Demystifying chemotherapy

Pats and I attended a session called ‘Demystifying Chemo’, which was run by two senior chemotherapy nurses, and was held in the Macmillan centre at the hospital. As we’d been away on holiday it felt like ages since we had been to the hospital – such a nice feeling!

The workshop was scheduled to be a 3-hour session. Each person had a partner with them and we were asked to complete an initial questionnaire around what our preconceptions of chemotherapy and some of the side effects were. The nurses then went through the questionnaire and talked around each subject. I think everyone had different ideas and thoughts around differing areas and it was a really useful session. 

They also told us about the phone app called Cancer Emergency Response Tool (CERT) which is downloadable for free from the App Store. It allows patients to rapidly manage symptoms that need urgent hospital assessment and we were asked to input the hospital’s 24-hour emergency number which would be dialled from the app should it be needed.

We were all provided with a free A5 Macmillan chemotherapy organiser folder which held various sections relating to our treatment and pages to store important information and contact numbers. If we were planning to travel a distance they said it would be advisable to take the folder with us so that in the case of an emergency, any other hospital or medical establishment could see exactly what treatment we were having.

They recommended that we keep a record of how we were feeling throughout each of our treatments, recording our mood, levels of fatigue, what food we ate and medication etc. There was also a notes sections to record any questions, concerns or effects we wanted to talk to the chemotherapy nurse or our oncologist about. She also recommended that each time we come in for treatment to ask for a copy of the letter they send on to our GP to keep in the diary. When coming in to have our chemo, we should also ask the nurse to write down what treatment we’ve had and what our blood results are in the book.

The nurses said there would be days when we don’t feel amazing – the ‘sofa days’ they called them, but they recommended writing down one thing in our diaries at the end of each day that made us smile.

The nurses went through absolutely everything with us, explaining what chemotherapy does, how it affects the immune system and why they measure red and white blood cells and platelets (red cells carry oxygen, white cells are for the immune system and platelets are to do with clotting). The first day of our treatment is classed as day 1 and the cycle runs through to day 21. From day 1 to 7 our immune system will be at its lowest, slowly increasing from day 7 to day 14 and by day 21 it should be nearly back to normal.

They recommended that we invest in a digital thermometer. A normal body temperature is 37C and anything that is between 36-37C is normal and okay. If it’s around 35C or 38C that’s when we’d need to take action. I asked if we should take our temperature every day which they said no to – only if we were feeling unwell or had symptoms. I could see myself getting a little neurotic about doing that so was pleased they’d said not to!

They then went through a whole variety of potential signs and symptoms of an infection and how vigilant we must be in terms of spotting one – the side effects of chemo can be very similar to symptoms of an infection. No word of a lie, it really does put the fright into you when they say how quickly an infection can develop. You must not sit up throughout the night and wait until the morning if you have a temperature and you must call them straight away if you have symptoms. But they did re-iterate that it’s common sense, e.g. flu doesn’t come on instantly, it develops gradually with a few different symptoms. Following this part of the workshop, we could easily see that infection is likely to be a combination of symptoms rather than just one.

With regards to infections, they advised us to not come into contact with or to allow people to visit our homes who had been unwell, were feeling unwell, have a temperate or a bug or who have been in contact with ill people. I’ve since heard a tip of having an antibacterial hand wash at your front door and asking guests to use it upon entering your house!

We were also told not to have any live vaccinations or to have any for 6 months following treatment. We were also advised to get a flu vaccination.

The nurses talked about food and nutrition and said we should basically follow the diet of a pregnant lady. No pate, no unpasteurised soft cheeses, no raw or uncooked meats and no shellfish or undercooked eggs. We should wash all fruit and vegetables thoroughly (even bagged salad) and ensure that everything is well cooked. Don’t risk eating things that are past their sell by date.

My darling hubby was the first to ask if we were allowed to drink alcohol whilst having treatment (which all raised a laugh!). The nurse said she had meant to bring this up herself but had forgotten and said that yes we could have a drink, not to go mad obviously, but if we wanted to have a drink we could towards the end of the cycle and not to have any at all the night before our treatment either. She said takeaways were also allowed!

Chemotherapy works by attacking fast dividing cells – cells that are in the process of splitting into two new cells. Cancerous cells keep on dividing until there is a mass of cells. This mass of cells becomes a lump – a tumour. Because cancer cells divide much more often than most normal cells, they are more likely to be killed by chemotherapy.

The way chemotherapy drugs act by killing dividing cells also explains why chemotherapy causes side effects. It affects healthy body tissues where the cells are constantly growing and dividing. The skin, bone marrow, hair follicles and lining of the digestive system (gut) are examples of cells that are constantly growing and dividing. Your hair is always growing, your bone marrow is constantly producing blood cells and the cells of your skin and the lining of your mouth and digestive system are constantly renewing themselves. We learnt that the lining of our mouths is renewed every 3 days! You obviously don’t notice this as new cells regrow and we swallow the dead ones.

The nurses suggested we buy a soft toothbrush and use a salt water mix to rinse the mouth out after eating. They specifically said not to use Corsidol mouth wash either.

They then talked about hair loss and skin changes. The hospital give you £120 towards a wig through their own supplier. You can’t have your hair treated with colour or a perm due to the chemicals. If hair loss was a side effect of the chemo we were having we can use henna or organic hair colour when it starts to grow back.

This useful infographic shows the detailed effects of chemotherapy on the body in an interactive format.

Finally at the end of the session we were shown around the day unit where we would be having our treatment. Hand sanitisers are everywhere in the hospital, but more prevalent here due to patients’ immune systems being compromised. Even the door handle into the ward has a sanitiser that dispenses gel upon gripping it. 

It was here that I ended up getting really upset. I saw a lady with a head scarf on who was wheeling the trolley she was connected up to that was full of her chemo drugs off to the loo with her – another kick of reality. That is actually going to be me in a few weeks’ time I thought. Another lady got upset too and whilst we shed a little tear, clinging to our husbands, the nurse who was with us was so lovely and supportive. Even another patient who was having treatment at that time came up to me and reassuringly put her hand on my arm. She said that seeing it here like this is the worst part, that when you’re actually having it it’s all okay.

We were there for over 4 hours in the end and although there was so much to take in, we were so pleased we’d had the opportunity to attend. I think the nurse said they were the first hospital to run these sessions, and statistics show that those who have attended are far less likely to call the emergency number as they are better educated as to the effects and symptoms of their treatment. I don’t know if these sessions are being run nationally but if you are about to undergo treatment I would thoroughly recommend attending one.

My Mum and Dad had very kindly sorted an issue I’d had with my car after it had been fixed in the garage, and after we had collected it from them, Pats and I drove back home separately. Pats’ parents were due round for dinner that evening and I have to admit I did shed a few tears in the car on the way home – they needed to come out after taking all that in!

Chemotherapy and scalp cooling – to cap or not to cap: that is the question

My first chemotherapy cycle is due to start in a few weeks’ time and I still can’t decide whether to try the cold cap to try and prevent losing my hair.  The prospect of any woman losing her hair is certainly very frightening – another giant signpost of this dastardly disease.

I have been in touch with some lovely ladies who have tried the cap and it has been successful for them and with those who decided not to.

I had reservations before I met my oncologist as to the safety of using a cold cap as I’d heard that by using it the scalp wouldn’t be protected if the cancer cells were to spread to this area (metastasis). Metastatic breast cancer is cancer that has spread from the breast to another part of the body or has come back in another distant location.

I raised my concerns with my oncologist and he said they simply wouldn’t recommend using the cold cap if it would cause the patient any harm.  He handed me some printed information from Macmillan on scalp cooling to read. In it there is a section titled “Concerns about scalp cooling” where it says:

“Some doctors worry about using scalp cooling with treatment that aims to cure the cancer. They are concerned that cancer cells that may have spread to the scalp may be more likely to survive chemotherapy if scalp cooling is used. However, cancer spreading to the scalp is very uncommon. Clinical trials have shown that the risk of this occurring as a result of scalp cooling is very small, except in haematological cancers. Some people may prefer not to have scalp cooling because of this, but others are happy to try it.”

He put me down to try it. Whilst chatting to my breast care nurse I also voiced my concerns again, and she echoed the same sentiment of my oncologist, they wouldn’t recommend or use it if it were to put the patient at risk.

I’d also been in touch with another lady who is currently undergoing chemotherapy and who has successfully used the cold cap. Now on her fourth cycle of treatment she has kept her hair and is pleased with the result.

I really don’t want to lose my hair. I think that’s a given for any women diagnosed with cancer. I have shoulder length hair and if I have more than an inch cut off at the hairdressers I feel like I’ve been scalped. I hate to wear my hair up, I feel exposed, and it’s nice to “hide” behind if that makes sense. However for the sake of keeping my hair, that will ultimately grow back, do I take this very minuscule risk?! Of course, the cold cap doesn’t work for everyone, so I may end up losing my hair anyway.

I decided to call the breast cancer care helpline (0808 800 6000) to ask what their thoughts were. The lady explained that evidence suggests that it is safe for people with breast cancer to use and that the risk is only for people who have a haematological cancer such as leukaemia. She also pointed me to an article that ASCO (the American Society of Clinical Oncology) had recently published in which she said that this risk was understood to be the case 30 years ago, however they understand the biology of cancer far better today.

The article reads: “We understand a lot more about the biology of cancer and metastatic disease now; it turns out that the risk of metastases to the scalp is extremely low, and as a first event for advanced disease, it is even lower. Mostly, scalp metatases are seen after people have already had metastases to other places in the body, and in total, only about 1.2% of all metastases are found in the scalp.

Scalp metastasis would have to be the first site of metastatic disease to postulate that is has anything to do with scalp cooling, and that is very uncommon in the studies that are available. I’ve reviewed over 4,000 patients reported in clinical trials, and it is just exceedingly rare and doesn’t seem to be any higher in risk, from what we can tell, in patients who are using the cold cap.”

The lady on the helpline said it really was down to personal choice. I need to do what is best for me, what sits most comfortably in my mind and will give me the least amount of worry.

More choices, and more difficult decisions. I’m a natural born worrier and not the most of decisive of people let’s say! I have a few more weeks yet to decide. I’m just wondering if anyone else has been in this quandary and what helped you to decide?

Surgery results

The appointment to find out the results of the lumpectomy was scheduled for two weeks after the surgery. I’d psyched myself up massively for the appointment, but rather frustratingly on the morning of the day of the appointment, I received a call from the breast care nurse to say there had been a delay with my results. I’d need to go back the following week instead – ahhh more waiting! I know it wasn’t the nurses fault, but there really is nothing worse than waiting for results, as you feel stuck in complete limbo.

When the Thursday of the following week came round, strangely enough I felt completely different to how I had the previous week. I had been reading a book called Get Some Headspace by Andi Puddicombe, and I don’t know if it was as a result of trying to observe my worrying thoughts as opposed to getting caught up in them and getting swept away by them, but I seemed to feel much calmer.

After a long wait we were called in to see the doctor. He carried out a quick inspection of the scar and said I was healing nicely. As we sat down together he then started off by telling us that “the results were mixed.” Ok here we go I thought to myself, thinking back to the last time I’d been sat opposite him when he told me about the ‘incidental findings’ they’d found.

He reiterated the fact that the lymph nodes they’d tested were all clear and how positive that was. He then said that rather than being the predicted 1cm in size, the tumour was actually 2.4cm and a stage 2 cancer. Shit I thought to myself and grabbed Pats’ hand tightly.

He then explained about the clear margins that they look to achieve around each side of the tumour. Basically the surgeon’s goal is to take out all of the breast cancer along with a rim of normal tissue around it. This is to be sure that all of the cancer has been removed. The pathologist then examines this rim of tissue, the surgical margin, to be sure it’s clear of any cancer cells. The doctor said that whilst three of the sides were clear, one didn’t have a clear enough margin so they would need to do a re-excision and take a bit more out.

positive_negative margins

He also then went on to say that the cancer I have is HER2 positive. About 20-25% of breast cancers have an increase in the number of copies of a gene called the human epidermal growth factor receptor 2 (HER2), called a HER2-positive cancer. The gene makes a protein that is found on the cancer cell which stimulates them to grow; these types of cancers usually grow more quickly. Because of this I would need to have chemotherapy along with a drug called Herceptin.

HER2

Chemotherapy? Did he really just say that? The word reverberated around my head. Freakily enough, I’d actually had a dream the very night before in which a doctor had told me that I’d need chemo. In my dream I had broken down into tears wailing “What about my hair?” Maybe subconsciously I knew they were going to tell me this, I don’t know, but I wasn’t the same soggy mess I had been when I’d sat in front of him a month ago.

I asked a couple of questions in quite a matter of fact way – I guess it felt like it wasn’t happening to me. All along they’d been positive about it but hadn’t been able to completely rule out chemo. I was due to go in to have my eggs harvested the following day and had been cutting out drinking alcohol but after leaving the hospital I really needed just one glass of wine to try and make this news a little more palatable!

I called my dear Mum and told her the results. She was clearly devastated. ‘My poor poppet’, she said. ‘I’ll be fine Mum,’ I said trying to reassure her. ‘It is what it is, I’ve just got to get on with it..I might need to get myself a nice wig though,’ I said jokingly. After chatting about it all for a bit she finally said ‘Think of the money you’ll save from not getting your hair done,’ putting a humorous slant on it. This made me feel better, I needed to look for positives and to try and laugh about it to take the edge off it all I guess.

I then called my sister and had a similar conversation with her. “Don’t worry, I’ll be ok – it’s just going to take a bit longer than we thought”, I said. Having never been on the receiving end of someone I love telling me such news, I really don’t know how I would respond, but I felt like I needed to hold other people up and make them feel better about it.

I felt surprisingly okay about it all on that day, perhaps it just hadn’t sunk in yet. I just kept telling myself that I’m a strong and positive person and I’ll get through this.

I then spoke to friends when I got home, all of whom asked me various questions that hadn’t even registered when I was with the doctor. I hadn’t followed up by asking him directly what my prognosis was, it simply didn’t occur to me at the time. I hadn’t even asked when the chemo would start.