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.
Chemotherapy routine
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.
Side effects
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.
Nausea
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.
The ‘Rolls Royce’ of anti-sickness medication
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.
Dry skin
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.
Mouth ulcers
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.
Taste changes
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.
My information pack and Chemotherapy Alert Card
Avoiding infection
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.
Hair loss
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!
Wigs
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
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.
Final points
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.
My last Chinese take away for the next 5 to 8 months. Boohoo!
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.
“Stay positive.”
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’.
How long have I been waiting for this day? The day where I would finally have answers to my many questions and hopefully be able to start planning ahead again. Looking back now, I would say that I’m only about halfway towards knowing when normality may resume.
My first thought when we entered the Macmillan Unit was, ‘It’s so busy in here!’ Sad, but true. I guess I’ve got used to being in a bit of a bubble in the breast care unit, whereas now I’ve seen how many other cancer patients there are. Quite depressing really. On the plus side, the second thing which struck me was the help and support which was instantly evident, from the free parking to the offer of a hot drink. Staff couldn’t have been nicer.
Within a few minutes of arriving, I was called through by a nurse to carry out some checks: blood pressure, temperature, height and weight. These took place within the treatment unit so I got my first preview of what to expect when I return. There were comfy chairs set out in a circle, with what looked like a conveyor belt of equipment in the middle. A nurse was administering chemo to a patient but other than that it was fairly peaceful.
Checks done, we returned to the busy waiting area. Before long, the doctor called us through and we were joined by a breast care nurse. The first part of our discussion centered around the reason for carrying out chemotherapy for someone like me. As you will know, I have had surgery, so in theory the cancer is gone. Why then would you go through this? The answer is simple. Some of the cancer cells may have escaped and there is no way of predicting how likely this is. The doctor therefore explained that they can only go by the numbers, i.e. enter all of my statistics and results into an online tool to work out the benefit of undergoing further treatment. She set about doing this and showed us that my chances of survival in 10 years are increased by 20% if I go ahead with chemotherapy, Herceptin and Tamoxifen. She asked if I wished to go ahead. Obviously, ‘yes’ was my reply.
There was then a brief discussion around my recovery from the axillary lymph node clearance and the doctor took a look at my scars. She was very happy with the way they are healing and I proudly demonstrated how far I can stretch my arm. The nurse emphasised the importance of continuing with the exercises as my arm could quickly seize up through lack of movement. I mentioned the cording which is still present and she advised me to massage it when possible as well as consider physiotherapy.
Next we got into the nitty gritty of my treatment. I had 27 questions! So, I will attempt to summarise what we found out. I will have 6 cycles of chemotherapy, once every 3 weeks. This is equal to 18 weeks or 5 months. The drugs which will be used are FEC-T (fluorouracil, epirubicin, cyclosphamide and taxotere which is also known as docetaxel). The drugs are split so that I will have FEC for 3 cycles and then the T part, along with Herceptin for the next 3 cycles. After that, Herceptin will continue for another 10 months but this will be given to me at home. I was told that FEC can cause heart problems and that there is a further risk of this with Herceptin. In addition, the doctor said that other likely side effects include nausea, tiredness and risk of infection. When I asked if I would lose my hair, she said, “Oh, yes. Definitely!” Good job I asked! The other joy to look forward to is menopausal symptoms such as hot flushes and night sweats.
I was interested to know how chemo will be given as I have read there are a variety of methods. The doctor confirmed that it will be given through a vein, starting with a cannula in my right hand. The nurses will assess my veins for future cycles and if they feel the need, they can insert a picc line (peripherally inserted central catheter) which will stay in place for the duration of my chemo treatment. The first FEC infusion should take around 30 minutes but the T infusions along with Herceptin will take longer.
Amother question I had was whether it was worth attempting to prevent major hair loss by using a cold cap. I have been reading about this on various forums and have come to the conclusion that there is no way to stop hair from falling out but that the cold cap may reduce the amount that falls out. I was surprised at the positive answer from the doctor and the nurse, who both suggested it is worth a try. It does however lengthen the treatment time by 2 hours. It also makes you feel extremely cold! I have in fact read about people leaving the hospital with icicles attached to their head! Not a good look! Anyway, I will make my decision nearer the time. They did advise me to have my hair cut a bit shorter in preparation so that the cap would fit better.
Next, I had many fairly trivial questions which you may find amusing. One thing I had picked up on the forums is that nail damage appears to be a common side effect of chemo. Some of the ladies suggested that wearing dark nail polish could prevent this. I asked the doctor if this was known to be true and without looking up at me from writing notes, she said, “Oh yes. Chanel of course!” I had also picked up from forum chat that chemo makes you more sensitive to the sun – not that we have a lot of risk of that here right now, but I thought I should check. The doctor said if I lived in her country, which is Greece, I may end up with odd dark patches of dark skin but she agreed this should not be an issue in good old England. I also asked if there are any foods or drinks I should avoid. Funnily enough, the nurse had briefly left the room, so the doctor said I can virtually eat what I like but that the nurses would tell me different. She said they’re very strict and that they would go through this with me at my pre chemo appointment. Hang on – I thought this was my pre chemo appointment? Apparently not. Next week I will meet with the nurse and she will be able to answer all of my questions. At this point I felt bad for bombarding the poor doctor, who was clearly just meant to get my consent at this apointment. She didn’t seem to mind though and politely continued to answer my queries.
Being the planner that I am, I needed to jump ahead to the next stage after chemotherapy, which will be radiotherapy. It turns out that there will need to be a 3 week gap after chemo before this can start. The Tamoxifen will then also be given in tablet form for the next 10 years. The doctor explained that extreme tiredness/chronic fatigue syndrome is a very likely long lasting effect of all this treatment, way after it is finished. She said many people reassess their life at this point and often opt for a change in career. My hopes of returning to normal were looking dimmer by the minute. I had hoped returning to work in September would be a given but this is by no means definite. The doctor admitted that chemotherapy is stupid but her words were, “You have to burn the blanket to kill the flea.” Never heard that one before. Is it a Greek expression?
My next couple of questions were based around lifestyle, including: Can I go swimming? To which the answer was a firm ‘No’. Playing badminton is not a good idea either. In fact, I got told off for overusing my arm! Apparently, I shouldn’t be carrying bags or anything like that! Oops! Of course, I had to know if I can at least go to the ice hockey. The Greek doctor misunderstood and said, “You are very sporty but no ice hockey.” Once I explained I would only be watching and not playing, she said it would be best not to do this during week 2 of each cycle as this is when I am most prone to infections. Thank goodness for the live stream which I will now be watching during week 2. As for exercise, seems like walking is the only option for the time being.
Finally, my 27 questions were answered and my husband got the opportunity to quiz the experts. He was interested to know what he should be doing to help me. How sweet is that? The doctor’s response, “Make her coffee in the morning, cook, clean, do the washing, do the shopping, carry her bag and buy her Chanel!” Love this doctor! Bet he wished he hadn’t asked!
As we prepared to leave, the nurse returned with an appointment card for me. I will have my pre chemo and blood tests appointment (where I can ask lots of questions, haha!) next Friday and then my first chemo session will be in 2 weeks on the 5th February. We then briefly met one of the other nurses who will be looking after me and we were free to go, laden with reading materials and a special parking ticket to activate the barrier for our exit.
On this occasion, our visit was not complete as my sister in law was in hospital too so we popped in to see her. In addition, before going home we had to make the trip to the restaurant for a bacon sandwich. Even I felt the need to join in this time!
So, off home to digest all of this information and to prepare for the next stage.
It has now been 4 weeks since my last operation where I had my lymph nodes removed from under my arm. This feels like a good time to summarise the effects of the procedure and the impact on daily activities. I would say that the first 2 weeks were the hardest as the progress of my recovery seemed very slow and the movement of my left arm was severely restricted. This led to me needing a lot of help with daily tasks, even simple things like picking things up, and closing doors. I tried my best to do the post surgery exercises but I found them very painful and difficult to begin with. I would often forget that my range of movement was limited until I tried to use my arm, at which point I would get a painful reminder! Who would have thought that throwing something in the bin could hurt so much! Those of you who share my love of ice hockey will understand what I mean when I say there was no chance of me putting my hands up in the air, nor swaying side to side to Sweet Caroline. I managed to develop my own one-handed version so that I could still join in with the pre-game build up.
During weeks 2 to 4 of my recovery, I noticed much faster improvement. I was able to carry out the more advanced exercises and this really helped to increase the movement of my arm. This meant I could start to carry out more jobs around the house and do activities that I enjoy, such as playing the keyboard. I still experienced pain when I tried to overdo things but there was a definite improvement. The other side effects which were still noticeable and continue to affect me now include that my shoulder gets cold very easily – slight problem at the ice hockey. In addition, I have daily occurrences of pins and needles in my hand and my upper arm is partly numb, yet painful in places. The worst thing is that I have got some cording.
Cording is exactly what is sounds like, in that it looks like you have cords under your skin. These visible ‘cords’ have appeared under my arm and on my inner arm below my elbow. The photo below shows the cording under my arm. It is thought cording is caused by lymphatic fluid having solidified. It feels like tight elastic bands which cannot be stretched. It is also quite painful when I try to stretch my arm. I was told by one of the breast care nurses that daily exercises in conjunction with anti-inflammatories should improve these symptoms. Failing that, there is the option of massage therapy which I will look into if necessary.
So, life is taking on a new normal again following Christmas and New year. I am reading a lot (including Dutch magazines which family and friends have kindly given me), playing the keyboard, writing and trying to go for regular walks. I also have regular visits and messages from family and friends which is lovely and keeps my spirits up. I do find I am tired very quickly and often need to sleep during the day. My other ‘hobby’ at the moment is preparing myself for chemotherapy, but that’s for another blog post.
Christmas Day and Boxing Day passed by quickly and it was back to earth with a bump. I got called into the breast care clinic to discuss the results from my latest operation. My appointment got moved twice until finally an afternoon time was agreed. I didn’t fancy dwelling on what I might be told later so we set about shopping. (Did I mention before how it helps me to cope?) But not for clothes – this time we shopped for a new sofa. Oh, what fun we had! We took full advantage of the free hot drinks and cookies in Furniture Village and became well known to all the staff!
Soon enough, it was time to face up to the main event, so we set off on the familiar route to the hospital. There were several people waiting in the breast clinic and I felt sorry for them having to be there and possibly face bad news, particularly when they should be at home celebrating Christmas. We were called through on time and taken to one of the rooms where we awaited the arrival of the consultant and the breast care nurse. A few minutes passed, allowing me time to check that I had my list of questions and to get my pen ready to make notes.
We were joined by the same consultant breast surgeon who had advised me about the operation three weeks ago. I didn’t recognise the breast care nurse but I think I have probably met all of them by now. They had a quick look at my wound first, which they seemed happy with, although they did remove a couple of stitches which were hanging out. I showed them my rash which I have had for a couple of weeks now. They didn’t seem concerned by this, telling me it is an allergic reaction which should clear with some Piriton.
Next we went on to discuss the results from the operation. I was told that 13 lymph nodes were removed, none of which contained cancer. What a relief! Furthermore, the bone scan didn’t show any problems either. Great news all round! So, I double checked what would be happening next, and was told that I would receive an appointment around the middle of January from the oncologist to discuss chemotherapy, Herceptin and radiotherapy. We didn’t need to go into further details as we have discussed this before. Besides, they don’t know the full details as to how many cycles of chemo and which drugs they will use – all of that lies with the oncologist. I was told that I would be called in for an annual mammogram for the next five years but aside from that, the breast care clinic’s work was done for now. I was effectively discharged. What a strange feeling!
So a very brief visit to the clinic but a positive one. As ever though, hubby felt the need to follow this up with a bacon sandwich from the hospital cafeteria. Seriously! And there you have it – we coped as we always do with shopping and food!
Now a couple of weeks to continue my recovery from the operation and then we’ll face the next hurdle.
The week following my lymph node removal has gone extremely quickly, and yet I don’t seem to have done a lot other than lazing around the house. The anaesthetic appeared to stay in my system for quite a while as I still had nausea on and off, as well as a lack of pain in the site of the wound. The plus side of this was that I did not feel my flu jab which I had on Monday (the third day after surgery) at all. Must make mental note to have painful injections very soon after anaesthesia only! My appetite is still very limited but I am hoping this will return in time for Christmas dinner next Tuesday!
For anyone having to go through this operation, I would advise that you take things steady at first. As the nurses at the hospital told me, “Be kind to yourself.” This means accepting offers of help. I have taken full advantage of the fact that my daughter is home from uni for a few weeks, meaning that she has taken on a fair amount of cooking and washing. My son has been very good at serving me regular cups of tea and my husband is taking on more than his fair share of housework. He was also employed as chief present wrapper – I had to look away as his technique leaves a lot to be desired! He just didn’t understand what my problem was since the paper just gets ripped off in any case. Having my Mum nearby is also massively helpful as she has been roped into washing my hair (that arm of mine simply hasn’t got the range of movement yet) and doing a pile of ironing for us.
In addition to the invaluable practical support, I have continued to be supported with messages, cards, flowers and gifts from family and friends. People are so very kind and I cannot thank them enough. The children in my class wrote the most lovely messages on a giant Christmas card for me – tissues please!
It is tempting to run before you can walk during this recovery stage and I would say I am guilty of that. I just didn’t want to miss out on watching the Nativity in my old school, or on watching the ice hockey (one missed game was enough!) I also braved an evening into London to watch Aladdin at the theatre which was booked prior to us knowing about the operation. The trouble with carrying on as normal is, you end up worn out and sitting around in bed for days. So I have learnt my lesson and I am now trying to pace myself during this busy time of Christmas festivities.
You may be wondering whether any of the dreaded side effects have put in an appearance yet. So far, I have been quite lucky as they haven’t been so bad. I have experienced some pins and needles in my hand at times. My shoulder can get extremely cold (snuggly blankets work a treat for this). Sleeping is not easy as I have to consciously avoid turning onto my left side and any stretches of the arm are a bit painful. The trouble is, I often forget my limited range of movement and then get a nasty shock when I over stretch my arm. I also have very tender skin on the inside of my upper arm which I can only liken to the sensation of when you accidentally burn yourself on the oven (yes, I have done that before!) The back of my arm and my armpit are numb, similar to when you get an injection in your mouth prior to having dental work. It is seriously weird washing your arm and not feeling anything! Still, given the lengthy list of likely side effects they showed me in the hospital, I do feel I have got off lightly so far.
It will be at least a week before I am called back into the breast clinic to discuss the results. So that just leaves me to pretend everything is normal for the time being, and tuck into one of the many tins of chocolates sitting on the table.
Friday 14th December was the date for my second lot of surgery. This time the plan was to carry out a full axillary lymph node clearance. As per last time, I was asked to arrive at 7.15am in the treatment centre, with the aim of going home the same day. I remembered from last time that I wasn’t allowed to eat after 2.30am, therefore felt the need to eat plenty on the Thursday to compensate. Drinking water was allowed until 6.30am so again, I took this to the extreme and downed an entire pint just before that time.
We left at 7am and arrived into the treatment centre which was already full of people waiting. Once sat down, it was a few minutes before a nurse appeared to pick up the first group of people, myself included. My name was third on her list (the only Sarah!) which I took as a promising sign that I might be on the morning list. I was shown to my bay, which was at the end and therefore a lot quieter than last time. The people opposite me had chairs only so I did feel privileged to be given a bed as well as a chair. However, I didn’t get the window position this time so perhaps I should have upgraded to the garden view!
I settled down to read a magazine thinking there would be no rush. Soon enough, a nurse came in to carry out blood pressure and temperature checks. She said she was looking for my pre op notes so I explained that I hadn’t had an assessment since my last operation on the 9th November. Off she went to have a look but unfortunately to no avail. She was slightly panicked as she revealed I was on the list for 10am so she quickly carried out a blood test, measured me for those gorgeous surgical stockings and carried out a pregnancy test. She advised me to be ready as they would come for me soon. I duly got changed and barely had time to sit down before my next visitor arrived. This time it was the breast surgeon, who was a lovely lady and she went through the planned procedure with me. She highlighted the list of serious or frequently occurring risks, which was extremely long: infection, bleeding, haematoma, lymphodoema, nerve/vessel damage, arm movement restriction, altered sensation, pain, numbness, pulmonary embolism, deep vein thrombosis and seroma. Nevertheless, I signed my consent form as the alternative is even less appealing. The surgeon explained that she would be operating into the same wound as before but that she would need to make it slightly longer and into an ‘s’ shape. “S for Sarah,” I commented. She estimated the operation would take an hour and a half to two hours. All clear on the procedure, I was left in peace for a moment.
My next visitor was the anaesthetist who went through various checks with me, such as ensuring I had followed the fasting rules and that I hadn’t reacted adversely to anaesthetics in the past. I didn’t have any questions but I did request that they talked to me about something nice just prior to putting me to sleep. He said he would talk to me about food but I replied that was a bit unfair as I wasn’t allowed to eat! Just then the surgeon reappeared as she had forgotten to draw on me. A quick scribble on my lefthandside and I was left alone again.
At 9.45am a nurse came to wheel me through to theatre. I told her she didn’t need to go to the gym as this was surely as good as a workout. On arrival in theatre, I was greeted by the anaesthetist who told me he had given everyone the heads up to talk about something nice. So, he asked me to imagine this lovely holiday in the Caribbean…the beach, the sea…but no alcohol! While he and his assistant started administering various drugs, they told me I should be feeling a bit woozy now. Once I agreed that I was, he said, “Good. I’ll grab my hammer now.” Very funny. Way to relax me! He admitted it was an attempt to make me laugh as my heart rate had just rocketed. Next a smelly oxygen mask was placed over my face and I was told to take four deep breaths. That’s really all I remember until afterwards.
As I was coming round, I could hear someone telling me that I would be seen in the breast clinic after Boxing Day. They were telling me that the operation was over which came as a bit of a surprise to me as I was dreaming that it was the night before my surgery. My feet were moving around, possibly to the music which was playing in the background: first Stevie Wonder’s ‘Signed, sealed, delivered’ followed by The Jacksons ‘I want you back’. Oh, the irony! (Give me back my lymph nodes!) I was offered some water which tasted gross and I was suffering from a severely sore throat so only whispering was possible. I really only wanted to sleep. There was a man opposite me who was chatting away to the nurses but I didn’t feel the same energy.
The nurse seeing to me was cheerfully singing while I sipped water and dozed on and off. I was surprised to note that it was 12.45pm already. I thought my operation was due to be completed by 11.30am. A little while later, the nurse wheeled me back to the ward where I dozed and sipped water intermittently. I was offered a cup of tea, which went stone cold before I had the energy to drink it, and I declined food as I was feeling very sick. I would have slept soundly, had it not been for the three women opposite me who were all having cataracts removed. They chatted non stop and hadn’t observed the ‘put your phones on silent’ rule. I did get slightly irritated when they started discussing fish and chips for tea and which chip shop was the best for a large piece of cod. Yuck!
As I kept waking up and looking at the clock I just couldn’t understand why I felt so sleepy compared to last time. I was hoping to be home by 3.30pm drinking a cup of tea in my living room, but this was looking more and more doubtful. The breast surgeon came to explain what had happened. She said that everything was glued together due to having had such a recent operation, therefore the procedure today took a lot longer than planned and they were forced to give me more anaesthetic. That explained my nausea. She said she had applied plenty of local anaesthetic to the area but that it would feel very sore tomorrow due to all the digging around. She had found it impossible to see where the nerve was so she had to check for damage, something called winged scapula. A simple test of me pushing against her hand proved that there was no damage thankfully. She concluded by saying it didn’t bode well that I was still in bed and hadn’t eaten, therefore I may not be going home that day. The nurse asked me if I wanted to go for a walk and sit on the chair, which I did – only to then fall asleep in the chair!
I was very popular for the rest of the afternoon. The surgeon and the nurse took turns to encourage me to eat a biscuit and drink tea, as well as threatening to check if a bed was available for the night. In the end, they decided to secure a bed for me ‘just in case’ saying that I didn’t have to use it but the option was there. By 6.45pm, I was the only patient left and the nurse had made a phone call to my husband, who was already waiting outside the treatment centre. She had to discharge me from the treatment centre, which was all a bit long winded. My instructions included ‘princess duties only’ and not to lift anything heavier than a wine glass! Eventually, hubby came in and together, they transported me to ward 24.
I was handed over to staff nurse Orlando and his team. I had a very modern bay all to myself. Did I want to get into the bed? No, I thought, best not otherwise I probably wouldn’t ever get out. I was given a very effective anti sickness medication and some painkillers, which seemed to do the trick. By 9pm I was cheerfully telling them I could go home as I felt so much better. I had even eaten two whole biscuits! They clearly didn’t feel the same optimism as it was at least another hour before they agreed to remove my drain. (How are you meant to do anything with that thing attached to you?)
Finally, at 10.30pm I shuffled out of the ward, into the car park and we were on our way home. While I concentrated on trying not to vomit in the car, hubby told me about his day, which had been long and exhausting too. Once home, I was grateful to be able to sleep in my own bed, where exhaustion took over.
Today’s event was a journey to Northampton for my bone scan. I was asked to arrive at 12pm for an injection of radioactive dye. On arrival at the hospital we saw that there were two waiting areas: one for the radioactive people and one for non-radioactive people. I was asked to go into the injection room pretty much at 12pm on the dot. Hubby came in as well but probably began to wish he hadn’t! My pesky veins were at it again. So, one stab in the arm, without success, followed by a stab in the hand, which seemed to do the trick. First an infusion of saline and then the radioactive dye. I noticed that this particular syringe was stored in a rather industrial looking box.
The radiographer explained that this scan was being carried out due to the cancer having gone into at least one of my lymph nodes. She did say it was unlikely that anything would be found in the bones at this stage but that the scan would act as a baseline. As I am now on the hospital’s books, any future aches and pains will be taken seriously, and should another scan be carried out, then they will have something to compare it to.
I was pleased to find that although my scan would be carried out three hours later, I was allowed to leave the hospital and take a walk into town. Off we went, in search of food. Hubby hinted heavily at Pizza Express, even down to making his choice from the menu, but I stood my ground for having something else for a change. Fortunately, the food we ate in Debenhams was very nice, otherwise I would never have heard the end of it!
We then had time to do a little bit of shopping before returning to the radioactive waiting area at the hospital. I was supposed to drink a fair amount to flush the dye through my system, so I spent the next ten minutes drinking water. Soon enough, I was called into Gamma Room 2, where my scan was to take place. Equipment, not dissimilar to the CT scanner from last week, greeted me. This one was called ‘Discovery’.
First things first, removal of some metal objects, so off came the watch and necklace. The button on my jeans was fine, as were the zips on my boots, so no further removals needed. The room was pretty cold with some serious air conditioning going on so I was grateful to remain fully clothed.
I then had to lie down on a rather slimline bed. Just as I was wondering how to place my arms, the radiographer secured them by my sides with a velcro tie. He told me I simply had to lie still and relax. The scanner moved across my head first and came in quite close to my face. It stayed there for some time. I did wonder if perhaps it struggled to locate my brain? Next it moved down the rest of my body, staying in each area for a while, before eventually reaching my feet. I was starting to feel a bit dozy by now and was worried that I might let out a snore. It was all a bit boring to be honest. I thought some music would have been nice to pass the time.
Around half an hour later the scan was complete. The radiographer informed me that the report would be written up and sent to Milton Keynes. That left me with a day’s respite before the next event: operation number two.
Sarah's breast cancer journey 