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Iechyd Da: Part 1

The last year has been a bit of a roller-coaster to be honest. Feels like we are still strapped in tight, with some twists and turns ahead. Part I will cover the start of this, telling the story of what my wife Elysia had to go through the past year.

Back in August 2023, Elysia had some pain in her breast during the night, which lead to her inspecting and noticing a small bump. She told me about it, and I was pretty pushy for her to book a doctors appointment about it. I remember at the time she was hesitant; she hates calling strangers and has never been one to use the doctors much historically. Mind you, having spent 31 of her years in the states, that makes sense!

Elysia before treatment. Bonus points if you can spot Chorizo the fireskink.

After she had called, she had to wait a week or so for an appointment. I remember she got upset with me, telling me that now I’ve made her worry it’s going to be something more serious because I made her call the docs about it. She is quite different to me in one respect; she’s believes in “willing things” to happen. For example, if you keep saying X is going to happen, then it will. She doesn’t like inviting bad things to happen by even considering them. I can’t say she’s wrong or right, but I do know she was worried and just trying to deal with it in her own way.

On the initial scans and assessment, we essentially got told they are almost certain it was cancer. The next steps of sending off samples and awaiting results was more a case of confirming it and learning about it, rather than us waiting to know if she had it or not. I do remember the moment they told us, and that I think Elysia was just in a bit of shock about it. I remember her still being smiley and nodding with the doctor and nurse, while I was going light headed and getting upset. Later we talked about it and I don’t think she had fully understood what the diagnosis had meant at the time. Neither of us had much knowledge of cancer at the time, so I think for her – the news didn’t translate into what lay ahead or the risk of life posed.

With that said, she’s also a lot better than me at managing her emotions like that. She cried a little when it was just her and I together after we got told, though I am not sure if it was a reaction to me crying or the news. In the weeks that followed, it would be me sobbing on the bed worrying about all the outcomes, while she just cracked on and didn’t worry about it. I really admired that about her, and hoped that she wasn’t just being brave and battling with it alone internally.

I found it quite hard in the first few weeks, before the plan had been established with the doctors. I was worrying about the worst cases. Worrying about losing your closest person. She had moved over to the UK for us to be together; she’s pretty much solo over here. I worried how it would be for her going through end of life care with her family far away. I thought about what would happen if we lost her, and yeah the type of thoughts you would prefer not to think about for your 33 year old partner. It is those thoughts that would get my upset though during those first few weeks. Over time, though, it got better. The plans started coming together with the medical team, and then after some initial grieving, it just became a new norm – where we had to just get through one thing at a time.

Despite being in the states, she still had support from her family. Her sister shaving her head in unity!

Things started quite slow. It felt really hard for us to wait a month or two for her treatment to begin. It felt like the longer we waited, the longer we were giving the cancer to spread and cause damage. We tried to take some reassurance in how the doctors were not so concerned about it. There was also trepidation about the impact of the medication on her, with chemotherapy notoriously being something that’s really challenging to go through. It wasn’t until we had the first “prep” call with the nurses before the first session that we realised how scary it had the potential to be. Being made aware “some people’s body will just get infected trying to fight it, and you’ll need to spend a week in hospital if that’s the case”. “Here’s a list of 20 symptoms, if you get any of them, you need to call our care line without hesitation”. Thankfully, Elysia’s body handled it like a trooper.

Elysia during her first chemo session

She was great through it all. There were times where she was fed up, but ultimately she just got through it. She hated needles and giving blood too, but got so good at it by the end. First time she had an IV put in for a CT scan, she started feeling woozy and her vision went black for a few minutes. She was scared worrying she had gone blind, and I was scared being helpless while her body was freaking out. After that incident, we warned everyone that she is liable to have a reaction to injections and they made sure we took precautions thereafter. She did manage the rest of the injections fine, though It did lead to her opting to get a PICC line, which is a long term tube you get inserted into your arm that’s thread through your vein towards your heart. It can be used to administer chemotherapy or give blood. The sensation of having the PICC line inserted and her body reacting to having something alien inside her was probably worse than a lot of the chemo symptoms for her personally. It took a few weeks to get used to the sensation, though it didn’t fully settle down and was one of the worst bits of her treatment for her. It helped a lot, she was glad she had it, just hated the sensation it left her with in her chest.

The upside to having the PICC was every week we had to go to the local hospital and get the line flushed. They had a lovely team, headed by a guy called Simon, who would flush the line to help prevent blood clots and clean and reapply the dressing that kept it in place. Like with the chemo nurses, we found the staff here had a lot more time to talk to you and help you deal with the psychological impact of what you’re going through. It was like a mini therapy session for Elysia every week, where she could go and talk about how it’s been to people who understand the lows of what she’s going through. She ended up making a thank you card in the shape of a dog to give to Simon, since he’d had such a positive impact on our relationship with the PICC line.

Using the PICC line to take bloods

Initially, it felt like her treatment was going to be such a long process for her. Understanding it’d be 10+ months until the main part of the treatment was complete was challenging. Once we got into the flow of things, the time went surprisingly fast. The perspective shifted into getting through each chemo session. The initial days, hoping for no new side effects to show up. Waiting then for that first week “hangover” to ease off. Then enjoying that short week or so before the next session when she started to fell normal again.

One part of chemo that neither of us will look back fondly onto were the injections I had to administer. After each session, she’d need 8 days of injections into her belly to help boost her bone marrow / white blood cell count. As you can imagine, with her dislike of injections, she grew to really hate these!It often turned into a mix of me having to push her to let me do it, and reward her with pudding afterwards. We went through a vast supply of custard, chocolate mousse and creme brule.

A post injection creme brule.

Before the diagnosis, we were never hugely active outdoor people, with both of us finding solace at a desk with a keyboard and mouse in our hands. However, the treatment did mean that she would be immuno-compromised. This meant that we both needed to self isolate, as if she got any standard illness or bug, it could be life threatening for her. I stopped heading into the weekly work-from-office days at work, and we started getting our food online. My good friends Pete and Ruth were very thoughtful during this time and paid for us to have several months of meal service, consisting of really healthy, nutritious, ready meals. This helped a lot with just the hassle of making food. I found I was often waking up, making breakfast, working, making lunch, working making dinner, tidying up and then it was starting to get close to bed time. So just having a meal a day taken care of, without any time to prep, was super helpful for me. Staying indoors wasn’t too tough, though not seeing the family or friends over Christmas was odd. My parents did do a drive by and we had a small catch up as a safe distance, though.

My parents visiting and us chatting through the window.

Elysia dealt with her hair loss really well. She used to joke about how it was super convenient not having to remove body hair anymore! Jokes aside, she really didn’t want to lose eye lashes and brows, but when they went she was a champion about it all. She decided to shave her hair before starting chemo and was willing to embrace losing the hair. We met another couple who were a bit older going through the same thing as us, but learned the lady had a huge attachment to her hair and appearance – so it was a much bigger deal for her. Elysia would refer to herself as an alien often, and make fun of the little divot on the back of her head – claiming she had a “butt head”. She was still a cutey throughout, though you can definitely see looking back on pictures how the treatment was affecting her body over time.

When we were midway through, they did a CT scan and assessed the affect of the treament on the tumor. The main tumor in the breast had shrunk from 22mm to 17mm. Initially that didn’t sound huge to us, but the oncologist was happy. We learned later that with masses like this, a 5mm reduction at 22mm is significantly more volume than, for example, a 5mm reduction of a 15mm tumor. So it was likely after another 3 months, it would reduce more than just another 5mm. The more powerful chemo treatment had yet to be started at this point, so we were left hopeful for the good response to continue.

One of the things Elysia had to stop during chemo was handling our precious little skink Chorizo. Whilst the skink is harmless, they have the most tiny little claws they use to burrow and climb with. So when handling, you can be left with a lit of very tiny scratches over your skin. With the dirt on their claws, we had to play it safe. She could still pet them if I brought them over to her at least though!

Chorizo still got pats from Elysia.

When the 7th and final chemo session was over, it was good – though it didn’t fully feel like we were done. There is a “thing” they do on some chemo wards, where they have a bell to let patients ring to celebrate when they are finished with chemo. Elysia actually found the concept a bit insensitive and worried about how it’d make the other patients feel. Those patients who are too far gone to ever fully recover, or those who are back in for the 3rd time going through it all again. So it wasn’t something she would have done if offered the chance. Surgery and radiotherapy still loomed ahead, and I think that’s what stopped it feeling like we were done. We also didn’t know what the outcome of the treatment was going to be.

The good news was Elysia had a great response to treatment. On the post-chemo CT scan, it showed no visual evidence of the cancer remaining in her breast or in her armpit’s lymph node. They wouldn’t know for sure until they did a biopsy of removed tissue post surgery, though it was the best we could have hoped for so far at least. Elysia spent a lot of time figuring out how she felt about her boobs during her treatment. She ended up being of the mindset that she would rather just remove both breasts, despite only being recommended a lumpectomy due to her good response to the treatment. In the last few months, she was often feeling pains and lumps in both breasts and was in a constant state of anxiety worrying about new tumors or issues. For her, she felt it was going to continue that way, and didn’t want to have that anxiety in her life. It does remove the chance of a re-occurrence in the breast at least, though technically, it doesn’t lower the chances of the cancer coming back by too high a percentage. Psychologically it was the right thing for Elysia.

The day of the surgery was booked on the day of my birthday, what luck! She would joke that she was getting a boob job for my birthday, but just.. not the normal type of boob job! It was a long day, we arrived at about 7.30AM and didn’t leave until about 5PM. We watched a lot of day time TV together. I don’t think we were particularly nervous about the operation, but its still always that tiny risk with any operation that you have to consider. She looked great after the surgery. She was worried how she would look, if her stomach would petrude without the boobs to balance it. But it looked really natural and suited her body type. It actually highlighted how small and slim she. Most importantly, some weeks after the surger, we were able to learn that there was no evidence of remaining cancer found when analysing the removed tissues or lymph nodes, which means she had a full response to the treatment.

Elysia post surgery, very woosey :D

It all felt a little anti climactic by the end of it, oddly! We were super pleased that Elysia had a complete response, and that there weren’t any significant complications along the way. The odd part was we found that you get so used to being in the hospital a few times a week, that when you get to the end and you’re told you’ll just have periodic phone calls to check in, it feels strange. We had a nice moment when the surgeon wanted to come share the results with us in person, and shared how happy he was when he got the results back. After that day, our contact with the health professionals we’d built up relationships started to wind down. The oncologist who follows up with Elysia got changed to a different oncologist, as we expect the follow-up work doesn’t need to be done by the “main” oncologist. This exaggerated the odd feeling though, as it felt a lot less personal; we didn’t know the new doc and he didn’t really know us either. The follow up calls felt a bit of a routine, like the doctor had 20 to get through per hour, which left Elysia feeling a bit cold. The NHS still has its door open for us, we can email or call any time and they can arrange for us to go in to see someone if we ever need, which is great. It just took a while to get used to getting our independence back.

The final thing that lay ahead was the radiotherapy. This serves as preventative measure, to try reduce the chance of any cancer developing again – “sterilising” the area previously affected. In the past, this was 3 weeks of once a day radiotherapy sessions, but more recently they found that a 5 day treatment was just as effective. We were glad of that, as it was a couple of hours a day with the commute. The treatment itself wasn’t too painful for Elysia, though she did suffer from a bit of tightness afterwards. She also acquired three “dots” as tattoos, as they had to mark her so they could line up the machine the same way each session. We can be gratful that the worse thing about it was the traffic travelling to the hospital, as we had to travel to a different hospital further afield that specialised in radiotherapy.

As much some aspects of independence have been returned, it isn’t really independent for Elysia. She’s now on daily oral medication for at least the next ten years. She has 3-weekly shots in her thigh, to help block the HER2 receptors. She has 3-monthly jabs in her belly too, which will need to happen for the next 5 years. These are all to try change her body to be a less-cancer-welcoming environment, in hope that it doesn’t come back. It sadly affects her quite a bit, effectively putting her into an early menopause and so she’s having to deal with temperature flashes, aching joints and other side effects. However, we are on the path to getting her quality of life back. We can leave the house again. Her hair, eyebrows and eyelashes are all growing back healthily. She’s working towards getting her sleep better and finding energy to get back to doing the things she was doing before the diagnosis.

Elysia getting back to normal, skink on her shoulder and code on her screens.

Looking forward, its hard not to be positive. She got through it so well, and we got the best outcome we could have hoped for. She has taken all the additional preventative steps that we could, and takes solace in knowing she did everything within her power to prevent it, should it ever come back. That’s the small fear that we push to the back of our minds. How hard it will be for her to through all this again if it ever did come back? She’s said herself that she wouldn’t want to do it again, and I don’t blame her. For now, we will hope we never have to consider treatment options again and be grateful for how well everything went for her.

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