I am writing this blog in response to messages I have received firstly asking for advice and tips on anything that can help with the side effects of chemo and generally anything that helped get me through the continuous cycle of treatment. Secondly I’m writing this in response to messages I’ve had about people feeling alone and isolated particularly after treatment and not knowing where to turn. I’ll address the practical stuff first.
Cancer treatment can send your body into a tail spin of side effects, I often woke up thinking what new strange thing will happen to my body today, side effects all vary depending on the treatment so I can only go from my experience. Over the months whilst on chemo I built a tool kit that I carried everywhere or items I kept at home to help. Pictured above were my go to items, I’ll list each one below:
1. Nivea care & colour lip balm – Dry mouth/lips is very common so always handy to have these stashed in every bag.
2. VI Poo Spray 🙈 fellow Bowelies you will understand this 😂 I didn’t have a stoma when I had my surgery but because they removed all the bowel I do get frequent bowel movements and they can be quite acidic and not pleasant smelling because it doesn’t hang around for long in my body as I’m missing the bit that processes the waste. This can be quite embarrassing when out and about, but this little bottle of magic neutralises smells when you spray it in the toilet water before doing your business. It really works, lemon I think is the best one I recommend it to anyone even without your bowels missing.
3. Anti-Bac hand gel – An obvious one but very handy to keep everywhere especially when in public places where you might not have access to water and soap. Chemo weakens the immune system and can leave you prone to infection, you are generally encouraged to avoid crowded places but this isn’t always practical so this pot of gel was very useful.
4. Moist Toilet wipes – Not much explanation needed but very handy especially if soreness is an issue.
5. Bio oil – Helps to reduce the appearance of scars, I used this on my incision sites once they had fully healed and it is also a great all over body moisturiser.
6. Palmers coconut oil conditioning shampoo & repairing conditioner – Hair loss is a side effect most people associate with chemo and so did I so I was surprised to learn that on my treatment regime I might not lose my hair, but it might become patchy and thin. I was lucky that my hair remained and I didn’t notice much change in texture or patching. However during chemo I made some changes to my regime, I used to wash my hair several times a week but I began only washing it once maybe twice using the palmers shampoo and conditioner which contains no sulphates, parabens, no dyes, no minerals and the ingredients are sustainably sourced. I also tried to limit the use of hair dryers/stylers and hair products so that my hair was left as natural as possible avoiding most chemicals that dry and damage the hair. I still use them now and have stuck to these changes. The advice is not to colour your hair during treatment and for up to 6 months afterwards, but girls we know we like to have nice hair especially when feeling the effects of chemo. About half way through chemo I decided to have my hair highlighted avoiding contact with the roots, I needed a pick me up and I decided it was worth the risk. Luckily it all turned out fine and I had a full head colour shortly after treatment and it has been fine. It comes down to individual choice about how strictly you stick to the advice.
7. Aveeno daily moisterising lotion – Cancer treatments can really dry out the skin and it becomes more sensitive. I found this un-perfumed body lotion with natural ingredients really lovely and I’ve kept using it.
8. Udderly smooth moisturising lotion – As I’ve mentioned above chemo can really dry the skin, on the capox treatment my hands and feet were very dry and sore. I noticed on a forum that a lot of people recommended this cream so I gave it a whirl. It’s a great barrier cream and really helped smooth my feet & I still use it now, I found it to be cheapest on amazon.
9. Handmade naturals hand cream (lavender, orange, cocoa butter, almond and grape seed) – A really lovely natural hand cream small enough to pop in your bag and smells yummy.
10. Estée Lauder advanced night repair syrum – This is a splurge item, I was lucky that a lovely friend bought me this as a gift. You pop a couple of drops in the palm of your hand and then smooth over face and neck when you go to bed. It really helped to replace the moisture in my face that had been dried out by chemo, you only need a small amount so it lasts a long time, well worth it as a treat….you deserve it.
11. Thera Pearl hot & cold therapy – I forgot to put this in the picture, I bought this reusable hot/cold pack to use on my really sore arms following the Oxaliplatin treatment. It’s notoriously harsh on the veins and as treatment progressed my arm would be semi paralysed for a few days. This handy sized pack contains gel beads you can pop it in the microwave and then use to ease soreness. I took to hospital and used it on my arm during the iv’s and it came everywhere with me at home.
A bit of self care is so important even more so when navigating the cancer minefield. I tried to have something to look forward to on the breaks between treatment, cinema trip, dinner out, getting nails done, buying some new make up, tea and cake even wine. Anything that you’d enjoy and celebrate the little milestones, even just making time for a bath and some you time.
That’s the practical stuff now for the important emotional stuff, I’ve had some messages from people and the overwhelming theme was feelings of isolation, feeling alone and struggling to adapt to life post treatment.
Can I just say YOU ARE NOT ALONE! I got told quite early on that whilst you are on the hamster wheel of treatment, blood tests, hospital appointments, scans etc you have a focus living one cycle to the next and as soon as it all stops (if you are in the position to have an end date) a massive void appears and the gravity of what you have been through hits you. At the time I didn’t know how it would affect me but now I have an insight into the aftermath.
I finished treatment 3 months a go and I will admit it’s been a real struggle, I grieve for the pre cancer me, is it possible to be the same again once you have been through something so life altering? I stare at a body I don’t recognise and I argue with my internal monologue all the time. I feel guilty that I haven’t immediately embraced life (that I’m lucky to have) but I’ve come to the conclusion that I put too much expectation on myself and it’s perfectly okay to take time to process what’s happened and allow my body to recover slowly. I hadn’t realised how much of a security blanket hospital was until it all stopped, seeing the doctors was oddly comforting. I felt and still do feel a little lost, what do I do now? I can’t jump back into the old life so without really realising it I have been isolating myself and despite feeling lonely at times I didn’t want to see anyone. As the time goes on contact from family and friends decreases and you can’t help but feel no one understands.
To those of you that feel alone there is a lot of help and support out there, I have made a host of friends through the online community, speaking to people who have been through similar is really comforting. Most cancer charities will have an online presence so I suggest follow them on Twitter, instagram, Facebook etc and you will soon start to engage with people or at least begin to see a lot of your own fears are shared by others.
There are helpful forums on charity websites in their online communities that have blogs, groups, support lines, chat groups and discussion topics
Sites like Macmillan and Bowel Cancer UK also provide information on support in your area, I accessed counselling through a local charity ‘coping with cancer’ in my area and you can look up what’s available in your area. Many hospitals have started running post treatment support groups your local hospital should be able to tell you about what’s available.
Maggie’s centres support anyone affected by cancer, you can talk to and get support from a range of professionals. There are 21 Centres staffed by Cancer Support Specialists, Benefits Advisors, Nutritionists, therapists and Psychologists, all providing support in whichever way best suits you. You can check if there is a centre near you on the website.
I don’t have the magic answer but I am taking small steps to build my confidence and navigate the new way of living. Do whatever works for you but don’t feel you have to feel amazing straight away, getting to that embracing life stage can take time. We will get there and in the mean time you are not alone, I hope it helps and take care of yourself