Radiotherapy

The day I ended up in Chichester A&E!

It’s always sunny in Bognor Regis 😉

Our lovely break at Center Parcs

It’s been quite a while between blogs, I find I really need to be in the right head space to be able to do them. I was also pretty worn down from my last couple of rounds of chemo if I am being honest, I was physically and mentally battered! But I wanted to finish this blog with my final stage of treatment and that’s what I am going to do so here it goes..

Not long before I finished chemo I met with my oncologist Dr Ring at one of our regular sessions together and we discussed the next stage of my treatment,radiotherapy. Now this I wasn’t anxious about at all, perhaps I was feeling stronger having already gone through chemo and surgery but there was also the fact that radiotherapy was the last stage of the big trio, I was almost excited to get to this part! I had also been told by a few people how Radiotherapy would be a walk in the park compared to surgery and chemo however there was one thing that was bothering me and that was WHEN I would be having the treatment. As I have mentioned before my brother was getting married in May in Las Vegas and I was determined to get there for his big day. Going by different things I had read or heard the break between chemotherapy ending and radiotherapy starting could be anything between 2 and 7 weeks depending on the hospital policy and how fit you were post chemo, ie. whether your body needed a longer recovery period. Radiotherapy was going to be for 3 weeks straight, there would be no break in between treatments so I could not go away once it had started until I was finished…..and by my calculations if I had a 7 week break then I wouldn’t be going to Vegas. There was also still the odd chance that one of my final chemo treatments could make me ill and set the time scale even more off course for starting this stage. Dr Ring was aware of my planned trip and had always vowed to do everything he could to get me there however the radiotherapy side of things was not his remit so he was unsure how long the break would be as it depended on the circumstances of each patient and the opinion of the radiologist treating them, so to put my mind at rest about it all he set up an appointment with the radiologist I would be under named Dr Kirby so we could discuss potential dates and I would have a clearer idea on whether or not they would work in my favour.

I met with Dr Kirby a week or 2 later and prepared myself for bad news (after all I was well used to that). I knew I had to go with whatever she recommended as my health and treatment plan would have to come first but I prayed that she would recommend a shorter break and hoped that as my body had seemed to tolerate chemo relatively well that this would bode well for me. Nick came with me and Karen my cancer nurse came to sit in with us too. Dr Kirby sat down and explained the type of treatment I would need, as the cancer had spread to a number of my lymph nodes they needed to really target not just the breast but all the surrounding node areas in my upper chest and lower neck area as well as under my arm. It was explained that although the treatment would be far less harsh than chemo I would still likely suffer with extreme fatigue about 2 weeks after finishing radiotherapy but that this would wear off eventually as long as I rested and listened to my body, slowing down when I needed too. I could also suffer with blistering and sore patches on the targeted skin areas. Then Dr Kirby delivered the crunch news….she was happy for me to start radiotherapy 2 weeks after chemo finishing as long as I tolerated the last 2 rounds as well as I had the previous ones. I was over the moon, it meant I would finish chemo on 3rd April and start radiotherapy 13 days later on 16th, finishing on Friday 4th May so giving me 3 weeks to rest and recuperate and get as fit as I possibly could for Vegas. The only drawback would be that I could not start on the drugs I was due to straight after chemo finishing called Tamoxifen as Dr Ring thought the side effects (one of which being a higher risk of blood clots on long flights) would not be tolerable for me until I got back so we agreed that I would delay starting on the tablets until I got home. Nick and I walked out of the hospital and I cried my eyes out, everyone in my family had been getting so excited about the wedding and trip to Vegas and I desperately wanted to feel the same but I knew I couldn’t until I had it confirmed I could go. Having already started my new chemo drug by this point I knew I was tolerating it ok (despite all the aches and pains and fatigue!) so I felt confident that I would get through the next 2 rounds in tact. Finally we had some good news!

Around the same time as this I also had what is called a BRACA1 and 2 gene test. This is a test to determine whether I carried a faulty gene that would have given me a very high chance of developing both ovarian and breast cancer. Although I didn’t fit the mould for this gene as my type of breast cancer wasn’t the normal type associated with it my age became the determining factor in having the test and I was glad as I desperately wanted to know if I had the gene because if I did then there was a strong chance my sister Hayley would have it too and of course Sienna. Those who find out they have the gene pre cancer diagnosis can opt to have their breasts and ovaries removed (such as the high profile case of Angelina Jolie) and if I found out I had it even after diagnosis I could opt to have my ‘good’ breast removed as well as my ovaries to prevent what can be as high as an 80 percent chance of reoccurrence.  The results took a few weeks but finally I got a letter in the post that confirmed I did not carry the gene, I was delighted as it meant no further surgery for me and of course that Sienna and Hayley were in the clear. It did however mean that my cancer had just been due to the shittiest of luck rather than genetics but I preferred that than having my sister and beautiful girl affected.

My last chemo fell at the start of the Easter school holidays. I felt sad as I knew it would wipe me out for a good few days and that would basically mean I wouldn’t see the kids for the first half of the holidays so as a treat for the 2nd week we booked a little break at a caravan park in Bognor with my sister Hayley, my mum Karen and our friend Jacquie and all the kids (6 in total!). I had felt quite down the first week of the holidays, seeing and hearing of other kids and mums day trips out, I just wanted to be a normal parent and to be able to take my kids out too, enjoy some time with them but instead they were with my mum or mother in law Belinda who kindly looked after them for me whilst I had to sit on the sofa feeling like an 80 year old woman with all my aches and pains. I felt thoroughly miserable and depressed. Everyone told me to make the most of the rest but I just wanted to be with my children, I hated it and I felt like a useless mum.

The following Monday we set off for Bognor (I couldn’t go any further afield as I had to be within a close distance to the Marsden as it was so soon after my last treatment), the weather was miserable and we had a few teething problems at the site with our caravan but I didn’t care, I was just so happy to be away from the confines of the Marsden for a few days. It was the first week that year that I was hospital free with no appointments and I wanted to enjoy it and make the most of the time off before starting the next round and being back at the hospital every day. We enjoyed days out at Littlehampton and Butlins and the kids seemed to be loving it but 2 days in by the Wednesday afternoon I started to feel unwell. We had been going to the little clubhouse on site in the evenings for a few hours for the kids entertainment but as I felt rough with bad stomach pains my mum took my kids along with the others whilst I stayed at the van and tried to rest. By the time mum came back I was feeling slightly better but when we went to bed shortly afterwards the pain got worse, I kept getting up to either take my temperature (a key thing during chemo as if its raised you must go straight to A&E as it is a sign of infection) or take painkillers. After a while of me shuffling about my mum (who I don’t think had ever gone to sleep) got up and checked on me as she was worried. We phoned the Marsden hotline, a number given to me at the start of treatment for if I ever felt unwell, and we both spoke with the nurse who answered the call describing my symptoms. By this time I was in a lot of pain and could barely speak so the nurse advised that if the strong painkillers that I had taken around 20 minutes earlier didn’t kick in soon then we needed to get to our nearest A&E and quickly.

Mum didn’t wait for long, she called an ambulance almost as soon as she got off the phone because it was becoming quite clear at this point that I was getting worse rather than better. It was about midnight so mum had to call Hayley who was in a van a few doors down with Jacquie and get her to come to our van to watch the kids whilst we were carted off to Chichester A&E. Once there I was treated as a priority and put in an isolated ward. I was told that because I had chemo only the week before that they had to treat me for Neutropenic Sepsis. This is a bacterial infection that can be a life threatening complication of chemo treatment. They didn’t know I had it but because the window of time is so short to treat such an illness if it is there they had to treat me as though I did and then start to run tests after the treatment to see what exactly was wrong. So before I knew it after having celebrated my last ever cannula being taken out just one short week ago here was another one being stuck in to my already terribly weakened veins to get the antibiotics in to my body ASAP. During this time I was sick and almost immediately after vomiting I started to feel a little better. I had all the subsequent blood and urine tests done as well as an X ray on my chest but in the end everything came back clear and the Doctor treating me advised there was no infection, instead I had likely suffered a late reaction to my last chemo…thank god for that! I could go back to the caravan but had to rest so we arrived back at about 6am and I went back to the bed I was sharing with Olly who woke up 2 hours later none the wiser that I had ever left his side that night. I debated going back home the next day but in the end as I felt so much better we decided to retrieve what was left of our little break away and enjoy the last night so we did! We arrived back home on the Friday, had a quiet weekend and then on Monday it was stage 3 time!

A few weeks prior to radio starting I had what is called a planning scan where they scan and then mark the area for treating, with tattoos. I had these little ink dots tattooed around me, no bigger than a freckle so not noticeable as such but they will be there permanently as another little battle scar to add to my cancer collection!

My first day of radiotherapy arrived, I went on my own as I felt quite confident that I didn’t need anybody with me and I met with a radiologist who explained what was going to happen for the next 15 days. Each day I had to get dressed in to my sexy surgical gown and then I was brought in to a room with a bed surrounded by large machinery above and around it.  I lay on the bed, raised my arms above my head, made chit chat with the team whilst they drew all over my boob, then I was shuffled around until I was in the exact position I needed to be in for the laser to go over me (it’s all very precise, there is a lot of shuffling and measuring!). Then the radiologists would leave the room and a large beeping noise began for about 5/10 minutes whilst the machine moved around me. The first day it didn’t feel like anything was happening, I was convinced I would see the machine doing more, maybe it’s broken or they haven’t switched it on I thought….but it soon became apparent that these incredibly skilled professionals had of course switched the machine on, it just wasn’t as dramatic as I thought it was going to be!!

I got in to a routine quite quickly, I would drop the kids to school and go straight to the Marsden where I had the radio done at 9:30am and more often that not I was out within 30 minutes. There were a few days when it took longer, normally when I had students who were training in the room and the radiologists needed to explain a lot to them, there were also times when they had thought I was in the right position but it turned out I wasn’t so they had to come back in and start shuffling me around again. I didn’t mind this as of course you want the treatment to be as precise and therefore effective as possible but staying still with your arms raised so high above your head and not being able to move at all can get a bit uncomfortable when you have been like that for more than 20 minutes!

The 3 weeks went relatively quickly and I finished radiotherapy just in time for the long bank holiday weekend. It was so strange to reach that day, rads number 15 of 15 and my last day of main treatment, something I could only dream about a few months back. It’s so hard to explain what this day meant to me, I felt an extreme range of emotions going from elation and excitement that it was almost over to being terrified that my treatment was stopping, what would I do now? I had become almost institutionalised in my world of treatment and care.

An amazing charity called the Willow Foundation who support young families under 40 affected by cancer arranged for Nick, the kids and I to go to Center Parcs for the weekend, all fully paid for, so we picked the kids up early from school and explained we were off to celebrate the end of mummy’s ‘nasty medicine’. We had such a lovely weeked away the 4 of us, the sun was shining and suddenly everything felt good again, it was just the tonic I needed and of course I got to spend some quality time with my amazing little family.

So as much as I wish that was my happy ending and I would never have to think about cancer again of course it isn’t quite like that, I still have to go to the Marsden every 3 weeks for my Herceptin injections until February and I have regular heart monitoring because of that drug as well as many other check ups (I have 3 appointments there this week alone). I will be seeing my oncologist every couple of months to review the tablets I will be on post treatment which will keep me in the menopause and push me through it with some very unpleasant side effects, I will have mammograms at least once a year as well as full body scans every 6 months to check if the cancer has returned. In fact my first post treatment scan is the day after I am back from Vegas and this will determine whether I am in remission, although they don’t call it that anymore, it is now simply called NED (no evidence of disease). So this is more the beginning of the end if that makes sense. I am hoping and praying for a clear scan on 4th June, I want my life back. It will never be the same as it was before, how could it be when you go through something as huge as this but it will be taking a big step forward and finally I can dare to think about the future. For the past 7 months other than my Vegas goal I have barely looked further ahead than the next few days, my next appointment, scan, treatment, results, its been a constant loop. I feel scared of having the safety net pulled from under me. Having so many treatments I knew were doing me good and blasting the cancer cells has been my comfort blanket, it was hard to go through but it was killing what was trying to kill me! What happens now that the treatment stops? Part of me feels that it is inevitable that the cancer will come back one day, the stage 3 diagnosis meant my risk of re-occurance went up considerably from 1 in 20 at stage 2 to just under 1 in 4 at stage 3, its hard to see past that sometimes and I have found that weirdly it helps me to assume it will come back and just live my life as best I can until then. Preparing for the worst means anything else can only be better.  I have to try and rebuild my life somehow though and a clear scan next month will give me a huge boost so fingers crossed for good results.

My counsellor asked me at our last session together what good has come out of my life from cancer and as silly a question as that may seem to many it’s a very valid one to me. Cancer has actually enriched my life in many ways, it has led me to meet some amazing new people, it has given me an inner strength I never knew I had. Cancer has made me realise how much those I love mean to me and how life can change in an instant, literally the blink of an eye. It’s taught me not to sweat the small stuff, to let it go and move on, life is too short. I was always one for living life to the max anyway, but now I am even more so. If I get that all clear on 4th June the first thing I am doing is booking Florida for the summer and taking the kids to Disneyworld. Life is about the big moments, I love making memories and seeing as much of my family and friends as possible and another thing cancer has shown me is how much I mean to them too. It’s been a truly humbling and emotional experience for me to have had so much love shown the past few months, the cards, messages, gifts, flowers, wig donations, visits, it has all meant the world to me. They say you find out who your friends are at times like this and I am lucky to have some of the most amazing people in my life so thank you all so much for your support throughout.

I haven’t decided if this is my last blog as I hope that next month I will get back to work and to some sort of normality again, I might not have the desire to do this again or the need. That said it may be harder to go back to ‘the other side’ than I am anticipating so maybe a moving on blog will help me, I’ll know when I get there.

Until then i’m looking forward to finishing up at the hospital next Friday for a week and then flying out to Vegas to see my little brother get married. This trip was always the end goal to get me through treatment and I can’t tell you how excited I am to be going and to celebrate out there. It’s time to make some more memories.