I didn’t update the blog last week because I had a lot happening with chemotherapy on Monday and then three additional hospital appointments. So I thought that I would update the blog at this point… I have the time to because I had no chemotherapy this week- my first Monday in 9 weeks without it!
I completed cycle three of chemo last Monday and was given the brilliant news that my tumor markers are now 16! My iron was low again which meant that I found myself back on the chemo ward the next day for a blood transfusion. This took four hours but I was as cool as a cucumber about it because I knew what to expect this time round. It was irritating that I started to experience tummy cramps during my transfusion, which makes it uncomfortable to have to sit for as long as you do, but once again I have come to the stage where I know these cramps. Also, they don’t worry me because I know they are a side effect of the chemo.
I also had to stop eating during the transfusion because a few hours later I was due to have my repeat CT scan As 3pm came closer, I started to get more anxious about what would be found on the scan. I could not stop myself from worrying that the chemo would not have done what it needed to, even though my tumor markers were so good. The scan itself was quick but it felt like an eternity. As the machine was doing its job, I found myself panicking and questioning whether ‘Cyril’ was being defeated or not. Once I was out the scanner, I knew it was a waiting game until Friday. However, luckily the appointment was brought forward a day and so on Thursday I got some more good news….I am overjoyed to say that the scan looked great! The cocktail of chemo drugs has successfully taken the lead in the boxing match with ‘Cyril,’ and has now well and truly started to push him out of the ring! The good news meant that I was then given confirmation that my surgery will be on the 24th August. During my appointment, we also reviewed what the operation would involve, my recovery and what to expect during my hospital stay.
On Friday, I was back again at the Marsden to meet the professor in charge of my chemo. This meeting reviewed the three cycles of chemo overall and the plan ahead for my chemo schedule post-surgery. The support provided by my team at the Marsden is amazing. Every appointment feels so well planned and I go into them feeling supported, not only by my family but also my team. They are there at every stage and answer any questions you have. It doesn’t matter how many times you ask a particular question…which is good because I’m known to repeat myself!
With the consent form reviewed and signed, it is now just a waiting game. The last time I had an operation I was three years old, so the idea of having one scares me. I have this fear of waking up during the operation, which I know is not going to be the case but it does still play on my mind. When I am not thinking through that worry, I am trying to imagine how I will react and what I will see when I come round after the operation. I’m worried about seeing the wires, drains and tubes attached to me. I know these are normal worries, and that the thing that helps me calm down is reminding myself that I am in very safe hands. It also helps knowing the outline of the plan and I know that with all of the support from my family, friends and the team I will get the things I need to heal physically, mentally and emotionally.
My siblings refer to me as a ‘tenacious little thing,’ and through my chemo they kept telling me that it was my tenacity that would ensure I came out on top after three cycles of chemo. They have told me that they expect me to wake up ready and raring to get on my feet and make my usual demands such as, “I need my lip balm,” “Tie my hair up” or “Rub my feet”. I can’t see this being true right now but I am sure that they will end up being right!
I think at the moment I’m scared of the unknown like I was before I started the chemo, but I look back on the past nine weeks and it feels strange to think how ‘normal’ it all became as I grew in confidence with what was involved. So at this point in my battle against ‘Cyril’ I see it as having another choice to make. I can focus on 24th August or I can take each day as it comes. I’m trying to do the latter but if I’m honest I’m probably doing a bit of both at the moment, and that’s ok. I have moments where I find myself freaking about the operation and the recovery and others where I can focus more on the day ahead. With the support of Chai Cancer Care, I am going to be learning Mindfulness. The idea of this is to develop skills in focusing on the here and now and being in the present moment. I think this is going to support me ahead of, during and after surgery. It will also equip me with useful breathing exercises to do when I begin my recovery.
When I get worried and anxious I try hard to not go with all the fears in my mind but instead focus what a huge milestone I will have crossed once this operation is over and I begin to recover from it. I also know that there will be moments where this hard to do and that is okay. I know myself and I know that I can get anxious and it becomes hard to get out of that state. This is when the support around me will help the most. I also feel that laughter and humor are essential. For me that is such an important part of my personality. I’ve learnt already that when you face hard things in life, like cancer, I can’t feel sad or be serious about it all the time because laughter is such a big part of who I am.
For example, the other day, my sister and I somehow managed to change my panic into laughter by googling the following questions: “What do surgeons do when they need to go to the toilet?”, “Do surgeons get hungry and eat during surgery?” and “What if the surgeon accidentally drops something in?” I thank Google for the myriad of interesting (and sometimes concerning) replies! My boyfriend also managed to turn my panic into laughter over a Friday night family dinner when I asked, “How will they be opening me up?” He replied with, “Bring me the rest of the roast chicken and I’ll demonstrate!” My friend Laura also calmed me down by sharing her operation stories and the time when she wrote messages to her surgeons on her tummy with eyeliner, which they discovered in theatre!
For those who don’t know, I am primary French teacher. I have had a love of all things French since I was teenager, which is why I ended up studying it at university and eventually teaching French. So, in keeping with my love of French, I wanted to share a quote by Henri Matisse. ‘Il y a des fleurs partout qui veut bien les voir.’ This translates as, ‘There are flowers everywhere for those who want to see them.’ Matisse was highlighting the importance of optimism and having a positive outlook on life. I know that when I face this next week building up to surgery, going into hospital, going into theatre, waking up and then starting recovery, these moments will be scary and I might feel like I want to give up. I’m going to push myself to remember Matisse’s words. I want to remind myself to see the flowers even if they do not seem very visible.
I’ve added a mixture of photos this week from chemo and the things I have done with family and friends to keep me busy and distracted.
This Monday I had my second chemo session of cycle 3 (each cycle is made up of three sessions). Last week, I found out that my tumour markers have dropped from 58 to 31, so I was feeling really positive about having more chemo. Last week, I also met with my consultant surgeon to talk about: how I am doing, the plan for my upcoming surgery and chemotherapy plans following this. It was a really positive meeting and it felt so different from when I last met with him to confirm the diagnosis. This time I felt better emotionally and felt more able to think and talk about what’s to come. It’s a long road ahead, but I just have to take it one step at a time.
I now have to prepare myself for the last session of my current chemotherapy cycle next week and then for surgery in a few weeks’ time. I naturally have my fears about the operation. I worry about being put to sleep, coming round in Intensive Care with lots of tubes, being attached to machines and wires and being in hospital for up to three weeks after. I’m also worried about the pain I will feel after and coping with recovery. One of the biggest things which has started to hit me more now is the consequences of surgery with regards to my future, and not being able to have my own children. It is obviously a really difficult thing to get my head around and something which I know will take time, so I know not to pressure myself to ‘be ok’ with everything at the moment but instead to think one step at a time at the moment.
Eleanor Roosevelt once said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’” This quote makes a lot of sense to me at the moment as my current chemotherapy treatment draws to an end. When I reflect on my last eight sessions of chemo, I can honestly say I have gained in strength, courage and confidence and this is going to help me with coping with the next stage. I know that as I continue on my journey I will keep gaining this strength, courage and confidence to deal with the next chapters.
During my first session of chemo, the nurses suggested a product that you can use which can help with reducing eyebrow and eyelash loss. Hair loss during chemotherapy is dependent on a number of things: the type of drugs you are on, as well as the individual.
So far I’ve had really good results with Lipocils, so I’m going to continue using it. I understand it is difficult to know whether the effectiveness will change over chemo (like with scalp cooling). However, trying these things help me feel proactive and offer a feeing of control, in a situation where lots of things are out of my control.
On Monday 25th July, I started my third cycle of my chemo. This was a big milestone for me because it brings me closer to the doctors repeating the CT scan and finalising an operation date. Whilst the repeat CT scan and the pending operation are scary, the fact that my tumor markers have now come down to 58 brings me hope!
I received my diagnosis on a Thursday and on the Friday I was sitting in front of the professor in charge of my chemotherapy treatment; which was to start on the Monday. There was not much time to get my head around what was happening. I felt relieved that my sister was taking notes during the consultation, because there were moments when I felt like I was present in the room in my body, but not in my mind.
clutching my sister and was very tearful. He immediately said, “Everybody has given you bad news so far, but I am going to give you some good news.” Instead of having the drug that causes hair loss in one big dose every three weeks, he decided he would administer it weekly so I could try the scalp cooling treatment. Even though he was clear that scalp cooling does not always work, this news instantly took a worry away from me. Although it is hard having chemotherapy each week, this pattern has actually worked well for me. I feel comforted by the fact that I see the doctors each week, and having the chemo drugs administered each week gives me clear milestones to tick off.
Scalp cooling can reduce the hair loss caused by chemotherapy drugs. These drugs can cause hair loss because they target all the rapidly dividing cells in the body. Cancer cells are rapidly dividing but there are also healthy rapidly dividing cells in our body, like hair follicles.
Up to this point the scalp cooling has proved effective for me. I have had normal hair loss but nothing has come out from the roots. I fully expect my hair to thin because the nurses explained that this happens. Today, I commence cycle 3 of my chemo. I will continue with my hair regime to give myself the best possible chance of the cap working. If it continues to work, I will be really relieved and happy. I feel like whilst a lot of things are out of my control, using this cap has given me the chance to take control of, what is in the grand scheme of things, a small thing. In the back of my mind, I know that the effectiveness of the cap might change, but I feel more at ease with this now. This is partly due to a lady I met on the chemo ward. When I went for my second session, the lady sitting next to me was having her first session. My family and myself got chatting with her. She was bright, bubbly and kind. We spoke about the treatment we were both having. She is not having the scalp cooling for her hair, and when she said to me that she was going to embrace any hair loss and “rock the look,”she made a very big impact on me. I realised that if it happens to me I have the strength to do exactly what she said. I feel like I was meant to sit next to this lady on that particular day because sometimes it is the words of somebody that you do not know that make a mark on you.
I had another good week before having chemo session 6 yesterday, which marked the end of the second cycle. I also felt the effects of my blood transfusion from last week. I had more colour in my face, I was a lot less sleepy and I was able to walk more without getting breathless. Last week, I also found out that my tumour markers dropped again to 151! The doctors are really happy with this and getting these results weekly gives me a great boost!
he level next week, I may start supplements for that too.
My lovely specialist nurse Jane came to see me during my session yesterday too. The moment I saw her walk through the door she made me smile. She is so comforting and I feel so lucky to have her by my side throughout this journey. We spoke briefly about what will happen at the end of cycle 3. I’ll have another CT scan and then meet my surgeon to talk about the plans for surgery. It’s good to have an idea of what’s coming up because it means I have small goals to be working towards.
So this past week has gone quite well for me. I had one day where I was sick but it passed quickly this time and I did not have to visit A&E! I also got an updated tumour marker result… In three weeks, my markers have gone from 3052 to 375! This news gave me such a boost and the doctors are really happy with the result.
I once again urge you to talk with your family about your family history of breast and ovarian cancer. If you feel you have a history of these cancers, go to your GP and get the ball rolling for genetic testing. Please refer back the article about on Spreading BRCA awareness for information about gene testing. Remember that knowledge is power, so if you find out that you carry the gene mutation you can make choices that are right for you. Once I knew that I carried the BRCA 1 gene mutation I made the choices of getting my breasts and ovaries checked which has helped me with ‘Cyril’ because my doctors know that it was not there seven months ago when I last had a pelvic scan and a CA125 blood test. 
Finding Cyril 