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.