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.