"I’m aware that I haven’t posted for a long while, and a lot of you are probably in the dark about exactly where I am in my treatment now. Well, unfortunately this post isn’t going to go into much depth about my treatment and how it itself is going, because for me right now there is a more pressing subject matter, that pervades my daily living to a much greater extent than my chemo administration does.
Really, the two are closely linked; in fact the subject matter has been manufactured from what now is over a year of what feels like constant wearing down, pummelling and to put it frankly, absolute shit, finished off with this final winding from chemotherapy. Because now, in the lead up to my fourth cycle of chemo, I feel like that inner strength that has been pushing me through, making me grit my teeth and stand once again after this diagnosis has kicked me down to the floor for the umpteenth time, has gone. I feel broken. I feel tired. I feel done.
If you haven’t guessed already, this post is about mental health, specifically chemotherapy and mental health. These aren’t things you really hear talked about in conjunction, or at least I wasn’t particularly aware of the mental fallout from chemo before all this started. I knew chemo makes you feel like shit – everyone knows that – but I did not realise the mental, the emotional, toll it would take on me. I did not know that for many, chemotherapy affects their mental health just as much as it affects their physical health.
I don’t have a history of mental health problems, at least not diagnosed. I do know there was a period of a few months, towards the end of my second year of university edging into the start of my third, where I should have taken the initiative to go and get mental health help. It was a time where I felt dark and sad, and I began not to care about things or, at times, not even want to get better; there was a comfort in the lack of motivation, in the way that I didn’t give a toss about getting out of bed. It was a time where I would cry much, much more than is healthy, when a few times I even stole myself away from family dinners in restaurants to cry in the toilets, for as long as I could without arousing suspicion, for no particular reason.
In the end I spoke to my mum about my feelings, when I broke down in tears during a family friend’s birthday party, and I did speak to my GP about it as well. It was something I was very nervous about talking to my GP about, and unfortunately, despite the fact I had felt like this for a good few months, I felt that he played down the whole issue, explaining away that it was just a reaction to some shitty boyfriends – as if that meant because there was a reason for it, I didn’t need help. I felt very let down, almost helpless as I shut up, shut down and walked out of that doctor’s surgery. But, although I still feel his response was dangerously lacking, perhaps he was right to an extent as eventually, a month or so before all this sarcoma business began, I began to feel better.
Me literally minutes after arriving home from Stanmore after my surgery. I struggled with my mental health whilst I was there but getting back home and putting space between myself, the hospital and my surgery helped enormously.
And I had felt better until very recently. Despite all this physical illness, I had not felt mentally ill apart from that brief spell in Stanmore, where I was diagnosed with post traumatic stress disorder. Bizarrely, receiving this diagnosis helped because it explained to me why I was feeling the way I was. I wasn’t being wimpy, feeling sorry for myself or just being down in the dumps over an operation I should have been feeling thankful for; I was actually suffering from a mental illness, and that diagnosis could be worked with. I suppose it’s much like having physical symptoms without receiving a diagnosis; you begin to wonder whether you’re being overly dramatic, and it’s scary because you wonder whether there will ever be an end to it.
I began to feel mentally healthy again soon after leaving Stanmore, and after experiencing how low I felt, how full of self loathing, grief and apathy I was during that brief period where I terrifyingly spiralled daily, I was determined not to ever find myself in that situation again. So when we went to Jacksonville for proton therapy I ensured there was a sturdy support system set up for myself, and that there would be a psychologist there who I would have access to should I need it, which I did almost immediately.
Myself with my nurse and doctor on my right, and Heather my social worker on my left. She organised my psychology sessions in Jacksonville and I couldn’t be more grateful to her for that.
I spoke to my social worker in Jacksonville, Heather, within the first few days of arriving there the second time about my concerns. Heather was an absolutely fantastic support throughout both trips, and had helped get us through that impossibly difficult weekend when we were there the first time, when we waited to hear from the English team whether my tumour was operable or whether I had a 25% chance of survival. I knew I could rely on her to get me the help I needed, and unsurprisingly she came through: Heather organised regular psychology sessions with a lady she knew from university, who she thought I would work well with.
Carol and I, after our last appointment. I was absolutely dreading not being able to continue seeing Carol when I left, and I would strongly advise anyone within a 100mile radius of Jacksonville to start sessions with her!
From then on in I began to see Carol Lahey every week, and the positive influence she had on me over those eleven weeks was absolutely astounding. We worked together on various different issues I had, but the best thing was that it never felt like work. I would just sit and talk about what was bothering me that week, and I can’t even particularly remember her saying much, apart from a few instances when I directly asked for advice or she prompted me to think about things from other perspectives. It was the one hour a week that was medical but felt solely about me and nothing to do with sarcoma. Sure, we talked about my diagnosis, but everything we spoke about revolved around me in a way that none of my other treatment has.
One of the reasons I was so nervous about leaving Jacksonville was because I was devastated about having to leave Carol. My sessions with her transformed me from someone who was nervous, scared of my situation and upset about so many things, into someone who was confident and comfortable, and I was able to accomplish things I never thought I would be capable of. I spoke at the Lunch Bunch, the regular weekly lunch for those going through proton treatment, their families and those who had finished proton therapy, no matter how long ago. There were a few hundred people there and, for me, someone who is terrified of public speaking and had the year before at university shaken, felt sick and hated every second of presenting in front of ten of my peers, that was an amazing achievement and one I am proud of.
After my last appointment with Carol, my mum and I went to St Augustine, one of our favourite places and America’s oldest town. As you can see I was happy slappy as I had just finished a session with Carol and I would always feel great about myself after seeing her! (I hope this doesn’t sound too much like I have a weird obsession with her).
During my last appointment Carol told me to ensure I keep seeing a psychologist each week, however since arriving home I have seen a psychologist only twice: once just before my first round of chemo, and once during the administration of my third round – the round before the one I have just had. During my second session I told my psychologist how much I was struggling mentally, and she agreed that compared to our previous meeting I seemed a lot more downtrodden, a lot less positive and generally mentally weaker. I also managed to see a psychiatrist this cycle, who I cried big ugly tears and sobs to, but who has helped me massively even within the few hours I spent with her.
This lack of psychology appointments isn’t anyone’s fault, it’s mostly down to the travel time to UCLH as due to chemo I am too tired to journey up there each week on public transport. I am not blaming this for the deterioration of my mental health in the past weeks, but I do think seeing a psychologist regularly would help me, and luckily for me this is being set up.
I spoke to my chemotherapy consultant about my mental state and she told me that one of the chemotherapy drugs I have, Ifosfamide, is known to mess with your head. Knowing the cause helps me to hope this is temporary, but it does not make the mental struggle any less difficult or any less painful. Since the first cycle I have felt the effects, but it became a real struggle during the three week recovery period after my second round. Things felt stagnant, like I wasn’t getting any stronger as I was kept glued to the sofa for far longer than I had been post first round, due to my low haemoglobin count. I was anaemic and exhausted, and whilst everything about the administration of my first round had been absolutely awful, the most ill I have ever physically felt in my whole life, the second round was more about the slow slog back to health in the two weeks that followed administration. This lack of improvement, on top of the drugs themselves, took its mental toll and I began to feel lower and lower.
Me looking and feeling like shit, but at least getting to watch Game of Thrones for the first time.
And as my mental health crumbled, my ability to deal with the physical fallout from chemo faltered. The mouth sores that striped each side of my tongue yellow stung and burned with pain more than they should; the exhaustion that should have meant instead of venturing out I just invited others over to me kept me hidden inside alone.
As the third round was administered I spoke to my psychologist about how downtrodden I felt. The burning hope that is so crucial to dragging you through treatment had been extinguished by the Ifosfamide, and I didn’t know what to do. I needed to get out, but I couldn’t and I felt attacked from all sides. I would sit with my head in my hands pleading under my breath for just one thing to get better, just one thing, and then I could do better.
This pic is a bit gross as it is literally my bloody pee in a catheter. Every time I got up on my third cycle, I would start peeing blood and this didn’t let up for days. This problem is why I am always kept in hospital for so long and why I am hospitalised for chemo.
Unfortunately nothing let up and everything that could have gone wrong went wrong during the stay in hospital, and I was in no way equipped to deal with it. I was in hospital from the Wednesday to the Monday, and each day brought me lower and lower. A friend came on one of the days and that kept me happy for as long as he stayed, but apart from those hours, most were spent sleeping or weeping.
All I wanted was to go home, and finally on the Monday afternoon I was discharged. My parents and I were due to travel home in a taxi, but too many laxatives mixed with my incontinence left me terrified to stray from the toilet, particularly driven by someone who didn’t understand the situation. This was too much for me to handle and I broke down on the toilet, sobbing until my mum came in and hugged me close – there’s nothing like a bit of mother daughter bonding on the toilet to finish off your round of chemo.
Things took a turn for the worst over the last three weeks as I dipped significantly and felt, for the third time in my life, that thick, grey cloud of gloom set in even darker and colder than before. For me there is a heavy correlation between time spent in hospital, particularly overnight stays, and how low my mood is. Since my third round began, that is Wednesday 13th April, I have spent a grand total of five days completely hospital free. It has been too much to deal with.
When we were in Jacksonville, just before we left my mum and I went to Magic Kingdom and I walked around practically for the whole day, rarely needing my wheelchair. I had no problems handling my incontinence and the whole day was completely brilliant. Now I need a wheelchair to go to the supermarket and many days I can’t leave the house because of the drugs I am on, mixed with the incontinence. It is hard to keep my head up and keep going when I can feel myself slipping backwards, and I can see it in photos of me from the last few months. I know people keep saying a lot of this is the chemo, but that still means I have another nine weeks of it to get through and what happens if things don’t magically go back to how they were before chemo? It’s getting hard to remember what it was like to be able to do things like this, to not be in pain or in constant fear of pooing myself when I stand up.
I began to feel permanently on the verge of crying, uncontrollably spilling over into tears, which in turn spilled over into heaving, committed sobs multiple times a day. The slightest thing would send me over the edge, often it would be nothing at all. Friends visited during one of my hospital stays and I cried to all of them. I have felt like I have been going backwards, everything has been getting worse; my pain has rocketed and my incontinence, something I was getting to grips with, has been getting the better of me as I am so heavily constipated I am having awful stomach pains and more accidents, each of which leaves me feeling exhausted and broken just as I was at Stanmore.
Then, on Friday, I had a particularly bad appointment with one of my surgical team from Stanmore. He did nothing wrong, in fact he has been absolutely amazing and is so kind, but it was just crappy news on top of everything else. Since then, my outlook on my difficulties since surgery has shifted, for reasons I may or may not go into at some later stage. The situation itself hasn’t changed, but the reason for the situation is drastically different. I was aware I had been dealt a shit hand, but prior to this appointment it was, to the best of our knowledge, an unavoidably shit hand that I was proactively trying to make the best of, by taking these problems, these issues, and making them my issues that I would do something with, even if I was powerless to do something about them. Now, things feel pointless and needless. I have tried constantly to make the best of each situation, but sometimes no good can be made of something; some news you are told you take, you absorb and you slump, defeated.
I am finding it harder and harder to imagine getting back to doing things like this with my friends when I am so weak right now. I feel like a totally different person, almost as if there is nothing connecting me to the person in this photo.
Like I said, the situation has not changed, I am still disease free as far as we can tell, but my whole life feels pointlessly ruined by someone I trusted and thanked because of this new information. I don’t feel angry, I just feel so let down, and now when I look at photos of me before, me happy and doing things I loved to do, I don’t feel elated or joyous. Or I do for a few seconds, then I feel changed for the worse in every way, different, alone; I feel grief. I am grieving and it hurts like physical pain. My mum said to me when she was on chemo that her memories pulled her through; mine don’t. My memories disappoint me, they make me wish I was back in the past; they don’t make me excited for the future because even if I get back there, back to that beach drinking that cocktail, if my nerve issues don’t improve, which there’s a good chance they won’t, it will always be that little bit worse. I will have always lost those things, and so how can things be as good when you are less than you were? They cannot.
I keep coming back to photos like this one, of us on holiday before my surgery and feeling absolutely devastated. I miss being that person and I often don’t feel I can be again. Like I said, even if I can get back there, I have so many nerve problems which cause such significant issues, I don’t understand how it can ever be as good? Things have been taken away that I might never get back, so how can it be? I just find myself wishing I could go back and do this holiday again, because I was so happy and things felt easy.
My psychiatrist and mum say I’m grieving, and that this is a normal and natural process that I shouldn’t resist. All I know is the grief process takes time, and I am too tired emotionally and physically to keep on feeling like this; I do not have the strength.
It has been difficult to deal with this mental fallout from chemo; I have felt pathetic at times reacting in this way, particularly this round when I have not felt anywhere near as physically ill as others, or even as physically ill as I have done in previous rounds. I have questioned over and over again what I am even crying for, why I am feeling so mentally weak when there is nothing really wrong with me. Whilst others have been passing out, losing significant amounts of weight, vomiting constantly, I have had a relatively easy time on chemo physically. My mum has each time told me that this is how the chemo has affected me, that perhaps physically I have not had the same issues, but it affects each of us differently and obviously the Ifosfamide has for me taken the biggest toll on my mental health.
It took many more rounds of tears than I have had chemos for this to begin to set in. Only in the last week have I began to believe her, believe that perhaps this was more than me being overly dramatic or pathetic or wussy. Over and over again my mum asked me why, as someone who places such a high importance on mental health and someone who is a firm believer that it is just as important as physical health, I could not believe that my mental health was compromised as a result of this chemo. My dad insisted repeatedly that chemotherapy is poison, and so of course it would affect my brain.
I agreed with them each time, but something within me, something dangerous and destructive that for some reason wanted me to believe that this was just me being weak and pathetic, whispered that I did not have a mental health problem, I was just bad at chemo. Luckily, I have parents that have held me as I have sobbed and patiently emphasised the words of my consultant, gently spoken their own words, until they began to sink in.
I have realised that this chemo may not be so much of a physical battle for me as much as a mental one. Some have sickness, others exhaustion, mine is depression. Even before seeing my psychiatrist on Wednesday I had worked out that my current state had to be something more than just feeling a little low. I had checked the NHS website for the symptoms of clinical depression: Continuous low mood or sadness, check; feeling hopeless and helpless, check; feeling tearful, guilt ridden, irritable, intolerant of others, having no motivation or interest in things, finding it difficult to make decisions; check. But despite reading about the symptoms, I was nervous to diagnose myself with a mental illness, just as I would have been with a physical one. But my psychiatrist confirmed my suspicions and told me on Wednesday that I have moderate depression, a diagnosis that having received I feel somehow less upset and pathetic about my weakened attitude towards things at the moment.
Since the chemo and hospital stays which make me feel worse aren’t going anywhere for another nine weeks at least, I need to find a solution elsewhere. My psychologist mentioned antidepressants last time I saw her and was going to speak to the team of psychiatrists to get a weigh in on that. My psychiatrist on Wednesday agreed and recommended I begin antidepressants on Monday, a few days after chemo round four was finished being administered. She told me however that these drugs can take up to four weeks to start having a positive impact, can make you feel a little worse at first and do not work for everyone. In other words, antidepressants aren’t a magic wand you can wave to replace those grey tinted glasses with more optimistic rose tinted ones. I will need to be monitored closely for a good few weeks after I start these meds because of the negative effect they can have on you at first, which does make me a little nervous, but I already trust my psychiatrist and agree wholeheartedly that this is for the best
However, despite not even starting these antidepressants yet and after only a few hours of talking to my psychiatrist I feel better about the situation because I feel like I am being listened to. Up until the last few days, I could feel my mental health deteriorating scarily rapidly and I felt like nothing was being done. My health professionals were all lovely and supportive, but I began to feel like everyone apart from my parents were so intently focused on my physical health throughout chemo, that each time I desperately reached out for help by mentioning my fears for my mental stability, I was just met with lots of “oh no, you poor thing”s. I basically felt like all the right noises were made each meeting without any plan or firm mental health support being put in place. Now, I am not scared anymore about how low I may fall because people who can help know that me falling is a very real possibility. And these are people that will help to pick me up, shake me off and support me through the coming weeks or months.
In Jacksonville, my psychology sessions were in this house away from the hospital. I would go in, talk over some issues with Carol and then my parents would always be waiting for me in the reception with a hot, buttery French Toast bagel. No wonder I used to look forward to my sessions! Having my psychology sessions in England away from hospital, just like in Jacksonville, is so important to me.
On top of the antidepressants we are rapidly trying to organise a weekly psychologist away from hospital, just like in Jacksonville. I can feel that I need a break from the barrage of medical appointments and problems because the last couple of days before chemo round four were spent away from hospital, and they felt noticeably lighter, more breathable; I felt more stable. Unfortunately this much needed recuperation will not come for a while, maybe not for months, so I think that in the mean time the alternatives above are so, so crucial to my wellbeing.
I realise this is an extremely long post but just to finish I want to explain the reasons I am writing about all this. The first is, as I mentioned at the start, that mental health and chemotherapy are not often two things talked about in conjunction. My medical team sat with me for hours before I began chemo explaining the risks, dangers, side effects, but not once was mental health mentioned. Yet funnily enough, when I started struggling and asked directly whether the chemo can affect mental health, my consultant told me that Ifosfamide often has this effect on patients and can really mess with the head. I don’t think it was okay that this common side effect was omitted.
The second is that this is something I am really struggling with, and since I have vowed to be as honest as I can be with all aspects of my diagnosis and treatment I wanted to include this post to emphasise the point that mental health is just as important as physical health. I will not pretend to be getting through chemo well or pretend that I feel good when I’m not, because this does no good, not for me nor for others who may be struggling with this sort of thing.
And thirdly I wanted to write about this because this is a very much behind the scenes version of me. I am honest with my blog, but when I leave my house to go out – and I realise that is quite the rarity these days – I plaster on a smile and brave out running into those I know. And until very recently, when my mum and I made a conscious decision to tell people the hard and often uncomfortable truth rather than responding, “Good thanks, you?” when they ask, “How are you?”, we would let nothing on in conversation.
There seems to be this weird thing where it is okay to admit the physical struggle during chemo but hush and hide away the mental, and I think that extends into life. Mental healthcare and acceptance of the importance of mental health has gone on leaps and bounds but there is still a lag that is felt. Or at least I noticed a lag when it came to accepting my difficulties were due to mental health, not weakness or otherwise. So from now on in I will try to be more accepting of my mental struggles and not punish myself for them, like they show some chink in my character. Whilst that may not make them easier to overcome, I hope it will make me wholly less destructive, harsh and critical. Basically, I am ready to work with me!"
