Local Mum Gemma Longland “A wine-drinking, life-loving, very ordinary 35 year old wife and mum of two” blogs for us about her battle with breast cancer
Radiotherapy
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 had desperately wanted to know if I had then 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 draw 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 my through treatment and I cant tell you how excited I am to be going and to celebrate out there. It’s time to make some more memories.
The Chemo
Firstly I hate the word chemo, it’s even worse than Cancer. It brings up so many connotations that to say or think the word can put the fear of God in to even the strongest of people. I was no exception, surgery I could handle, chemo was a different ball game, or so I thought.
I was given a month off to recover after surgery before starting chemo. I had a big choice to make as well during this time, did I stay at Parkside hospital in Wimbledon where I had my surgery and knew the nurse and doctor team well or did I move to the Royal Marsden in Sutton, only a 10 minute journey from my house and a world renowned cancer hospital. You might think it was an easy decision and it should have been really to go from a small, private hospital with good but limited resource to one of the biggest and best cancer hospitals in the world but I was torn….torn because the Marsden (like chemo) was a hugely intimidating word to me, being treated there would mean I definitely had cancer and there would be no escaping it. Staying at Parkside in their small, intimate cancer ward would be less daunting, I felt I would have been shielded slightly from the reality of the big C. Dr B suggested the quality of care would be the same at both hospitals so let me make the decision.
Nick wanted to stay at Parkside, because he thought the experience I had there so far was so good that we shouldn’t move and he was right it was but practically did I want to be driving up to Wimbledon Common numerous times a week, enduring the town centre traffic every time when I could be driving just down the road for appointments? I decided the only way I could know for sure would be to visit the Marsden, a place I had only been to once when I was 8 years old and was being looked after my Nan who was undergoing treatment there. The day I went to the Marsden Princess Diana was visiting the hospital, I met her and made it on to the pages of the Sutton Guardian the following week so it’s an event that has always stayed in my mind, the hospital and the sights I saw that day have too.
I went to visit the Marsden with my dad a few days later, we were shown around the private ward and met the staff and they all seemed lovely. I had a very frank chat with one of the head nurses on the ward about my dilemma and she made her opinion very clear. ‘I would not hesitate to transfer to the Marsden if it were me’ she said ‘and I would want all of my family and friends treated here if they were ever diagnosed’. She continued ‘We have some of the best cancer specialists in the world here so you will be in great hands’, I spoke with my nurse friend Julia again who backed up this claim and so after that my mind was made up, the Marsden it was!
I met with my new oncologist at the Marsden, Dr Ring, about a week later. Dr B had signed me off as fit from surgery (although technically ‘fit’ I was still very swollen and bruised) and we discussed my type of cancer given the post-surgery results. The reality was I had a very aggressive and pretty large tumour, despite the fact that essentially the cancer was now ‘gone’ the risk of re-occurance was still high so the treatment plan was in short to throw everything and the book at it! Nick questioned at the time why I needed the chemo if the tumour was out and it was a good question. Dr Ring explained that because of the amount of lymph nodes I had involved it meant there was a chance some of the cancerous cells had escaped in to my blood stream and could then grow and form again elsewhere. The point of all my post-surgery treatment would be to obliterate any stray cells that may still be lurking and although they couldn’t guarantee it would work it would be giving me the best possible chance of staying cancer free.
I was to have 4 rounds of a drug called EC (nicknamed the ‘Red Devil’ because it is indeed pure red and toxic!) and this would then be followed by 4 rounds of another drug called Paclitaxol and I would also need have to have a drug called Herceptin injected every 3 weeks for a year. I would then have 15 rounds of radiotherapy followed by numerous drugs that I would be on for 5-10 years. Both the chemo and follow on drugs would put me in to early menopause which would mean I couldn’t have any more children. I was asked if our family was complete not long after diagnosis in case we wanted to opt for fertility treatment to save any eggs. In truth we were done at 2 children and let’s face it if I was facing 10 years of drugs during which time I would be unable to get pregnant then that would take me to 45, I was hardly likely to then want or even be able to have another baby after that, however it felt like cancer was robbing me of something else, another part of my femininity. It had taken my boob, would likely take away my hair (even if temporary) and so taking away my choice to have children felt like it was another part of my womanhood stripped away. I argued with myself constantly for feeling angry at this, I have friends who are struggling to have children and have seen the devastation infertility can cause. Nick and I are so incredibly lucky to have the 2 healthy children we have and we know that, I just felt a bit upset that the decision about whether to have any more children at the age of 35 was now out of my hands but I accept it now, although the menopause and hot flushes are something I could do without!
I was given lots of leaflets and advice on chemo and the side effects…..most notably the loss of hair. I was going to try the cold cap which can help minimise hair loss but the success stories seemed few and far between so I decided to start wig researching!
Around this time my sister in law Steph had taken it upon herself to set up a Just Giving page for wig donations. I was very against her doing this at first as I didn’t want to be seen as any sort of charity case but more and more of my friends who wanted to help suggested it would be a good thing as they all wanted to donate towards my wig as their way of helping me and so in the end I reluctantly agreed to let Steph do it (under the promise that I would not do any promoting of the page myself) and I assumed it would just stay between my close group of friends. Well the response the page got was amazing, an £800 target (the average cost of a real hair wig) smashed with over £2,100 raised. I was utterly amazed and still am at the generosity and kindness of everyone who donated. As much as I didn’t want to take from anyone, finding the best part of £1,000 to fund a wig just before Christmas and with the prospect of being on long term sick pay was rather daunting so to anyone reading this who contributed to my wig fund THANK YOU so very much!
To prepare myself for the loss of my hair I visited a salon in Notting Hill called Trendco. I took along Hayley, Steph, Maddie, Mum, my friend Donna and my Aunty Jackie (the latter 2 had travelled down from Sheffield and Newcastle respectively that weekend just to see me, amazing ladies).
I had been recommended the salon by Joanna Roswell. Joanna was a 2012 and 2016 Olympic gold medal winning member of the team GB cycling team and she lived locally in Cheam. Joanna has alopecia and rides bald and I saw her on London Tonight the day I was discharged from hospital giving an interview to promote her new autobiography. I instantly noticed how real and amazing her wig looked and wondered where she had bought it so I found Joanna on Facebook and sent her a long winded message explaining my plight and asking what wig shop she had used to see if they were local. To my amazement Joanna got back to me straight away (she must have still been at the TV studios) and sent a lovely message giving me some great advice and recommendations. Trendco was the salon where Joanna had purchased hers, she told me to make it a girly day and get some lunch afterwards and make it fun, so that’s what we did.
It was a surreal experience trying on wigs that day, especially as I still had hair on my head at that time but it never felt daunting or scary, most of the wigs were better than my own hair anyway! Because of the money raised I was able to purchase 2 wigs, so I brought 1 blonde wig and 1 brunette, the brunette one being my real hair one and the blonde one a slightly cheaper, synthetic alternative for when I fancied a change! We went for a nice pub lunch afterwards and then home. Nick and Olly had fun trying on my new wigs when I got back and then that was it, they were put back in a box for if/when I needed them.
My first chemo fell on Monday 27th November which happened to be my dad’s birthday…..Happy birthday Pa! Nick came with me to the first one, we had it booked for 10am so we took the kids to school and went straight to the hospital afterwards. I felt nervous that day, anticipating the unknown and having heard all sorts of horror stories about the side effects of chemo it was a daunting walk up to the hospital entrance once we arrived.
I was going to try the cold cap in at least an attempt to keep my hair (I did inform Steph that she would have to refund all the wig donations had it worked!) and had read up on the cold cap and how excruciating that could be to keep on so I took some strong paracetamol about an hour before to help numb the pain. It was pretty bad at first, like having an ice pack strapped down to my head. I didn’t think I could possibly keep it on for the required time of 2 and a half hours but luckily the pain did indeed numb after 15 minutes and after that I found it much more bearable.
In the chemo ward I was surrounded by other people having treatment and I couldn’t help but notice how much younger I was than the average age of patient in here…..by about 25 years! As a side note, I have never complained about my diagnosis or muttered the line ‘why me’, cancer is so common now it affects 1 in 2 of us, I was under no illusions that I was exempt from that stat. I have however wondered in my lower moments, why now? Why strike in the prime of my life when I have 2 young children who need me, who rely on me? Couldn’t I have got this later on in life when I was retired and had less financial obligations, when I’d seen my kids get married and have kids of their own? I’m not taking anything away from older people who deal with this disease but the fear of leaving this planet whilst still in my thirties with 2 young children whose lives it would affect immeasurably, sometimes I get cross at that. Then other times I see the children’s ward at the hospital and think of the babies and young children undergoing chemo and then I feel cross at myself for having the thoughts I do when these children are going through so much at such a young age. Cancer has no boundaries or limits, I’ve certainly learnt that.
I still felt quite isolated at the hospital and so I joined a group recommended on Facebook for young women under the age of 45 who have or have had breast cancer. Joining this group has really helped me, to be able to speak with young women the same age who have been through this, a place to ask questions, compare experiences and rant whenever you fancy and know that your group will understand how you are feeling, it’s truly a god send. I also met up with a girl who I met on the group called Nicole and her friend Vicki, both girls are local mums and were diagnosed in their thirties too. Being able to meet in person and for them both to open up and share their experiences was so valuable to me and I will always be grateful to them for reliving their worst moments in order to help me.
And then there is Sian, a girl whose face I didn’t even know 6 months ago and who I now feel I have known all my life given how much our friendship has grown in such a short period of time. Sian is my brothers friend Dale’s wife and I remember hearing about her being diagnosed with breast cancer almost 2 years ago as it was just after my brother Scott and Maddie’s engagement party which they had been at. I can recall mum telling me shortly after the party and Scott being upset about it but I knew Sian had treatment and was getting better and that she and Dale despite postponing their original wedding because of treatment, had got married abroad last summer. When I was diagnosed Scott offered to put me in touch with Sian and we started messaging and then met for coffee in Epsom a week later. We were together almost 3 hours, it was very emotional and Sian kindly told me her story and even brought photos along to show me her cancer journey. Sian has been by my side ever since that day, she visits me after chemo and we meet up often. She keeps me sane when I have bad days or turn to Dr Google (don’t do it kids!) and seeing how amazing she looks now and how well she is doing now inspires me to keep going. We also found out the day we met that we had a number of friends in common and by coincidence we both had a weekend booked to Butlins at the same time in November, Sian was going with Dale and some friends and I was due to go with a large group of girls for my good friend Sarah’s 30th birthday celebrations. I told Sian I didn’t think I would be going on the weekend away as I would still be recovering from surgery and about to start chemo, Sian told me she thought I would be ok to go maybe for a night….and in the end I was and I went for 2 nights! Well why not have one good weekend before chemo hits eh! We met up whilst in Butlins, in our fancy dress gear, I was a soilder and Sian dressed up as Marge Simpson and we had such a fun time. We are also booked on the same flight out to Vegas for Scott & Maddie’s wedding in May and have had a couple of other fun nights out together this year. Cancer brought us together but actually I’m very thankful for that as I know already Sian will be a friend for life.
Back to the chemo ward, I had the EC administered via a cannula in my left arm (my right arm is now out of bounds for this and even taking blood pressure or giving blood etc. for life after surgery). I was a bit worried about the cannula as I had heard many stories of how much it can damage your veins but it seemed to all go ok, I didn’t feel any pain anyway. Nick took me home and then picked up the kids from school and took them to their weekly swimming lesson whilst I rested. I watched a film and had some tea and chocolate but slowly as the afternoon went on I started to feel more and more ropey. I had been given a whole concoction of drugs to take for the days after chemo, I was on 4 different lots of mostly anti sickness steroids and I had to inject myself as well to increase my white blood cell count. At first it was quite hard to remember what pills to take and when and sometimes I got it wrong and overdosed on certain ones! I felt rubbish for the first couple of days after that 1st round of EC but then slowly but surely I was back on my feet and feeling, well quite good! I was amazed at how quickly I felt normal again and really pleased but then just before my 2nd round of EC was due to take place before Christmas the hair started to fall out….thick and fast. My new breast cancer nurse, a lovely woman named Karen, advised me to wait until at least the 2nd round of chemo before doing anything drastic regarding my hair and so I did, although it was hard. I was shredding hair everywhere by that point, it was coming out in clumps every time I so much as touched it, the house looked like we had 10 dogs living there!
It became quite distressing just watching the hair come out and having no control over it so I started to wear my wigs, I didn’t want to be out anywhere and have someone hug me for example and risk the hair being touched and it coming out. I also figured that if the hair was coming out at the rate it was it wouldn’t be long before I had none left and would be in the wig anyway so really it was adjusting myself early to the ‘wig life’.
The 2nd round of chemo was on 18th December, my last of any kind of treatment for that year, hurrah! Dad came with me for this one, it was much the same as the first time and actually we had almost a pleasant morning. It was very quiet on the ward and the nurses around us were putting up decorations and we were all discussing our Christmas plans. I hadn’t felt ‘festive’ at any point in December despite my best efforts. Christmas is usually my favourite time of year but this time I felt completely numb to it all apart from that day bizarrely, it lifted me to know that would be it for another 3 weeks and I could finally countdown to Christmas without another load of appointments in front of me, but it was also just nice to speak to the nurses that day, sit and enjoy their company and to almost normalise the process I was going through. This chemo lark wasn’t as bad as I had thought it was going to be so far.
After round 2 of chemo the hair loss got even worse, to the point of no return when I had a bigger bald spot than Prince William so Sian came round and shaved my head. I felt relieved when it was done and almost empowered. Olly and Sienna were there to watch it, as was my sister (with a large glass of white as she was so nervous) and Nick. The kids watched in amazement and were fascinated by mummy’s new bald head which I had explained I had to have because of the ‘nasty medicine’ I was taking. The next morning when I woke the kids for school Olly looked upset, ‘What’s the matter Olls’ I asked, ‘your hair hasn’t grown back mummy’ said Olly. He had thought it would grow back overnight so I had to explain to him that mummy would be looking like this for a while! Nick was fine with it too although he really wanted the cold cap to work, it hadn’t though so we had to accept that and I would just start rocking my awesome wigs instead!
A funny thing with kids and wigs….they don’t keep it a secret! I was at the dentist with both of mine last week and as Olly was having his check up in the chair and chatting away to the dentist he suddenly felt the need to announce ‘My mummy is bald and wearing a wig’, the dentist looked puzzled and looked over at me, ‘it’s true’ I laughed trying to ease the now awkward atmosphere in the room. Sienna is even worse, she sometimes tries to take it off me in public, laughing as she shouts ‘Show me your bald head mummy’! I take it all with a pinch of salt though, it’s what kids do and in a way it’s a good thing for Olly and Sienna to be so comfortable and open about it all.
Christmas and New Year passed, I enjoyed it and for the first time I felt relaxed over that period but I was also glad when it was over and it became cold, dreary January. It sounds awful doesn’t it but it was just more reflective of how I was feeling at the time and also the start of a new year/month meant I was another step closer to the end of treatment.
I joined a gym in January, I had wanted something to focus on in between treatments after Christmas had been and gone and this seemed ideal for me as it would keep me active. I had also been reading up on how to reduce my risk of reoccurrence and the most important thing I could do would be to exercise regularly and keep a healthy BMI, so that was all the incentive I needed to get going! I signed up at David Lloyds in Cheam and started to go whenever I could. I really enjoyed getting back in to exercise, I had barely found the time to do anything since having the kids but now with being on sick leave from work and Sienna having started Nursery fulltime that month too I finally had some time for me. I found a great PT called Josh who has really encouraged me to keep going and I go to his boxercise class most Wednesdays. I’m finding a healthy body is helping me with keeping a healthy mind too, both of which are crucial to have when going through such a gruelling treatment. It was weird the first couple of times I worked out as I just wore a bandana and no wig so I was aware I was getting a few second glances sometimes but a couple of weeks in I couldn’t care less, let people stare!
Round 3 of EC was supposed to be quicker as I had ditched the cold cap by this point (the cold cap goes on half hour prior to chemo and stays on for 90 minutes after treatment for full effect) however a mistake with one of my blood results from the previous week meant the chemo was actually heavily delayed on the day. It was pretty distressing sitting in the chair with the cannula already in your arm having psyched yourself up to undergo the chemo to then have such a long delay, especially being in a busy ward as it was that day and watching everyone sitting around you receiving their treatment and then walking away. It was quite a traumatic day for me and it was the first time something had gone a bit wrong with my treatment, plus I was due to have my first counselling session after chemo that afternoon which I subsequently missed. My mum was with me that day (I have a chemo buddy for every round) and she naturally got upset because I was. My diagnosis has hit my parents hard and my mum always tells me she wishes she could take the cancer out of her body and put it in to hers. I tell her not to be silly but of course I understand, I know that I would feel exactly the same way if it were Olly or Sienna. We both cried quite a lot that day, my chemo nurse Martina was so kind and couldn’t have been more supportive but in the end it was all done, round 3 in the bag.
I got to round 4 of EC still feeling pretty ok, I had started to lose my lashes and eyebrows at this point however which affected me more than losing my head hair! You can’t disguise a lack of lashes or brows so easily on the school run in the morning when you have 5 minutes to get ready. I also found I was looking more and more like a cancer patient which I didn’t like (I’m not sure what I had expected!). I had reached the half way mark now though….now to switch drugs for the final 4 rounds.
Paclitaxol was to be my 2nd chemo drug and it would be administered every 2 weeks from now on instead of every 3 because it wasn’t as strong as EC so I didn’t need as much of a break in between treatments…..supposedly! The ‘tax ache’ as it is nicknamed hit me hard though! I have had 2 rounds of it so far and a couple of days after having it I am knocked for six. I have felt extremely fatigued and my entire body aches for days on end. I have had many more sofa/bed bound days on the tax than EC (I actually preferred the red devil!) and it’s really hard mentally to feel so helpless and weak, I can barely walk up the stairs on my worst days. I have just finished round 6 now though and with 2 more to go the end of chemo is nigh. In this dark and long tunnel I am walking through a glimmer of light is finally in sight. I am due to finish Chemo on Tuesday 3rd April and then have a 2 week break before stage 3 starts…..radiotherapy. I can’t wait to get to the end of chemo and have been on countdown since it started. Whilst it has been kinder to me than I thought it would be at least in the early stages it’s still a gruelling treatment that takes over your life. Everything I plan or do is all based around when my next treatment is and how I’m likely to feel. I’m at the hospital so often it feels like a second home and I have had so many drugs running through my veins i long to function normally again! 2 rounds to go though now in just under 3 weeks….and as much as I appreciate my life and every day more than ever now I have never wanted a date to arrive more!
February
The Surgery
Firstly thank you so much for all the amazing feedback, comments and messages that I received on my first blog. I can’t believe how many people read it (over 1650 visitors at last count!). I have had so many messages of support that it has really encouraged me to keep going with this. The amount of people that have told me they have now checked themselves or booked an appointment with their doctor over any concerns they had has made this whole blog worth it so thank you! Now on that note where were we….
So Friday 20th October I was sitting in Dr Banerjee’s consulting room with the good news (if we can call it that!) that my cancer hadn’t spread, so now a plan of action to get rid of the bastard! Dr B advised me that he suspected but could not say for definite that I had cancer in more than one area in my right breast, I could either go for more tests at the Royal Marsden to determine if it was in more than 1 area and if it wasn’t we could look at doing chemo first to shrink the lump and then a lumpectomy OR I could have a full mastectomy and reconstructive surgery in 8 days on Saturday 28th October, followed by chemo and radiotherapy thereafter. I would also need a full lymph node clearance under my arm to remove the affected lymph nodes.
For me it was a no brainer. ‘I don’t want a lumpectomy anyway’ I told Dr B ‘I want the whole breast removed and actually I would like a double mastectomy please to reduce my risk of this ever coming back’ (as you may be able to tell I had finally found google!). Dr B shook his head ‘I am not going to advise that you remove a healthy part of your body Gemma, your affected breast will have a 5% chance of the cancer coming back after surgery, your non affected breast only has a 10 percent chance, it’s not a big enough risk to go for the double mastectomy’. Now to me the difference between 10% and 5% was pretty substantial, that’s taking the risk down from a 1 in 10 chance of the cancer returning in either breast to 1 in 20; I’ll take that I thought.
I maintained that I wanted a double mastectomy but then Dr B then told me how major the surgery was, if I were to have both breasts removed instead of 1 then my recovery time would double following surgery and that would delay the start of chemo by over a month. I just wanted this all over with as quickly as possible so I agreed with Dr B that I would have a mastectomy and immediate reconstructive surgery on the right side with lymph node clearance and that as a compromise we would revisit the left side next year when all my treatment was finished to see what he could do for me then.
You may be reading this thinking I made quite a rash decision that day, perhaps I should have had the additional tests to see if we could have gotten away with saving my breast, but here was the thing, I didn’t want it saved, I wanted this thing off me. In fact if I could have ripped it off my body at that time I would have! Ever since diagnosis I could suddenly feel the lump more, it was becoming bigger every day. Each time I undressed or got in to the shower I felt my fingers creep to the affected area and it seemed more prominent. I relayed my fears to Dr B who explained that where I had the mammogram and biopsy this had probably irritated the lump and exacerbated it. However all I could feel day in, day out was the tumour getting bigger and so it had to be removed, as soon as possible!
Another reason for my wanting to crack on with the surgery and not take the chance with a delay to chemo was I had a wedding to go to in Las Vegas! My younger brother Scott, who I am very close too, is due to marry his fiancée Maddy in Vegas in May this year. I am bridesmaid and am absolutely determined to be there for their big day. I was warned by Dr B at the start of all this that it would be 50/50 on whether I made it but that he would do all he could to get me there so if I had delayed my chemo even by that extra four weeks my chance of making it to the biggest day of my brother’s life would have also been severely reduced, that helped make my mind up too. Life is all about these big moments at the end of the day isn’t it, these are the memories we treasure and I am determined to be by my brother and Maddy’s side in those wedding pics!
So I was booked in that day for the op the following week. Dr B explained we had two options for surgery, plan A would be too remove muscle/tissue from my stomach to reconstruct the boob, however when he examined me he decided that I didn’t have enough fat on my stomach to do this so in that case it would be plan B, an implant. Now this wasn’t your standard ‘boob job’, an implant is normally inserted behind the breast muscle, I would have none left so there had to be an additional feature to act as the muscle barrier between the silicone and the skin….and that feature was to be pig skin! Dr B showed me a detailed computer presentation of how the implant is basically wrapped in a parcel of pig skin and then inserted in to the breast, it was amazing. There was a chance the body would reject Peppa Pig and if this was the case the implant would have to be removed and we would have to revisit taking muscle from somewhere on my body again, possibly my back or if I went on the cake diet we could look at using my stomach muscle again but the risk was small so I went with it, let the piggy see the boobie!!
I was booked in for surgery the following Saturday with some pre-op assessments booked in for during the week. Nick and I knew we had to tell the kids something after that day, we had kept them in the dark on everything up until now, but I was going to be in hospital for the best part of a week so it was time to tell them….and God knows how!!
My good friend Julia used to be a cancer nurse and she gave us a book called ‘Mummy’s lump’ to read to the children. The only thing was this book covered the whole cancer journey, from surgery, to chemotherapy and radiotherapy and Nick didn’t think they needed to know everything yet as it would be too much for them to process, I agreed. In the end we decided to tell the kids that mummy had a ‘poorly boobie’ and would be going in to hospital to have an operation to take it away and give mummy a nice, new one. The kids were fascinated, ‘will your new one be a different colour mummy’ said Sienna, ‘maybe pink or green?’ Olly on the other hand was still in hysterics over the fact that mummy had just said the word ‘boobie’ and so that was it, the kids knew what they needed too at that time and for the next week life continued as normal. It was half term that week so other than the pre-op bits I got to spend a lot of time with the kids which was lovely. We had days out, saw friends and had fun, it all helped with putting everything to the back of my mind for a few days.
Saturday 28th October came round quickly and suddenly the enormity of what was about to happen hit me. I was due at the hospital for 11am with the op planned for around 2pm. The kids were going to stay with my sister in law (Steph) and brother in law (Scott) that day and overnight so that Nick could be with me. Nick arranged to drop the kids off at 10am then come back for me and we would head straight to the hospital.
Saying goodbye to the kids that day was much harder than I had imagined. Nick was packing their bags and coats in to the car while I hugged and kissed them goodbye. Sienna gave me a kiss and cuddle and ran off to the car all excited because she was going to her cousin’s house to play. Olly seemed more hesitant, he could tell I was upset. ‘I’m going to really miss you Mummy’ said Olly sadly, ‘I’m going to miss you too so much Olly’ I said, and as I did so my voice cracked and I went, floods of tears streaming down my face. This in turn set Olly off who then started crying and hugging me.
‘Olly’ called Nick, ‘Come and get in the car’, ‘Olly you have to go’ I said mid sob, so he reluctantly started walking towards Nick, got to the car door, spun around and ran straight back to me, wrapping his arms around me and not letting go (neither did I)….this happened three more times before Nick finally had to carry Olly off to go in the car. I shut the front door behind me and sobbed like I have never done before, all sorts of thoughts running through my head. What if something goes wrong during surgery, what if I don’t wake up, will I ever see my kids again?
By the time Nick got back I had calmed myself down and he assured me that Olly had been fine when he got to Scott and Steph’s house so not to worry (now I didn’t know if this was true or not but I had to believe it was to put my mind at rest). We headed to the hospital. Not much was said during the car journey, I think the reality of what was happening was finally starting to hit us both. Who would have thought just three short weeks ago when we didn’t have a care in the world other than the odd stressful day at work or the kids winding us up, that on this sunny, calm Saturday in October I would be having my boob cut off; it was a surreal thought.
We arrived at Parkside and I checked in to my room, I even had a porter help with my case, I felt like I was in a hotel (thank you to my employers for the private healthcare!). I was given a gown and long surgical stockings to change in too and then Nick and I sat and waited, watching TV in my room, not quite knowing what would happen next other than being told we were to wait there. After an hour or so an anesthetist came to meet with us (I can’t recall his name), he explained to us both that he would be with me throughout the entirety of the surgery to regulate my breathing and make sure nothing went wrong, he also said he would come back to collect me when they were ready in surgery downstairs. The anesthetist instantly put Nick and I at ease, after he left us we both agreed he had the most softly spoken and calming voice we had ever heard (it was almost hypnotising!) and he made us both feel really relaxed….perhaps a good attribute to have with a job like his!
After seeing the anesthetist the head nurse on the ward came to see us and showed us the HDU/Intensive care ward where I would spend my first 24 hours post- surgery. Just hearing the words intensive care really hit me with a sucker punch, I suddenly realised how extensive and major this surgery was going to be, but it had to be done if I wanted to see my kids grow up so that thought went as quickly from my mind as it had entered it.
We went back to my room for about another hour until finally the anesthetist came to collect me and we walked slowly down the corridor and in to a lift that took us to the ground floor. As we left the lift Nick was told he couldn’t come any further, my legs started to tremble, this was it now I was on my own. We gave each other a hug and a kiss goodbye, said I love you’s and as I walked away through the theatre doors I looked back at Nick wanting to say something else but not quite knowing what so we just smiled, tears in our eyes and that was it.
The anesthetist had me lay on a trolley that would be taken in to theatre next door where Dr B would be waiting for me once I was put under the anaesthetic. He explained what was about to happen and the last thing I remember was going drowsy with tear stained eyes as he stroked my hand saying ‘Don’t worry Gemma, I am going to take good care of you I promise.’
Now I don’t remember waking up in recovery, my first memory is being in HDU and having Nick and my mum and dad arrive very shortly after coming round but apparently by that point I had been awake over an hour. A nurse came to see me ‘How are you doing now and did you find out if Olly was ok’, ‘Huh, what happened to Olly’ I asked, well the first thing you said when you came round was ‘My Olly, is my Olly ok’ said the nurse and then it dawned on me, leaving Olly and that awful moment when he kept running back from the car must have been my lasting memory when I had gone under and so when I woke up my first thought was to ask about him.
Mum, dad and Nick had been waiting in my room for a while before they were called down, Nick had spoken with Dr B who had assured them that the surgery was a success and so they sat with me for an hour or so before I started to get sleepy and then left for the evening. The last thing I remember from that night (apart from a very annoying man in the bed opposite me who kept being rude and shouting at the lovely nurses!) was Dr B calling the ward at 11pm on his way home from a concert that night that he had previously told me he was going too, checking on how I was doing.
The next morning when I woke up I felt pretty sore but ok. I had a full English breakfast (and ate the lot!) but I was still bed bound at this point so I had a catheter installed, lots of monitors on me and drains coming out of my boob….it’s all very glamourous this cancer lark!
Mum, Dad and Hayley visited in the morning and then Nick came in the afternoon and Steph visited me that evening when I was finally back in my ward. The catheter was taken off me that evening but I still had the drains on that were taking all excess fluid from my boob and they soon became very annoying as I kept forgetting they were there or tripping up on them when I went to the bathroom. I also had a morphine drip that I could top up at any time (so I had a lot of fun with that!) and I was having all sorts of pills and injections every couple of hours to relieve pain and reduce the risk of infection….basically I was as high as a kite!
Dr B also came to see me that Sunday evening, ‘Don’t you ever get a day off’ I asked him as he came in to the room, ‘this is my day off’ he replied with a smile. ‘So do you want to see your new breast’ said Dr B, ‘yep ok then’ and with that he took off the bandages and unzipped my surgery bra….now I was impressed! It looked just like my old one (I’m not sure what I was expecting) but actually even better! I was very happy with the results and Dr B agreed that he was too and said everything looked good so the main task now was to rest and recuperate and he would see me again in a couple of days.
The next few days went quickly and I had many visitors which was lovely, they kept me entertained and ensured I never went long without company. It was so amazing to see how much people cared, I was inundated with gifts and cards. I also had regular visits from my breast cancer nurses Ginny and Jo, physiotherapists who took me through some basic exercises so I could increase movement in my affected right arm and Dr B came to see me one more time during the week to check on my progress. I managed to see the children finally on the Tuesday which was brilliant, I was so relieved that they were both doing ok.
Mum did tell me that she had found Olly crying himself to sleep at one point over the weekend but she later said the difference in him after that day when he saw me was amazing, he was so happy that Mummy was ok and so was I! One of my visitors that week was one of my best friends Sam who had looked after the kids one day when Nick came to see me. She told me that as soon as she came through the door at our house and sat down Sienna had her doctors kit out and was examining her ‘boobie’, ‘It’s ok Sienna, Aunty Sam hasn’t got a poorly boobie, that’s just mummy’ she said to her, ‘nope I need to check you too Aunty Sam’ replied Sienna and so poor Sam had to endure a thorough check up by my 3 year old daughter that day, and Sienna still gets her kit out to check on me and others on an almost daily basis 3 months down the line!
Back to the hospital, I struggled with getting dressed and washed initially which was frustrating in the first few days but I soon managed to get back on my feet very gradually.
I was told before surgery that I would be in hospital for six nights but after night 5 I had a phone call from Dr B, he had just dropped off his son to school and asked how I was doing, ‘all fine’ I told him. ‘Do you want some good news’ he said, then before I could answer he said ‘you can go home today, I have spoken with the nurses and am happy with your progress and for the drains to be taken out’, ‘thank you so much’ I gasped and then he continued ‘Gemma you are a very special lady and you have been very strong throughout all of this and I know you will continue to be, I have booked you in at my clinic next week to discuss your surgery results but now go home and be with your family.’
As soon as I put the phone down I lost control and for the first time since I had been in hospital I sobbed uncontrollably for about half an hour. I must have been quite loud as the nurses heard and rushed in to check on me. I think until that moment I hadn’t realised the emotional attachment I had to Dr B, he had been with me from that very first appointment at St Anthony’s and so I felt as though I owed him my life. I had become very dependent on him so hearing those words on that day and having the good news that I could go home and be with my babies meant the world.
I called my mum who was at home with Sienna. She was delighted by the news and arrived an hour later to collect me and we went home where I spent a few days recovering, just being happy to be there and back with my family.
I received my surgery results a week later, they were mixed. Firstly I did have cancer in more than area as had been suspected so a mastectomy would have been my only option meaning I had made the right decision to go for that. I was then ‘downgraded’ on the grading of my tumour from an initial pre-op grading of a 3 to a 2. This meant the cancer wasn’t as aggressive or particularly fast growing as originally thought. However the amount of lymph nodes affected, which was 6 out of the 12 removed and the size of the tumour (that tiny thing I found was 6cm!!) tipped me over in to stage 3 category.
So that news wasn’t great and put me immediately in the high risk group for secondary cancer (for those unfamiliar with secondary this is otherwise known as stage 4, terminal) which was about 30-40 percent so pretty high although my oncologist later told me he suspected the risk is actually now lower than this as these are old stats, calculated before many new drugs became available.
Once I understood the implications of my surgery results It took me a while to deal it and I am still doing so now; I felt more like I had found the cancer just in the nick of time rather than early as I had previously thought. The main thing is the odds are more in my favour that the cancer will not return than it will and that the chemotherapy and radiotherapy treatment I would soon be having would all be preventative measures against such reoccurrence and there would be things I could do myself to reduce that risk but more on that later.
For now though I had come through surgery and all had gone well, the tumour itself was gone and stage one was done! I was given four weeks to recover and undergo physiotherapy for my affected arm after the lymph node removal, then next up was to prepare myself for the most dreaded part of this whole journey for me…chemo!
January
Sitting here in front of my laptop I’m still in two minds about whether to do this, I haven’t told a soul I’m doing it and I’m still not sure that I should. But with many thoughts and emotions running through my head every minute of the day on top of all the ‘experiences’ I have had so far since diagnosis and the luxury of time that long-term sick leave has afforded me I figure why not give it a whirl and document this ‘journey’ I am on. (I hate that word, I sound like I’m going for an X factor audition but it’s the only thing I can think of that isn’t an expletive to describe this crap!).
When I was first diagnosed a blog was mentioned to me by my friend Jacqui at the time as something she thought might help me, similar to what the brilliant Lisa Lynch did a few years ago with writing ‘The C word’.
I read Lisa's blog years ago and was very inspired by it but right in that moment life was too much of a whirlwind for me to have even considered putting pen to paper (or hands to laptop if we are being anal!) at that time. So here I am, three months, one major surgery and three rounds of chemo later and finally I’ve plucked up the courage.
For my kids
The main reason I am doing this is for my kids, Olly and Sienna. They are 6 and 3 years old respectively and will never fully understand what we have been through as a family at this time until they are older. This is my little note to them, something that (God forbid) IF I don’t make it through this journey they can read my story but my hope is we will read this together when i’m much, MUCH older so they can understand why Mummy was such a grumpy, tired slap head at one point in their lives (who am I kidding, I was grumpy and tired way before cancer, but this seems such a great excuse to pin it on!).
So let’s take this back to where this shit-storm all began. Tuesday 3rd October started as a very ordinary day. I work part time and don’t work on Tuesdays so that day I was at home with the kids after the school run in the afternoon. That evening I was due to take my son Olly to a local football match with my Mum (Karen), Dad (John) and my Uncle Mark (Dad’s brother). Olly and I are big Spurs fans and the Tottenham under 23 team were playing my dad and uncle’s supported team AFC Wimbledon in a lower league cup match so we had tickets to go together that evening (I appreciate the football reference is of complete unimportance in the grand scheme of things but I would do anything to get a mention of my beloved Tottenham Hotspurs in!).
Anyway, I was taking a quick shower whilst the kids ate dinner downstairs before getting changed to go out as soon as Nick (my husband) got home from work and I decided to check my boobs whilst showering. Now I should point out that whilst I do check myself in the boob area and have done since having kids as was advised by my GP at one of my post-natal check-ups, I do not do it regularly. It had probably been about 6 months since I last checked so a note to all you ladies, check regularly, once a month is about right so I’ve since been told!
Finding it
Almost as soon as I started to check and lifted my right arm above my head before circling the area with my left hand I found ‘it’, not a lump by any means but a very small area of something that felt like a hard muscle, about 1 or 2 cm in size. I froze, straight away I thought ‘what the f&*k is that’, I checked the other breast in the same position to see if it was the other side as well, perhaps it’s a muscle I thought…..but it wasn’t the other side.
I got out of the shower and stood in my bedroom in a towel in front of the mirror for ten minutes continually feeling the area until I heard Nick get in the front door from work. Straight away I called him upstairs, ushered him in to the bedroom, shut the door and asked him to check what I had found. Nick felt the area and said he couldn’t feel anything, I asked him to check again, ‘it’s nothing’ he said then Nick felt the other boob, ‘Look I can feel it the other side too, it’s just a gland’. ‘It’s not the other side’ I protested but then Olly rushed through the door, we had to get to football so I got dressed and we left.
I then went to pick up my mum and dad. I had already messaged my mum and sister Hayley straight after getting out of the shower to tell them what I had found so as soon as we got to my parent’s house I took mum upstairs quickly and asked for her opinion. She could feel it … I wasn’t going mad after all. ‘I’m sure it’s nothing’ said mum ‘but definitely get it checked out’. So I did, I booked an appointment at the GP’s and was seen that Saturday morning. The GP checked me over and told me that whilst she didn’t think it was anything sinister protocol is now to refer all breast lumps so she referred me straight away and by Monday 9th October I had an appointment booked in at St Anthony’s hospital breast clinic that evening.
I should point out at this point that although I had a slight worry in my head about the lump and of course cancer had crossed my mind, I didn’t actually really believe it was anything bad (ok that’s not strictly true, I had gone out for a curry with my friend Cassie two days after finding the lump and had a little cry but I put this more down to us consuming three bottles of wine that evening than me being really, truly worried!). I thought that the clinic would take one look at me, tell me it was a cyst or refer me for a mammogram at a later date and so I made a fatal mistake that evening...I went for the appointment at St Anthony’s on my own.
At the clinic
During that day on the Monday I had been to Chessington World of Adventures with Sienna, my mum and niece Lila. The clinic appointment was barely even mentioned, ‘Oh I’m getting that thing I found checked tonight’…'Oh are you, that’s good, let me know how you get on won’t you, I'm sure it’s all fine. Shall we do the Gruffalo River Ride now then…’ was about the gist of the conversation we had about it all day. Neither of us were worried. I had also told one of my best friends Lisa that day what was happening as she had invited me to come round her house that afternoon but I had to collect Olly from school, get the kids to Nick and then dash to the hospital so I couldn’t. When I explained why she panicked and offered to come with me for moral support but I felt ok going on my own so I told her not to worry.
I met Dr Banerjee, a breast surgeon, at his clinic in St Anthony’s that evening, he checked me over there and then, said the words my GP had said before him ‘I’m sure it’s nothing sinister….blah blah’ (although he later admitted to me that he was actually very suspicious of what he felt straight away but he didn’t want me to worry before he could determine for sure what it was). ‘I’ll send you upstairs to our radiologist department’ said Dr Banerjee, ‘They’ll do an ultra sound and hopefully it will just be a cyst, if it isn’t that doesn’t mean it’s anything bad still but we can do a mammogram and biopsy to find out and I’ll book you in for my next clinic on Thursday so we can discuss the results then’.
So off I went up the stairs, I hadn’t expected that I would have the tests done that day, I assumed given the time of my appointment that the department might be shut and I would be given a separate appointment, so I felt slightly nervous as I walked up the stairs. But still, the sooner the better really and if it meant I didn’t have to come back again for separate tests then even better!
So I sat and waited, a young girl was waiting in front of me, must have been early twenties and she was in the waiting room with what looked to be her parents. She went in first and twenty minutes later skipped out smiling saying to her (probably) mum and dad ‘It’s a blocked milk duct, I’m fine and I don’t even have to go for the results appointment on Thursday’; she had been booked in for results as well but that was cancelled in light of what they found. ‘Great’ I thought, I should be home in half hour then and I’ll probably have my follow up cancelled too. I could not have been more wrong...
Change of tone
I went in the room next, a female radiologist was there waiting for me, along with a nurse, they sat me on the bed, all very friendly and lovely and explained they would do an ultrasound first to look for what would likely be a cyst. It took me back to being pregnant as they did the ultra sound on my boob with the cold gel they apply first and the image on screen, but this time it was different and that was no baby being scanned!
As soon as the radiologist started looking at the image on screen I noticed the tone change, whether knowingly to her or not the happy smile that had greeted me when I entered the room had dropped and a look of concern seemed to appear straight away. ‘It’s not a cyst’ she said bluntly, ‘and it doesn’t present like a fibroid’ now the word fibroid meant nothing to me at that point in time, I had no idea what it was nor what the implications of her saying that meant (other than not sounding great)….
I later found out a fibroid is a non-cancerous lump. ‘We need to do a mammogram and biopsy’ she said…now I was worried. I was ushered in to a room next door by the nurse and then endured what I can only describe as like being clamped down in to some medieval torture device as tightly as they possibly could, at all different angles, on both boobs…..it was horribly uncomfortable. I was then sent in to a nearby waiting room wearing just my hospital gown that I had changed in too, I didn’t even have my phone on me so I couldn’t tell anyone what was happening as that had been left in a locker with my clothes before I went in to the room.
Twenty minutes went by but it felt like hours, I was called back, ‘we need more images on your right side please’…..so I went through the whole undignified process of being ‘clamped’ down again all whilst fighting back the urge to scream or burst in to tears because by that point I knew something was badly wrong.
I went back in to the little waiting room, more torturous minutes passing by, until eventually I was called back in. I’m not sure how I made it back to the room without my legs giving way but I did. ‘Should I be worried’ was all I could muster out, ‘There is a lump there that is concerning me’ said the Radiologist. ‘Whatever it is will need to come out and I am going to perform a biopsy now so we can have the full results for you on Friday’, so I laid down again, frozen in fear as what felt like a staple gun peirced the side of my breast. I was too numb to feel any pain from that. ‘We also found a lump under your arm in your lymph nodes’ the radiologist said, again the words lymph nodes also meant nothing to me, the only time I have ever been near a hospital was when I was pregnant. I don’t get ill, this whole experience and terminology was alien to me.
As I started to get up to go once the biopsy was done (I just wanted to get the hell out of there) the radiologist spoke again. ‘You are in the best hands for treatment you know, and we can work around you. I know you have young children and it’s half term coming up…’ she tailed off.. Sorry, what treatment? And then the final hammer blow, ‘When you see Dr Banerjee on Friday make sure you bring someone with you, you may have a lot of questions.’…..and that was it, I knew I had cancer.
I remain convinced to this day that if I had actually asked the radiologist directly if it was the big C she would have told me there and then, but I couldn’t, I could not bring myself to utter those words so instead I ran out of the hospital in to the cold, dark night outside and sobbed. I rang my mum in the car on the way home who was wondering what on earth was going on and why she hadn’t heard from me and I explained what happened and ended the call with ‘Mum, that Doctor just did everything but say I have breast cancer’.
Waiting
The next few days were a blur, I didn’t eat or sleep until Thursday. I told my friend Sooz at work as she had known about the lump so had texted me that evening to see how it had gone and I told her everything. She then told my boss Danny who texted me telling me to take the week off and not to come back until after Thursday when I knew more. Whilst that was a lovely gesture it left me at home on my own whilst the kids were at school, worrying, fretting and just living in that complete limbo of knowing but not officially knowing I had cancer!
I didn’t go on google once, I refused to look up anything until I saw the Doctor on Thursday. Nick remained positive, he has always been a ‘glass half full’ person anyway and he was adamant that until we heard the words that there was still a good chance it wasn’t cancer, but then he hadn’t been at the hospital, he hadn’t seen the dark change of tone in the room once that grainy black and white image had appeared on screen. Perhaps he was in denial, maybe that wasn’t a bad thing; he was coping better than I was, I knew that! I relied on sleeping pills to knock me out at night for the next couple of days and sought comfort in close friends and family who tried to reassure me as best they could until Thursday finally dawned.
My appointment to see Dr Banerjee was 3pm. 3 frigging pm was a very late appointment on a day like that; it took forever to arrive. Nick left work early and got me at 1:30pm, ‘let’s go now’ I said, the appointment was at Parkside Hospital in Wimbledon Common, we had never been there before so I wanted to arrive in good time and allow for traffic/parking.
As it turned out we arrived an hour early. During the car journey on the way there I had what must have been a panic attack; I went dizzy and couldn’t breathe. Nick was trying to calm me down but it got worse, only heightening as we got closer and closer to the hospital. When we arrived I managed to get out of the car and took some long deep breaths and eventually composed myself. We walked in to the hospital, registered at reception and sat down.
Then Dr Banerjee walked out five minutes later, he looked at me and walked over, Great I thought, we can get in early. ‘Gemma you know your appointment is at 3pm and it’s ten to 2?’ ‘Yes,’ I spluttered, ‘we got here early’. ‘I can’t see you until 3pm I’m afraid, my clinic is full’ so we waited, and waited and waited. My dad then joined us as he came straight from work to be with me while Mum and Hayley looked after the kids. Dad said he would wait outside or in the car if I wanted to go in with just Nick but I told him to come in with us. 3pm came and went, 3:10pm came and went, I then had another panic attack in the waiting room, and then finally at 3:14pm my name was called.
I was introduced to a nurse called Jo by Dr Banerjee as we walked to his consulting room, ‘Ahhh a cancer nurse’ I thought and I was right, as we sat down Dr Banerjee could sense my nerves and got straight to it, ‘Gemma I think you already know what you are going to hear today don’t you’, I nodded my head. ‘I am sorry but it is a tumour’, I nodded again and stifled a sob. I can’t recall much of what was said after that other than I was told I had stage 2 breast cancer and would likely need a masectomy and chemotherapy/radiotherapy thereafter.
A lot to get my head round. I was booked in for all sorts of staging scans the following week (MRI/CT/BONE scan) with results on the Friday. Then I realised something, ‘I already have something going on with my liver’ I told Dr Banerjeee, I had suffered with some abdominal pain back in august and had an ultrasound done on my pelvis and whilst that had shown all was ok, they had spotted something whilst looking at that area on my liver, some spots that looked like cysts. ‘I am actually already having a CT scan on my liver next week’ I told Dr Banerjee, ‘Cancel that’ he said ‘We’ll do all the scans and check that area thoroughly.’
And then I made the link, ‘Shit, what if it has spread to my liver’ I wondered; that would be bad, really bad. So then I had the de ja vu moment, a week of tests and scans and this time waiting for news about whether my cancer had spread and if so to where. Another agonising week passed, a LOT of wine was consumed and then finally, I was in the same waiting room, the same people with me, plus my sister this time who had insisted on joining us and then Jo the nurse called us in. She was smiling, was that a good thing I wondered as we walked down the hall or was that just her greeting me, am I reading too much in to this?
Good news
This time however it was good news, the cancer hadn’t spread, it was in my lymph nodes which we knew about and that was far from ideal BUT the main thing was it hadn’t spread to any main organs so my cancer was survivable, beatable and that was EVERYTHING! It shows just how much my world had changed in the space of the week that my good news that day was just being told I ONLY had breast cancer but that was the reality of the world I now live in, a surreal place, a bit like the one in ‘Stranger Things’ on Netflix where the aliens/monsters suck you in to that dark parallel world.
On one hand I was still Gemma Longland, a married mum of two with a good job and happy life, very boring and ordinary, on the other hand I had been sucked in to a vault of darkness, a world of the unknown, with constant fear and the knowledge that the next few months ahead were going to be utter shite…..but I had to get through it and I was determined that I would.
Gemma’s next instalment is coming soon...
Gemma’s blog is also published on her wordpress site, which you can follow here