A general update 20.09.2018

I’m currently sat having my 13th round of chemotherapy at the Brodey Centre in Banbury. I keep putting the next blog post off and off as I’m struggling to revisit the time I had my first operation to remove the tumour. I’ve wanted to post in order of events but trust me, that’s a lot of posts and what with chemo brain, yes that really is a thing, it’s been something i can’t bring myself to do at this moment in time. I’ve had a lot of people ask me if I’m still blogging and I have had such a good response that I’ve decided to write this one today to give you all a general update of what’s been happening over the last couple of months….good and bad.

Where do i start….after my first operation back at the beginning of March, Carl, Sienna and I stayed at my parents while I recovered as it was just generally easier with Mum on hand to help with me and Sienna. What was meant to be a weeks stay at the most ended up being nearly two weeks. I didn’t feel physically or mentally ready to go home after a week. I felt safe at my parents with all my family around me and knowing I couldn’t be the housewife/mum i was used to being while I recovered I was in the best place. I don’t know what I would do without my family, or my friends for that matter. I have the most amazing support network, along with my medical team who I trust 100%. Everything just works, I am lucky to have each and every one of them.

The recovery took about 2 weeks before I was able to start doing a few things on my own again. Things I took for granted like being able to shower, get dressed, brush my hair and just give my daughter a cuddle. The little things which I missed the most. I was left with some cording from having 2 of my lymph nodes removed, this really got to me. I felt like I had a bungee strap from the top of my armpit to my elbow, it was very restricting and uncomfortable at times. I did my exercises religiously, 4 times a day and really pushed myself but it just seemed to be getting worse. All of a sudden around 9 weeks post op it was almost gone and I couldn’t be more pleased to have full movement of my left arm back.

Another gripe of mine was the fact I had to inject myself everyday with Fragmin to keep my blood thin. Due to surgery I was at risk of getting a blood clot, if I wasn’t pregnant I would have only needed to do these injections for 14 days. Unlucky for me I needed to stay on them for the duration of my pregnancy and a further 6 weeks after giving birth. Between myself, Mum and Carl we made sure I had the injections everyday. They are known as the bee sting injection, and they lived up to their word! I finished these injections 2 weeks ago, its such a relief not to have them anymore.

I had my 2 week post op on Friday 23rd March. My parents came along with me and I was told there was good and bad news! Bad news? I didn’t want bad news! My surgeon started with the good news and told me that the cancer hadn’t spread to my lymph nodes, he removed 2 in the operation and they were clear. I said that’s good, his response was, ‘It’s not good Danielle, that’s brilliant’. Then the bad news, he told me that I needed further surgery in 2 weeks time. He only managed to get a 1mm clear margin around the tumour and he needed to take 2mm, that 1mm of extra clear margin could make all the difference. I was gutted to hear I had to go back in and have another operation. I was recovering so well from the first one but it needed to be done and I trusted him 100%. He booked me in there and then for my 2nd operation on Monday 9th April. Followed by more good news, we could all still go on holiday!!!!!

We had booked a family holiday to Lanzarote at the beginning of January. Not somewhere we have been before but we wanted to go somewhere not too far and with good weather before the baby came. My sister was also pregnant and due 2 weeks before me so we all wanted a week away with the girls before another 2 babies came along. Sienna had been so excited about going on holiday that the thought of not going due to my diagnosis and treatment broke my heart. My surgeon told me it was always his plan to let me go on holiday but he kept that to himself.

Monday 9th April soon arrived. Back to the Churchill we go. I was first on the list to be operated on but my anxiety levels were off the scale. I was so much worse this time than the first operation as I knew what I was expecting. All formalities were covered and the midwife came to listen into the baby before I went into theatre. Hearing the heart beat was reassuring and comforting. I was only in theatre for an hour and a half. I cried when I came around this time, it was just all too much. In 5 weeks I had been diagnosed with cancer and undergone 2 operations while pregnant. I don’t even think I had time to let it all sink in. I was up and dressed a few hours later and on the way home. We stayed at my parents for a couple of days but I recovered a lot better 2nd time round as the operation wasn’t as invasive.

On Monday 23rd April 2018 I had my 2nd op post op appointment at the Churchill, Oxford. Carl came with me as he had the day off work from running the London Marathon the day before. I am beyond proud of him for completing it but was upset I couldn’t go and support him in person. While we were waiting I said to him if my surgeon pulled a certain face I knew it wasn’t going to be good news. We got called in and spoke about the marathon and how I was recovering. He told me the 2nd operation was successful, enough good margin was taken and no further disease was found. Amazing news, but then he looked at me, paused, and pulled that dreaded facial expression, one I’ve seen twice before. He hit me with, your genetics test has come back positive. You have BRCA2. I was distraught, my head in my hands saying, no, no. I couldn’t believe what I was hearing. More bad news. BRCA2 is a gene mutation. Something I would have been born with. There is a 50% chance I can also pass the gene onto my children, the thought of this breaks my heart. It’s a gene which makes your risk of getting breast or ovarian cancer a lot higher. A 60-80% chance of getting breast cancer and a 20-40% chance of getting ovarian cancer. Males can also carry the gene with a higher risk of getting breast or prostate cancer. 

This now answers why I got breast cancer at the age of 33 and it allowed my surgeon and oncologist to make a plan moving forward to treat me for cancer along with having the BRCA2 gene. How did I break this news to my family?! Another knock back for us all. How much more could we take! 

We went on holiday the day after my appointment. It was amazing to get away for a week and spend some quality family time together. But all I could think about was having the BRCA2 gene. I googled the hell out of it, read forums and just couldn’t switch off. I never thought I had the gene, there is no family history and I was told all along it would be highly unlikely I was a gene carrier. I will need further surgery to prevent a new cancer which will take place at the end of this year. 

The day before we were due to come home from Lanzarote I had a phone call from a nurse at the Brodey Centre to book my pre admission appointment for chemotherapy on Thursday 3rd May. Through this whole journey chemotherapy has been my biggest dread. I had seen and cared for my first husband while he went through chemotherapy and the side effects were just awful and heartbreaking to see. The thought of chemo had took a step back when I got told I had BRCA2 but reality soon hit as I received that phone call. We had only been back off holiday for 2 days and the time had come for me to go to my pre admission appointment. It was all very emotional, for me and my mum. The surroundings alone were a lot to deal with. It all became very real and I was going into the unknown.

I had my first round of chemotherapy, FEC75, through a cannula then a picc line was fitted in time for my second round. I had a total of 3 rounds of FEC75. If I wasn’t pregnant I would have had FEC100. Because I was having FEC75 I had a good chance of keeping my hair if I used the Paxman scalp cooler. I decided to try it and see how I got on. Having -5 on your head for hours during treatment wasn’t easy but it was working so I continued. After my third round of FEC I had a 5 week break to have my baby before starting a new regime of weekly chemotherapy.

On Friday 6th July I was booked in for an induction at the John Radcliffe. Mum, Carl and I arrived for 9am and things started kicking off around 11am. Contractions were mild and every 10 minutes. A few hours passed, still going along the same. At 5pm the midwife broke my waters and she said to me, you will have this baby by 9pm. Things hit a whole new level by 6.30pm, contractions were thick and fast but I still didn’t feel anywhere ready to start pushing. An hour later, there it was, my baby was ready to make an appearance. It felt like the longest 10 minutes of my life, I’m not sure if that was the pain or the fact I had sucked 3/4 of the gas and air canister!

At 8.44pm our beautiful baby boy Jake entered the world, it was so emotional. I finally got to hold my miracle baby in my arms. We stared into each other’s eyes, my heart was bursting with love. I loved him so much already, we had been through so much together, he was my comfort with me through every hospital appointment, scan, operation, chemo session. We found out we were having a boy when I was 24 weeks pregnant. We hadn’t planned on finding out but since the diagnosis I wanted to know what sex the baby was as everything else in my life was uncertain and in the hands of the medical profession. We kept this secret so for other family and friends it was still a surprise.

13 days after giving birth I was back in the chemo chair starting a new chemo regime. Weekly chemo for 12 weeks which consisted of Carboplatin every 3 weeks and weekly Pacliataxol. The thought of this filled me with dread, weekly chemo with a new born and a toddler. How the hell was I going to cope physically and emotionally? This also meant I had to wear the scalp cooler every week!

Chemo is going as well as it can, cycle 4 started today, 20th September, with just 2 weeks left now. My last chemo session is Thursday 4th October and I really can’t wait for that day to arrive. My Picc Line was also removed today. I have been having a few problems in my chest, neck and shoulder so decided to have the line out to see if that eases things. It’s been in for nearly 5 months and feels so good to have it out, even if I was traumatised while having it pulled out! I will have the last 2 chemo sessions through a cannula. I still have a long road ahead of me with further operations and radiotherapy in the new year but the light at the end of the tunnel is starting to appear. I have been through so much already, I tend to forget how far I have come over the last 6 months. My family and friends are very good at reminding me of this and how amazing I have coped with it all. Along with all the medical staff. I saw my surgeon the other day and he looks at me in amazement every time I see him. Today he looked at me and said, ‘Danielle, we all look at you in admiration, you really are doing brilliantly’. My eyes welled up, with happy tears I suppose, to hear that from him really did mean something. Sometimes I’m too busy going through all the motions, appointments, side effects from chemo, running around after a toddler and new born with all the normal day to day things in between that I don’t often reflect on how far I’ve come, I’m too busy thinking about what else is to come.

Danielle x

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