my life

Hi my name is Nora and I wanted to start this blog about my life so far in case anyone out there has experienced similar things and needs a bit of positive reassurance. The bottom line is that regardless of all the not so pleasant things I have been through, I love my life. I have spent most of my life as an elusive third culture kid travelling and moving around the world. Though having to say goodbye to good friends every few years really did suck, to me having those memories and experiences greatly outweigh any distance issue that I now have to deal with. Fun stuff aside, like many, I also have my fair share of crazy (and serious) stories from my childhood with the scars to prove them all. Then in my teens things stepped up a bit on the serious scale when I was involved in a bad accident that left me in a coma for almost a week. Instead of making this a full-length life story I thought it best to just summarise my makings and simply say that all of the above have only increased my gratitude for life. While my past experiences surely have helped me deal with the more recent months, nothing really could have prepared me mentally when told I had cancer. It wasn’t the anxiety of treatment or death that got to me; I have always thought I was in tune with my body so the reality that it was in meltdown whilst I still felt healthy was what I found completely baffling. I sensed something wasn't quite right, hence the reason why I kept going back to the doctor, but never did I imagine that I had cancer. With all that in mind, here is my story…


What is Hodgkin’s Lymphoma?
In short Hodgkin’s Lymphoma is a cancer of the lymphatic system: of white blood cells and the immune system. Being a relatively rare cancer with an unknown cause that can affect anyone at any age, it is the most common blood cancer in young adults aged 15-35. If you want to know more about Hodgkin’s Lymphoma including its symptoms, possible causes and treatment please click here.


My Hodgkin’s Lymphoma


Diagnosis
It took me almost 5 months to be diagnosed. That sounds even crazier now considering I started treatment only days after I was staged. I was visiting my parents when it all started. It was close to midnight and I was slightly stressing trying to piece together a work-related meeting for the following day when my hand stopped over something weird on my neck. It was a small painless lump behind my right collarbone that was barely noticeable in the mirror. The dip on that part of my neck was just slightly smaller on the right side when looked at in different angles. My family tried to calm me down by saying it was probably inflammation from a start of a cold. The only thing was that I had no signs of a cold. In fact I hadn’t been sick for ages and was, ironically, feeling healthy and active. For my peace of mind I went to show my neck to the doctor who said it could be a variety of things, most probably an infection or delayed reaction to a past infection and gave me antibiotics in order to check their response. There was no change in the size of the lump after the antibiotics so I was sent to a variety of other tests. My blood work and x-ray came back fine (although I was later told that Hodgkin’s doesn’t show in standard blood tests) while an ultrasound just pointed towards a small abnormal growth without ringing any alarm bells. As I had no other symptoms, exercised regularly, followed a balanced diet and generally felt to be in good health I wasn't really taken too seriously. About a few months in I started to notice a more constant slight pain on my left side near my spleen, but the doctor and ultrasound both pointed to it being a normal pain probably due to a pulled muscle during exercise. Anxious about the lump still being on my neck I was seen by a different doctor through whom I managed to get myself fast-tracked to a specialist. By this time the lump was slightly bigger. At this stage (about 3 months after first feeling the lump) I also started having a pain in my hip that at first felt like a pulled muscle, but the specialist who diagnosed me was certain it was only a trapped nerve. It quickly became a sharper pain that stopped responding to painkillers and led to many sleepless nights. The specialist sent me to numerous tests including a MRI scan, another ultrasound, attempted biopsy, CT scan and a successful core biopsy. All the scans just confirmed growths in my neck, but it was the core biopsy that led to me being diagnosed with Hodgkin’s Lymphoma. Luckily not alone on the day but still in complete shakes and tears, I was introduced to the haematology team who explained more about the next steps and later treated me as an outpatient. The team wanted to get me staged and on treatment as soon as possible as Hodgkin's is considered a fast growing cancer. They did consider me to be lucky that I actually developed a small lump that was easily detected as in many cases the cancer can develop further to become 'bulky' before literally swelling the body. Since I had no symptoms, felt to be in good shape (apart from my achy hip) and because the MRI and CT scans had only confirmed growths on my neck,  I was thought to be at an early stage of Hodgkin’s. I consider it a good thing that while my CT scan only confirmed abnormal growth in my neck, it also showed slight abnormality of unknown cause in part of my lung. This meant that I was sent for even more tests in order to cover all bases and to be staged properly. Before being put on a trial that incorporates PET/CT scans with Hodgkin’s diagnosis, staging and treatment I literally got tested for everything to make sure I didn’t have any kind of dormant infection elsewhere that could result in false staging. All those further tests came back negative. As I had mentioned my achy hip to the new team, who thankfully wanted to leave no stone unturned, I had a bone marrow biopsy done on my achy hip as well. Waiting for the results was probably the most anxious I have ever been in my life. I was in the middle of preparing for taking part in a fashion show the following month so tried to keep my mind busy with more happy thoughts, but no amount of positive thought changed the sensation of someone pushing a stone down my throat when I actually got the call from the hospital asking me to come in to speak about all my staging results and treatment plan. I was out when I received the call and tried to keep myself together before bursting into tears once I got home. I got a weird feeling from the call so decided then and there that if I was found to be at an advanced stage I would spread awareness of Hodgkin’s Lymphoma and share all the surreal moments it brought me. So with little surprise, my PET/CT scan and bone marrow biopsy revealed that I was as at the most advanced stage of Hodgkin’s Lymphoma, stage 4. I was quite numb at this point and just wanted to start getting fixed so tried my best to just gulp it all down without as much hysteria as before. The weirdest thing to get my head around was that I had growths everywhere and that all the previous scans had not detected them. The cancer was all over my neck and lymph nodes around my body, several organs (including my lungs and spleen), and yes in my achy hip bone too! I guess that's the crazy thing about blood cancers, it's a part of everything. It's able to make all of me sick, it's a part of everything that makes me. So much for feeling healthy…I started chemotherapy a few days later.    


At this point you are probably thinking something along the lines of 'sucks to be her, but that won't happen to me', and rightly so. Although young adults are the highest risk group of Hodgkin's Lymphoma, it is a relatively rare cancer so I will probably be one of the few people you will know with a story. There are 2 things I wish everyone reading this blog would take away from it though - spreading awareness of Hodgkin's Lymphoma and appreciating life. So firstly if you know anyone with a painless lump, with or without any symptoms, please get it shown to a doctor. I think my story shows how difficult this particular cancer is to diagnose, so it's always better to be safe than sorry. Secondly, and most importantly, the positive mentality gained through the tears of such an experience is something I only hope will rub off on anyone reading this blog. I think everyone should live and love life to the fullest, regardless of their situations. Check out some of my random thoughts if you agree. 

Treatment
This bit is probably the most difficult part for me to talk about in anything other than a personal manner as anyone who has undergone treatment knows that everyone responds to it differently. I didn’t really have much time to worry about the negative sides of treatment as I got my staging news on a Friday and started on one of the standard chemotherapy regimens for Hodgkin’s the following Monday. Apart from needles poking at my difficult veins that I have never found pleasant, getting the chemo didn’t really hurt much. It was the quite drastic tiredness that followed afterwards that took some getting used to. Different drugs have different effects on people, but in general I think I was ok with them all. I did find the chemo more comfortable on a slower drip as my arm ached almost every time, but luckily slowing the intake helped with that. When I started my treatment I wanted to know more about everyone else’s experiences in more detail so to have some kind of understanding as to what was in store for me. Over the 6 months of treatment I only came across a handful of people who were even remotely the same age as me and only one who had Hodgkin’s Lymphoma. So in case you are anything like me, the below is what I would have wanted to read and know when starting treatment. I hope the below is helpful to you in some way. However, I cannot reiterate enough that this really is an individual experience…one thing I can say I shared with the only other person whom I have met with Hodgkin’s was that treatment got worse over time. On the plus side though, it really does make finishing treatment that much sweeter!!

My not so fun side of treatment - rashes…after my first session I did develop a weird rash on my arm that got bigger within hours. I went back to the hospital that evening and was given antibiotics in case it was an infection. The rash then disappeared within days. The second and third sessions were less eventful, I was just getting used to feeling a bit of nausea for several days after treatment. I also had crazy dark veins, but I was told that can be a side-effect of some of the drugs I was given. Then the day after my fourth session I developed another weird rash. This time it was more localised to my hand and near the injection site only. I woke up with my hand slightly inflamed, red, and achy. The inflammation went down by itself within hours while the redness became even more localised to two points. I was put on antibiotics again in case it was an infection, but they didn’t really make much difference. Instead the two red bits became raised and started to resemble badly burnt skin. It took over a month until my hand went back to normal, with just two small red scars to mark this specific war wound. The doctors I had showed it to along the way said it was either a reaction to my medication or extravasation. Either way not good so I was glad that it healed eventually. All the other rashes I got during my treatment were elsewhere on my body, less severe and luckily went away eventually. I did show all rashes to the doctors so if you’re undergoing treatment do ask for help as some rashes can be a sign of a serious problem. 


My not so fun side of treatment - skin and nails…although all the booklets I read said that skin gets really rough and dry during treatment, my skin actually became super soft. I did use quite a lot of moisturisers as my skin did get a bit drier than before, but the end result was nice (apart from the random rashes mentioned above that is). Check out Dr Organic products, I think they’re really good and have worked well for me. The one thing that I found to be very true was how sensitive to light skin becomes during treatment. I have fair skin to begin with, but I got a slight tan on one of my walks when using SPF 50...in October! So I'm thinking there really is a lot of truth about the need to cover up if having treatment. In terms of nails, my consultant told me that they were the proof of me being on treatment – my nails became covered in white marks. I have always had rather strong nails, but during treatment they became slightly brittle and felt quite rough. The booklets said that nails tend to get darker during treatment, but only two of my nails became slightly darker. I did not want to make matters worse for my nails with nail polish so just got used to my new look. During my last month of chemo the white marks started to grow out and now my nails are almost back to normal. 

My not so fun side of treatment – hair loss…the one thing that seems to happen to everyone undergoing chemo is hair loss, and I was no exception. Within weeks after my first treatment my hair started thinning drastically. Again it is something that I tried to prepare myself for, but until it actually happens you don’t know how to react. Luckily I have always been a fan of wigs so it wasn’t that bad at the end of the day. The strangest thing was waking up every morning to a pillow covered in hair, followed by clumps in the drain after showering and on the brush or hand after touching my head. I didn’t think I had that much hair to lose, but more and more just kept falling off all the time. Once it got too thin to keep long I braided it (so to keep as a reminder) and chopped it all short. Even when it was short it was thinning like crazy everywhere so I shaved it all off a few days later. Eventually I was left with literally just a few strands of hair on my head (stylish, I know). Having previously spoken to nurses and doctors about hair loss, I was expecting (or well hoping) to only lose the hair on my head, but keep my eyelashes and eyebrows. Over the months they both thinned drastically and by the fifth month of treatment I could actually count the number of eyebrow and eyelash hairs I had. By the time I finished my treatment I had a few baby white eyelashes on each eye and no sign of any eyebrow hair. It was strange because I did not think I would miss my eyebrows as much as I did, not having them really made me look sick. I had the seeing is believing mentality and found that making myself not look sick helped me not feel sick, which really lifted my spirits and helped me get through the treatment. I know a few people would agree that my drawn on eyebrows looked anything but natural on days when they literally were all over the place (obviously I am not meant to be a make-up artist…), but at the end of the day it made me feel less sick and I think the mentality of not being taken over by the side-effects of chemo really is a key to getting through it all. I know the idea and process of losing hair is daunting, but the overwhelming excitement of seeing it grow back is one of the best feelings, ever. My eyebrows and eyelashes started growing back (fast!) about 5 weeks after finishing treatment. I literally woke up with eyebrow shadows and short eyelashes one morning. Within a month my eyebrows had fully grown back. My hair is currently growing back and I cannot help but pull a massive grin whenever I look in the mirror!! Life is amazing.

My not so fun side of treatment – food, appetite and weight loss…In case you haven't read my loves section of this blog, I love my food so made sure to read quite a few ‘preparing for chemotherapy’ booklets before starting treatment in an attempt to prepare myself for an adjusted diet. Luckily for me though I was not really put off by any foods during my chemo. Apart from having to avoid foods high in live bacteria (goodbye sushi, seafood and eating out…) I continued eating more or less as I did before. I think I eat quite healthily as it is though, a balanced diet with lots of fruit and vegetables. I do not smoke and am not a big drinker either. I know a bit of alcohol isn’t off limits during treatment, but I only had a few sips of alcohol (as toasts) during my whole treatment and felt better for it. My appetite became a bit smaller, but I did find that having food regularly, especially after treatment actually, made me feel better by giving me more energy while bringing some life back to my face. I did get some urges to eat even more fruit, vegetables, meat and protein. During the first months of treatment I didn’t feel like cooked fish at all and meat only a week after treatment. Then about halfway through chemo I started eating cooked fish again and started having meat cravings, especially after treatments. I have been lactose intolerant for years, but found that even eating lactose-free dairy products gave me bad cramps. The same started happening when eating foods high in gluten and wheat. I found that I felt best and had most energy when dropping dairy, gluten and wheat from my plate. I am now experimenting with even more free from creations so check out some of my recipes if you’re interested! In terms of weight, I did not have any weight loss until over halfway through my treatment. I am not sure if this was due to treatment (supposedly chemo can make people lose or gain weight) or solely due to cutting gluten and wheat from my diet, but either way I lost over 5kg and dropped almost two dress sizes.

My not so fun side of treatment – being sick…although I suffered from neutropenia and had to inject myself with boosters every two weeks in order to continue treatment on time, I luckily didn’t catch a cold during my treatment. I did get a cold within a week of finishing treatment, but got through it fine and have been able to avoid catching another one so all good on that front so far. In terms of being sick as a side-effect from the chemo was another story. I started my treatment without really feeling any nausea during treatment and took several anti-sicknesses for days after to keep the slight nausea that followed at bay. For the first 4 sessions it stayed like that. As I was part of a trial my medication was slightly changed after two months of treatment so this could have caused some of the nausea. That or my body was starting to have enough of the toxins. During my 5th and 6th sessions I started feeling nausea during the end of treatment, especially when the drugs were flushed through my veins. It felt like my throat swelled up and I found it difficult to breathe. The doctor didn’t feel anything unusual during inspection and as I felt fine once I got back home I didn’t really think much about it. After my 5th and 6th sessions I also started to notice that I actually felt better without taking the anti-sickness medicines after leaving the hospital. However, during my 7th session the nausea got a lot worse halfway through the chemo and I spent the rest of my session throwing up. As it was the first time that I had actually been sick I decided to take anti-sickness medicine once I got home to be sure I could actually keep my dinner down. Unfortunately things didn’t really go according to plan and not long after taking the anti-sickness medicine, ironically, I started throwing up again. This was, luckily, the only day I was sick outside of the hospital. It wouldn’t have been as big of a deal to me if it hadn’t been my sister’s wedding the following day, something I had helped organise since before I was diagnosed. Having not had any food stay down the day of treatment, it took me 30 minutes to eat a banana and half a piece of toast for breakfast the following morning. Fortunately the power of determination rescued me and I got through the wedding fine. As I hate vomiting I asked the doctor to make sure it wouldn’t happen at my next session. I thought there was a level of control over the nausea so it was more the surprise that got to me during the next session. It still feels a bit surreal to think about my 8th session, but in short it was horrible. As per my request my anti-sickness was changed, but as I got hooked up to the IV before given the new medicine (that was not intravenous) I threw it up within 10 minutes. I wanted to stay on track with treatment so after I was given a variety of other anti-sickness medicines my chemo started going in. I kept throwing up roughly every 10 minutes until one of the anxiety medicines I was given kicked it. That made everything even weirder as I became completely drowsy. Although it slowed down the sickness for about 30 minutes, it awkwardly made throwing up more slow motion. After about an hour I went back to vomiting every 10 minutes. This continued for about 7 hours in total. As I found throwing up bile for hours to be quite painful I spent the night at the hospital in order to stop being sick. This did include another anti-sickness that literally made it feel like the nurse was pulling out and chopping my veins, but eventually I stopped being sick so hooray! I suppose chemotherapy is known to cause bad nausea so it was expected on some level, but the experience is never much fun. For my 9th and 10th sessions I was given a different combination of anti-sicknesses which luckily worked fine. For my 11th and 12th sessions (last two!) I was sick towards the end again, but was mentally ready for anything as I was so close to finishing. Even though I was sick during both of them it didn’t really bother me as much as I was expecting it to happen to a certain extent. Especially as it was nothing compared to my 8th session. Plus the countdown to finishing was still on! I suppose being more mentally prepared for bad nausea and vomiting is better than assuming that it won’t happen. Having had very bad food poisoning once on holiday that left me out of action for almost 3 days made me think that my chemo induced nausea wasn’t actually that bad. After all it’s only a phase.

My not so fun side of treatment – tiredness and exercise…if you are a young adult diagnosed with cancer, dealing with the tiredness caused by treatment will probably be the most difficult thing you’ll have to come to terms with. The week after treatment was always worst for me in. Not only was the slight nausea slowing me down, the fact that the chemo gave me neutropenia really didn’t help much on the energy front. For the first months I would sleep a few more hours each night for about 4 days after treatment, but got more energy after the boosters. Towards the end of treatment I would easily sleep for half the day the 4 days after treatment before having enough energy to do anything. I even found the boosters to not give me as much energy as before. After finishing treatment I was very tired for about a month, but then slowly started getting more energy each day. I did find a combination of rest and exercise to increase energy levels, so having an onwards and upwards attitude is essential! In terms of exercise I can only say try to keep as active as you possibly can. I loved doing Zumba before treatment, but as my hip ached quite a bit and my energy levels dropped, I switched to yoga pilates during my treatment. I found this to give me more energy along with keeping my muscles active while helping balance out my less active long sleeping hours. I also made sure to go for at least one long walk a day. I found doing at least an hour’s hike outside (especially on the beach or forest with lots of clean air) to be a perfect way to get fresh air and some exercise without an increased risk of catching someone else’s cold. I did a few long bike rides as well when I had more energy, but did feel the rough routes on my hip and side so if you’re extra achy it might not be the best option...I did notice that exercise and just general moving resulted in increased sweating, especially days after treatment. Not really the most pleasant thing looking like I've ran a mile when I totally hadn't, but stage 4 chemo is quite harsh so I suppose the toxins have to come out somehow. I still think that moving around as much as I could definitely outweighed this as it made me feel so much better. The one thing I did find a bit difficult to adjust to was that my mind was a few steps ahead of my body. That’s when the frustration of tiredness really kicked in. Although I found it really important to rest lots and felt much better after a good night’s sleep, getting some kind of compromise between my mind and body was really important. I found this by being as active as I had enough energy for. Doing things and trying to live a normal life also made me feel less sick, a mind-set I found to be very important for getting through it all. The simple words of “Nora, you’re not sick” from an old friend who came to visit during treatment helped me remember that there are two ways of going about situations like this: either give in or rise above it. Giving up isn't an option if you don't make it one. After all, everything is life is a choice.

My not so fun side of treatment – emotions and such things…I am not sure if it was because I read that the chemotherapy drugs can have emotional effects, their actual effect or just the emotional roller coaster I found the whole experience to be in general, but I really was an emotional wreck at times. Not only did going to the hospital tend to get me slightly teary eyed for no reason (I’m thinking it was either the simple fact of having cancer or from being in a coma/intensive care years back); even some of my later chemo sessions randomly got me crying. Then the funnier emotional times were when I cried at random things I heard, said and saw. I understood why it hit a nerve when watching some more emotional tv shows and movies, even after watching just the trailer for the movie 50/50 when he gets diagnosed with cancer (the "I don’t smoke, I don’t drink...I recycle” bit gets me), but when it came to crying over things like dog food adverts I seriously had to reconsider my justifications. The same thing was with mood swings as I had some bad temper tantrums. A few were for the most random reasons to say the least and that is when I would get really upset with myself for not being able to control my emotions better. I understand that anger can be one of the natural responses to situations like this, but the more I thought about it the less I found it appropriate. Who was I supposed to be angry at? There is no single cause for Hodgkin’s Lymphoma except living and I’m not the type of person to regret living and loving my life. I think anger is a very dangerous emotion to feel in this situation as it will probably wreck relationships and lead to bitterness. I personally found the general frustration of tiredness to be hard enough to handle. At the end of the day I was able to continue living life for the most part, I just had to avoid crowds, traveling, air-conditioned places and catching a cold basically. On a scale of things it can only be considered luck to be diagnosed with and get treatment for one of the more curable cancers out there. Although, being surrounded by incredible people who supported me through it all was really my luck. 

After treatment
Although I was sick during my last chemo session and completely tired out by the past months leading up to it, I thought it only appropriate to do a little victory dance leaving the hospital. Not having to go to back for weeks until my first set of tests and scans was a great feeling to say the least! I did have numerous tests done after finishing and the process was strangely the most emotional of any of my tests so far, but my third PET/CT scan came out clear!! My 3 month scan also came back clear so I am very relieved to say the least. Regardless of the good tests and scan results, I still have a split second panic pause whenever I feel a random slight ache or pain, but have been told this is a common emotion of cancer patients post treatment. I know that I will be going back to the hospital for tests over the coming months and years to make sure I stay in complete remission, and that my emotions will probably get the best of me at times. I am also aware that chemotherapy, as well as all the scans I have undergone over the months, does pose a higher chance of secondary cancers down the line, but all these facts really don’t lessen the bliss that is life. On the contrary, they only make the current moments that much more important. So if you have read until here I only hope that you agree with me that life is for living, regardless of the cards in your hands. The occasional tiredness and aches aside, I feel well and am only having fun tackling my ever increasing bucket list head on!! 


The fun side of finishing treatment – hair growth! I know I have mentioned this above, but feel it is really that important to mention again. If you are having treatment you probably cannot wait until the day your hair starts growing back, and rightly so. It is one of the most amazing and overwhelming feelings I have ever felt. When you spend months coming to grips with your body being tormented with toxins, there is a level of disbelief that things will ever go back to how they were before. That is probably why it is so incredible to notice hair growth afterwards. My few strands of hair that were left on my head during treatment did seem to grow during my last few treatment sessions, something I was told was quite usual. It was probably because of it that I was then slightly disheartened that nothing seemed to happen for 5 weeks after my treatment had finished, but then it all started...One morning I woke up with a few bits of eyebrow stubble and what looked like a darker eyelash or two. The following week the stubble had created complete shadow eyebrows and a thin line of darker eyelashes on my top eyelids appeared. That week was only made better by noticing my first tuft of darker hair on my head!!! The excitement was overwhelming to say the least, so I did a very happy laugh/cry combo. Within the following 2 weeks my eyebrows were full grown and I definitely had dark eyelashes starting to make an appearance. I am not sure if my eyelashes are at their full length yet as they seem a smidgen longer each week, but either way I have eyelashes again! My hair growth then went from one tuft to numerous tufts, to a shadow of hair by the time my eyebrows were full grown. I tried to even and encourage the hair growth by trimming my head every few weeks, and cannot complain about the results. It was like each day new hair would pop out making the shadow more dense, and my smile even bigger. If there is one thing I would suggest to anyone who is waiting for their hair to grow back is to take photos as often as possible. It might sound a bit crazy, but it is so worth it. The evidence of life you will record is incredible. My hair has been growing for months now, but it still looks different every day. So get your smiles (and camera) ready if you’re waiting for your hair to grown back and be prepared for life to be amazing! 


The fun side of finishing treatment – more energy! As anyone undergoing treatment has probably realised, and as I have mentioned previously, getting used to low energy levels due to chemotherapy is one difficult thing to get to grips with as a young adult. I for one can say that my mind was constantly a few steps ahead of my body, so when my energy levels began to return was another cause for a little dance. For the first month after treatment I was probably as tired as I had been a few days after treatment. I just needed lots of rest. The second month I started to get a bit more energy. The third month I was still quite tired at times, but had a lot more energy than the previous months. I was able to actually have enough energy to do all the things I wanted to do in a day. After about 3 months I literally just woke up one morning and felt like I could do anything. I increased my workload and even randomly decided to go climb a (small) mountain! (check out more details and some photos of the climb from this link) It felt quite surreal in a sense since I had only finished my treatment a few months back and not had as much energy the previous weeks, but where there is a will there is a way, right? Since then I have been trying to keep myself busy and active. When I do overwork myself my sheer tiredness reminds me that I actually am still recovering. I do find ample rest and sleep to still be very important so think finding a good balance between relaxing and being active essential. I am still cautious about things, but I do believe that moving gives me a lot more energy so I say just go out and explore to get even better energy levels. The way I see it the more I explore the more energy I have, and the more I live and love life.