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!