All of the things I wish I’d known about when I was diagnosed with cancer, plus the occasional rant. This blog isn’t just aimed at cancer patients, there are tips for friends and family too!
You might think that all GPs and hospital doctors will be able to access your medical history at every appointment you have, but it seems like either they can’t easily get a summary of all the “important” events, or it’s badly designed, so half the time you have to explain your medical history to them instead. This takes time, can be frustrating, and if you’re anything like me, with a complicated medical history, at some point it gets too complicated to remember everything.
So here’s a tip if you have an iPhone. Open up the Health app, then click on your profile picture/icon, which is probably at the top-right of your screen. Then click on “Medical ID”.
List as much of the “important” details of your medical history as you can in the medical notes field. There’s a separate section for medication too.
This is just the start of my medical history explained on my iPhone!
How you actually list your history is up to you. It’s just a text box, so fully chronological might work best for a short list of events. If you have multiple conditions where treatment has overlapped, grouping all your cancer treatment in one paragraph and then grouping all of your (say) eye issues in another paragraph might work better, so the doctor can focus on whichever condition(s) are most relevant.
You can also choose to have this information accessible from your Lock Screen in an emergency, if you want to. Paramedics are trained to look for this kind of information I’m sure. (Can anyone confirm this?)
I’m not familiar with Android devices, but even if they don’t have anything similar you could type up your history and save it in a note somewhere you can easily access it, to achieve a similar result for when you’re at an appointment.
Now all I need to do is remember to how show my Medical ID each time instead of trying to remember my history! 🤣
Once you’ve completed your “primary” treatment of surgery and/or chemotherapy and/or radiotherapy… what’s next? Ring the bell like mad? Throw a party the day afterwards? Immediately go back to life like it was before your cancer diagnosis? Go straight back to work? Stress about a recurrence/metastasis?
In order of the above…
If you’re going to do it, ringing the bell is something you do immediately, before you walk out of hospital after your last chemotherapy/radiotherapy. Thanks to Covid-19 not everyone can ring the bell though… it’s potentially an infection risk or something. My chemotherapy unit give out fancy certificates if you ring the bell, but my radiotherapy unit (in a different hospital) didn’t mention ringing the bell at all. Good job I wasn’t particularly bothered about ringing it either way!
With my chemo unit the bell is on the wall in front of the majority of the other patients receiving treatment. So when one patient had a big deal made out of their ringing the bell it made me wonder if anyone currently on the unit was on palliative treatment and not curative treatment, and how they might feel about the huge commotion. The radiotherapy bell was in the corridor, away from the treatment area, so didn’t have that issue to the same degree. It’s just something you might like to consider.
With the celebratory party, life going back to normal and going back to work… it really depends on how you’ve been affected by your treatment.
For one thing, you might have anti-hormone tablets to take for five or even ten years, which have their own “special” side-effects. You might also need to take bisphosphonates for three years too. (I’ve written a blog post about these: hormone therapy & bisphosphonates…)
Oh, and let’s not forget that the side effects from surgery, chemotherapy and radiotherapy don’t magically vanish the day after they’re done. Radiotherapy in particular continues to “cook” your skin/tissue for several weeks afterwards. The fatigue from radiotherapy can last for months afterwards. You can also develop “cording” after some types of lymph node surgery which takes time to resolve, and can severely restrict your mobility until it does resolve. You might develop lymphoedema after surgery which is forever. Then there’s peripheral neuropathy and weakness from some types of chemotherapy. That’s just some of the physical effects… the psychological ones hang around too.
So realistically, you’re probably not going to go straight back to normal. Whether you’re up to a party will depend how bad your side effects are. Personally I’d leave anything major for at least a month after finishing treatment, to play it safe. It’s better to do it when you can enjoy it!
If you haven’t already checked out Look Good Feel Better, go and take a nosey. They have probably the widest range of cancer-related workshops available, many of which are useful after you’ve completed treatment, and you can participate after you’ve finished “primary” treatment. They’re not just a make-up workshop provider, they cover styling, nails, hair/headwear, yoga, Pilates and tai chi too — and they also cater for males and females, or however else you identify.
Specialist cancer charities related to your cancer might also run workshops suitable for when you’ve finished treatment as well. Breast Cancer Now for example have a “moving forward” book and workshop. Maggies have a 7-week general “Where now? Support beyond treatment” course that might also be useful. Macmillan is always a brilliant source of information as well.
Some of the workshops mentioned previously will help with going back to work, but you might also want to take a look at Working With Cancer, a company which offers help to employers, employees, the self-employed, jobseekers, carers and health professionals. They offer some support for free if you can’t afford to pay — you’d need to contact them to see if you’re eligible.
Worrying about the cancer returning is a difficult one. It’s going to affect some people more than others. Someone with a lowest grade, lowest stage cancer with an excellent prognosis may worry and stress about it returning far more than someone with a highest grade, higher stage cancer does. We’re all different. Personally, I like sticking my head in the sand and forgetting about it as much as I can, even though my cancer was the highest grade and a mid stage. I just don’t tend to get worried about things.
If you’ve previously used online support groups (or even in-person ones), you might find some help and support there. There’s a charity dedicated to helping cancer patients after their treatment has ended though: Mission Remission. As they focus on life after cancer treatment, it’s a different atmosphere to support groups which focus on diagnosis and going through treatment. There are also support groups and charities dedicated to people with a stage 4/terminal prognosis. I can’t personally recommend any as I haven’t had that diagnosis, but you can always ask about recommended stage 4 groups/websites/charities for your cancer type in the more general support groups.
Finally, as a bit of a random idea… if you’re having issues walking like you used to before treatment, here’s an unusual suggestion: get Pokémon Go on your phone and hatch eggs, to encourage you to walk more. It can be fun, honest! If you want more details feel free to ask me about how to play. If you enter the code D8W2692P9 when registering, you’ll get some free rewards to use in the game. 😁
If you’ve read this far, you deserve a celebratory drink too! 😁
If you have to take anti-hormone tablets because your cancer is/was hormone-driven, there are a few things you can do if you get side-effects that really bother you — typically sore/stiff joints and volcano flushes, but as ever, some people are more badly affected than others…
Alter the time you take the tablet. Some people get on better if they take their tablet at night, whilst for others the morning works better. Experiment. You could be on them for 5 or even 10 years, so find which time suits you best.
Try a different brand of the tablet you’re on. Whilst the active ingredient will be the same every time, the fillers and coatings can vary, and there could be a combination that you get on with better. If you discover a particular brand that really doesn’t suit you, you can ask your GP to alter your prescription to exclude that brand. (Check the PL codes on the packets too — if they’re the same then it’s exactly the same medication. I’m not sure if there are different brands with the same PL for any anti-hormone tablets, but it’s a phenomenon with other medication.)
I have heard of a couple of people who take half a tablet in the morning and half at night, but you’d definitely need to talk to your oncologist about doing this — your tablets might have a special type of coating on them or something which means you can’t do the same with yours.
If you can’t find a brand or a time that helps, don’t just stop the tablets. Talk to your oncology/hospital team and see if there is an alternative tablet you can try instead. If you’re on letrozole for example, then exemestane, anastrozole or tamoxifen might be alternatives you can try.
Finally, if you’re getting your boxes of tablets with the strips cut down and/or random “cuttings” from other strips, check how many tablets are actually in each box and get your prescription changed so that it matches. For example, I was originally getting 56 tamoxifen tablets each time, but as they come in boxes of 30, that meant someone opening one of the boxes every time to remove 4 tablets — a bit daft when hormone tablets are usually a long-term prescription! I got my tamoxifen prescription changed to 60 tablets to make the pharmacist’s job easier… and then had to stop taking it prior to surgery, and I’ve not been back on it since. I tried! Lol. With what I’m on now (letrozole), it comes in boxes of 28 tablets, so I don’t think I needed to request a change, it was 56 tablets all along.
My letrozole tablets. I don’t particularly get on with the Sun brand (left), but Accord (right) is a bit better!
With bisphosphonates these are available as tablets and via IV infusion. I was offered a choice of daily tablets for 3 years or IV infusions every 6 months for 3 years. I discovered later that there is a weekly tablet version too. The tablets have specific requirements around taking them, which is a faff, but the IVs are more likely to cause something called osteonecrosis of the jaw (ONJ). The weekly tablet is a nice compromise, and potentially avoids a few hospital trips, as to get the IVs you need blood tests before each one, just like with chemotherapy.
If you’re wondering why this post is in the chemotherapy section of my blog, it’s because anti-hormone pills are actually counted as chemotherapy. Chemotherapy is medicine that is used to kill cancer cells, and anti-hormone pills aim to do exactly that. They just don’t suppress your immune system or require special handling like the “proper” chemotherapy drugs do.
Before you have (major) elective surgery you’ll have what is known as a pre-op appointment and assessment. Part of it might be carried out over the phone or be a video call, but some of it will definitely be done in hospital. This consisted of a huge questionnaire for me, plus the more obvious blood tests, height, weight, MRSA swab, and blood pressure — you might need an ECG, MRI, CT scan and/or other tests too. Don’t forget to mention vitamin pills/sprays and any other “health” drinks or shakes you use when they ask about the medication you’re on, so they can interpret your blood tests accurately.
My hospital has a policy of giving special hair/body wash and a special nose gel to all patients regardless of whether they actually have MRSA or not. From memory I had to use both from two days before my surgery and was supposed to continue until two days after my surgery. You need to use clean bedding and towels daily too. I tested negative and as there was no way I could wash my hair I didn’t bother following the process after my surgery. You might need to consider how you’d handle things if you tested positive for MRSA and needed to continue changing your bedding and washing your hair daily after surgery though.
When I had my surgery my hospital also had a policy of the entire household needing to isolate for a full 14 days prior to my surgery, and for us all to isolate for a full 14 days afterwards too. The only exception was for me to be driven to the hospital for a Covid-19 (PCR) test two days before my surgery. Now that there are Covid-19 vaccines this requirement might not be as strict or even exist at all. It’s worth asking what your hospital expects you to do though so that you have as much time to plan around it as possible.
Ask if there’s any chance you could need a drain after your surgery. I wasn’t even really aware of this, as I’m not a medical professional and don’t have any prior experience of “proper” surgery. It might be that if you have a drain they keep you in hospital until it has been removed, so you don’t need to worry about it at all. It seems to be more common now though for patients to be discharged home with one, so it’s best to find out so that you can plan. I’ve written a separate blog post about drains, as I’ve got quite a bit to say on the subject: surgery and drains and going home…
That’s it for general pre-surgery tips, as most questions will be very specific to the surgery you have, and any other health issues you have, plus your work and living arrangements. Good luck for your surgery!
If you’re having surgery where you could be discharged home with a drain in place, ask if your hospital will provide you with a drain bag, or if you need to source one yourself. There are different kinds of drains, and some will fit into large pockets like those on hoodies, and on fleece and towelling dressing gowns, but others really need a bag to go in. The bags don’t need to be expensive if you choose or need to buy one, or you could even make one. I was given a bag by my hospital, which I wore for literally two and a half weeks straight, even at night!
My drain bag, provided by my hospital. It measures roughly 25cm square, with a 1 metre adjustable handle so it can be worn as a cross-body bag or used like a handbag. It’s made from something like t-shirt material, nothing exotic, so it’s nice and light. Mine is lined, but it doesn’t need to be.
If you are going to be discharged home with a drain in place, ask for written instructions if you’ll need to empty it or do anything with it yourself. Your nurses should explain how to deal with the drain before you’re discharged, but it will be much easier if you have written instructions for backup, as general anaesthetic can make you a bit fuzzy-headed afterwards and what you think you’ll easily remember you might not!
Some drains are totally sealed and you can’t empty them, but you might need to swap the bottle or pouch if it gets full, whilst others require daily emptying. You might need to record the amount of fluid that has drained (before emptying it) every day too. Some people will be able to go to their GP surgery, or back to hospital, or have a district nurse visit them at home to handle their drain… but some people have to deal with it all themselves, it really varies.
As you’ve probably guessed, I was left to deal with my drain by myself; it required measuring and emptying daily, and I wasn’t given any written instructions so I forgot most of what I was told/shown in hospital. Whilst you’re asking for instructions ask if the fluid is expected to change colour/consistency over time too. Mine started a deep red and was a straw-like colour by the end — which was totally normal and what they wanted to happen. You might also like to ask what you should do if you get a leak or if the drain appears to stop draining due to an air bubble in the tube. Yes, both of those happened to me… I had an eventful time with my drain!
If you do have to measure the output daily, I have some tips:
Take the reading at exactly the same time every day. I was advised to do it first thing in the morning and then contact my team afterwards to report how much had drained.
Hold the measuring device (collection bottle or pouch) up at eye level when reading the measurement, rather than looking down at it.
If it’s a collection pouch, hold the pouch by the very top so you’re not squashing the pouch — you’ll get a more accurate reading that way.
Consider taking a photo of the output each day — that makes it easier to monitor the changes in fluid colour, consistency etc.
If you experience sudden, very sharp pain at the drain insertion point whenever you move/bend, consider whether you could be unlucky enough to have your drain resting on a nerve. With hindsight I’m convinced that mine was, and I didn’t know that there are different painkillers that are effective for nerve pain. I did complain about the pain, and explained it was only when I moved, but I didn’t know to say the magic words “could it be nerve pain?” — hopefully I can prevent someone else from being in agony by mentioning it here! Needless to say that the day my drain was removed was my happiest day that year. 😁
The last thing I have to say about drains is that depending on where your drain is located you might want to consider the clothing you wear. Button-up shirts/blouses might be useful with a chest drain for example, so you can poke the tube out through the front and into a bag to hold the bottle/bellows/pouch.
NB: Whilst trying to find a photo of my drain on the web for this blog post, I discovered that my hospital do actually have fantastic written instructions (including photos) for dealing with the drain they provide for my surgery. I searched when I actually needed the instructions, but couldn’t find the instructions then. 😡
Your hospital will give you advice on items you might want to take with you/have ready at home if you need to have surgery, but there are a few things that I found useful, which might not be on your hospital-supplied list. Some of the items I list below you might find useful if you need to have chemotherapy too.
1. Long cable for your phone and/or tablet. Check out my blog post an extra-long phone charging cable for more specific details. Don’t forget the plug!
3. Cordial/squash/diluting juice or whatever you call it. (I’ve discovered this is a bit like the cobs vs rolls vs barm cakes etc debate!) The stuff you mix with water to make a (fruit flavoured) drink. Hospital water can be hit and miss, and cordial makes it more palatable. You can get really small concentrated bottles, which are about the size of a deck of cards and easier to manipulate one-handed, if necessary. Available from every supermarket I’ve been in, but here’s a link so you can see what I mean: https://amzn.to/3vWMWSx
4. Throat sweets/boiled sweets. The first time I had a general anaesthetic I was left with a really sore throat afterwards, and some sweets would have really helped. (I was fine after my second and third general anaesthetics though.) I really like these tinned sweets as the tin is more secure than a plastic bag, plus it keeps them fresh for longer: https://amzn.to/36aeVU3
5. Snacks. Some hospitals provide excellent food, but some don’t. If you can resist eating any of it prior to surgery, and aren’t on a restricted diet afterwards, it might be worthwhile taking something with you in case you get the munchies when you’re back on the ward/in your room. (In case you’re in a shared room or on a ward, don’t take anything with peanuts in.)
6. Something to read/listen to/watch/do stored on your phone and/or tablet. You might not be able to get a mobile signal or wifi signal in your ward or room, so it’s a good idea to have something as backup to keep you occupied, in case you’re in a private room with nobody to talk to, no TV and nothing else to do. Don’t forget your headphones! Or you could take a physical book to read instead I guess.
That’s all I can remember which wasn’t mentioned by my hospital. I think everything else I took in with me was mentioned in the literature they gave me at my pre-op appointment. Even if you’re booked in as a day case, take the basics in with you (hairbrush, toothbrush and toothpaste, toiletries) in case you do need to stay overnight — I was booked in as a day case but ended up staying overnight as I was one of the later surgeries that day.
Depending on what surgery you’re having, some of the following might be useful, and won’t necessarily be suggested by your hospital.
1. Moisturiser. You can use this straight away close to your scar, but don’t use it actually on your scar until your surgical team give the go ahead. Depending on the surgery you have you might find the area around your scar, or even an area not close to your scar but still affected by your surgery, gets very dry. For example, having lymph nodes removed from your armpit can make your arm close to your elbow dry until your body adjusts. I was surprised by this, as it wasn’t mentioned to me beforehand. If you don’t already have some moisturiser (or body butter etc), and you need radiotherapy later on, look for something that is metal and SLS free, as it will then likely be OK to use during radiotherapy too — and will thus probably save you buying another moisturiser when you have radiotherapy! Check out my blog post unscented, aluminium-free and SLS-free hair & body products… for product links and other specific recommendations.
2. Bio-Oil — only to be used when your surgical team give the OK. This is supposed to help with scars, making them more flexible and taking away the redness. Some people say that it’s not needed and using any old moisturiser will work just as well. I liked the smell though, and found it easy to use. It’s available in Boots and some supermarkets, but is usually quite a bit cheaper on Amazon: https://amzn.to/3MN3uBT
3. Silicone strips — talk to your surgical team before using any. They can help with the colour, height and texture of some scars; they’re used a lot for burn patients to help their skin heal faster. I wasn’t able to find these in any supermarkets, but you can get some from Boots, though Amazon was significantly cheaper when I last checked: https://amzn.to/3w33WFs
Silicone strips and Bio-Oil.
4. Slip-on shoes — or have someone handy to tie your shoe laces! This was something else that took me by surprise. I couldn’t bend to tie my shoelaces or fasten buckles for about a month. Sometimes it’s just the little things that are so annoying. A big part of it for me was that my drain was pretty much sat on a nerve, so every time I tried to bend it was agony. I also had restricted movement in my arms too.
5. Dry shampoo. This is for the same reason as #4. If you can’t bend without being in excruciating pain, washing your hair is going to be a nightmare if it’s long — especially if you’re having to keep your scar(s) dry and so need to wash your hair over the bath. Getting some dry shampoo at least makes you feel like you’re trying! I don’t have any specific product recommendations here, they all seem much the same to me!
6. Painkillers. I was discharged from hospital with a bottle of oramorph and I think it was enough paracetamol for two days. I actually took painkillers for about two weeks afterwards, so I had to hurriedly get my GP to prescribe some so I could get a big box, and not need someone to go and buy two of the small packets every other day. In hindsight I now know that my drain was sat on a nerve and I should have mentioned that before I was discharged and asked the hospital what painkillers I should take, as paracetamol didn’t really touch the pain, nor did oramorph. I have also since discovered that you can buy bigger boxes of (100) paracetamol tablets from pharmacies, but it’ll be on the pharmacist’s discretion, so you’ll need to ask for a big box at the counter, and probably be quizzed about why you need so many.
7. If you have a low bed, or even an average height bed, you might want to think about how you’re going to push yourself up to get out of bed when you’re back at home. It’ll depend on exactly what surgery you have, but you might be caught by surprise. I was in hospital overnight, and I was able to manage OK there as hospital beds are so high, but the first night at home was a massive struggle. I simply did not have the strength to push up like I normally would. It’s something that you just take for granted and don’t think about, until you can’t do it! Had I stayed two nights in hospital I would have been OK at home. It still would have been difficult, but it would have been more manageable and I’d not have been quietly panicking at 3am when I needed the bathroom and literally could not get out of bed, or back into bed, without massive difficulty. Something like this bed assist rail might be helpful, or even this bed ladder assist strap, which sounds strange but is exactly what I would have found helpful, if I’d known such a thing existed before my surgery.
8. Related to #7 is that you might find extra pillows or cushions handy, especially if you need or want to sleep in a more upright position. You can get special V-shaped pillows to help you stay more upright too, like this one: https://amzn.to/3KzFfWn
That’s about it… your hospital will tell you if you’ll have any specific restrictions after surgery on lifting heavy items (generally anything heavier than a kettle, but you might be restricted to nothing heavier than a cup of coffee) and/or restrictions on repetitive movements (cleaning, ironing, putting the washing out etc), so you’ll be able to plan around those restrictions more easily and work out if you need to buy or acquire anything special.
Before you start chemotherapy you’ll have a meeting with someone from your oncology team. It could be a consultant or one of the doctors on the consultant’s team. Either way, they’ll explain the benefit of the proposed chemotherapy to you — for some people chemotherapy gives just a marginal benefit, but for others it’s a significant benefit.
They’ll also go through the potential side effects and risks from chemotherapy, and go through your medical history. With this part, make sure they know everything, don’t skip things you feel aren’t relevant.
For example, having a history of (acute) glaucoma is relevant, even if you don’t have eye cancer, because when you have chemotherapy you tend to get a lot of steroids too — and some people react to steroids and get raised eye pressure. If you already have a history of glaucoma then even temporarily raised eye pressure is not a good thing. (Though if you were to have an acute glaucoma attack whilst having chemotherapy you’d know about it, as it’s excruciatingly painful, and they’d get an ophthalmologist down to the chemotherapy unit to see you sharpish. So you don’t really need to worry about that particular one. They might decide to put you on a lower range of steroids or something as a precaution though.)
For other things they might decide to give you different chemotherapy drugs based on your health — there are some chemotherapy drugs that are more likely to affect your hearing for example, so if you wear hearing aids they might choose one drug over another, to prevent any further hearing issues.
You might be given a choice of chemotherapy drugs — I wasn’t, so I can’t advise how you might go about choosing if you are! I also wasn’t really given a choice about whether to have chemotherapy at all or not. I mean, I could have said “no”, but the benefit was quite significant for me, so it was sort of assumed that I’d want it — which I did. I wanted to chuck everything at it that I could!
They’ll check your height, weight and bloods prior to you starting chemotherapy, as they alter the dose based on your weight/BMI, and they’ll re-check weight and bloods prior to every chemotherapy session too (plus blood pressure, pulse, oxygen saturation, temperature, and my hospital also checked for MRSA every 3 weeks). They won’t care if you gain weight, but they will if you lose any. Use it as an excuse for guilt-free eating!
Once the doctor/consultant and you are happy to go ahead with chemotherapy, you’ll sign a consent form and probably be given a bunch of leaflets/print-outs to read. You might also be given an opportunity to look around the chemotherapy unit before you start (I wasn’t).
A few questions you might like to consider asking are:
Where and when do you get your bloods done prior to each chemotherapy session? Some people get them done by their local GP a day or two before. Others get them done at their hospital a day or two before — this was my routine. And then others have them done first thing in the morning on the day they’re booked in for chemotherapy, and then wait in the chemotherapy unit until the results come back.
If you’re worried about hair loss, ask a) if that’s a side effect of your agreed chemotherapy, and b) if your hospital offers cold capping to try and prevent hair loss. I’ve written a separate (long) blog post about hair loss already: chemotherapy and hair loss…
Do you need to do any Covid-19 tests before each chemotherapy session? My chemotherapy took place whilst shielding guidance was still in place and before lateral flows became widely used. I was not asked to do PCRs at all during chemotherapy, nor even told to shield by oncology — but I did follow the shielding guidelines regardless, as vaccines hadn’t been approved back then. Every hospital is different, and obviously Covid-19 rules and advice and vaccines change over time, so you need to ask what your hospital is currently doing.
Should you get any (more) Covid-19 vaccinations? Even if you think you’re up-to-date with Covid-19 vaccinations, ask if you should get any more. They’re more effective when they’re given when you’re not immunocompromised, so the sooner you have them before starting chemotherapy the better.
Are there any other recommended vaccinations you should have? Or any childhood vaccinations you missed? Such as flu, chickenpox/shingles, tetanus, pneumonia, MMR or HPV. I wasn’t able to get a flu jab before I started chemotherapy because I started during the summer, but I was recommended to get one during the autumn. I wasn’t recommended to get anything else, although I already had chickenpox as a child, which ruled that one out automatically.
Can you have a list of dates for your chemotherapy sessions? These will be tentative dates if they agree, because it’s quite common to have sessions delayed by a few days or even a week or two because your bloods don’t meet the criteria once chemotherapy starts. Chemotherapy can be hard on your blood/immune system! Having a list, even if tentative, makes it a little easier to plan though — and there is some satisfaction to having a list where you can cross things out afterwards! It will also avoid you running into the situation I had where firstly I thought I was finishing after a total of 12 sessions when I actually needed 15 sessions, and then further having to outright fight to get my 15th session due to an admin/consultant mistake. If I’d had a very clear list of my sessions neither of those things would ever have happened.
Can you have a PICC line or a port, or do they cannulate your hand when giving chemotherapy? I wanted a port, to protect my veins, but my hospital only does PICC lines or ports (they’re different) when they can’t cannulate your hand any more. I had great veins before I started chemotherapy, but now it’s a real struggle to get bloods taken, even over a year after finishing chemotherapy.
Does your chemotherapy unit provide snacks or food, or do you need to take your own? This will vary depending on how long your chemotherapy takes to some extent — if it only takes an hour, you’re not going to need food. I found that my hospital offered sandwiches and sometimes yoghurt/trifle/jelly too around noon, if you were sat in the unit having your IV, but nothing if you started a little later at say 1pm. Other people in other hospitals that I know, who were on the same chemotherapy regime as me, were offered proper cooked meals every time, regardless of the time they started!
Should you avoid any type of food/drink or vitamins/supplements whilst on chemotherapy? I wasn’t given any restrictions at all, but others I know were told to avoid shellfish, raw meat and raw egg, and told to stop taking vitamins. I stopped taking my multivitamin anyway, because I figured if my vitamin levels were important they’d be monitoring them. It might be that certain things interact with your chemotherapy though, so it’s a good idea to check.
Should you buy a thermometer, laxatives and something to prevent diarrhoea, or will your hospital provide them? My hospital requested that I take my temperature daily whilst on chemotherapy, and whilst I was initially told they’d provide a thermometer I ended up having to buy one. (A cheap under the tongue one from a supermarket is fine, it doesn’t need to be expensive. You can also find them in some charity freebie bags too — check out the freebies section of my blog for links.) Some chemotherapy drugs and/or the anti-sickness drugs they give you can cause constipation and/or diarrhoea. My hospital didn’t provide medication for this, instead telling me to use “whatever you normally use” if I was affected that way. That’s not really helpful when barring one incident of food poisoning I’ve never needed either before, so I had no idea what works for me. I still don’t!
When will your immune system be at its lowest? Knowing this can be helpful so that you can plan when it’s “safest” to be out and about or doing certain activities around the house. If you want to meet up with friends for say coffee, then planning it for when your immune system is stronger is a good idea.
One thing that should be mentioned, but might not be — get a check-up with your dentist before you start chemotherapy. If you don’t have a dentist ask your hospital if they can help you get a check-up before you start. This is really important because once you’ve started chemotherapy you could be limited in the work you can have done, due to the infection risk. Chemotherapy can also wreck your teeth, so it’s best to start in as good a position as you can.
The last thing I can think of is to make sure that you have an outfit to wear to your chemotherapy sessions where you can easily go to the toilet one-handed if necessary. You could be given a lot of saline in addition to the chemotherapy drug(s), and be in hospital for hours… if you’ve got one hand cannulated you don’t want to be struggling with belts and lots of buttons if you can avoid it.
Chemotherapy doesn’t just affect your hair and make you nauseous/be sick, it can affect your mouth and teeth too. Ideally you’ll have been to your dentist for a check-up before you start chemotherapy — I can’t stress how important this is! You’ll probably be limited as to what can be done by your dentist once you’ve started chemotherapy due to the infection risk, so it’s really important to go beforehand and get any issues sorted first.
Some people have huge issues caused by chemotherapy, even when they had a check-up and started out OK, but not everyone does. The problem is that you don’t know if you’ll be one of the unlucky ones until after you’ve had your first infusion, and some side effects can take a long time to appear.
Getting a manual soft-bristled toothbrush, ideally a small/child-size one is a good idea though. When I was on EC chemotherapy there were two or three days each cycle where my gums bled a lot, and using a soft manual toothbrush really helped. A manual toothbrush is easier to be gentle with than an electric toothbrush, plus starting with a fresh toothbrush is a good idea too, with the whole reducing the chance of infection thing.
Your mouth can also go really dry and/or you can get ulcers in your mouth from chemotherapy too. If you get either of these side effects they might only last for a few days, rather than being something you have to handle for months.
With the dryness, drinking often can help, as can hard boiled sweets.
With the ulcers, your chemotherapy team might prescribe you Difflam mouthwash if your mouth gets really bad, so contact your 24-hour emergency/rapid response telephone number if you need to. Difflam isn’t something you can just nip into Tesco and buy off the shelf, and being in too much pain from ulcers to eat/drink is not a good position to be in.
I didn’t get any ulcers, though my mouth did go a bit dry, and my teeth were sensitive too. I made sure I got the highest fluoride toothpaste and mouthwash that I could find, as some days I just used the mouthwash and not the toothpaste. If you’re actually being sick from your chemotherapy, the highest fluoride will be helpful too. (The highest fluoride toothpaste you can buy without a prescription is 1500ppm fluoride, though I’ve not been able to find anything higher than 1450ppm; there’s no limit for mouthwash as far as I’m aware, but the highest I found has 450ppm fluoride.)
A soft toothbrush, sensitive and high fluoride toothpaste and mouthwash are common items to find in charity freebie bags, as they’re so cheap to buy. If you’re struggling financially, check out the freebies section of my blog for links which might be helpful.
Listerine Nightly Reset mouthwash, Sensodyne Repair & Protect toothpaste, and Colgate soft toothbrush. I don’t match brands! 🤣
When you have chemotherapy your sense of taste and smell can change, as well as the more well-known side effect of chemotherapy making you feel or actually be sick.
Some chemotherapy drugs are more likely to make you feel or be sick than others — three-weekly EC is very likely to cause nausea/sickness for example, whilst weekly Paclitaxel is much less likely to do so. You don’t know how exactly you’ll be affected until after your first chemotherapy session though, as the default anti-sickness drugs they give you work better for some people than for others.
Take all of the anti-sickness medication you’re given, even if you feel fine, because it’s easier to stop nausea and sickness in the first place than to stop it once you already feel or have been sick.
You might hit it lucky and get the perfect anti-sickness medication the first time around. If the medication you’re given doesn’t fully work, contact your 24-hour emergency/rapid response telephone number and they can prescribe something else if you’re actually being sick and/or get your medication changed for your next chemotherapy session if it’s just that you feel a bit nauseous.
Chemotherapy essentials: bland “snack” food!
I’d recommend getting in some plain/bland foods just in case you don’t get the perfect anti-sickness medication on the first attempt though.
Things like plain crisps, plain popcorn, crackers, salted nuts, rich tea biscuits, cornflakes or muesli… maybe ginger biscuits and/or ginger tea too (unless you hate ginger)… essentially just items you can nibble on if you feel a bit sick and can’t face a full meal.
I ate loads of rich tea biscuits whilst on chemotherapy. And lots of popcorn too. I tried muesli but couldn’t actually eat much of it, so I gave up on it and the sparrows ended up with a treat!
Some people are advised to not eat specific foods whilst they’re on chemotherapy. Things like avoiding take-away food, shellfish, raw eggs, soft cheese etc. I wasn’t told to avoid anything, and was actually told to eat whatever I liked, but when I looked up what others had been told to avoid, I discovered that aside from take-away food I don’t eat any of it anyway. It’s worth asking the question though, as there might be something which specifically interacts with what you’re on — grapefruit in particular is something which you might be told not to eat/drink on some medication. Pineapple (fresh or tinned), on the other hand, might come in useful if chemotherapy gives you a dry mouth.
As well as blunting my sense of taste, and making me a bit nauseous and generally not hungry, my sense of smell became much more sensitive whilst on chemotherapy, and some things I wouldn’t normally notice suddenly became really obnoxious to me. This has an affect on food and drink, so you might find that you just can’t face certain things you’d usually eat or drink, because the smell has changed. I never asked anyone why this happened, but my own theory is that it has to do with chemotherapy making nose hair fall out (as well as elsewhere), which then affects how things smell. If anyone does know the answer to this one, please let me know!
EC did make me crave cheese and salty things though. I’d have murdered for the old Bird’s Eye “Cheesies” from the 1980s. You think I’m joking here, but I’m really not. I wanted those things sooo badly.
Morrisons’ three cheese and chutney (pastry) rolls from the bakery counter were the next best cheesy thing I could find. They are amazing! They’re possibly these, though I’ve yet to buy any to try them. The ones I had were from the bakery counter in bags, rather than from a refrigerator and boxed up. (I’ll update this post after I’ve tried some of the boxed ones.)
Chemotherapy cravings: sugary drinks and sour sweets. Plus orange juice and high-fibre bread… not a craving, but a necessity!
EC also made me crave sugary drinks, in particular Coca Cola and bitter lemon. I don’t really know why… maybe it was for the sugar high, to try and counteract the steroid high.
Steroid high… it’s a thing. I wasn’t really warned about it. It’s also quite strange having the chemotherapy making you tired, whilst the steroids try to keep you awake.
When I was on EC the tiredness won out, but then when I switched to weekly Paclitaxel the steroids won, and I understood what everyone else meant when they were complaining about the steroids! I actually had my dosage of steroids dropped after a few Paclitaxel sessions because they drove me up the wall for a good 24 hours afterwards.
If you drink coffee or tea (I don’t!) maybe get some decaf coffee/tea in, or try fruit drinks instead, if you’re getting the steroid high effect. Plus, if you’re on steroid tablets at home, pay close attention to the timings they give you — they say to take them in the morning and around noon in order to try and avoid keeping you awake all night.
Depending on the medication you’re on, and how easy (or not) you find taking pills, some sweets might help you take them, and take away the taste of them. I struggle massively with taking tablets — I need to take them whilst eating something. I love the new sour flavour of Haribo Goldbears, which take away the taste of otherwise nasty pills, but they’re not easy to find, which is annoying.
My last bit of advice on food and drink is to add some (preferably fresh) orange juice and high-fibre bread into your shopping basket. They just might be the tipping point to prevent and/or relieve constipation. (Yet another chemotherapy delight you’re probably not going to be warned about.)
Why might I be talking about these things, you wonder?
Well, some chemotherapy drugs can affect your nails. They can go dry, develop ridges, lift from your nail beds, and potentially you can even lose your nails too. Yikes.
If you’re on the chemotherapy drugs which can do this (taxane-based ones like Paclitaxel and Docetaxel are examples), then it’s a good idea to keep your nails as short as possible.
A glass nail file is the gentlest way to file your nails, and it’ll last forever. (Unless you drop it!) Just run it under the tap once in a while to clean it. You also don’t need to worry about filing your nails in the “right” direction with a glass nail file — you can saw away in any direction you like, it won’t damage your nails. Bonus! Just don’t get too carried away at first as they file your natural nails very quickly!
Using nail oil as well will help to keep your nails healthy and help to stop them from getting too dry. Any nail oil will do for this, you don’t need to buy anything particularly expensive. I used a Sally Hansen one I already had, once the one I was sent in a freebie charity gift bag had run out.
If you don’t get a freebie charity gift bag including nail oil and a glass nail file — check out the freebies section of my blog — I’ve linked to what I’d buy, if I needed to. I’ve had my nail oil for a while, so they seem to have developed something better now.
If you’re happy to spend a bit more money, other cancer patients I know recommend Polybalm, which sounds amazing, but it isn’t cheap! Details can be found here.
My (Leighton Denny) glass nail file and (Sally Hansen) nail oil. Slightly grotty, as they’re well-used!
Some people swear that painting their nails in a dark colour prevents them lifting/losing them completely during chemotherapy. Something to do with preventing (UV) light reaching the nail bed I think.
I didn’t paint my nails though, because I wanted to be able to see any nail problems as soon as they happened — dark polish would have prevented this. I had issues with the nails on both my fingers and my toes, and as I always wear socks and boots when outside, and socks inside, I don’t think that painting them would have made any difference at all. Light didn’t get to my toes and I still had problems. It probably won’t do any harm if you decide to do it, but much like with all the other chemotherapy side effects it seems to affect different people in different ways.
I used to always recommend Boots’ No7 nail polish, or OPI nail polish generally, as they always stay put for ages for me — but looking on the Boots website now, it seems the No7 nail polish is really hit and miss. 😦 OPI have good reviews still, but at twice the price, I’d expect nothing less!
I’ve got tons of old No7 and OPI nail polish, and probably don’t ever need to buy any again in my lifetime. If you can find any No7 in the square/rectangular pots, that was the good stuff. That’s what I have — it’s well over ten years old and still great. (Store in a dark cupboard and use thinner drops if you need to.) It looks like it occasionally pops up on eBay.
If I had to buy some nail polish today, I think I’d go for OPI’s “Black Cherry Chutney”: https://amzn.to/3wnGLXZ — it’s nice and dark, and has glitter in it too by the look of the photos. 😀
If you do go down the dark polish route don’t forget a base coat, as dark colours can stain. If you’re not normally a dark nails person, you could use a glitter-based top coat to add a bit of lightness and sparkle, but glitter can be tough/time-consuming to remove. Well, the type of glitter I consider worthwhile wearing is! 😉 The top coat I normally use is Seche Vite — it has fabulous reviews and it works brilliantly when I use it.
A few of my “dark” nail polishes: Boots No7, OPI, ORLY, and Bourjois, plus No7 base coat and Seche Vite top coat. The ORLY one looks great but is really thin, so it needs about four coats. The toothpick/floss harp is in the photo because it was the only thing thin enough to clean under my nails — keep reading to see exactly why it was needed…
I didn’t get any ridges in my nails from chemotherapy (some people get a deep ridge for every chemotherapy session, a bit like the rings in a tree trunk), but I did get lifting. I only lost a couple of toe nails because I stubbed my toes right after my last chemotherapy session, when my nails were at their weakest — I’m sure they’d have stayed on if I hadn’t been so clumsy.
When your nails lift it can be quite painful, though as the chemotherapy drugs which cause the lifting can also cause something called peripheral neuropathy, sometimes it can be difficult to know which is which. That’s another reason I’d not paint my nails — if you can see that they’re lifting it’s easier to remember to be more careful, rather than just assuming it’s peripheral neuropathy.
My nails two weeks after finishing chemotherapy. There are four bands on each nail: 1) The solid white at the free edge is where the nail has completely separated from the nail bed. My nails are so short here that some of what appears to be “normal” white should actually be pink and attached to the nail bed. 2) The fuzzy white & mucky brown area is also where the nail has separated from the nail bed, and where dirt & grime has got under the nail. It’s really difficult to clean that far up under your nails, and I don’t recommend you even try until you’re sure your nails have finished lifting, but when you do try, get a toothpick/floss harp — they’re brilliant for carefully getting the gunk out and are the only item I could find that worked. 3) The deep pink area is “at risk” of separating from the nail bed. 4) The light pink area next to the cuticles is actually healthy nail. 🙂
My nails exactly a year after the first photo. These are actually a bit short for me, I usually have very long nails, but they’re back to being healthy again.
As someone who used to have overlays on my natural nails, and the occasional nail extension if one broke, I wouldn’t recommend any of the false nail/overlay systems during chemotherapy.
I’ve had fibreglass/silk, acrylic and multiple types of gel in the past. All of them can be hard on the nails, even when your nails are healthy, regardless of the marketing materials and nail techs saying otherwise. It also only takes one over-enthusiastic nail tech to file right through your own nail to your nail bed when doing infills/soaking off and you’ve got a route to a nasty infection. It’s not worth it. Gel polish that’s set under a lamp (like Shellac) might be OK, but even that still requires a bit of effort to remove, and if your nails are lifting… it’s not going to help!
The other thing to consider is that going to a nail salon is a “close contact” activity. If you’re on a chemotherapy regime which is hard on your immune system, do you really want to risk picking up a cold, flu, Covid-19 or whatever from your nail tech or another customer? What would normally probably be no big deal for you can suddenly become a massive deal once you’re immunocompromised. You won’t necessarily realise how immunocompromised you are either — my blood results at one point were low enough that the nurses stressed I had to be really, really careful… but yet I felt fine. (I followed the shielding guidance incidentally, although I wasn’t actually told to do so.)
I just thought I’d explain why going to a salon whilst on chemotherapy might not be a good idea, regardless of how reassuring the salon might be if you explain your situation — ultimately it’s your health on the line, not the nail tech’s health! You really do have to be careful, even if you feel OK.
Something that’s popular in the USA, but isn’t in the UK, is wearing frozen gloves and/or frozen socks to try and protect your nails and hands/feet during chemotherapy. They work rather like cold capping in principle. The NHS doesn’t supply them, but it’s possible to buy some: https://amzn.to/3vU6ir3 (socks) and https://amzn.to/3vWv8H6 (gloves). If you do choose to buy them you’ll need to take them to your chemotherapy sessions and wear them whilst actually having your infusions. You might need a second pair so that you can swap over once the first pair have defrosted, depending how long your infusions take.
If you end up with dry/flaky/peeling/soft nails after you’ve finished chemotherapy, you might want to try a product by OPI called “Nail Envy” to try and strengthen them: https://amzn.to/3Kw3Zyq — it has amazing reviews, especially from other members of one of the cancer support groups I’m in.
Finally, if you’d like even more advice on how to look after your nails whilst on chemotherapy, check out the Look Good Feel Better charity. They have free workshops that will teach you how to look after your nails, which I thoroughly recommend. 🙂
If you’re going to be on a chemotherapy regime which can cause hair loss, there are a few things to consider.
Firstly, do you want to, and are you eligible to try and save your hair? Not everyone will be able to try to save their hair via a process known as cold capping. Blood cancers are excluded, some other health conditions can prevent you from cold capping, and not all hospitals offer cold capping.
You can find out more information about the cold capping process in general via Macmillan and also https://coldcap.com, but note that the second website is American, so ignore all talk of payment! If you are eligible for it, and your NHS hospital offers it, it will be free. (And yes, the NHS does offer the Paxman system in some hospitals.)
If you’re not able to, or don’t want to cold cap, and if you have hair at least 7” long, then you might want to consider donating your hair to the Little Princess Trust charity. They take donated hair and make (free) real hair wigs for children, teenagers and adults up to the age of 24. It’s a really worthwhile cause if you’re able to donate your hair.
If you’ve decided to try cold capping, ask which system your hospital uses at your “chemotherapy consent” meeting (where the oncologist goes through the pros and cons of chemotherapy, side effects etc and asks you to sign the consent form), as there is more than one system which could be used. Then you can research before you start chemotherapy to make sure that you know how long the cap needs to be on for. At the same time ask if you will need to bring your own conditioner to hospital to use whilst cold capping. (It helps with the capping process.) My hospital provided the conditioner, but not all do.
If you’re using the Paxman system it generally needs to be on for 30 minutes prior to your (first) chemotherapy infusion, the duration of the chemotherapy infusion(s), and then 90 minutes after the (last) chemotherapy infusion has finished too — there are a couple of exceptions to this, but 90 minutes is the norm.
If you have a saline flush before your (first) chemotherapy goes in that can be done inside the 30 minutes “cool-down” period, and if you have a saline flush after the (last) chemotherapy has gone in you can start counting the 90 minutes as soon as the saline flush has started; it’s the actual chemotherapy part that counts for timings. It won’t hurt your hair if you cap for longer than the recommended times, but not capping for long enough can make the whole process pointless.
I’m mentioning the timings because some of the nurses at my hospital were not aware of the correct timings for the Paxman system. As they flat refused to let me cold cap for the full 90 minutes after all of my EC infusions, I am convinced this is why cold capping ultimately didn’t save my hair. I’m still upset about it.
I was given a voucher from the chemotherapy unit for £125 to put towards a wig, but I couldn’t use the voucher because it could only be accepted by wig salons in person, and as we were in Covid-19 lockdown/restrictions at the time, nowhere was open to present the voucher. I’m still kind of annoyed about that, too.
Also, I had to ask about the wig voucher, it wasn’t offered automatically, so you might need to ask too. Your hospital might provide a different amount or control where you can use the voucher — or even just provide a selection of wigs to choose from instead of giving you a voucher. This is an aspect of cancer care that definitely varies around the country.
Finally, if you’re unsure about cold capping, you can always try it at your first chemotherapy session, and if it’s too much you can stop at literally any point. Agreeing to it doesn’t commit you to doing it for every single session. But you have to start it at your first session if you want to try — it won’t prevent hair loss if you start it later on. If you stop part-way through then you’ll likely lose whatever hair you have left afterwards too.
Official Paxman cold cap timing guidelines, summer 2021.
If you do cold cap, take some paracetamol about half an hour before you start capping, as it’ll help lessen the pain. I took my paracetamol with me to hospital and then actually took it as soon as the nurse had taken my temperature and other observations before admitting me onto the chemotherapy unit. By the time they’d cannulated my hand, and got the cold cap fitted, the paracetamol would have kicked in. The most painful part of capping is the first 15 minutes or so; once you’ve made it past that your head just tends to go numb instead. (Paracetamol can mask a high temperature, that’s why I always waited until after the nurse had taken my temperature to take it.)
Another tip is for you to make a note of the cap size(s) the nurses use for you when capping. With Paxman there’s an inner cap and an outer cap, and they can mix sizes to try and get a better fit. If you make a note of what was used then you’ll have a backup. I found that either a note wasn’t made my first time, or it wasn’t clear, so we had to try and figure it out again on my second chemotherapy cycle.
As the cold cap needs to be really, really tight, some people use exercise bands which they place over the top of their cold cap, and then they sit on the other end, in order to really squash their cap to their scalp. I didn’t do this, nor did I see anyone do it, but it’s worth a try if you already have some exercise bands and are desperate to save your hair.
If you need to take your own conditioner when cold capping, don’t take your usual conditioner. Buy something else instead. You don’t want to associate your usual conditioner with cold capping — trust me on this! I’d go for something unscented, like this Faith In Nature conditioner: https://amzn.to/3JcLzmO
You need to be ultra gentle with your hair once you’ve started cold capping. No hot hairdryers, curling tongs or straighteners. Definitely no bleach, colour, perms or relaxers. (Spray-on or powder root touch-up which washes out if you absolutely must would be OK, but personally I’d just find a hat instead.) You need to baby your hair. Though you don’t need to use baby shampoo — I read somewhere on an NHS website and also on the Paxman website, that baby shampoo is actually far too alkaline for hair and you’re better off using something less harsh on your hair. (Baby shampoo is often designed to be mild on eyes and not necessarily on hair.) If I had to go through it again, I’d use Faith In Nature fragrance free shampoo: https://amzn.to/3JcGo64
So… don’t wash your hair more than twice a week, or less than once every 10 days, wash it very gently, and let it dry naturally, or else use a cold/cool setting on your hairdryer. Use a wide tooth comb or a Tangle Teezer instead of a regular comb or hairbrush, and use your fingers instead if you can. You do need to try and avoid tangles as pulling your hair to try and get tangles out won’t be helpful. It’s all about avoiding stress and tension on your hair.
One concept that you need to be familiar with when cold capping is “shedding”. This typically starts around 14-21 days after your first chemotherapy session. It doesn’t necessarily mean that cold capping isn’t working for you. You can lose a surprising amount of hair from this point but yet still have “enough” hair when you’ve finished chemotherapy. Your scalp can be a bit painful when shedding starts, but it does ease off. Don’t think “it hurts and it’s shedding so it’s not working” and run for the razor or scissors — give it a bit longer to determine if the cold cap is actually working for you. (Incidentally if you didn’t cold cap, 14 days is when you’d expect to see all of your hair start to fall out, quite rapidly.)
Silk or satin pillowcases can help reduce hair tangles when you’re asleep, as well as just generally feeling nicer if you do lose your hair. I bought one which was silk on one side and cotton on the other, which was a bit cheaper than a full silk pillowcase: https://amzn.to/36BxPns
Another item I found useful was a sleep hat. Even if you don’t lose all of your hair, just losing some of it can leave you with a really, really cold head at night. I now understand why babies and really old people wear hats! You can also use it for after your chemotherapy sessions when leaving the hospital too — cold capping will leave you with wet hair afterwards. This is the one I bought: https://amzn.to/3INUMkv
Something else which you might not think to have handy, is a thick winter scarf. If you’re used to long hair and lose all or a lot of it, or cut it short(er), a scarf will come in very useful. You don’t realise how much “insulation” your hair gives you on your neck and back until you no longer have it!
My Tangle Teezers, wide toothed combs, and head massager.
After your last chemotherapy session…
Once you’ve finished chemotherapy, regardless of whether you cold capped or not, you still need to be gentle with your hair for a few months. If you lost some/all of your hair the new growth can be fragile to start with. If you successfully kept your hair it can still be fragile/brittle so again be careful, especially if you want to colour/bleach/perm/relax it.
There are entire websites and charities devoted to hair care during and after chemotherapy — take a look at the freebies section of my blog for some of them, and yes, there are various freebies you can get, such as free tutorials/workshops and scarves and hats — so I’ll not go into masses of detail here. It already feels like I’ve written an essay!
I will just quickly detail my hair regrowth experience though…
About a month after chemotherapy finished I had “peach fuzz” on my head. It was very fine, short (obviously), light in colour, and there wasn’t much of it. I couldn’t really tell it was really patchy at this point. I was just hoping at the time that it would stay light in colour, because that would save me a small fortune in bleach!
Then it changed so that it was like puppy fur. It was still light in colour but getting darker. It was also dead straight and laid flat against my head. This was when I realised it was very patchy. The front and top of my head was slower than the back and sides to get growing too. It did not grow back in a nicely uniform way. This phase lasted for a good couple of months.
Around 4-5 months after finishing chemotherapy my hair started going wild. It was still straight but it was now sticking straight up. It had also returned to my previous natural colour by this time. (Ugh.) The patchy areas had filled in, but were obviously different lengths to the faster growing areas.
Then after that the “chemo curls” started. Mine started out kind of wavy and then the back decided to go kind of curly. I hated it. The overall length made it hard to see that there were once patchy areas, though I imagine a good hairdresser would have noticed.
By the time I hit 8 months after finishing chemotherapy it was the long wait for the length to grow in and the chemo curls to grow out/fall out or be cut out.
At the time of writing this, I am 14 months on from my last chemotherapy session and the curls have not dropped out. They’re going to have to be cut out. I’m waiting until my hair is long enough to cut them out without having to go back to super-short hair…
Finally, some of the things I found useful when my hair started growing back are listed below.
Denman hair massager. A normal full-size hairbrush was too much for the small amount of hair I had initially, but these are much smaller, and are very gentle on the scalp: https://amzn.to/3wOqiMH
As my hair started to grow longer and fill in the bald spots, I switched to a travel-size Tangle Teezer, which is a bit sturdier: https://amzn.to/3LiVeZu
I’ve used a normal Tangle Teezer for years, it really helps to reduce breakage. After about a year my hair was long enough to use it again: https://amzn.to/3DmPafY
And finally, a wide toothed comb. This is probably more useful when cold capping, but it depends how you style your hair I guess: https://amzn.to/3uwKrnT
Watermans’ “grow me” shampoo and conditioner is really highly rated amongst members of one of the cancer support groups I’m in. It is available in Boots, but I find it’s usually cheaper online, via Amazon. It has quite a strong, distinctive scent, kind of reminiscent of Sunday lunch: https://amzn.to/3uxb2RL
Watermans’ “grow more” leave-in elixir can be used alongside their shampoo and conditioner, or you can use it alongside your favourite shampoo and conditioner if you prefer. You don’t need to use them all. It has the same scent as the shampoo and conditioner: https://amzn.to/3JPXOps
When I returned to my chemotherapy unit about 9 months after my final chemotherapy session, the nurses seemed surprised and impressed with how well my hair was growing back at that point. All I can attribute that to is the Watermans elixir above — I was using it daily, with the Denman massager. I’m due back there again in a couple of weeks, so I’ll see what they think after 15 months!
I’m grouping these three things together, because it makes sense to find one deodorant, one soap, one shampoo, one moisturiser etc that you can use throughout all of your treatment, instead of switching back and forth.
The unscented part is mostly for chemotherapy. When you have chemotherapy your sense of smell can change, and you can end up being overly-sensitive to smells you previously liked or hardly even noticed. Plus there is the more-obvious potential nausea aspect from strong scents. And finally, you don’t want to end up associating the scent of your favourite products with chemotherapy after you’ve finished with chemotherapy! If you have radiotherapy you might be advised to avoid highly perfumed products during treatment too, as those products are more likely to cause skin irritation. So it just makes sense to go for unscented products throughout.
Aluminium-free is for radiotherapy. Your own hospital will advise you on their exact policies regarding which body products you can use, as every hospital is different. One thing they all seem to agree on is “no metal” aka no aluminium on the area receiving radiotherapy. (That obviously rules out any body products containing glitter, if you’re a glitter fan like me!) My hospital also said I should use products without any SLS in them. Both aluminium and SLS can cause skin irritation, even if you’ve used the product in question for years, and you want to minimise any chance of skin irritation when having radiotherapy. Incidentally, my hospital didn’t recommend any specific products, saying they preferred patients to use their existing products where possible, so long as they were aluminium and SLS free.
I’m not sure if everyone who receives radiotherapy is advised to moisturise the treated area or not, as I only have experience of radiotherapy to one area, but for some areas it is 100% recommended, so it can be a good idea to buy products beforehand so you can make sure you don’t react to them. That way you’ll know if any skin reactions are product based or radiotherapy based, as they may be treated differently.
Some people might also be advised to moisturise from top to toe during chemotherapy. I wasn’t, but know other people who were advised to do so.
I wasn’t really told about moisturising after surgery, except on the scar itself, but as I had lymph nodes removed I discovered that the area drained by those lymph nodes got very dry for a week or two, until my body adjusted to that surgery. I definitely needed something to help with the dryness, so if you’re having lymph nodes removed too I’d consider having some moisturiser on hand.
I didn’t learn about what SLS is and why it’s good to avoid it until the day I started radiotherapy, so I didn’t use the Faith In Nature products below — but I would if I ever needed further treatment. (I just used the cheapest brands from Boots to avoid associating treatment with my usual products.) All of the products below are recommended by other cancer patients I know, who did a bit more research than I did!
Prior to starting radiotherapy I had heard about finding a deodorant without aluminium in it. (Some hospitals will tell you to not use one at all during treatment.) I actually used Bionsen and Sanex through my treatment, but neither worked very well for me. Bionsen in particular has quite a strong, distinctive scent. Since treatment I’ve switched to Salt Of The Earth products, and I do recommend them.
The Salt Of The Earth products I currently use. The “lavender and vanilla” one is rather a strong scent, but the “peony blossom” is quite subtle — reflecting the actual flowers I suppose. I’ve linked to the fragrance free version above though.
I received some Aveeno moisturiser via a charity gift bag from my hospital when I finished radiotherapy — it was really nice, though would have been more useful on the first day! The one I’ve linked to below is an unscented one, just to play it safe.
Epimax fragrance free cream is another option you might want to consider using, though it is a thicker cream and can be a bit greasy. I was prescribed this after my surgery, so you could try asking your GP for it, but it’s not expensive to buy — it’s cheaper than the current English prescription charge. You can use it as a moisturiser and also as a body wash/shower gel: https://amzn.to/3tSL1Mr
And finally, if you want to spend a bit more money, and think you’ll be OK with scented products, MooGoo products are also very highly recommended by others in one of the cancer support groups I’m in: https://amzn.to/3IpurJ8
Just in case there isn’t a plug socket available for you to use when you’re in hospital for surgery or chemotherapy, take a fully charged battery pack with you. I found I had a plug socket available after surgery, but didn’t when attending for chemotherapy.
It’s something that you might find useful in unexpected circumstances too. I attended hospital for one of my later chemotherapy sessions, expecting to be there for about three hours tops. My temperature was fine before I left the house (I was checking daily), and I felt totally fine. When the nurse did my observations before taking me onto the chemo unit she discovered that my pulse was too fast. I still felt fine, but ended up being sent to A&E for an ECG. I was in A&E for about five hours, with no access to a plug! My phone was down to about 5% battery by the time I got home — the one day I didn’t take my battery pack with me. (I was fine by the way; they blamed it on stress/anxiety.)
I prefer Anker for battery packs (as well as cables). You can choose from a bewildering range of sizes, capacities and features. The higher the battery capacity (more charges), the heavier the battery pack will be, so it’s about finding one that gives enough juice for a full charge or two but which won’t weigh you down.
The model I have is about the same size as my iPhone 8, just slightly thicker, and came with a little mesh type bag to store the battery pack and cable in. My specific model isn’t actually available any more, but this is a link to the newer version: https://amzn.to/3t0QSjv
My Anker PowerCore II Slim 10000 Ultra power bank. I’ve had it since 2018 and it’s still going strong. The newer version I’ve linked to above has double the capacity yet it weighs virtually the same as mine.
This is something I found most useful when in hospital for surgery. If you’re anything like me you’ll run out of juice surfing the web, even if you started on 100% battery when you entered the hospital. I prefer Anker cables — they last ages, and some even have lifetime warranties.
I took a 6 foot one in to hospital with me, and it was the perfect length to have plugged in to charge my phone and use my phone at the same time. I think I’ll always remember how one of my nurses plugged my phone in to charge immediately when I returned to my room after surgery when she gave me my phone back — I hadn’t asked, she just did it.
Although I took the cable with me for my chemotherapy sessions there weren’t any plugs available to use that I could see. That’s OK though, I was prepared… details in my next post. 🙂
The following link will give you a good starting point for Anker cables, and I recommend the woven/braided ones: https://amzn.to/3KDYoH3
My 6ft Anker PowerLine+ Lightning cable. I’ve had it since 2016! Lasted for over 5 years, and cheaper and longer than the official Apple cables too. You can get these as 10ft long now if you want an even longer one, and the most recent one is an Anker Powerline+ II. They’re not just for iPhones, they make cables suitable for all smartphones.
I bought some insulated bottles and an insulated cup when I was on chemotherapy, but you might also find them useful for during/after surgery too.
Being able to have a hot or cold drink whenever you feel like it, with minimum fuss, is great when you’re sat on a busy chemotherapy ward or are back on your ward after surgery.
My wards offered hot drinks (tea or coffee), but from what I recall it was rather random, and particularly if you’re cold capping during chemotherapy just the one hot drink probably isn’t enough! I don’t actually drink tea or coffee, so had it been winter I’d have taken in some hot chocolate.
As it was, I had my surgery and started chemotherapy in the height of summer, during a bit of a heatwave. So even though I was cold capping during chemotherapy, it was cold drinks I wanted. The first chemotherapy I was on (EC) gave me hot flushes every half an hour — cold drinks were a necessity, and while the hospital provided water it wasn’t that cold.
The cup with the straw was especially useful during chemotherapy as my right (dominant) hand was cannulated, so I was too nervous of dislodging that to use the bottles when the toxic stuff was being pumped through. The cup keeps things hot or cold for a good few hours though, and there’s no “sweat” on the outside either, so it’s not slippy. The bottles keep drinks cold for longer than the cup, because they’re fully sealed — I’ve left ice in for hours on end and it hasn’t melted.
Depending on exactly which drugs you’re getting, and whether or not you cold cap, you can be on the chemotherapy ward for 5 hours or so, so might want to take both hot and cold drinks in with you, to drink at different points.
The photo below shows the actual products I bought — though obviously other manufacturers are available!
Something which has always driven me up the wall, are those people who want to raise funds for charity, but the sponsorship money they collect actually goes towards paying for them to do the event. It’s usually a “challenge of a lifetime!” type of thing, and only the surplus money (if there is any) benefits the named charity.
There are very few people whom I would help to fund their day out or fund their holiday. So few that I can count them on my fingers.
So why then, do so many people who would never even dream of asking me to fund their day out or holiday, expect me to fund their charity day out or their charity holiday?!
Ignorance of what they’ve signed up to? Maybe.
Complacency, thinking that nobody will read the small print to notice? Possibly.
Needless to say, I do look at where the money goes when I sponsor someone, because I don’t have a money tree in the back garden. (Oh, I wish!)
If the topic of my rant is news to you, I’m glad that I’ve shared something possibly useful to you. If you’re considering doing an “event” to raise funds for charity yourself, always check if all of the sponsorship money goes directly to the named charity or whether some of it goes to pay for your participation.
If there is an entry fee that’s a good guide that you’re paying for your own participation (aka “self-funding”). Sometimes though, there are two entry fees, with the cheaper one requiring achieving a minimum sponsorship — in that scenario you should check where that minimum sponsorship money goes.
If you can’t afford to self-fund your participation, ask your very close friends and family if they can help you out — some will be willing to.
I know I’m not alone with not wanting to fund other people’s events/holidays in general, especially those I’m not close to, so it is worth checking into this topic, as you could easily lose out on sponsorship money you’d otherwise raise.
Needless to say that all of the charity events I’ve participated in I have fully self-funded. I do put my money where my mouth is. 🙂
I’ll have to think about doing a cancer charity “something” next, maybe a moonwalk? Hmm… I’ll need to save up first!
The best advice I can give is to not randomly Google treatments, outcomes, side-effects etc. But you’re probably going to at some point anyway. 🙂
So, when you do… bear in mind that most of what you come across on Google will be out-of-date, and quite possibly irrelevant to you in the UK, as there is a ton of USA-based content out there. It really is better to stick to Macmillan and to properly registered UK charities relevant to your diagnosed cancer.
A good example of the USA bias happens with chemotherapy, and cold capping. Over there it’s not uncommon for patients to have to do manual cold capping (taking ice with them to hospital, manually switching out several frozen caps etc), but the usage of manual caps is rarer in the UK. I’ve not encountered anyone who has actually used the manual type. Plus, cold capping here is free if it’s provided by the NHS, and you can’t pay to get it if it’s not offered by your hospital.
Also, chemotherapy patients in the USA seem to use frozen gloves and frozen socks to protect their nails and hands/feet a lot whilst actually having their IV infusions — this is not something that is common over here. I’ve not seen anyone actually do it, and as we’re not all given PICC lines or ports automatically here (often having our hands cannulated instead), using the frozen gloves wouldn’t even be possible. The NHS doesn’t provide the frozen gloves/socks if you do want to try them, by the way, but you can buy some: https://amzn.to/3vU6ir3 (socks) and https://amzn.to/3vWv8H6 (gloves). If you do choose to buy them you’ll need to take them to your chemotherapy sessions and wear them whilst actually having your infusions. (You might need a second pair so that you can swap over once the first pair have defrosted, depending how long your infusions take.)
The other big piece of advice I’d give is to look at the freebies section of my blog to see what various charities give away before you start buying products you wouldn’t buy otherwise. They’ve usually taken into consideration what is most suitable for a chemotherapy and/or radiotherapy patient. It might save you a few pounds which you can then spend on a treat to celebrate an achievement later on. 🙂
Something that you might want to think about is documenting your journey. Even if you don’t think you’ll ever want to share anything with anyone else, you might find it useful just for yourself. Take photos of things and/or of yourself so that you can see where you started and where you ended up. Make notes of your treatment, side effects etc. If you do want to share with others, you could set up a blog (or ask someone to set up a blog for you), so that you’re just posting one update for friends/family to read instead of telling them all individually. It doesn’t need to be pretty, those who are interested and care will read anyway — you can make it pretty later on. Maybe you’ll be like me and decide to write a blog after you’ve finished “primary” treatment, and wish you’d started it sooner…
Finally, if you know there is a chance you’ll need chemotherapy, get a check-up with your dentist ASAP, so if you need any treatment you can get it finished before you start. You may be limited as to what treatment you can have once you’ve started chemotherapy, because you’ll be at higher risk of infections, plus chemotherapy can (badly) affect your dental health too. It’s better to start with your teeth in as good condition as possible!
You may be wondering how your friends and family can help you during your cancer treatment, or you might even be here reading my blog because you have a friend or family member going through cancer treatment and you’re trying to work out how you can help them.
Everyone is different though; their cancer is different, their treatment plan potentially different, how they react to treatment can be different, and what one person might find helpful, another won’t.
The most important thing I will suggest, if you’re here looking for advice on how to help a friend or family member going through cancer treatment, is don’t just say to them “I’m here anytime you need help” and leave it at that.
That’s generally not very helpful at all. It puts pressure on the patient to think how you can help them. They have to think of what things they need help with and then decide if you can provide that help, and then try and decide whether it’s reasonable to ask you to provide that help. That’s stress the patient doesn’t need when they’ve likely got a bazillion hospital appointments they’re juggling, not to mention feeling rubbish from the treatment they’re having. Or maybe they’re just in that horrible limbo when they’ve been given a diagnosis of cancer, but are still waiting for full details and/or their treatment plan. They’ll appreciate the sentiment behind the statement, but that’s probably about it.
Instead of saying something like that, or after you’ve already said it, try and think about how you could actually help. Things like…
Taking them to (some) hospital appointments, or picking them up afterwards. Staying with them during chemotherapy sessions for company — if allowed. Picking up their medication and/or shopping. Taking them shopping if they prefer to do that but can’t carry much/drive. (With some surgery they might be advised not to do any heavy lifting for 6 weeks or even more!) Babysitting during hospital appointments perhaps. Doing the school run for them. Walking the dog — or cat. Cleaning out the rabbit hutch. Dragging the rubbish bins out front on collection day and taking them back afterwards. Cooking them a meal once or twice a week to save them doing so. Buying them a gift for something that they’d find useful during treatment. If you’re a knitter or a sewer you could even make something for them, such as a hat if they’re facing hair loss, or a drain bag, or even a blanket… whatever would be useful to them. Or offer to pop round/phone/online-chat regularly, if you normally would, just to chat. If they’re not especially technically literate but are having surgery or chemotherapy you could offer to set up offline music/books/films on their phone or tablet so they have something to distract them whilst in hospital. Or you could set up an online blog for them (ask permission first) so they can document their journey online for everyone to see, with the added bonus of them only having to do one update instead of telling multiple people the same thing.
Are you having ideas now? 🙂 It doesn’t need to be something you do in person either — doing something on Zoom, or watching something together on a livestream could be appreciated just as much as actual physical help.
The cap which one of my amazing friends made for me. (I have a thing for glitter!)
As the patient, one thing that my friends seemed to find helpful, and in fact one of them suggested it to me to start with — was creating an Amazon wish list. I’m not really a flowers person; I prefer chocolate. Not all of my friends know my preferences when it comes to chocolate though, so a wish list was created and I was duly swamped with chocolate. (If any of my #AmazingFriends are reading this — thank you, again!)
So I’d definitely recommend setting up a wish list somewhere, on whatever website makes sense to you. You can put “treats” on it so people know what you’d like other than the obvious flowers and fruit, or you could use it for more practical gift ideas — hats, scarves, items to use in/at hospital. If you read the rest of my blog you’ll see what I found useful at various points.
If you decide to use Amazon for your wish list, you just go to their homepage, and browse like you normally would. Instead of adding items to your basket though, look for the “add to list” option instead. Clicking on that will take you through creating a wish list, if you don’t already have one. This was/is mine, if you’re curious: https://www.amazon.co.uk/hz/wishlist/ls/JMTSI2ID2OXF?ref_=wl_share
Where to find the “add to list” wish list option on Amazon.
Another thing that might help is planning some kind of tentative event for after treatment has completed, or after a certain stage of treatment — I am conscious that not everyone will “finish” treatment. Nothing too set in stone date-wise, as treatment plans can change. So booking a celebratory pre-paid three-week cruise starting on a specific date really isn’t a good idea, but planning a trip to say Cornwall, deciding where you’d stay, what you’d do, who exactly you’d go with, maybe where you’d like to eat… that could be a fun distraction, and something to look forward to when in the middle of all the rubbish stuff cancer brings.
Do you have any thoughts on this topic? I’d love to hear them!
Whilst your family and friends will want to help support you through your cancer diagnosis and treatment, sometimes talking to someone who has been in the same situation as you is more helpful.
In-person
Your preference might be to meet people in person — for this, I’d ask your hospital team. They should know of any in-person support groups in your local area, and there might even be some held at your hospital.
Maggie’s centres offer in-person support too, and they’re dotted around the UK, close to/at various NHS hospitals. For more info check their website: https://www.maggies.org
Telephone and email
Some cancer charities offer to set up a sort of “buddy” service, where they match you up with a trained volunteer, sometimes who has been in similar circumstances to you, to talk to, usually via phone or email.
You’d need to search for the specific charities related to your cancer type for this — just check that you’re looking at UK-based properly registered charities. Or, for a more general cancer buddy service, Macmillan offer weekly calls for up to 8 weeks: https://www.macmillan.org.uk
Some cancer charities also run helplines where you can ask more specific questions about your cancer, treatment, and other issues around your diagnosis, where trained staff members will answer your questions. Again, searching for charities related to your specific cancer will help, plus there is also Macmillan again too.
Online
And then there are heaps of support groups you can join online, for all different kinds of cancers.
Lots are on Facebook, and though many are “private” groups with posts only visible to other group members, you do need to sign up to Facebook using your real name. This means it’s not anonymous, just hidden from the other people you know on Facebook, unless they’ve also joined the same group. There can be absolutely fantastic support if you find the right group though, so it’s worth looking for a group if you use Facebook. One thing to also look out for are “hidden” private groups which don’t show in searches at all on Facebook; to find these groups you need to be invited by someone who is already a member. Usually there will be a public page which you can message to get an invitation to the group. I made the mistake of ignoring all the pages and only looked for groups, and so I initially missed a group which is really relevant for me!
If you want to be anonymous, or just want to browse through other people’s experiences with cancer, there are places you can look…
The first place to start would be Macmillan: https://www.macmillan.org.uk — they have online communities/groups for many different cancer types.
After that, many cancer-specific charities have their own online communities/groups too. There are far too many for me to list here — I’d be bound to miss some!
And now for a couple of less-obvious places you might want to consider looking at…
There’s a general “cancer” support post on Mumsnet, in the Talk / All Talk Topics / Health / General Health area: https://www.mumsnet.com/Talk/general_health — look for the “Cancer support thread #” post; they’re up to #82 as I write this. It’s an anonymous support group, and totally open to the public to read, so you can easily lurk if you prefer and just learn from what others post. They’re a friendly, helpful bunch if you join and ask questions though.
There are cancer discussion areas on Reddit too, with https://www.reddit.com/r/cancer being the obvious place to start. It is totally anonymous, and open to the public, so you can lurk to your heart’s content. You do need to be really careful about whether information on Reddit is relevant to the UK or not though, as the default tends to be non-UK.
Hopefully somewhere in all of the above suggestions you can find “your place” in a support group — good luck!
Cancer Research UK help fund scientists, doctors and nurses to help beat cancer sooner. They also provide cancer information to the public.
Some hospitals offer a booklet to patients undergoing chemotherapy where you can log all of your appointments, keep track all of your blood test results and note down any side-effects you experience from chemotherapy. If your hospital doesn’t provide a booklet like this, you can get your own for free from Cancer Research UK.
This particular booklet also includes details of what the common side effects of chemotherapy are, how to treat any side effects, plus a detailed guide for when you should contact your 24-hour emergency/rapid response telephone number too. I wish I’d had one of these before I started chemotherapy.
Look Good Feel Better is an amazing charity which offers multiple free workshops on hair, makeup, nails and more. I thoroughly recommend browsing their website to see all that they have to offer.
The “skincare & makeup” workshop and the “hand & nail care” workshop, which can be attended in person or virtually, both offer free gift bags. I have also done the “hair loss, scalp care & new growth” workshop, but at the time it didn’t offer a gift bag.
If you do the virtual version of a workshop any gift bag is posted to you after the event, so if you want to follow along with the experts you’ll need to have the items already, or attend a session in person.
Cancer Hair Care is a charity that offers a free hair loss advisory service, led by their trained Cancer Hair Care NHS clinical specialists.
They don’t offer standard gift bags, they tailor what items they send to your own circumstances, so you only receive items you’ll actually use. The stand-out freebie is a knitted hair loss doll to explain hair loss to young children — if you have young children you should get one!
As I went through chemotherapy during the height of Covid-19 restrictions I am not sure how my experience of this charity’s freebies differed from “normal”; their website now seems to indicate that freebies are more for children than adults. They also offer a couple of free workshops for all ages in conjunction with Look Good Feel Better. (The workshops can be booked through either charity’s website.)
Open to all UK cancer patients, though aimed more at children and teenagers.
HeadWrappers is a hair loss advisory service, where they focus on practical tips and alternatives to wigs. Their aim is to help people look good and feel more confident about themselves as they undergo cancer treatments which may cause hair loss.
They offer free in person workshops in London and the South East, and also offer free virtual workshops too. Once you’ve registered for a workshop they send you a free headscarf and contrasting tie through the post — as the workshops teach you how to tie a headscarf, amongst other things. You can choose the colour of the headscarf.
HAIR REBORN is a charity offering support, advice, and a free hair styling service for people suffering hair loss as a result of cancer chemotherapy treatment.
I wish I’d known about this charity whilst I was actually on chemotherapy, instead of discovering it a year after my last session.
Open to all UK chemotherapy patients aged 16 and over, though the last time I checked all but one of the participating salons were in England (and one in Wales). You also need to contact the charity within 6 months of your last chemotherapy session, otherwise your hair will be too long for the services they offer.
RaspberryLimeMango — UK cancer tips and freebies 
You must be logged in to post a comment.