One of the more surprising side effects of chemotherapy has definitely been the impact on my tastebuds. I knew I should expect a period of time where I would feel very nauseous and I am pleased to say I seem to have passed that for now, but I wasn’t prepared for what followed. Strangely, since then, as I explained in my previous post, I have been developing strong cravings for certain foods and my poor family simply have to follow suit! During the first week after treatment, it was all about cheese and I didn’t get through a single day without having this loaded on to whatever I was eating. So much so, that I was waking up several days on the trot, commenting to my husband that I was having really mad dreams all night, to which he drily observed, “That will be the cheese.”
Moving on to week two after treatment and I find I am able to vary my diet quite a bit. Cheese is still involved but there are many different meals that I now fancy. My husband and son tend to take on a worried look, usually around the time we are having dinner, as I announce what my next ‘must have’ meal is going to be. Hubby in particular, who is not known for being adventurous with his food choices, tends to react with an, “Okay…we could have that…” On the plus side, we have gone away from our fairly standard pattern of chicken fajitas, Hunter’s chicken and chips, a pasta dish, a toastie…then the obligatory take aways of course (because it’s the weekend and why should we cook?) Now we have such a range of menus, we could give Gordon Ramsay a run for his money.
So this week we tried our hand at making butter chicken from a friend’s recipe, and it was delicious! My husband (the fussy one!) commented that this was marriage material. Good job since he is now very much stuck with me!
On another day, I was in the mood for some Mexican flavours, so we made quesadillas, avocado dip, tomato salsa and nachos. Extremely tasty, if I do say so myself.
For tonight’s offering, because it’s Valentine’s Day, I opted for a steak baguette with chunky fries and onion rings.
Who needs to dine out when you can have all this at home? We all know I love going to restaurants as much as the next person but I guess the variety of meals my cravings have steered me towards is making me feel a bit better about the temporary restrictions on eating out.
Having said all that, don’t sign me up for Masterchef just yet, but be assured that you might be in for a surprise if you come and dine with us over the coming months.
Right now an update seems appropriate having got through the first week post chemo session 1. If you’ve read my previous post, you’ll know that I was given an infusion of FEC for my first cycle, and that I was given several anti-sickness meds (Emend, Ondansetron and Metoclopramide) as well as steroids for the first 3 days after treatment. The best way I can describe how I felt straight after my treatment was that I felt like I was jet-lagged but without the benefit of the holiday.
In summary, my side effects have included:
Yep, despite the hospital’s best efforts, I still managed to feel pretty queasy for most of this first week. Having said that, I haven’t been sick, so all warnings of having chemo and needing a bucket close by were not needed (thank goodness!)
Whoever said one can quickly turn into the other was spot on. Nothing else left to say on that one.
Tiredness, in fact scrap that, exhaustion!
I already suffer from an underactive thyroid so I know all too well what exhaustion feels like, but this has been on another level. I have had to break up any activity (ironing, unloading the dishwasher, etc.) into tiny chunks with a sit down in between. This is no exaggeration. If I were to stay on my feet, I would fall over. I have coped by giving in to day time naps whenever needed.
This has been so weird for me as I didn’t really experience this throughout either of my pregnancies, yet it has really hit me now (and I’m not pregnant!). I currently can’t stand the thought of tea or coffee. That is a shocker for those of you who know me as I usually can’t get past 10am without a coffee and I tend to drink around 8 cups of tea per day. As for food, I have had to stick to fairly bland stuff, like potato with cheese, pasta with cheese and crackers with cheese. The theme is definitely cheese! I crave it every day! This isn’t unusual for me but I am normally a bit more adventurous with my diet! I have also noticed that I can suddenly just fancy eating something, for example, cheese (!) and pineapple and then I have to have it as soon as possible. Very odd!
Aversion to smells
I am currently intolerant of even the nicest smells. No perfumes for me! I’ve had to change handcream about three times as I can’t cope with the smell of my other ones. The washing smells too strong. You name it, I hate it. As for bad smells, well, let’s not even go there!
So far this has happened at night time particularly, but this morning I noticed dry patches in my mouth. I have tried biotene toothpaste, mouthwash and drinking copious amounts of water. The most effective remedy for me is in fact pineapple juice with lemonade. I can see my sugar intake rocketing at this rate.
This side effect comes second after nausea for being the most annoying for me. I have to pace myself so much and sit down regularly. Not really in my nature!
That just about sums up what I have experienced so far. If you are going through chemo treatment, you may find it’s completely different for you – it all depends on the drugs used and the way we respond as individuals. On the other hand, you may be able to relate to some of the weird stuff that has happened to me this week!
The Breast Care nurse suggested I would probably take a big nosedive after finishing the steroids, and she was very accurate with that. Saturday and Sunday (days 5 and 6) were by far my worst days. I managed a walk today which I take as a sign that things are looking up. Having said that, my immunity is now supposedly at its lowest so I shall be running a mile (slowly of course, as I can’t even walk fast at the moment) from any coughs, sneezes and other lurgies!
Luckily, as ever, I have been surrounded by a brilliant support network: meals cooked by my Mum, messages and visits from family and friends and the fantastic Breast Cancer Care Forum community, who are always ready to answer questions. It’s good to be supported as it certainly hasn’t been a normal week in any way – I couldn’t even make it to the ice hockey.
The day finally arrived where I would join the chemo train, which for me was a step in the right direction towards getting my life back. I felt like I had been waiting for this day for so long, but now that it was here, I was certainly feeling less keen.
My appointment was at 10am, so that gave me time to get up without rushing around, prepare a snack to take with me and take the anti-sickness medicine and some paracetamol to help me through cold capping. We arrived to a fairly busy waiting room but I was whisked straight through to the room where I was to start my treatment. There were just 3 patients having chemo, 2 of whom had their partners with them, so it was quite calm. There were 2 nurses on duty and there were regular visits from a volunteer who was offering us all hot drinks.
The nurse who looked after me was an agency nurse and therefore quite new to the hospital, having been there since September. She set about checking my blood pressure, only to find that the machine wasn’t working, therefore resorting to counting my pulse rate the old fashioned way. Next, a temperature check with an ear thermometer which I am glad to say was working well as I would have hated to have this measured the old fashioned way! Then the nurse asked if I had taken my anti-sickness tablet and my steroids. I informed her that I had not been given any steroids at which point she fetched me a dose to take there and then, warning me that they are likely to keep me awake at night. Wonderful!
As my checks were fine, the cannula needed to be inserted with a steady flow of saline attached to it. My brilliant veins from Friday were nowhere to be seen so the nurse had to supply me with a heated pillow to see if they would put in an appearance. Then it was time to prepare for the cold cap. I was told to go and wet my hair and apply conditioner. Luckily, I had brought my water spray as I would have struggled to wet my hair without drenching the rest of me at the same time. Job done, we then needed to select the right size cap. I assured the nurse that I have a big head. Nevertheless, she proceeded to try a medium size on me as there should not be any gaps. Turns out I was right and I do have a big head. So a large inner cap was needed and this took some pushing and shoving to get it to sit on my scalp correctly. Then the outer cap (also large!) was strapped tightly to my head with a chin strap which severely restricted the movement of my jaw. I had a headache before the machine was even switched on! Once the cold came through, the first 20 minutes were indeed pretty painful and very cold. My blanket certainly helped, as did my cosy slippers.
Since the cold cap needed to be on for 30 minutes before treatment, distraction was needed to stop me thinking about the horrible sensation in my scalp. I couldn’t wear my glasses because of my new head gear, therefore reading wasn’t an option. My ears were covered up, so listening to music was also out of the question…Oh dear! Husband, this is where you come in handy…wait, he was in his own little world. Of all times!
“Read me some clues for this crossword puzzle!” I pleaded.
He sheepishly took the puzzle book, read the first clue to himself and then proceeded to write down the answer! Seriously! I told him he was meant to read them out to me so that I could join in! Finally, he got the idea and we tried to solve a few clues. My brain was obviously being affected by the extreme cold as I was struggling to think of the answers – This, coupled with my husband’s dodgy spelling led to us falling about laughing, much to the bemusement of the other patients. Hubby continued to show his lack of experience of doing crosswords when he read out a clue which was followed with ‘INITS’ in brackets and he asked me what that meant. I told him it means initials. “Oh!” said my husband, “I thought it meant innit!” Well, if I wasn’t crying before, I certainly was now! Things took a turn for the worse when one of the more mature ladies opposite me had a phonecall and for some reason I found her lively disco ringtone very amusing. I did wonder if the nurse had given me a good dose of laughing gas as the tears were streaming down my face! Mission distraction: Achieved!
After a while, we composed ourselves and the calm atmosphere was restored. I had brought along my coffee in a thermos cup but oddly enough, was not enjoying this very much. Don’t tell me I am going off coffee! Shocking! I didn’t much fancy the ginger cake I had brought along for my snack either.
After half an hour, the nurse returned with a trolley and a big tray of syringes. She and her colleague double checked all of the drugs and my personal details. I was also asked a range of questions to check that my vital organs were all in good working order. Then the treatment started. The nurse injected three lots of epirubicin first which was bright red and would come out later the same colour it went in (apparently). This particular drug turned my hand and arm very cold so I was given the heated pillow again to warm me up. Next, one lot of fluorouracil and for this one, the nurse advised me to suck on a mint to prevent possible sinus like pain. I could actually feel it working its way up through my veins which was weird to say the least. Finally, two lots of cyclophosphamide, and my infusions were done. Unfortunately, the cold cap wasn’t done yet as it needed to stay on for a further 90 minutes.
During this time, I was offered a sandwich and some juice, as was my husband but I told him he had earnt his bacon sandwich from the cafe on this occasion. Eating a sandwich with restricted jaw movement was slow but I wasn’t going anywhere soon so it was fine. I tried to read my Kindle by enlarging the text but it was quite blurry without my glasses which didn’t help my headache. As soon as hubby returned, we continued with the crossword. I was becoming increasingly in need of some more paracetamol but I had to wait another 40 minutes before I was due another dose. Painful!
Eventually (those last 40 minutes did drag!) the nurse switched off the cold cap, telling me that it needed to stay on my head for another 5 minutes while it warmed up. Removing it straightaway would have defeated the object, as my hair would have literally been ripped off my scalp. I was allowed to loosen the chin strap which was a bit of a relief at least. When the cold cap was removed, I was left with a few icicles on my head. Good job I had my woolly hat to wear on the way home. My head quickly became very hot which was a welcome feeling.
Just before we left, there were some visitors from the Lewis Foundation, which is a charity I hadn’t heard of. They were very kind, offering each patient a goody bag of their choice. For me, it had to be the one with the puzzle book, our new hobby, and a bag of sweets.
I left the hospital with another goody bag from the nurse – this one filled with anti-sickness meds and steroids to be taken over the next few days. So my appointment lasted a good hour and a half longer than I had estimated, but it was done. My next chemo is due to take place on a Tuesday again, which the nurse informed me tends to be the quiet day – Hurrah for Tuesdays! Before that I will of course have my bloods checked and go for a chat with the oncologist.
It’s chemo eve – It doesn’t quite have the same ring to it as Christmas Eve, does it? However, just like crimbo, I have been busy today preparing for the big day tomorrow. No carrots for Rudolph or lists for Santa – although I might ask the good man for a clean bill of health given half the chance. No, I spent my day addressing some of the likely issues I will face as a result of going through chemo: namely damaged nails and hair loss, oh, and the small matter of not being able to have a lot of restaurant food over the coming months.
This morning, I painted my nails dark red using my Mum’s Chanel, top brand as recommended by my favourite oncologist. In the afternoon, I went for a wig consultation which was a strange experience. Here was my chance to create a new image…should I go for pink hair as one of the breast care nurses suggested? Or should I opt for long, blonde locks, the complete opposite to my shortish, dark, wavy bob? Call me boring but I wanted something that resembles me at the very least. So I went into the salon with a good idea of what my wig should look like. Nevertheless, I couldn’t resist trying on a few outrageous wigs and it was fun! I hasten to add that they didn’t suit me in the slightest and should I decide to go ahead and order a wig, I shall stick to the original plan, which is something that looks a bit like me.
The lady in the salon was brilliant, allowing me plenty of time and talking me through all of the information (who would have thought there was so much involved?) Having narrowed it down to two wigs, I left the salon, knowing that I can order one and have it within 48 hours so there is no need to rush into anything. I must say, wigs are not the most comfortable thing to wear, so I will wait and see how much hair I lose and whether I want to stick to headscarves as a cover up or have a wig as an option. Having sorted out my nails and hair in the same day, I felt as if I was getting ready for a prom, not a gruelling dose of chemo!
As it was lunchtime by now, we decided to have a bite to eat in a lovely Italian restaurant. I think I can truly say that since the weekend, I have made up for the fact that I won’t able to have take aways and the same amount of restaurant visits that I am used to for the next 5 to 8 months.
Lunch was followed by a visit from a dear friend, and then the nerves started to set in. Whilst there is nothing left to do in terms of preparation, I can’t help feeling out of control, which I suppose is normal as I just don’t know how I will react to all this.
That just leaves me to say, my chemo prep is done, my bag is packed and I’m good to go.
Today I had my pre-chemo appointment at the hospital. When I woke up to several inches of snow, I did wonder if this appointment was in jeopardy but luckily the snowfall stopped by mid-morning and it was business as usual.
This time we knew what to expect in terms of where to park, where the Macmillan Unit is and other such practicalities. The waiting room was not as busy as last time but there was still a lot going on. I got called through for my blood tests quite quickly after arriving. The nurse took us through to a smaller side room than last time and revealed that this is where I will be having my chemotherapy next week. The room was full with about 8 people receiving chemo while their respective partners sat beside them. There was music playing in the background but other than that there was nothing very interesting going on.
I had my blood pressure and temperature checked which the nurse stated were ‘textbook’. Aren’t I clever? Then she took a few vials of blood and thanked me for having such great veins. Very unusual for me, I must admit. Seems like I was on top form today. Then a quick weight check and I was done in the chemo room.
Next stop was the meeting room where the same nurse proceeded to go through ‘what to expect’ during chemotherapy. She said I would have a doctor’s appointment one week before each chemo session to check how the previous cycle went and how I am tolerating it. This will allow them to make changes if necessary. Two days before each chemo session, I will have blood tests to check my red and white cells.
The nurse then went through lots of information, some of which was covered at my appointment with the oncologist. I will summarise all that was discussed below.
Observations will always be carried out first (blood pressure & temperature).
A cannula will be inserted, unless my hand becomes sore, in which case a PICC line will be used instead.
The drip with the chemo drugs will be inserted. The first 3 cycles (FEC) will be administered via 5 or 6 syringes with a nurse sitting beside me. The final 3 cycles (Taxotere) will be given via a drip.
Herceptin will be given from cycle 4 and takes 90 minutes to administer. The first 3 will be given in hospital, possibly through a drip. After that, they will be given at home via injections. After the first dose of Herceptin, I will need to stay in hospital for 4 hours to make sure I do not suffer any reaction to it.
After the first chemo session, someone should drive me home but for future sessions, I can drive myself as I should feel fine initially after each session.
I was told to bring food, drinks and something to do to each chemo session. They will provide lunch (a sandwich and some crisps) and cups of tea. I am allowed to bring one person with me, who can come and go as they please. If they want to bring food and drinks from the café that is allowed but they should not bring anything too smelly as some patients will be suffering from nausea.
As I have described before, chemotherapy results in a range of side effects. Everyone is different – some people will suffer from lots of side effects whereas others have minimal problems. Some side effects are more common than others and I covered some of these in my blog post about the meeting with the oncologist. Most likely I will suffer from hair loss, nausea and tiredness. I was told that if I suffer severely with many side effects, I should inform the oncologist so that my chemo dose can be reduced.
The nurse asked me what I tend to be like with nausea and I had to admit that I really ‘don’t do’ being sick. I tend to pass out to avoid it. In fact with both of my pregnancies I never suffered from morning sickness. To avoid nausea from chemo, the nurse gave me what she described as the ‘Rolls Royce’ of anti-sickness medicine: Emend. I need to take a tablet before I go in for my chemo appointment and a further tablet on each of the next 2 days. In addition to that, they will give me further anti-sickness medication when I arrive. In order to combat nausea when I return home, the nurse recommended ginger biscuits, ginger tea and eating dry foods such as plain biscuits and toast.
Constipation & diarrhoea
Oh joy! I will get both. Constipation is caused by the FEC drugs, so that’s cycles 1 to 3, and Taxotere will cause diarrhoea. Fabulous! The symptoms will be worst on days 1 to 4. So for the first 3 cycles I need to get provisions of Senokot, Dulcolax or syrup of figs and for the final 3 I will get tablets from the hospital.
This is a delightful side effect which will need to be combated by moisturising well. The best products are creams such as E45 or anything non-perfumed.
Another common problem caused by chemo is mouth ulcers. I was advised to keep my mouth cleaner than normal! I should use a non-alcoholic mouthwash and a soft toothbrush. I can use Bonjela for any ulcers but if they get particularly bad, I should let the nurses know.
Chemotherapy commonly causes taste changes and often people will say things taste metallic or like cardboard. Highly seasoned foods may counteract this, as will strong tasting sweets such as sherbet lemons and cough sweets.
Risk of infection
One definite thing to be aware of is the risk of infection. My white blood cells will drop and will be at their lowest on days 7 to 14 of each cycle. This is the period of time when I am most prone to catching colds/bugs, etc. Throughout chemo, I should monitor my temperature 3 times a day. If it goes above 37.5 I will need to phone the hospital. The big risk is that of neutropenic sepsis which is very serious. If I feel unwell with a sore throat, aches, shivers, etc. but without a temperature, I should still call the hospital. They will then advise me on what to do. If they ask me to come in, I will need to go to A&E where I should present my ‘chemotherapy alert card’. If I have an infection, they should give me IV within an hour of arrival. If my symptoms are mild, they may prescribe antibiotics to take at home. Any infection will delay the next chemotherapy session.
As I am keen to avoid using my ‘alert’ card, these are the things I will be doing to reduce the risk of getting an infection in the first place. First of all, I will be staying away from crowded places, particularly during days 7 to 14. Any visitors who come to my house should be in good health so I will be postponing visits from anyone with colds or tummy bugs. If you are coming to see me, you will be squirted with hand sanitiser (which I will provide!) You have been warned! I will need to cook meat, fish and eggs thoroughly and wash fruit and vegetables very well. Take-away food will be off the menu until the end of chemo treatment. Bad news for me as I am rather partial to Chinese and Indian take-aways. I can go to restaurants but should not eat re-heated food nor anything from a salad bar or buffet. Again, avoiding eating in restaurants during days 7 to 14 is advised.
Scalp cooling/Cold cap
I have decided to give scalp cooling a try so that I may hang on to at least some of my hair. The hospital uses the Paxman system which I have already researched and seems to be a market leader. The system is likely to give me a bad headache so some painkillers just prior to my appointment will be needed. As I described before, I will need to wear a rather fetching rubber cap which will be literally freezing. This goes on 30 minutes prior to my treatment, stays on for the hour of my infusion and then I have to keep it on for a further 90 minutes. The nurse told me that the first 20 minutes are the worst and then it will just feel numb. She said I will need to bring conditioner so that the cap goes on and off more easily. They will spray my scalp to make it wet all over, then a blob of conditioner and the cap will go on. Over the top of the rubber cap will be a fabric cap with a chin strap (Yes, I will look amazing, and no, I shan’t be sharing any photos!) Afterwards, the conditioner can be washed out and the use of ‘Simple’ shampoo is recommended as it is the right ph level. I will need to be gentle with my hair by washing it twice a week only and letting it dry naturally. No straightening, dyeing or use of strong chemicals until 3 months after the end of chemotherapy.
If I decided not to ‘cold cap’ I would definitely lose all of my hair due to the type of drugs I will be given. With the cold cap, there is still a 50% chance that I will lose my hair. It will definitely thin out and I may get some bald patches. I will also lose my eyebrows and lashes, although they tend to hang on until around the third cycle, unlike head hair, which will start going from about 2 weeks after starting chemo. The nurse commented that my glasses cover my eyebrows perfectly so that was another clever move on my part – I shall be donning said glasses at all times!
If all else fails, I can resort to using my ‘wig referral’ form. The voucher is worth £65 towards a wig from a local hairdressing salon where the average synthetic wig costs £150. Real hair wigs are also available at a much higher cost but according to the nurse, they are quite a pain to keep looking nice. She also assured me that the synthetic wigs look lovely. Mmm, we shall see.
Extravasation is the leakage of drugs outside the vein. The risk of this happening is minimal but I need to be aware of it as it is potentially serious. If I notice any pain, swelling or stinging to the skin at the site of the drug administration I will need to contact the hospital so that the area can be treated.
So, another appointment, another ton of information to digest. Fortunately, I had anticipated a lot of the products, etc. that I will need to buy in order to stay well. The other few will be added to my shopping list for this weekend.
I was also quite shocked to learn that my blood cells and generally ‘feeling normal’ will take a year to return after treatment finishes. Also, realistically, I should plan for 8 months’ worth of chemo treatment (rather than 5 months) in case any infections cause a delay in cycles.
Not long now until Tuesday and I have never had such mixed feelings – on the one hand I am dreading it but on the other hand I just want to get started so that it can finish.
Finally, no prizes for guessing what’s for dinner tonight – my last Chinese take-away for the next 5 to 8 months.
Right now I am counting down the days for when chemotherapy starts (5 days to go!). I feel apprehensive yet keen to get it over and done with at the same time. I am trying to keep busy so that I don’t spend my entire time worrying. What is reassuring to know is that I am not facing this by myself as I am surrounded by lovely people who have been so kind with their messages, visits and gifts. My family have been amazing and are always there for me. We’ve had meals, chats and they’ve given me plenty of offers of help. It can’t be easy being the ‘bystanders’ but they are certainly being my tower of strength.
Last week I had a visit from one of my wonderful friends who used to work with me. She came armed with flowers and chocolates and we had a good catch up over several cups of coffee. The day before yesterday I received a beautiful bunch of flowers from one of my aunts which certainly brightened my day. In the afternoon I was treated to a cup of tea and a lovely chat with a friend from my school. Yesterday I got a packet of gin and tonic gums (non-alcoholic!) from my (fairy) godmother which made me smile. I also had a delicious afternoon tea with my husband which was a gift from a special friend.
Earlier this week I was lucky enough to be invited to attend Mass in my old school and I stayed for one of their famous buffet lunches (which I miss dreadfully!) In addition, I could not believe the gift I got from some of my wonderful friends there. They had recently attended a Young Voices concert, which I have been to for the last 3 years, and they had spoken to Tony Hadley from 80s band Spandeau Ballet, who was performing there. He had recorded the most lovely video message for me which I will treasure. It is particularly meaningful as the song ‘Gold’ was our finale for the Christmas production in 2017 celebrating the 50th anniversary of the school. I was totally blown away by the thoughtfulness of the lovely people who arranged this message for me.
The other massive support network is via the Macmillan forum, Breast Cancer Care forum and the world of Twitter. These are really good ways of sharing experiences with people who are going through the same thing. Even people who have finished treatment often give advice and explain what helped them to cope. It helps to know that there are always people out there listening and ready to offer some support.
These are just some of the things which help me every day to get through this difficult time. I can’t thank you all enough.
The BBC (amongst others) have been busy reporting in the last couple of days on ‘cancer clichés to avoid’. The Twitter world has had their say and I actually feel strongly enough to put my thoughts into this blog post. Before I launch into my thoughts on the things people should or should not say, I would just like to make it clear to those of you who know me, that you can say almost anything to me (within reason!) and I won’t be offended. I would really hate for people to be too scared to talk to me in case they say the wrong thing. I do think political correctness has gone a bit overboard if we are now putting pressure on people to check their phrases before speaking to anyone with cancer. Anyway, here are my thoughts.
First of all, I will highlight some of the phrases which are being hotly disputed.
“You’re such an inspiration.”
“You’re so brave.”
Personally, I am flattered if anyone says either of those to me (and they have!) I don’t necessarily agree that I am brave or inspirational but it really doesn’t bother me if people say it to me – I would take that as a compliment.
I think what some people with cancer are taking issue with is the fact that they want other people to recognise that you can’t be positive all the time. Sometimes you feel downright lousy – and that’s OK. Again, I really don’t mind if people say it to me as I realise they are trying to encourage me to stay strong and believe that I can come out the other end smiling.
Some people will say, “You’ll be fine.”
I can see how this might upset some people as it almost shies away from the seriousness of this horrible disease. The reality is, no one knows that they will be fine. Part of having cancer is the uncertainty. However, I can totally understand why people say it – they are keen to say something positive and they truly want you to be fine as well.
Upon hearing you have cancer, many people will say, “My friend had x type of cancer…” Followed by a run down of the way they coped with treatment and what they are doing now.
There are a few things here – first of all, someone who has had the same type of cancer might have had a completely different experience, partly due to the constant research (thank goodness) resulting in better and more individualised treatment. Secondly, we all react differently so they may have had every side effect going whereas another person may not. Thirdly, how they recover and what they are capable of during or after finishing treatment may be completely different to what another person can cope with. I don’t mind too much if people tell me about other people they know who have had a similar experience to me. In fact, it is sometimes helpful to hear about other people’s experiences. I suppose I just need to point out that I might be completely different and there should be no pressure on me to be like anyone else.
One thing which I do find hard is if people play down the impact of losing one’s hair due to chemotherapy. Macmillan have issued a video clip where a lady describes how insecure she feels as a result of losing her hair. I personally think it is a big thing to go through and this is nothing to do with vanity. Hair is part of one’s identity and the fact that most chemotherapy drugs lead to complete hair loss is tremendously hard to cope with for the majority of people with cancer. I know hair will most likely grow back but in the meantime, the reality is that many people will endure several months or more with no hair, no eyebrows, no eyelashes and all of this in addition to any scars they have from surgery.
On the other hand, there are some people who say all the right things and I admire the fact that they can do this. It’s like they just know what to say and they seem to have a real sense of understanding of things which might not go down so well. However I have had some people tell me that they really don’t know what to say. I think that’s fine as well and I appreciate their honesty. I know I have struggled in the past knowing what to say to people with cancer and have no doubt said something that has upset them.
The way I look at it is that people who do not have cancer or haven’t had a close family member affected by it aren’t likely to know what it entails in terms of treatment, trauma and the sheer stress it puts on a family. Why would they? If they are not going through it, they are not likely to need to know this level of detail. This can then lead to them saying things which could be upsetting to a person with cancer but I know they are not meant badly in any way. I was exactly the same until my diagnosis – I had no idea, for example, that there are different sorts of breast cancer, or how chemotherapy works. Three months down the line, I am slowly becoming an expert. Even so, there are that many differences between types of cancer, types of treatment and the way it affects individuals, that I could quite frankly still put my foot in it if I was talking to someone else with cancer. I suppose what I am saying is, people generally mean well and just because they do not fully understand what I am going through, does not mean they don’t care or are deliberately trying to upset me.
A final word about the campaigns that are currently out there recommending what you can and can’t say to people with cancer – I sincerely hope they haven’t put people off talking to anyone who has cancer by scaring them into thinking we all get upset at the so called ‘what not to say’ phrases. We are all different, and what upsets one person, may not upset another. Admittedly, there are some things which are clearly insensitive and the links below show some of the things which people have apparently said (not to me, thankfully). You can make up your own mind what you think of some of these. So all of you who know me, please carry on talking to me. I am very open about everything that is happening to me and more than happy to answer questions. As I said at the beginning, I would rather people talk to me than avoid me in case they say ‘the wrong thing’.