Chapter 16: The worst news…

You probably think that there is nothing worse than being diagnosed with cancer, and if you had asked me a few weeks ago I would have agreed with you, however this past week has taught me otherwise. What’s worse than being told you have cancer you ask? Being told that your cancer hasn’t responded to chemotherapy. Yep. And let me tell you it doesn’t get any easier to hear these kind of things. 

Let me backtrack a bit to explain things. Halfway through my chemo, I had a CT scan to check how things were going (this is common practice) and it showed a great response. Just a small amount of tissue left in my chest, which they had assumed and hoped was scar tissue, and practically no tissue left in my abdomen/pelvis. Second half of chemo went ahead like normal and with my blood levels all within ‘normal’ range and me as healthy as can be expected, after my last chemo on the 25th of October I was sort of discharged from my consultant (not fully of course, but no need for weekly checkups), again this is all standard procedure.

Fast forward to a week ago, and I started having some abdominal pain and discomfort again. Immediately, I knew that it was the lymphoma; call it instinct or intuition, or maybe just common sense. I mean what else was it likely to be? I left it just over a week to see if it went away, I thought perhaps there’s the tiniest outside chance that it’s something I’ve eaten or a pulled muscle, but it didn’t and so Wednesday I went to see my GP and things moved pretty fast from that point. My consultant saw me later that day through A&E, admitted me to hospital that evening to get a CT scan done the following day; he didn’t say implicitly at that point what he was thinking but we all knew.

Thursday I had the CT scan and was told that they were going to do another CT-guided biopsy on Friday (more of a legality than anything, they know exactly what it’s going to be, diffuse large b-cell lymphoma, but they have to by law before any new treatment is started). The biopsy was uncomfortable, but by no means the worst thing I’ve endured so far; the safest mass to biopsy this time was the one in my pelvic region rather than the one in my chest like back in March, and I was told that they would have to go in through my butt cheek. Ouch. An arse cheek full of local anaesthetic is not the one. That went ahead without a hitch, just one sore half-arse. Later on Friday, I was given a new PICC line (my third central line, second PICC line) by one of my lovely cancer nurses from my unit, but having already had 2 lines previously it was a walk in the park. The one that was in my right arm (this new one is in my left) was only taken out a month ago! Bloody Sod’s Law.

Then a few hours later my consultant came to my room to have a proper chat about things. There’s no beating around the bush really, and I’m glad my consultant says it like it is; this is not good. The lymphoma has grown back quickly and aggressively since chemo has finished. This means that it was (or is I guess) resistant to chemotherapy. Now they are going ahead with something that I knew was a possibility from the start, they call it salvage chemo, chemo they try when standard treatment doesn’t work. It’s all very rushed and so it’s been a bit of a whirlwind really, which is good, I don’t need time to worry and think, I like to be busy and be busy having treatment and such. 

As far as I understand so far, this next type of chemo (which is going to start tomorrow; when I say they have moved fast around this, I mean it!) is completely different drugs to what I’ve already had. It is called GDP and consists of high dose prednisone (a steroid) and gemcitabine and cisplatin which are chemo drugs. It’ll be delivered on day 1, and day 8, and then repeated on day 21, as long as I have recovered in time. I’ll have 2 rounds of this, then a repeat scan to check how things are going. If it’s working I will then have BEAM chemotherapy (which again is just another combination of drugs) for 6 days, followed by a stem cell transplant (of my own stem cells hopefully) to re-seed my bone marrow after this extra strong 6 days of chemo virtually kills it off. I’m not really sure on the timescale of these things, my wonderful consultant will be planning these things out as I type, that’s his domain and expertise and I trust him implicitly.

So, the shit side of things. This GDP chemo has about a 50% chance of working. Which is f*cking shit, let me be the first one to say that. If it looks like it isn’t working then I will be eligible for a very new, just-on-the-horizon treatment option called CAR-T therapy. But let’s cross that bridge if/when we get to it. 

I know everyone’s response to this news is going to be to want to message me with “I’m sorry”s and sympathy, but please don’t. It does not make me feel any better about this situation and it certainly doesn’t help it. It is something I have zero control over and you telling me you are sorry does absolutely nothing other than make me feel crappy. I intend to carry on with the same positivity and brightness as I have all year, taking each day as it comes. So please, by all means, message me and talk to me about this, but keep your sympathetic smiles and your “sorry”s to yourself please, and just talk to me like you always have! I’m still the same stubborn, strong-minded Lucy, nothing in the world will change that!

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Chapter 15: Things cancer has taught me…

I can’t sleep (chugging a litre of coke at the cinema pretty late tends to have that effect), so I thought I’d write a little on a topic that I’ve been thinking of a lot lately.

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I guess it’s odd to think of cancer as being beneficial in any way; it’s pretty detrimental by nature, but it does cause us to take stock and examine our lives with scrutiny, and let me tell you, a brush with death does wonders for reevaluating things. So here are some things cancer has taught me.

I am strong.Β Tell a girl she’s got cancer and you expect her to just crumble and dissolve. This didn’t really happen to me. I mean the initial conversation was pretty horrific; the kind of wording that makes your heart jump into your mouth, all sound in the room disappear and time stop, but after a few minutes of hyperventilating and feeling like someone had whipped the chair out from under me, I just sort of got on with it. Somehow I even fell asleep in a hospital ward and woke up the next morning to a completely different life. I’ve always been the type of person who is good in a crisis; I’m very good at viewing a situation objectively and seeing what needs to be done and with my own situation things were no different. I endured 7 months of horrendous high-dose chemotherapy, feeling iller than I thought was ever possible, multiple procedures that I wouldn’t have wished upon my worst enemy, giving the complete autonomy of my body over to other people, but I’m here, at the end of it, having been told time and time again just how positive I stayed. And I’m so bloody proud of myself for that.

I am confident.Β This is another strange one for me really. I wouldn’t have said that I was lacking in confidence before my diagnosis, I was comfortable with the person I was and I paid no attention to what others thought of me, but there is confident and then there is going out in public with no makeup and no hair confident. I can still remember the first time I went out without a headscarf on, it was to a B&Q (how glamorous) to buy a parasol (cheers chemo drugs for making me extra sensitive to the sun on the sunniest summer in years) and it felt so invigorating. I felt so powerful; a force to be reckoned with. After a few more trips out I even became so bold as to pull faces at the people who brazenly stared without trying to hide it (come on, we all know how to look at someone without making it look like you’re looking) and now I’m so used to seeing myself with little to no hair, that I’m going to keep it this short out of choice now that it’s growing again. I love this confident version of myself who feels feminine and sexy with what the world would deem a ‘masculine’ haircut.

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I am fearless.Β As for the fears part, I suppose it’s a bit like CBT; being forced to face your fears is a bloody good way to get over them. I wasn’t a particularly fearful person before, I did, however, have a few irrational fears instilled by an anxious mind and confirmed by panic attacks. If you’ve never developed an irrational, illogical fear, for any reason, then it’s a little bit difficult to explain. Without going into too much detail I developed an irrational fear of having an allergic reaction to something, caused by my first panic attack about 7 years ago. In particular, for me, it was the thought of having an allergic reaction and not being able to breathe (lol cancer for growing a 10cm tumour in my chest and making me understand what it really means to not be able to breathe), and at its worst, it would occupy my thoughts most of the day to the point where I would be constantly avoiding touching/eating/smelling things in case I had an allergic reaction to them (sounds silly now; at the time it was terrifying). I received counselling and CBT and after a brief stint on antidepressants alongside both, I managed to quell this illogical fear enough that it would only very occasionally and rarely rear its ugly head. I really struggled with new things that I hadn’t come into contact with before; new medicines were a particular difficulty for me. It took me about an hour to take my first antidepressant pill because I couldn’t stop the intrusive ‘what if?’ thoughts that I might be allergic to it, and yet for the past 7 months I gave consent to be pumped full of toxic substances that are known and actuallyΒ expected to cause allergic reactions, and I didn’t even flinch. No worrying, no panic attacks. I even had a handful ofΒ realΒ allergic reactions to said drugs. I didn’t die, I didn’t even come close, and I guess that’s all it takes for the brain to be reprogrammed.

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I am grateful.Β If I’m entirely honest, I was a bit of a whinger before my diagnosis, a real Debbie Downer. I had the whole ‘woe is me’ thing down to a tee. I focused on the negative in my life; what I didn’t have and was blind to the positive. If I could go back in time and tell my former self something I would slap her silly and tell her to appreciate the good things. When I was diagnosed there was one day, about a week after D-day, where I had a full-on ‘it’s not fair, why me’ meltdown, but I soon came to the realisation that nothing I could have done would have prevented this from happening and it is purely luck of the draw.

As Jen (Jen’s Cancer Chronicles) one of my friends from our ‘Badass Babes’ support group so eloquently put it;

“…I am not angry or sad that I got cancer, I am only grateful that it was found, and that it happened in a time in my life when I had the beauty of the NHS behind me and my lovely friends and family. Yes, I feel lucky. I see those flowers, butterflies and sunshine every day. Even if nothing seems like it’s going right, all it takes is a stranger to smile or hold a door open for you and there is something to be grateful for.”

I couldn’t have put it better myself.

And finally…

I am great at drawing my eyebrows on.Β If precision eyebrowing ever becomes a competitive sport, I could definitely bring home the gold for old Blighty.

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Chapter 14: Aren’t you happy you’re finished?…

Well, that’s it! It’s all finished.

70 nights in hospital.
41 clinic appointments.
14 blood transfusions.
12 platelet transfusions.
8 neutropenic sepsis’.
8 lumbar punctures.
5 high-dose chemo cycles.
5 x-rays.
4 trips to A&E.
3 allergic reactions.
3 CT scans.
2 central lines.

Definitely, way more time than any 20-something-year-old wants to spend in hospital.

I’ve had a lot of ‘Are you pleased that it’s finished?’, ‘I bet you’re really relieved now aren’t you?’ and ‘Isn’t it a weight off your shoulders?’ and to be honest I still don’t really know how I feel.

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I feel physically better than I have for the past 7 months and I’m supremely happy that I don’t have to have any more chemotherapy (for the time being at least), but do I feel relieved/happy/like a weight has been lifted? No. No, I don’t.

I felt pretty good mentally (surprisingly) throughout my treatment. I never succumbed to the thought that this might not work; I felt positive and hopeful. It’s not that I don’t feel positive and hopeful now, it’s more that I feel sort of lost and abandoned. I have had at least 2 appointments a week for the past 7 months and now I am well enough that I have been set free until my PET scan at the end of January. Which is a good thing I know, but when you’ve had that constant care and monitoring for so long, to now have nothing feels very unnerving. I feel like I don’t really belong anywhere at the moment. I’m not ill so I don’t belong in hospital but I’m not well enough to go back to work, so I’m just sort of floating in limbo until January.

I remember my consultant telling me that often it is after treatment that people begin to struggle with their mental health, and I remember thinking “How silly! I’ll be so much better after chemo finishes, not worse…” but she was right (of course she was, she’s the one in charge). I think it’s the unknown that is daunting. I have to spend the next 3 months not knowing how treatment has gone. I think it’s also losing that crutch of care from the hospital. Every little pang of pain or discomfort in my body immediately sends me into a headspin of worry. What if that’s the cancer?!?

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I have requested a referral to a therapist from my Nurse Specialist. Having spoken with my little group of cancer friends (we have dubbed ourselves the Badass Babes and they have changed my life for the better) they have all suggested this. I think it’s something that should be talked about more; counselling/therapy for or after cancer treatment. Anything to lessen the taboo of cancer in any way.

I think what I want anyone who is nearing the end or has just finished their treatment to take away from this is that you’re going to have a lot of people expecting you to be feeling better now, but it’s okay to not feel okayΒ πŸ–€