Part 6: With a little help from my friends

Tips for supporting a friend in need (is a friend indeed)

Recently, I took part in a survey conducted by Trekstock - a great charity dedicated to supporting young people diagnosed with cancer in their 20s and 30s - via Instagram. You know the Instagram story polls? As you swipe through videos of people's lunch (no judgement - I love a bit of food porn) you can interact with the cyberworld by clicking yes or no in response to any manner of hard hitting questions: Has spring arrived? Should I wear pants today? Which goes first - jam or cream?

This particular survey however, asked people to reflect on whether or not they had lost friends following their cancer diagnosis. And worryingly, I think, in this instance, the majority of respondents chose 'yes'. This made me sad.

But, it also helped me see, yet again, how lucky I am. So far I have had the complete opposite response from my friends. In fact, when looking for positives from this whole cancer experience, realising how many great friends that I have, and how truly loved I am is definitely one of them.

I have moved about a lot in my life: I changed high schools for my final two years, which took me away from my suburban home to 'the big city'. From there I moved to a completely different city altogether to go to uni, and then, inevitably perhaps, to the other side of the world. Although I've kept in touch with friends from these different stages in my life, mostly thanks to the wonder that is social media, I don't have those deep, long-held, lifelong friendships that stem from childhood and I often feel really envious of people who do. Sadly, I haven't seen any of my friends in Australia in years; for many, it's been decades.

So, it has been incredibly life-affirming for me, that my cancer diagnosis has not only cemented my friendships and made them stronger, but also led to reconnections with old friends and colleagues (from here and back home), and even helped me make new ones. It's helped me see that I truly am loved, in a way I may not have realised if cancer hadn't happened.

And knowing my history, it was hard not to find this surprising initially. Perhaps it's because writing this blog has helped me talk openly and honestly about how I feel, and what I am experiencing and therefore helped them understand how best to help and support me.

It has also been surprising to have had such a positive response to this blog. I started it, initially, to give some purpose and order to all the thoughts zooming around in my brain; but since going live I have been inundated with positive messages (and not just from my friends) about how it has helped other people too, and opened up an experience they previously had no understanding of. I have even been asked to cover specific topics in future posts - the most popular request being for more advice and ideas on how others could better support someone facing a cancer diagnosis or living through surgery and/or chemo. So I thought I would oblige.

Before I do though, I must include a disclaimer of sorts. As I have discussed before - everyone's experience of cancer is different and everybody's treatment schedule will differ too - different cancer types, grades and stages will be treated with a different regime - this could include any combination of surgery, chemotherapy, immunotherapy and radiotherapy. Every chemo combination will be slightly different, with differing side effects. So, although I will try and be as generic as possible, my advice may be a bit personalised. But, I hope it will still help in some small way!

My number one tip for being a good friend to someone with cancer is: always include them in plans, but don't put any pressure on them to attend, and don't be annoyed if they can't.

As already stated, everyone's experience is individual and even those people taking the same combination of drugs, may have completely different responses to them. So although I can only share how it has effected me so far, I hope that by doing so, might at least help you understand just why we may cancel plans.

I am taking Capox which is a drug combination used to treat Stage 3 Bowel Cancer. Folfox is also used. They have slightly different efficacy rates and side effects (you can read more about the difference between these two regimes here). My cycle begins with the intravenously administered Oxaliplatin, which is also responsible for the worst of my side effects. I then take Capecitabine orally for 14 days alongside steroids for the first 3 days.

I started writing this post just before starting my second cycle. I am now on day 8 as I was too ill to write for a while there. But so far, for me, the need for simplicity has dominated my cancer experience all the way through.

My first cycle went something like this:

Days 1-2 cold sensitivity (this lasted a week or so, but symptoms were definitely worse for the first 3-4 days).

Days 3-5 complete nausea and no appetite including vomit

Days 6-7 appetite started to return but diarrhoea kicked in

Days 8 -9 strength began to return - managed to leave the house for short periods.

Days 10-14 began to feel normal-ish.

Cycle 2 has gone like this:

Days 1-3 - extreme nausea and all the vomiting

Day 4 - feel like complete rubbish.

Day 5 - diarrhoea kicked in at 5am in the morning.

Day 7 - still had diarrhoea (5am call like it was set to a watch), but managed to do some 'bits' around the house and a short dog walk but then crashed out.

Day 8 - Still have diarrhoea (1:30 am call this time), some cold sensitivity and moments of neuropathy; back in hospital twice - once for routine flush and twice for a non-routine x ray to find out why I was having chest pain; completely shattered by walking to and from the car.

*midnight – more regular diarrhoea kicks in – suspect I picked up a bug from hospital as I’m in my lowest immunity phase

Day 9 – diarrhoea continues – shattered.

And, then, last time, even in my 'off week', I appeared to have a limited amount of energy so I can only expect the same again this time - but worse (if the pattern continues); on a day when I woke up feeling well, I still got flattenned easily. It's as though I have a little egg timer sifting away on my shoulder, and when it's run out, it's run out.

So it's really important that I prioritise my activities - right down to having to choose between walking the dog or hoovering. I constantly feel just a little 'under the weather'. Even on day 20 of my last cycle, for example, I felt like I had the beginning stages of a cold: a slightly sore throat, a bit sniffly and achy. I also had a very slight thrush infection, an ulcer on my tongue and a cold sore. It might not always be like this, but this is what it's like now.

All week I had been worrying about how to balance wanting to see friends, wanting to do some exercise to be as strong and fit as I can to fight this, wanting a clean house, and needing to stay well so that my next chemo cycle was not delayed.

I also feel that I need to prioritise in this order.

First and foremost is making sure, as best I can, that there are no delays to my treatment. From a practical stand point any delays will extend this period of my life even further. It will increase the time that I will be unable to work full time, increasing my financial instability and increasing the knock-on anxiety about eventually returning to work and normality. From an emotional place, the idea of any more delays makes me scared that the cancer cells will get away from me, and they will take hold somewhere else in my body. It's probably irrational but I sometimes catch myself feeling invaded, as though I can feel the little buggers climbing through my veins into my organs. And then I catastrophise about stage 3 becoming stage 4.

My next important priority is being as fit and strong as I can be throughout this experience.

The need for self-care is really important to all of us, whether we have cancer or not. However, there has been a lot of research into the benefits of yoga, meditation and exercise to cancer recovery.

When I was first diagnosed I wanted to regain some sort of control, so I walked into Waterstones and bought myself a book about cancer. I chose 'Anti-Cancer Living' by Dr Llorenzo Cohen and Alison Jefferies.

Together with David Servan-Schreiber, author of Anticancer: A New Way of Life (you may have seen him in the Netflix documentary 'The C Word'), Cohen designed and launched a pioneering study at MD Anderson Cancer Centre in Houston, Texas, to develop 'research-based recommendations both for patients, and those people concerned with how they might prevent cancer'.

In general, I think I cannot get on board with everything the book explores (basically because my lifestyle already followed ‘the mix of six’ he writes about pretty closely when I was diagnosed), however it did highlight to me, alongside other research and the recommendations of Cancer Research UK and Macmillan, the positive role that staying active and stress free has on how we manage our recovery.

There is strong evidence to suggest that those cancer patients who take part in yoga and meditation have increased immunity, due to the reduction of stress hormones in the bloodstream. According to Cohen, 'there is a growing body of research chronic stress with cancer tumour growth and proliferation' (p134). And a cancer diagnosis is certainly stressful. So I am trying to build both yoga and meditation into my daily routine.

And it will come as no surprise that Cohen also waxes lyrical about the benefit of exercise...alongside just about everybody else writing about cancer...and any other illness that exists. And, like other illnesses, Cancer is not just a physical attack, it is also an emotional one.

I've written before about my running - for me it's played a huge part in coming off anti-anxiety medication that I started taking in my very early twenties. So being unable to run has been a big worry to me - especially at a time when my anxiety levels have every right to be through the roof! So I am very keen to get back to it as soon as I can, however, I have to listen to my body too. But as it's so important to me, I need to prioritise it over other things. And not just for the sake of my mental health...

Cohen talks about the research of Professor Kerry Courneya from the University of Alberta in Canada. 'For many years,' he explained, 'the accepted wisdom is that you should rest up during treatment for cancer, but the research is showing that resting makes the side effects of cancer treatments, including things like neuropathy (nerve pain), cancer related fatigue (CRF), generalised pain, brain fog, and so many others, worse' (p204-205).

Courneya found time and time again, that patients who exercised while undergoing chemo or radiotherapy were more likely to have received all their treatments on time, experienced increased self-esteem and physical functioning; less brain fog and more mental clarity; less fatigue and improved sleep; less nausea and improved appetite; less nerve pain and numbness in extremities; improved mood and less depression and anxiety; shorter hospital stays and fewer trips to the doctor; and most importantly, a higher general quality of life' (p205).

So all of the above, coupled with the danger of 'the chemo stone’ (also highly documented anecdotally amongst cancer patients) makes fitting exercise into my daily routine when I'm well enough, a no brainer. However, a day when I focus on exercise, generally means it's a day when I can't do much else, or that the following day I will feel pretty run down and rubbish. It's early days for me, and I have a lot of work to do to get the balance right - but I hope that if you see on my Instagram that I've been for a brisk walk one day, and then I bail on our plans the next, that you will now realise that it's not because I'm being a flake or don't want to see you – it’s because I've tried to seize a moment when I feel ‘well’ and maybe gotten it ‘a bit wrong’.

So in terms of social outings, my plan is to focus on one main event per cycle...that way I can preserve the energy I need to have the best time I can when I do that one thing. That might mean I avoid going out in the evenings leading up to that one event, or limiting any other outings to a couple of hours only. Last cycle, for example, I saved up my energy in my week off so we could go and see a band that we'd had tickets for before I was even diagnosed. This cycle, all my energy is going towards being on form for one of my dearest friend's wedding.

With all this in mind - my second top tip would be to offer help that enables your friend with cancer to preserve their energy for the things they need to prioritise.

Start by asking them what they need help with or offer specific tasks that you can do for them that are time bound so that they don't feel worried about being rude if they don't have the energy to sit and chat with you for very long. But also don't be offended if they don't take you up on your offers. For example - people who know me, are aware of my recent, obsessive need to clean my floors - it's not something I've always felt but it's here now and coupled with my paranoia of infection (not helped at all by Covid-19) I have to accept it's here to stay. I have had many offers from kind friends to clean them for me, however, when push comes to shove, the thought of my friends actually having to witness the dark and dirty corners of my kitchen and bathroom leave me desperately trying to convince them that it's not as important as (inside) it really is.

Also, don't be offended if they don't want visitors to drop in very often. The idea of having people pop round causes me some stress: I am embarrassed that the house might be a state, or I worry about needing to complete my own self-care tasks and running out of time to do so; keeping to my sleep routine is also important unless it's that 'one event' I mentioned (9pm seems to be my limit these days). Very importantly too, never visit or spend time with your friend with cancer if you have any sign of illness at all. Chemotherapy kills our white blood cells, making us more susceptible to infection - what might be ‘just a cold' to you, could end up in pneumonia, a hospital stay and a delay in treatment for us…or worse…

My third top tip is to spare a thought for your friend with cancer's other half. During the bad week at the start of a chemo cycle, when you're vomiting and nauseous, partners have to do everything - and in my case, I mean everything: he bathes me, dresses me, cleans up my puke, cooks bland food for me, does all the housework and washing, walks the dog...and more - so offering to do things that might ease the pressure on them could be really helpful. I know that my Steve eats really badly when he's caring for me, so I would gladly accept any food for him that he can just chuck in the oven! I can barely eat at that stage so don't bother about me, but it does worry me that he's not getting the nutrients he needs to be healthy either. I mean, if he gets ill, we're both screwed.

You could offer to take your friend to some appointments - a couple of dear friends have done this, and not only has it given Steve a break, it's a nice time-bound way to catch up on the drive and in the waiting room - if it's a good week, grabbing a coffee or lunch afterwards is a nice treat too.

Again don't be offended if they don't take you up on the offer - there are some appointments you really only want your partner or your mum to come to. During my first chemo cycle I experienced an incredible amount of ‘vein pain’ - Oxalitplatin is notorious for it. And I got a bit panicky. I needed to be able to boss Steve around, and shout orders at him in my anxious state without worrying that I would overstep the mark. I know friends will always tell you they don't mind - but it's not the same. No matter what they say to me, I would still feel a bit self-conscious or uncomfortable. I also need him to help me go to the toilet and things....and I will admit that before both cycles I’ve had a little meltdown…I need to feel ok to do this and he’s the one I feel safest with.

Friends have also picked up things from town - my lush face bar or supplies from the waste free store: I am always in need of the plastic-free toilet wipes only sold in health food shops - having bowel cancer and the other chemo side effects make these a must to avoid things like piles and other irritations/infections. Another 'chore' Steve could do without.

But if you're not close by, or are under your own pressures there are lots of other ways you can let your friend know you love and care for them.

Definitely write cards and letters and send messages - just don't be offended if they can't respond. During bad days I can't look at my phone, let alone respond to a message. And then when you feel well enough, it takes a while to get back to everyone, so be patient - but never stop sending them! Knowing people are thinking of you is important. Maybe, check with your friend how they feel about phone calls - I'm sure some people do like them. Personally I struggle with talking on the phone as it's not always an appropriate time, or I don't have the physical or emotional energy left at the end of the day. I prefer messages because I can respond in my own time.

If you want to, you can even send gifts - just avoid things like food and flowers: chemo effects both taste and appetite (and there's the dreaded chemo stone), and flowers are actually hard work to care for properly when you're ill - sadly they also harbour risk of infection when you're immunosuppressed.

Here are some examples of great gifts I've been sent (and some other ideas too):

An old friend and colleague gifted me some of her own Seagreen Soap and they are the perfect gift for anyone on chemo – they are all natural, environmentally friendly and cold-pressed; they are free from scents and colours. She sent them to me because her sister had really found them useful following her own treatment for breast cancer and thought I would too - many chemotherapy drugs cause your skin to become very dry and very sensitive so this kind of product is really essential. They are really lovely and my skin is definitely better this time round since I started using them (last time I broke out with strange red spots). Lindsay is also running the Hampton Court Half Marathon to raise money for both Cancer Research UK and Malaria No More. Please sponsor her here.

Any very gentle body creams are good gifts too - I'm going through them like the clappers – and truly gentle stuff, free of nasties might be out of the financial reach for people living with cancer. I recommend Lush Celestial face cream and Dream Cream body lotion as they’re really gentle and easy to spread - as discussed I've had some issues with vein pain which makes spreading thicker creams quite uncomfortable.

Little gifts like scented candles or things to help you relax are great - bath salts and bubble baths - but bear in mind that again they probably need to be quite gentle. For the same reasons above, chemotherapy often leads to thrush infections which can be exacerbated by chemicals and other nasties. I can't really do baths now I have a PICC line either....which I am very sad about.

Another great idea is a cancer support kit - I have been lucky enough to be gifted one already! There are lots of companies that do this, and you can even just build your own - but check out the link above as they have lots of good ideas and tips and dos and don'ts - things I probably wouldn't have even thought of! And all the gifts are really practically aimed at helping the giftee survive what can be a pretty awful time.

I have been so lucky that lots of friends sent really sensible gifts - gloves and hats and neck warmers. One of the chemo drugs I am on makes me particularly sensitive to cold - painfully so! This means I can never have too many gloves: I need lots of styles and types, layers, fingers and no fingers, grip and no grip. Also gloves need washing and rotating if being used every day so multiples are a must. Snuggly socks are good too!

One of my dearest friends delights in sending me anonymous (and very useful) amazon parcels – and waits in anticipation till I work out it was her.

I was also given a variety of snuggly throws - definitely needed and useful and lovely. Go with caution though - I am probably at my limit of throws now. But, considering I spend at least 8 days in every 21 lying supine on my sofa, watching Netflix and feeling incredibly sorry for myself I am grateful to have such a fine selection to snuggle in.

And this brings me to the ever awkward issue of money.

I wrote in some depth in my last post about my financial worries and the cost of cancer in general. But even before I wrote about it, lots of my friends have wanted to help me out financially. This is always awkward, because although yes, you could really do with the help, you know you're still not as badly off as others and you also don't want to abuse friendships and goodwill. We may not feel comfortable asking for financial help so thinking of a concrete thing you know your friend would enjoy but probably can't afford will be easier to accept – and then you can gift it, avoiding those awkward conversations altogether!

I have so far had a kind offer from Ingrid, and The Norfolk branch of the Retired Greyhound Trust to help out by dropping round dog food for my dear Roo (pictured below). A dear friend asked to make a contribution towards the new fridge she knew that we needed.

ROO :)

Another friend asked if they could set up a small monthly direct debit - on the proviso that I would return the favour when I returned to full time work and the tides were ever turned. I thought long and hard about how best to make use of this very kind donation and have decided to put it towards covering the cost of a cleaner to come in once a fortnight (for now) to do my bathroom and floors - thus solving both my dirty house anxieties and embarrassment at friends seeing what's in my corners. This will hopefully also take further pressure off my Steve - as I won't nag him to do it on top of everything else he does for me. These particular housework jobs have definitely made it on to my 'one straw too many' list so it is a great relief to have a solution and relieve some of the angst I was feeling; I now also have a very concrete way my friend can see the impact of this kind act.

When it comes to money though, never feel compelled to offer financial support if you can't. Nobody will expect it - but if you do want to help out that way, some other ideas you might want to explore could include offering to pay for a weekly yoga class, or contribute to the cost of haircuts or beauty treatments. These things would not come under a list of 'necessities' but when you’re feeling low, have maybe put on that chemo stone, or have lost weight and look ill - the benefit of feeling beautiful, even just for a little while cannot be under rated. Charities such as Star Throwers and The Big C Centre help with access to complimentary treatments and therapies - but any other pampering is great - I know it's important to me to feel calm and relaxed, and also maintain things like my eyebrows and colouring my hair to hide my greys! Then you can also offer to take them to these appointments and it's another chance to catch up.

Maybe you could offer to pay for a Netflix or Amazon subscription whilst they’re off work (or just let them log into yours!) - when you can't read without vomiting, box sets are the only way forward.

And on top of these amazing smaller gestures, my very dear friend Claire organised an entire ‘His and Hers Afternoon Tea’ in my honour. She enlisted the help of another friend, Carly, and the beautiful Henstead Pavillion, and together they achieved something amazing. They didn't just organise a nice afternoon - they smashed it. They completely sold out in the end, serving around 80 people. They organised a giant raffle and 100s of really classy prizes were donated. All in all they raised over £2000 and donated half to Cancer Research UK, and the other half was gifted to me. The fact that they did this was so incredibly humbling - and really made me realise how many people really care about me, and about the cause itself. Sadly, I was too unwell on the day itself so I couldn't go - my chemo started quite quickly and suddenly, and by the Sunday I was out for the count. But somehow, knowing that everyone was still gathered for me, thinking of me, made it seem just a little bit easier to bare.

His & Hers Afternoon Tea in aid of Cancer Research UK

I plan to use this money to enable me to continue to go to my weekly yoga class and continue my physio and surgery rehab that is currently not really covered by the NHS. It will also provide a safety net for emergencies, and things I may need such as shoes and clothes - especially useful if I gain that chemo stone! My first instinct was that I could not accept this money - but I realised that people actually wanted to help me personally, and taking part in this event was a way for them to do so within their means. And now that the reality of being on half pay has kicked in I am even more grateful; it has helped in a great way to ease many of my worries over finances.

So finally, my overall message for this post which was meant to be about how to help and support someone with cancer whilst simultaneously shout to the rooftops about how amazing my friends are by offering amazing examples of how they have done this so successfully goes like this:

Make sure they know that you're there. Offer practical specific help. Don't overstay your welcome. Don't put pressure on them. Don't be offended if they cancel plans or don't take you up on your offers of help - just knowing you made them helps - in time they may find themselves feeling more confident to reach out (I've only just now felt able to set up a 'Roo support' Whattsapp group to call on dog walking favours for those bad days in my cycle and relieve some pressure on Steve). Send letters or cards. Don't leave them out, but respect the need for space at the same time. Help financially if you can - don't worry if you can't. Think about sending useful gifts (or ask them what they need!). And most importantly, hang in there - life will gain some normality at some stage, and knowing that you love them and are there in any small way you can be, will make that normality return even quicker.

And let’s hope that next time Trekstock do a survey on friendship post diagnosis, the results are more in line with my own experiences.

Thankyou dear friends – each and every one, near, far, old and new. I couldn’t do this without you.