Chapter 4: Bald is beautiful

So nearly another week has passed already since I posted! You know what they say, time flies when you’re back in hospital (not), more on that later…

Last Tuesday I went in to see the consultant and he gave me the low down on the new plan of attack. It’s going to be pretty brutal and will involve stretches of at least 10 days as an inpatient where they deliver the chemo over 3 or 4 days, followed by days of monitoring. It’s an entirely different type of chemo from the round I have already had; it’s actually going to be 2 different types that will be alternated. They have decided that because it’s such an aggressively growing cancer, and because it has already started to spread slightly outside of the lymphatic system, it needs more than the standard treatment. It’s going to be 3 times as strong as the round I have already had and so I am very much not looking forward to that! 😖 They obviously think I can handle it though, otherwise they wouldn’t be trying it! 💪

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One of the side effects of chemotherapy is that it can slow, or stop altogether, your bone marrow from creating new white blood cells. In my case, this happened. One of the types of white blood cell is called a neutrophil. They are the first line of defence against infection; they flood the site of infection and destroy bacteria. A normal count is between 3 and 7, and I was told that my count was 0.19, which obviously put me at very high risk of catching an infection or virus.

Wednesday last week was one of my busiest days in a while! I had an echocardiogram (heart ultrasound) in the morning, then had to go somewhere else to collect injections that I’d have to give myself to try and bring my neutrophil count up, an appointment at yet another place in the afternoon to see the reproductive specialist and then back to the first location to collect a new mouthwash! 😂 The heart ultrasound is standard practice for patients on chemo; they take an ultrasound at the start of treatment and then repeat them periodically to check that no damage is occurring from any of the drugs. The reproductive team have also prescribed me an injection (yay more 😑) that will put me in a medical menopause to reduce the damage to my ovaries. Normally they would have put me through 1 round of IVF and harvested eggs but my first round of chemotherapy couldn’t wait so this is the only option we have now. No periods for a while though, so that’s a bonus!

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Thursday was more eventful than I would have liked. I went into my cancer unit for a lumbar puncture, which all went down without a hitch, and wasn’t actually as bad as I had imagined it was going to be, but never left the hospital after that. My temperature spiked and they took blood and my neutrophil count had dropped to 0, so they decided to admit me back onto the ward just to be safe and put me back on the antibiotic drip.

Friday was the surgery under local anaesthetic to fit my central line. This means that I don’t have to keep being poked over and over again to get blood or administer drugs which is great! The process of having it placed was pretty intense and unenjoyable though. I couldn’t see what was happening, they covered my eyes, and it was numbed with a LOT of anaesthetic so there was no pain, but there was a lot of pressure and pushing, and the odd feeling of things being moved inside your body. It didn’t help that I was hooked up to a monitor and so I could hear the beeping of my erratic heartbeat echoing around the theatre. An hour later it was done! An x-ray to check the placement and I was back on the ward.

Sunday they finally let me out again after being 100% that there wasn’t any infection and my neut count had started to climb again. The positives of being in hospital? Not having to inject myself. The negatives? Constantly being woken up. They say that a good night’s sleep is the best thing for you when you are unwell, and then they never let you get any decent sleep because they wake you up every few hours to do observations, or take blood, or hook you up to another drip! At least I’m getting to know the staff on the ward a bit better! I had already decided that as soon as I was home from hospital my hair had to come off. By that point, I could run my hands through it and come away with huge clumps, and I couldn’t just leave it and end up looking like Cynthia from the rugrats! 🤣

So I buzzed it short with clippers and then we shaved it with a razor! It’s the strangest feeling! I keep being told I have such a lovely shaped head! What an odd compliment – but a nice one!

This morning I went to collect my wig from the wig people. They had been so good and had ordered in lots of styles that they didn’t have in stock on our previous visit, and as soon as I put the right one on I just knew ‘this is the one’. This is the wig that I get free on the good old NHS (it would have been £180 if I’d had to pay!!). I’m still holding out for that dusty lavender babe from Webster Wigs though…

So in 24 hours, I’ve gone from hair, to no hair, to having removable hair!🤣

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Chapter 3: Gettin’ wiggy with it

This past week, since I was freed from the hospital following chemo, has been really up and down. I was told that 7 to 10 days after chemo I most likely would feel really tired and exhausted; my blood count would drop really low and then would start to rise again in the days following, but I didn’t really put 2 and 2 together until I was visiting a friend on Saturday, feeling like death, and I worked out that it was day 8 post-chemo. If you think you’ve been tired before, let me tell you, you don’t know tired. I have felt tired before, the kind of tired after a 10-hour busy bar shift on your feet, where you feel like you probably shouldn’t be driving home without having a nap first. I would take that kind of tired over how I felt 4 days ago in a heartbeat. Chemo tired is like your body weighs tonnes; like holding your head up and supporting yourself to sit upright is too much. All I wanted to do was lie down. I felt like my body wasn’t mine like someone had put me inside this weak, feeble body that was exhausted to the core. It has taught me that I need to do less and just listen to what my body is telling me in the days following my next chemo.

I’ve been lucky so far (touch wood) with regards to symptoms. When they listed the possibilities to me (it’s a very long list) I thought ‘Oh god, please no’ to most of them, like loss of taste and smell, mouth sores, nails falling off, skin peeling off, tingling and loss of feeling in hands and feet and lots other delightful things. Either the chemo drugs, or the high dose steroids I was on alongside them, gave me the most excruciating jaw and mouth pain, but luckily that has subsided now and I can eat and drink like normal. It was like all the muscles in my jaw, mouth and throat swelled up and became inflamed, and all the taste buds and nerve endings in my mouth became over-sensitised. Putting a single piece of plain broccoli in my mouth and letting it sit on my tongue was like an explosion of pain and my mouth would water and my eyes would run. But like I said, it’s stopped now so that’s a positive at least.

The thing is with me being one of the more high priority patients in the haematology/oncology unit (because of how bad things were prior to the first chemo), I have found that they are being very over-cautious with any extra symptoms that I have. I’m not complaining in the slightest, I would much rather they be this way than they were under cautious (is that a phrase?). But it meant that when I had a funny moment and felt like I was going to pass out of course they wanted me to go to a&e to be checked out. I was fine, apart from a slap on the wrist for not drinking enough and being dehydrated. 3 litres a day is a lot!!

I also went to see, as I keep referring to them, the wig people. Sounds like an alien race about to invade the planet. It was not what I expected to be honest.

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I had imagined that I would try on a longish wig, shorter than my hair was at that point, and it would look great! It didn’t. I tried on a few that were shoulder length or a bob and they looked horrendous. I mean just awful. They made me age about 10 years instantly, and they looked like wigs. Like big fake hair. That’s not what I wanted at all. I mean I know everyone who knows me will know that it’s a wig, and that doesn’t bother me, but I don’t want to be out in public and have a complete stranger know that it’s a wig because that kind of defeats the point. Anyway, tried on some shorter styles, like I used to have my hair, and they looked pretty good and realistic! They’re going to try and see if they can get the style I like in red too so I can have my red hair again without any of the damage! I think I will still buy a wig in some extravagant style and colour to have also; I’m thinking dusty lavender… 😍

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I also went and had my own hair cut off short too before it starts to come out in clumps. It’s quite ironic to have to cut my hair off before I lose it to cancer, to then donate the hair (because it was looong) to a charity that makes wigs for children with cancer. It would have been posted already, had I not left it in the hairdressers in an envelope. Let’s hope that the staff in the next day didn’t think it’s some kind of ransom…

‘Give us the money or it’ll be more than hair next time…’ 😂

Chapter 2: Round 1, ding ding!

Well… Lots have happened in the week since I posted last, and seeing as today is what I would call a ‘good day’, I thought no better time like the present to write another blog post.

It has now been a week since my first round of chemotherapy. It was all a bit of a rush to get me admitted to the hospital and get things started as soon as possible once they had decided on the plan of action. It was go go go! The original plan was for me to be on a type of chemo called R-CHOP, which is just an easier way of saying the drug names, however, that plan has all changed now (watch this space for updates about that after Tuesday…)

I think the hospital staff were a lot more worried about me come Friday morning than they let on (which I’m glad of!). They decided that my second half of the chemo dose needed to be brought forward to an earlier time than 3:30pm, due to the fact that I had woken up on Friday morning swollen from the armpits up like the stay puft marshmallow man! That’s something that’ll happen though when you’ve got a large tumour squeezing your main blood vessels!

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The administering of the chemo drugs themselves was a lot less eventful than I expected. I had imagined that I would be able to feel them coursing round my body, but for the most part, I wouldn’t have known any different from the saline drip that they had me constantly hooked up to! Granted, they were administered very slowly due to it being the first dose and due to there being a very high chance of me having an adverse reaction to one of them, but still, an odd feeling knowing that technically a poison was being pumped into me! One of the drugs, the last one if memory serves correct, did give me a slightly odd feeling in my head and face, almost too odd to describe. It felt like my brain was hot like there was heat right in the centre of my face behind my nose, and I could smell the chemicals from the inside of me, but none of the nurses seemed particularly worried about this and they were so attentive and good with everything. They’ve had lots of practice!

Friday night I was wheeled back to my private NHS hotel room and hooked back up to my trusty whirring and beeping friend the fluid drip and that was it – the first round of chemo – completed!

Saturday I felt pretty good. The swelling had gone down a lot and I could definitely breathe easier, which the consultants seemed very pleased with, but I wasn’t out of the woods just yet as they had told me that things could still get worse before they got better because sometimes the cancer cells could swell before they were broken down, and in my case that would have been pretty bad (it didn’t happen – yay!). Sunday was just more monitoring and blood tests (twice a day – I now have the arms of a drug addict), and Monday morning after blood tests came back good still (they were looking out for problems with my kidneys as they could have struggled to process the waste cancer cells out of my body) I was told I could finally leave! 5 hours later after waiting for the pharmacy to send down my huge bag of drugs I was out of the door with the biggest smile on my face!

Chapter 1: The start of my journey with NHL

So… Where to start?

Well, 3 weeks ago I woke up in the morning with what doctors had presumed up until that point was a chest infection or asthma, and I went to sleep on a ward in hospital having had a chest X-ray and being told that they were pretty sure that I had lymphoma… Yeah… “One of those days” just doesn’t quite cut it ha!

After spending the night in the hospital to have a CT scan the following day, they let me go home to just wait for results really, which let me tell you has to be the strangest 3 weeks of my life. It’s a very odd feeling when someone tells you that they think you have cancer (and even after you’ve seen the mass on an X-ray and marvelled at the size of it), it’s very difficult to actually believe them. You think ‘No that can’t be right, I’m fit and healthy and a vegan for Pete’s sake!’ How can I have been walking around for most likely months with a tumour in the centre of my chest squeezing the blood vessels and my heart and decreasing my lung size and not have known it?! Apparently, it’s because I’m fit and healthy and so my body has compensated for the changes. Catch 22 I suppose.

So three weeks have passed and in those three weeks, I have had a biopsy, more blood tests than I can count, two CT scans, been made radioactive for the day for a PET scan and been officially diagnosed with Non-Hodgkin’s Lymphoma, which is classed as a blood cancer of the lymphatic system. Still waiting on final in detail test results to confirm the specific sub-type of NHL (there are 50?!!?!) but they’ve narrowed it down to either Diffuse Large B-Cell Lymphoma or Mediastinal Large B-Cell Lymphoma, which are both a mouthful.

I’m one of those people who finds the human body and the workings of it fascinating. I have to know everything about everything. I need to know how the cancer works, how the drugs work; the science of it all. The word ‘cancer’ has such a stigma around it. It invokes thoughts of foreign masses in the body; something very wrong that shouldn’t be there, which is true in part, but it is just a part of me, a part of my body that has had the wrong information sent to it and gone a bit wild. It’s still a part of me, a group of cells that are reproducing way too fast and causing problems. Albeit rather big problems for me, throttling my heart and major blood vessels and pushing my lungs out of the way!

I’ve been told by many reliable sources that usually Lymphomas respond extremely well to treatment and that they can be cured. So that’s what we’re aiming for. Complete remission. I knew my stubbornness and hard-headedness would come into use one day! I am going to kick this cancer’s butt.

I thought I was having a tough time of things up until a month ago, not being able to find a job since finishing my Master’s degree but this has given me a whole new look on life and made me appreciate things that perhaps I overlooked before?

And Sod’s bloody law, of course, I was actually offered a job the day I was diagnosed haha. You wait months for a job offer and then you get cancer 😂