[CANCER] Event for ‘Younger Women’ with Secondaries with @BCCare #YoungerWomenTogether

When I wrote about how good the ‘Younger Women Together’ event for women with primary cancer (under 45) was, I never anticipated that I’d be back so soon for an event for younger women with secondaries (or metastatic cancer)! I am, however, very grateful for the fact that these events exist, because it just helps so much to be in a space with other women who are in the same situation to you.

Introductions//Thyroid Scan

I missed the introductions as I had an appointment at the Christie on the Friday morning. I had written in my diary that it was an ‘ultrasound for thyroid’, but hadn’t read the letter that also said that it was a ‘Fine Needle Aspiration’ (2 small needles into my thyroid/neck). The specialist said that he can’t see anything suspicious on my thyroid (2 are slightly larger, but not uncommon, but ‘because of your history, it’s best we check’ (how many times do we hear that?!). Anyway, got next appointment with the oncologist on 18th March, so should get results then.

Medical Update: Management of Secondary Breast Cancer in Younger Women

I joined the event as Dr Elena Takeuchi was showing some stats, and discussing the way that cases for younger women are managed with advance/secondary/metastatic breast cancer (concerns are often different than older women with breast cancer, especially around work, fertility, etc.).

There were a lot of stats/charts in this session, focusing on the fast-changing nature of the situation (and therefore the hope that is there for treatment, if not cure), with a big focus on individualised treatment, and the fact that there are still a lot of options.

I loved, and am a bit overwhelmed, by the number of people it takes to get us through (and in conversations afterwards, the patchiness of some of this provision – part of why I’m very grateful to be part of the Christie network)

‘Supportive Care’ is the name that some palliative care departments are calling themselves (because of the association with ‘end of life’ care)

Palliative Care

I think I enjoyed this session with Tracey Coleby the most over the weekend, despite being quite nervous about going – that it might be that focus on end of life care (or that’s what people in the group would ask questions on). It appears my notes will have likely come up at MDT’s that Tracey will have at been at over past few weeks!

Tracey talked about efforts made to rename palliative care (as supportive care), and that before too long, that too would become associated with end of life care, so it’s more about re-educating people that palliative does not necessarily mean end of life care (and hospice is not necessarily end of life either). End of life is a fairly small bit of the job.. it’s more about patient centred care and effective symptom control (some are Macmillan nurses – but that’s about who funds the post).

Described as a holistic approach, individualised care, advance care planning (not waiting for the end – e.g. in planning treatment, is travelling, etc. still important to you, so does that affect the type of treatment and it’s potential side effects), supporting a good quality of life… dealing with social, physical, financial, mental, etc. The expectation is that if side effects are managed to give a good quality of life, you’ll tolerate the treatments for longer, therefore a ‘better outcome’.

At the Christie, they’ve been working on a more collaborative approach to working, between the medical teams, nurses, and the community (e.g. GPs – although I went for my Zoladex injection 1 week/5 weeks after secondary diagnosis, and the GP system hadn’t flagged my new diagnosis up; this is particularly important because WE LOOK WELL, and GPs are not specialists, especially in metastatic cancer).

There’s a lot of emphasis on symptom control, trying to keep appointments together, because time is precious (although I had 7 appointments this past week, it did feel that calendars between the hospitals had been looked at – it’s a bit like the university calendar management – got to balance academic/student calendars – or in this case consultant/patient!); keeping on top of side-effects, etc so that there are less CRISIS interventions; and – if the patient is open to it – open and honest conversations about next steps/options.

There’s a question of standardisation of expertise/access around the country (it’s a bit of a postcode lottery – I’m not in a hurry to leave the area that the Christie covers!), so some people will get this as part of what their team provides or signposts to, and other patients will have to actively seek out palliative care teams and hospice visits (where inpatients and outpatients are typically kept separate – are options for daycare and complementary therapies). The key question palliative care teams ask is WHAT DOES THE CANCER STOP YOU DOING (and can they help you do it?)? Question of CONTROL. Look out for Secondary Days in Manchester.

We heard Paula’s story … Paula was originally given a very small handful of months to live, and had reached this state (TBH, a state I totally fear)…

but with help from the palliative care team, her pain was managed, she was given new drug options, and ‘got her life back’, travelled a lot, and survived about 8 more years.

When Tracey joined the Christie in 2008, just seemed to be a series of crisis points, and feels this is now much better managed – planning for both best and worst case scenarios, with a care plan in place at MDT before the patient comes in for the clinic (typical for surgery, less for other specialisms). Also trying to ensure that nurses are not there ONLY for bad news… can be involved from first primary diagnosis – don’t need to wait for pain/mets.

Trials are aways considered when there are changes in the tumour – note that for trials ironically need to be relatively well (to be able to withstand the treatment), and for the time delay, etc. It seems that belief impacts behaviour, pain – drains energy. Don’t assume that all symptoms are about decline, but can also signal an improvement.

About QUALITY OF LIFE – to be as well as you can be for as long as possible. It’s all very individual – try not to compare with others.

Exercise Session

This session was run by Kevin Kipling, and we talked about how cancer had affected our mobility and energy levels, plus the options that we are taking up (of course I mentioned Pokemon).

We looked at walking, cycling, and swimming (when not on chemo) as being the best aerobic activities, whilst weight-bearing exercise (own body, or supported weights) helps build bone strength (build up kg/reps gradually).

Consider using resistance bands as well as body weight, build HR gradually, and look at 150 minutes of exercise (about 30 mins a day – at a good heart rate – and yes, housework, etc counts), with around 2 resistance exercise sessions in there. Also flagged up that there are GP referral schemes such as PARIS.

Social Time

There was time before dinner to go to the Cloudwater Brewery (no, I don’t like beer, but I like trying new things), raising a glass to Angela, who only reached 41 before cancer took her :-(. After dinner, a handful of us headed out briefly, before returning to the hotel for 2-4-1 cocktails:


View this post on Instagram


Last few hours of 43 🙂 #busylivingwithmets #cocktails #birthday

A post shared by Bex Lewis (@drbexl) on

Clinical Research/Trials/New Treatments

After a good breakfast, it was time to join Dr Donna Graham in her talk on clinical trials…. very complex, but many many options, including for women with secondaries. She looks after all kinds of clinical trials for all kinds of different cancer – can affect treatment, risks/causes, prevention, screening, diagnosing or controlling symptoms. Today’s talk to be focused particularly on drug trials, and how they can make a difference.

A lot of research has (and is) done into biomarkers – such as Oestrogen positive or Herceptin receptive cancers, and now there’s a lot of research into genomes (and immunotherapy is quite a trendy research area too).

We started, unexpectedly, with the Bible (although this apparently quite common!), before popping along to James Lind/Scurvy, and Hanahan and Weinberg:

We looked at what is a clinical trial (aka, why can not everybody just be given this medication when it’s discovered?), and how it’s often ‘easier’ to block an overactive element than stimulate an underactive one.

The phases that clinical trials go through before they become standard medication (including mandatory trial on 2 x animal species before tested upon humans):

We see how it can take 20 years, and about $1 billion of investment (and lots of ‘failed’ research at further cost) before a drug can be registered for standard use – note that trials can be abandoned at any time by the trials companies (if you’re one of the rare people it was working for, can be difficult to get more drugs in that case):

And looked at the number of patients involved at each stage (e.g. the Optima trial I joined to see if chemotherapy would benefit is Phase 3, and the CORE trial I was originally offered for stereotactic radiotherapy was Phase 2/3)

If you’ve joined a trial, if it’s clear that it’s not working, or the side effects are intolerable, you’re not committed to sticking with it, and likely to be taken off it. Even once a drug is on the market, it will be subject to ‘post-market surveillance’.

To be eligible for a trial, you either need to be very well, or out of other treatment options (and therefore have little to lose on an unknown drug … there was definitely some people in this situation at the event :-(). In some ways it’s quite depressing to see that most increases are listed in months (e.g. 18 months), but that is considered a success (whereas a couple of weeks isn’t).

There are efforts to look at global recruitment and collaboration in order to get drugs to market faster (hopefully at less £). There are hundreds of trials happening at any one time, but in the USA last year there were maybe 15 oral drugs approved by the FDA (no idea on IV drugs), and that doesn’t mean automatic licensing in UK. A lot of drugs are currently approved by the EMA, in the UK drugs have to be approved by NICE (especially to be approved on the NHS, and only in certain situations – e.g. I need pertuzemub, but I can only have it with docetaxol chemotherapy (one of the nastiest), even though I don’t really need the chemo). Someone asked what is Brexit going to do, and of course NO ONE KNOWS – which is quite terrifying!

Some of the trials currently (or recently?) happening for secondary cancer: TULIP; PlasmaMatch; TARGET and AURORA.

Finding trials (as your oncologist may not necessarily be aware/offer you all options):

And in our region, there are active participants of ECMC. So here’s to good communication:

Adjusting/Adapting to a Life-Limiting Illness

I know I ‘look very well’, which most of the time I’m very grateful for, but sometimes it’s frustrating that people just expect you to be ‘back to normal’ when your head if quite scattered, and your body is going through so many more tests and treatments – which require you to be at home (very thankful for the way my house has progressed over the year), and a lot more time in bed, and everyone else’s life seems to continue. As there were other sessions on dealing with diagnosis with your children on at the same time, it was really helpful to be in a session with people who also don’t have any (sadly, most of whom want/ed children), and think about the challenges we face (and strategies for managing them), especially the responsibility/guilt we feel for those around us, and how we need them to help us get through (and how little support there is for those ‘PABC’ (People Affected by Cancer, but who don’t have cancer). Session was facilitated by Helen Miller from the psychiatry team at the Christie.

So I appreciated this from my colleague Jeff (and MMU for featuring me on #IWM19):

Other Services Available

We discussed the range of options available at Breast Cancer Care (including specialist secondary nurses, as many BCNs are much more familiar with primary cancers), and other places to go for support (I’m too old for quite a few of them):


At the end, we risked nodding off, in a guided mindfulness session with Kelly Birtwell from Uni of Manchester.

Birthday Celebrations

Also last year, I had chemotherapy on my birthday, and was looking forward to a more fun celebration this year!

To be fair, I did have fun – and went out for some cocktails after the event:


View this post on Instagram


Found a few more friends #birthday #busylivingwithmets #cocktails #waiter

A post shared by Bex Lewis (@drbexl) on

and some food:


View this post on Instagram


Hot drink time then probs some sleep … lovely day #birthday #busylivingwithmets

A post shared by Bex Lewis (@drbexl) on

And so lovely to be remembered by so many people:


[CANCER] Moving Forward Course with @BCCare

So today, I’ve just finished the ‘Moving Forward‘ course run in partnership between Breast Cancer Care and hospital trusts (Stockport in my case). For 3 hours over the past 4 weeks, around 12 of us have gathered in a (rather hot and stuffy) room at Stepping Hill Hospital to think about where next. In the past, people used to finish hospital based treatment and effectively ‘waved goodbye’, but this is the point at which help is needed – as the survival tactics that have kept you going throughout everything, and the regular rhythm of appointments, have disappeared … plus everyone thinks you’re through it, and assumes that you’re going to ‘go back to normal’ (if there’s ever such a thing!)

Week 1: The Menopause and Lymphedema

The information here was very similar to that from the Younger Women Together event, but it was useful to have things reiterated as the treatment to bring on early-chemical menopause (and all it’s fun side effects) is about to start. Managed to avoid lymphedema so far, but it’s a lifetime risk, with 1/4 likely to get it post surgery (I can see from others it’s not the end of the world, but it also brings with it more hospital appointments, and a need to manage it, so reducing risks is key).

We were given a ‘Moving Forward‘ book to take home and read at our leisure, and were shown a couple of graphs normalising the fact that recovery is not straightforward – one is in this article and the following diagram demonstrating that as physical health improves, the mental health has to work harder:

I did discuss this diagram with my counsellor at the Christie a couple of weeks later, because it seemed to have embedded itself into my head that part of the process will be having to fall off a mental health cliff, and that, in many ways, is more scary than any thoughts of cancer recurrence (yes, there’re there, but if you’ve ever been down a depressive hole, you’ll understand!).

Week 2: Symptoms & Services

The second week focused upon the symptoms to look out for in the case of a possible recurrence (something we all fear) in a way that sought to emphasise that it’s not a given that it’ll come back but that we need to become familiar with our new shapes, and highlight anything that’s not normal. There was a discussion between those who felt every symptom was possible cancer, and those, like me, who don’t like to waste people’s time, but also don’t want to leave it like I did last time… general advice is that if it’s obvious then get it checked, if it’s something else, then 2-4 weeks is a reasonable timeframe – and continue using the BCNs for advice (even if they are seriously overstretched!). One tool recommended by someone in the group was the CoppaFeel Remind Me App, which will send you a text once a month to check for anything unusual (same as the rest of you should be doing, as the earlier this stuff is caught…).

We then talked through the range of services that Breast Cancer Care provides, including the BECCA app (which John Knight from Big Lottery Fund mentioned to me as being super impressed by the research it was based on), and also a host of other online and local resources that we can tap into, including counselling, retreats, podiatrists, freebies (I’m looking forward to urban axe throwing which I won via Ellie’s Friends)…. Breast Cancer Care finds that this information can be patchy depending upon which hospital you’re seen at, so are looking to create (well, update) their list that can be easily circulated.

Week 3: Counselling and Lingerie/Prosthetics

In the third week we got the opportunity to talk about the things that worry us/make us anxious (it’s helpful to hear you’re not alone in your fears!), including managing expectations of other people, recurrence, having a short fuse, etc. We talked through how normal most of these are, some ways of managing anxiety, including the 5-5-5(-5) breathing technique.

We then had the super-enthusiastic Geraldine Hurd, from Betty and Belle in Altrincham, a lingerie designer for 20 years, who went to volunteer for Macmillan and discovered the dire state of post-surgery bras and swimwear. She set up the shop 11-12 years ago, and people travel from all over the country for fittings as they “specialise in fitting women who are traditionally difficult to fit”. There’s definitely a massive range of products out there, and they’re not all granny bras!

Week 4: Fitness and Relaxation

Today, we met Claire from Stockport’s PARiS scheme (which I have engaged with, but post-radiotherapy fatigue, and decluttering have taken precedence, but I can reboot!), did a few chair based exercises with elasticated stretches, and talked through the possibilities – and I was not the only one to feel like we used to be super-fit, and now have to start again (and I’d just been doing that pre-diagnosis) and there’s a real danger of over-stretching – but that’s the point of the scheme.

We then had Colette from Beechwood Cancer Care, which I’ve not engaged with (been to Maggie’s, which sounds similar), who gave us a guided visualisation (something that, along with mindfulness, I still feel pretty rubbish at), talking about ways to manage anxiety, and also the things that we can do at Beechwood.

Final @breast_cancer_care ‘moving forward’ session. #classyselfie

A post shared by Bex Lewis (@drbexl) on

Apparently what is done at each of these courses is different, partly depending upon availability of experts.


[CANCER] A Space for Sharing, play by @DeadEarnest for @Space4Sharing

On Friday I went to watch ‘A Space for Sharing‘, a play by Dead Earnest, resulting from research undertaken by the research project ‘A Shared Space & A Space for Sharing‘.

Made it for the play on social media/breast cancer. #spaceforsharing

A post shared by Bex Lewis (@drbexl) on

The play was really well-put together, drawing upon generalised dialogue from the Breast Cancer Care forum – and I recognised pretty much every conversation that was had (and recognised the regular side effects). The actresses (and yes, it was an all-female cast) turned their chairs to face the audience when they were ‘online’, and turned them to face the wall behind if they were offline. They read out what they were writing aloud as we watched the interaction/dialogue. Each of the five actresses had (I think) one opportunity to speak directly to the audience – explaining some of the things they were/weren’t saying online – including one actress sat on the end for 3/4 of the play who ‘lurked’ in every other conversation. One member was pregnant throughout treatment, and we watched one member die (and take a seat off the stage), before they came back together to address the audience. There was a lot about building up the trust to share – making forums a safe space to share – and a clear benefit offered by the 3am chats, and also the question of when do people need to take a break from the group.

At the end of the play, there was around half-hour for Q&A and commentary. The first comments were from ladies with secondaries, who said that the script was spot on for ladies with primary cancer – but not for those with secondaries. Another comment questioned why no male actors (as men can get breast cancer too). The response seemed to be that because it is based upon online conversations in the main areas – it reflects the conversation there. Ladies with secondaries tend to disappear into a separate forum and the conversation changes, whilst the men seemed to not develop that kind of dynamic in the first place. There was then conversation about how much those of us who had been through treatment felt the benefit of these kind of groups, if we’d like more recommendations of groups on diagnosis, how we found any groups that we’re in (YBCN through page, and UK BCS&S via a friend, were the first 2 I joined)- and with the Chief Nurse for Macmillan – Karen Roberts – saying that she supported what she had seen on stage. I had a chat with her afterwards and appreciate the efforts that Macmillan are making to look at the use of digital (they employed a ‘digital nurse’ last year, that I’d read about, and are planning to expand that to overnight availability, plus some other projects), and hurrah that she thinks that online is ‘not so very different’ – so my sense that online social media cancer forums are great for support, but the drawback is that you’re closer to hearing about recurrence/death – had always been the case with offline support groups (but there was less 24/7 support). People need to feel unafraid to share relapses, although it may scare others in the group … we discussed the need to face our mortality (we all only die once) – including the projects ‘Art of Dying Well‘ and ‘Dying Matters‘.

It seems that every time that this play is done, it changes somewhat based upon the feedback from the Q&A, and upon the most recent research. Peter Bath indicated that when they say forums, they mean social media also.

The play, billed largely as about those who had supported each other on social media – and two of them meeting face-to-face – was echoed by my experience that evening, as I met up with a friend who was diagnosed around the same time as me, and we had connected via Twitter (after being Twitter friends with her husband for a long time over faith-tech) – and so I went with Rachel, and stayed with them overnight! Excellent evening…


[MEDIA] ‘What can I do to help?’ How to support someone through treatment with @BCCare #BreastCancer

So, I may not be able to teach this year, and having lumps of sick time for chemo recovery, although hoping next day or two I’ll be back working at home, just clearing a few untidy decks after the last 11+ days of nausea. I REALLY don’t want to do the next chemotherapy, but obviously I will…

I have, however, chatted to Breast Cancer Care, and they’ve put together a blog post based upon some of what I’ve posted on this blog about Breast Cancer + a few extra convos, about some ideas to help those who are going through treatment (especially with Christmas coming up, most of mine I’m likely to be bedbound, and unable to spend with extended family as planned):


[CANCER] Weekend Away with @BCCare #YoungerWomenTogether #BreastCancer

This weekend, I’ve just spent a really helpful, encouraging and uplifting weekend with 43 other women, all under 45, all undergoing treatment (or maximum 3 years on from treatment) for breast cancer. The weekend was provided by Breast Cancer Care “the only UK wide charity providing care, information and support to people affected by breast cancer”. When first diagnosed, the resource pack provided by the charity was really helpful in helping me (kind of) get my head around what was going on – and they deal only with evidence-based research.

They deal with all age groups, but know that for younger women, you’re often 20 years younger than anyone else in your treatment centre, and have very different issues such as work, fertility, etc. to deal with – so they bring ‘Younger Women Together‘ – and seeing others who have been through, are going through, or are about to go through the same as you really helps … so many tips on how to deal with e.g. my upcoming chemo. If you’re under 45, undergoing treatment, I highly recommend it! 

Friday, 24th November

We arrived at Holiday Inn, Manchester on a chilly morning. After registration, welcome, ice-breakers and an early coffee-break it was the time of the first of three sessions (I really liked the fact that there was lots of space for socialising – or a rest if you need it – fatigue being a known side-effect of cancer treatment!).

One of the other guests had a wig (and scarves) to pass on, see that to the right … actually looks quite like my hair beforehand! To give a sense of the content, I’m sharing some of my notes…

Medical Update – Management of Breast Cancer in Younger Women

  • Around 60,000 women are diagnosed with breast cancer every year in the UK.
  • 20% of those are under 50. 4,928 cases were under 45 last year (nearly 3,000 in the 39+ age group).
  • There are over 200 different types of breast cancer, but most are invasive.
  • Treatment plans are very different depending upon a range of factors – a lot of current trials are investigating if patients are over-treated (with e.g. chemotherapy).
  • It seems that younger women are more likely to have Grade 3 cancer.
  • NICE guidelines were last updated in 2009, and are due to be updated next year.
  • Chemo brain does affect a number of people, have to learn to make adjustments: make lists, de-stress, ask people to email requests as won’t necessarily remember.
  • Bones may be affected – may need to consider calcium and Vit D (Oct-Mar) supplements + weight-bearing exercise. DEXA scan = not common unless a family history of osteoporosis.
  • Some advice on living with the fear ‘of it coming back’: keep note of ‘anything new + persistent’, 1 year post-radiotherapy will be ‘new normal’
  • 2/3 of breast cancer is self-detected, though will be yearly mammograms with scans used for symptoms.
  • Most breast cancer is ‘bad luck’ rather than explicit factors.

Break Out Groups: Menopausal Symptoms (rather than breast surgery/reconstruction, or relationships and communication)

  • There’s not enough research on the menopause and it’s impact on life/work in general, and even more so for chemically induced menopause (though my colleague Prof Carol Atkinson is working on this within a business context).
  • As menopause is chemically induced, will come with sudden, severe symptoms (tied to the medication).
  • Oestrogen positive cancers = doesn’t mean an abnormal amount of oestrogen, but the cells like feeding on it – need to limit this.
  • People typically feel vulnerable as adapting to a new sense of self, see The Daisy Network.
  • Will be 2 years post-chemo before likely to be considered post-menopausal.
  • Herbal remedies are suggested in the first place, though not anything with phyto-oestrogen in it (red clover, black cohash, soya supplements *in food it’s OK), and obviously no HRT.
  • Glucosamine, rosehip, fish oils are good for joint pain; Sage in high doses is good for hot flushes, and Evening Primrose Oil for mood swings. Taking supplements is cumulative, so try one at a time, allow 6-8 weeks to see if improvement in symptoms.
  • Complimentary practices: acupuncture (hot sweats), aromatherapy (wellbeing), hypnotherapy, massage (relaxation) and reflexology (stimulate energy)
  • All drug options have side effects, but if menopause symptoms are bad, then ask for them.
  • Drink a lot of water, consider Chillow and Knicker Magnets.
  • Relax, distract yourself, yoga, counselling, CBT, exercise, and make yourself a priority. 

Wellbeing Session: Mindfulness (rather than laughter therapy)

  • This was a very practical session in which we undertook mindfulness exercises, including breathing, body scans. If I could remember the names of them, I’d look on YouTube, but included mention of the Headspace App that I’ve been using for last couple of months.
  • We also undertook mindful eating with a chocolate button or Minstrel, as I’ve done in the past with Beyond Chocolate, and a reminder that it’s useful to seek to undertake a couple of mouthfuls of mindful eating to consider if what you’re eating is really ‘hitting the spot’, before you go off seeking something else.
  • There was a recommendation when concentrating on the body to ‘feel it’ rather than just ‘thinking about’ different parts of the body.

Lovely meals were provided throughout, and we met in the bar before the evening meal in time to take advantage of 2-for-1 cocktails if we wanted to. Lots of conversation, some of it about cancer, treatment options, life decisions since, some of it more general random conversations that you’d expect!

Saturday, 25th November

It felt like an early start for 9am, despite going to bed pretty early the evening before, but more useful information

Services from Breast Cancer Care

Break Out Groups: Lymphoedema (rather than intimacy or fertility)

“Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.” NHS. The intention is to try and prevent lymphedema in the first place, but it can be managed if it happens.

  • Not classified until long-term swelling (3+ months), is a lifelong risk.
  • Look out for tightness, lack of flexibility, heavy arm, swelling, marking on the skin – the sooner that it’s caught, the better.
  • Mild: compression sleeves, drainage exercises + skincare
  • Moderate: Learn triggers such as e.g. flying (visible swelling).
  • High: Refer to clinic where likely to be given tight sports bras (down a size to pressurise the swelling), and Kinesia taping.. try to get back down to moderate.
  • Any cuts/damage to the arm that has had lymph nodes removed = cover in anaesthetic and if not improved 24 hours later, go to GP. Try and avoid mosquito bites (look out for bands on Amazon said one other guest), avoid sunburn, and care with sudden temperature changes.
  • Most important tip is skincare – keep the skin moisturised so it doesn’t dry/crack. Will be taught lymphatic drainage techniques – do physio activities given after surgery until have full-range of movement.
  • Exercise and weight management are key. Blood/lymphs have been cut in surgery and need to rejoin – start with light/low repetitions and build up. Listen to your body. Use thimbles if sewing, gardening gloves, etc… Avoid any skin splits… Recommendation is blood drawing/blood pressure should be done on the ‘good arm’.
  • Are questions about jacuzzi/sauna use, whether to use, whether to leave arm out – no clear cut answer, but extra heat makes the lymph nodes more pro-active and puts pressure on the system.
  • If get cellulitis, get treatment immediately (rash, red blotches, red streaks, pain, tenderness, swelling, fever, chills). Take antibiotics (and Drs will let you take pre-emptively prescribed antibiotics if going abroad). If arrives – mark with a pen, so can see how/where spreading.
  • Swimming, yoga and tai-chi are all good – don’t over-repeat exercises, if tired – cool down & elevate the arm, don’t suddenly increase exercise intensity, listen for pain.
  • Cording impacts lymphedema – like stretching out an elastic band = exercise.

Healthy Eating and Diet Myths

  • Cancer is a multi-factorial disease, with no magic cure in diet, but diet has an important part to play in nutrition/recovery. Listen to dieticians, rather than nutritionists, etc. as dieticians are professionals with protected certifications.
  • There are a range of steps that information has to get to, to get to a level that they will be provided on a clinical basis – e.g. current fuss about turmeric – is only on ‘animal research’ level of the following diagram, no problem with people eating it – wary about taking as a supplement:

  • We’ll be sent a document linking to resources to check out the links people are likely to send us, the ‘good’ sources of information.
  • Mediterranean diet recommended (over Western diet): wholegrains, oily fish, healthy fats, fruit & veg in natural forms, rice, nuts, pasta and fruit. Less red/processed meat (although red meat has other health benefits), salt, sugar and alcohol (whilst recognising that life does not need to be monk-like).
  • Concerns about dairy are related to Mad Cow Disease in the 1990s – in the UK the extra hormones have been banned in cows (though not in the US)
  • Need to ensure get calcium (700mg), and Vit D (10mg) – mostly from the sun, but take supplements Oct-to-Mar in the UK.
  • There’s no scientific evidence of particular health benefits from organic food.
  • Your liver/kidney provide excellent detoxing functions – so no need for juice detoxes, alkaline diets, sugar free, clean eating (causes disordered eating), antioxidants, vitamins/minerals in excess. Watch out for people like Belle Gibson who are targeting desperate/vulnerable users.
  • Weight gain is at a societal level, so individual change is hard to do. Availability of food, injuries, treatment, office jobs, transport have all changed…
  • Looks at weight management, not diets. Goal-setting, lifestyle, group support, look at lifestyle/NHS services, consider 5:2 diet (developed by BC patients), emotional eating (eat your feelings – see a psychologist for a referral)
  • Fast weight loss = increased risk of infection, fatigue and low mood.
  • Final message: Enjoy your food! So, I think Beyond Chocolate falls within the latest dieticians guidelines!

Exercise with Leanne Livsey

  • There’s a whole load of physical and psychological impacts of breast cancer (including reduced cardiovascular fitness, fatigue, bone loss, weight gain/loss, limited range of movement, insomnia/restlessness, depression, body image, anxiety, social isolation, self-esteem, etc.)
  • Evidence has shown that exercise doesn’t worsen fatigue in treatment, and post treatment, it helps. Particularly light cardio-aerobic exercise, endurance and stamina building sports – e.g. walking, cycling, swimming. Will see reduction in body fat and growth of lean muscle.
  • The 3 Ps: Plan (ensure that it’s enjoyable as well as can do it); Prioritise (Even if 5-10 mins day); Pace (start slow)
  • Return to daily exercise as soon as possible (everyone’s different, so can’t put set guidelines for cancer patients, like national guidelines: 30 mins x 5 week). Break it down into 10 min chunks if necessary. If it feels too hard/heavy slow it down as the benefits are just below this (even for fit general population). Should be breathless but able to hold a conversation. 2 x week try and incorporate muscle building exercises. Look at pilates/yoga, dancing, resistance training, gardening, housework – whatever you enjoy/need to do – it’s movement… do it in TV advert breaks if you want! Listen to your body! Look at Let’s Get Moving for ideas near you…
  • Watch out for pain, dizzyness, fatigue, nausea, breathing…
  • Those undertaking 3-4 hours brisk walking per week = seen a reduced recurrence (all ages, weights, stages)
  • Avoid swimming, gardening, etc. 24 hours post-chemo, and care with isometric exercises as risk of lymphedema – if do e.g. hold a plank, shake out arms to move fluid around.
  • At the end we were given the Macmillan Move More guide if wished: we’d done the ‘Chairacise’ from the DVD in session (fun, and doable – now need some Thermabands!)

Breast Cancer as a younger woman – a personal perspective

This was a really powerful session with Kelly Short (You can watch Kelly’s story on How to Look Good Naked), demonstrating that there is life after cancer (including a recurrence). Life doesn’t just go back to normal post-treatment – there are physical and emotional scars (and the emotional take longer to heal)… the regular treatments stop, the cards stop coming, friends & family sigh with relief that it’s all over, people try and rub your head as the hair comes back, and people ask when you’re going back to work ‘as normal’. This is when the reality often hits…

Kelly talked about being given the ‘gift of time’ throughout treatment, and every time she felt well enough, was determined to do something nice, although she felt her ‘chains to the hospital’. She wasn’t sure how to move forward, but can’t go back… felt body was mutilated, found journal writing cathartic, and taking part in the show with Gok Wan (with support from Breast Cancer Care) showed her that no-one else can magically improve things – have to ‘pedal yourself’ – and the programme really challenged how she thought about herself, not believing compliments (people tend not to say anything if they don’t like it).

Kelly has found a joy in swimming, tends to buy normal (but high end) swimwear, and add prosthesis pocket. Was a regular traveller, and someone who thought it was frivolous to own e.g. a random pair of shoes, but learnt that actually these things have a benefit in how you feel. She got out of bed every day throughout treatment, even if just to change pyjamas. Encourages people to try any/all kinds of post-surgery bras, and even some normal bras can be worn by going up a cup-size.

Doctor told her that most things heal themselves within 10 days, so helped with the feeling of ‘my back hurts, it must be cancer’, etc. If worried, go and see GP. When the recurrence came, assumed it meant a death sentence, but found that she had the emotional tools from last time, and that the physical experience this time was very different (so an appreciation that cancer is very different for everyone), made the most of it, and travelled still (used InsureWith, as instead of £1500 for week’s cover, was £75, and still uses as the staff understand rather than blame everything on cancer, etc.).

Gok told her that one day she’d be grateful for the scar – and finally yes – because it means she’s still alive. Chooses to focus on what cancer gave her (took things away, but about your focus). See this BCC campaign. Write letter to body, expressing any feelings that it’s let you down. Less planning, more living in the now. Cancer not a definition, but a part of life – we’re who we become because of our life experiences (see Lisa Cherry – Soul Journey).

Gratitude: Express it
Guilt: Let go of it (for other’s affected by own cancer)

As a final note, I had excellent conversations with many people, there were tears, laughter, experience-sharing, including the notion that there’s not necessarily an ‘epiphany’ from cancer – but it does tend to make things that were already ‘wrong’ no longer seem a good fit, and more appreciation for the good (including jobs).