at it, that’s a significant number of people trying to keep a business afloat, while coping with cancer, either directly or indirectly.

As Karin says:

‘Whatever your cancer, prognosis, whether you are going through treatment, are in remission, living with cancer, are a relative or friend – being self-employed, earning a living and staying afloat despite cancer can be hard and sometimes impossible. I was self-employed when I received my first and second diagnosis. Finding a way of working that fits in with our health and financial needs can be a really hard balance to strike. Therefore, I know how precious any kind of support can be.

‘With that in mind I have launched a new support project for people affected by cancer - I call it In Business Despite Cancer. It is intended to assist you in raising the profile of your business online, and depending on how many people take up the offer, I am thinking of running networking sessions online for mutual support and exchange of ideas etc.’

You can learn more about Karin’s groundbreaking initiative here.


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