On the Friday afternoon I had my last pre-treatment call from one of the chemo nurses. Talking me through what I needed. I took far too much with me as it turned out, but better that than being left high and dry I thought. I was advised to take drinks, snacks, etc. that I might like to have with me and things to occupy me like books, puzzles, etc. As she explained how much my immunity was about to be compromised by the chemotherapy and the subsequent risk of neutropenic sepsis, the signs to look out for and importance of having the triage number and card to hand 24/7 the seriousness of my illness swept over me again like a tsunami. She also talked me through the need to pre-hydrate before chemo, the Cisplatin can really knock your kidneys, and tipped me off to wear leggings as they are much easier to pull up and down with just the one hand. I was reminded of the side effects of the treatment – tinnitus, diarrhoea, sore / dry mouth, nausea, vomiting, constipation, fatigue, hair thinning, brittle nails and skin, etc. I still did not fully appreciate that I was about to feel much worse as a result of the treatment to get better than I was feeling from the cancer at this stage.
It was an emotional drop-off on Monday 22 Feb. Due to Covid, patients could not have anyone with them on the chemo ward. As a head and neck cancer patient I found that an absolute blessing. As treatment progresses the last thing you want is to be making small talk. Furthermore, I imagine if everyone was chatting with a family member the ward would be much less peaceful, making it harder to recline the seat and doze off as the medicine does its thing. My husband walked me to the ward entrance where I had my temperature taken and completed the Covid checklist, Monday meant I didn’t have to check in at reception and could walk straight round to the Snowdrop suite. I hugged my husband, shed a tear and took a deep breath before kissing him goodbye.
Entering the chemo ward I logged in for track and trace and waited. My nurse was lovely, I had a quick weigh in and was taken through to my seat. We discussed that we were going to try and deliver the meds through a canula in my hand and she brought me a hand warmer to get the veins raised. Unfortunately we struggled to get a vein in my left hand, so had to go with the right. Over the weeks my ability to do everything left handed on a Monday improved, needs must! As previously mentioned I had serious oedema in my hands, after an hour or so my right hand was wet and the canula almost came out as the fluid retained in my hand had started to drain out. We dried my hand and strapped the canula down well. I was really determined that I didn’t want a PICC line fitting, I was having enough trouble with the PEG I didn’t want any more issues. The fluid draining stopped and I managed to keep the canula in for the day. Thankfully, all bar one week with a different nurse we managed to cannulate fine each week, I wore gloves on the journey in to warm my hands and the handwarmers once in my seat, then pumped my fist as best I could to get the vein up. I made a note to self after the first week to bring less with me in future, the puzzle and colouring books would be no use if I only had my left hand free. This would give me less to carry and make me look less like I thought I was moving in.
The next challenge would be going to the toilet. I watched another patient as they unplugged their drip, would the cable round the stand and wheeled themselves off to the loo. The first time was a bit of a fiddle, reaching over and fearing pulling my canula out, but after this it was fine. I really appreciated the leggings tip, no buttons or zips to fiddle with, especially as I was now having to do all this left-handed. Pulling your knickers up with your non dominant hand, keeping your PEG out of the way and washing your hand is quite an artform as it turns out. This became easier over the weeks. You need to drink so much, and with the fluid through the drain there is no avoiding the need to get used to this performance. I did panic myself the first time when the pump started beeping, I thought I had pulled something out, I had just timed my visit to coincide with the alarm to say the drip was ready for the next bag. Again, you soon get used to the alarms going off around you all day. The nurses more than earn their money, rushing from one of us to another, checking, confirming and logging medications, best before dates and batch codes, changing drips and checking we were all OK.
As with my whole experience all the staff were lovely, checking in on you and explaining the process. There were two hours of fluid and nutrients, two hours of cisplatin and two more hours of fluid and nutrients. The day was broken up nicely by a morning cuppa and biscuit, the ginger nuts were like gold-dust given how much everyone’s sense of taste was depleted, lunchtime sandwich and drink and then afternoon cuppa and biscuit. The ladies who brought these always opened packets for me, I was learning very quickly to ask for and accept help, saving the need to risk the canula coming out by trying to use both hands. Over the weeks there were at least 3 other head and neck cancer patients in for chemo on Mondays, all at different stages. Some would take their Calphasol to the toilet to swill, I found that too tricky, especially if the drip stand didn’t have a shelf to carry everything. I opted for a spit bowl instead. This meant getting over any embarrassment quickly, but I figured I was in a room of people who were discussing their bowel movements like most people talk about the weather, so no need to be shy about a swill and spit or two. Knowing the timings of the day helped get me into a meds routine that fit well, so I was ready and prepared for sandwich time. As the weeks went by and my mouth got dryer the options got fewer, to the extent that for the last two weeks I made sure that I asked at morning brew time for a tuna mayo on white to be saved, so that I could have some lunch. Maybe I should have taken something in with me, but that was more to carry. I did always have a couple of Ensures in my bag though as a back-up.
The chairs were so comfy, most weeks once settled the best thing to do was recline the seat, lie back and doze off. Just before being un-hooked I was brought my medication to take home, steroids and two different medicines for anti-nausea, with full explanations of how and when to take each. At the end of chemo days the ladies on the Snowdrop reception checked me in for my radiotherapy, I then made my way round to the Linac machines and messaged my husband so he could set off to pick me up after radiotherapy. On my last Monday I was asked if I wanted to ring the bell, with four more sessions of radiotherapy still to get through it felt a little premature. We agreed I’d do it on the Friday and let my nurses know so that they could come round to the bell.
New Cross has 5 Linacs, most of my treatments over the next six weeks would be on two of these. The teams were lovely, they have a lot of students working at the hospital so often they were talking through the process, either to explain or check depending on who was carrying out the actions, student or tutor. Given the youth of many of them I did take a few double-takes, wondering if some were my ex-students – especially as all was about to hang out!! One machine had a lovely corridor after the changing rooms that was quite private. The rest required you to pop into the changing room, get into the robe and sit in the corridor waiting to head through for treatment. Due to Covid there was the extra step of wiping everything down you had touched. Initially I felt uncomfortable with this, no bra and sometimes no or short ties on the back of it. Looking down the corridor though there was an array of people with various bits and pieces or underwear on show. You soon get your head around the fact we all have much bigger things to worry about.
I was called in to the treatment room, name, address and date of birth checked. I then had to take my Covid mask off before jumping up on the bed. My arm rests needed to be in position 9 and I soon got into the habit of undoing the top ties on my gown so it could be lowered once I was on the bed. I had regained some weight since my mask fitting, so we needed to remove a couple of the plates. With a bit of a wriggle the head rest was in position, my hair was separated to avoid the clips, I closed my eyes as the mask was lowered, I found this stopped me getting any claustrophobia. The team guided me to shuffle up / down, left / right until the mask was snug and my tattoos lined up, they then lifted the gown back up for me to keep me warm and maintain a little dignity. I found it best to lay there and breathe slowly and steadily, thinking though some meditative mantras. This helped keep me calm and still. I didn’t want anything to affect where the beams were hitting, it was important for me to do my best to have pinpoint accuracy. The team let me know they were leaving the room and there I was.
The buzzing and whirring could be a little off-putting the first few times. I soon got used to the routine. There were a couple of clicks as the bed was adjusted to be in the correct position, then a pause as the team checked all the positioning was correct. The next sounds and lights were the first fraction being delivered, again there was a pause for a few minutes before the second fraction. You don’t feel a thing and it seems quite strange that your body is actually being given a tough treatment that you won’t feel the affect of for a few days or weeks. The team came back in, lowered the bed, removed the mask, which was always nice, and helped me back up. Covid mask back on I confirmed the time for the following day’s session. Normally you would get your time the day before, but to fit in with my husband’s work we managed to get a week at a time for me, and to be fair only one appointment got changed over the six weeks. It was back to the changing room. I always took my Flamigel with me and put this on immediately after treatment to help stop my neck burning too much. Given my arthritis it was tricky at times to get dressed, I ended up wearing ‘front-loaders’ as we kindly named them, or front fastening bras so that I was able to undress and dress myself. Off I trooped to meet my husband for the journey home and to tell him how it had gone.
Tuesday to Friday routines were slightly different in that it was only radiotherapy most days. We’d drive in and my husband would wait for me whilst I had treatment. It is worth checking at your hospital, but on these days we could get a voucher for free parking which was much appreciated. I soon got used to keeping the same Covid check form, delivering my ‘no change’ greeting, having my temperature checked and then booking in at reception.
On Thursday of the first week I had a meltdown as I checked into the ward. I was using baby shampoo as advised, had changed all my body washes and lotions, no hairdryer, only combing my hair, wearing no make-up to avoid skin irritation. I was also wearing leggings as they were the only thing comfortable with my PEG, I never wore leggings before, and big, baggy shirts to hide my PEG in addition to scarves to give me privacy if I needed to access the PEG and to protect my neck from the cold post treatment. I didn’t look or smell like me. The toll of the two hour round trip every day and the impact of the treatment had kicked in. I stood there as my temperature was checked and burst into tears. Covid or not, the nurse taking my temperate gave me a much needed hug. This was the first time I would hear ‘you head and neck folks have it tougher than the rest’. To be fair, it was the first real tears since I had accepted I needed a PEG fitting a month earlier. Everyone kept telling me how strong, brave and positive I was, in that moment I felt sorry for myself – not something I allowed much. The hug did the trick. As I had my treatment that day I also chatted it over with the team. That night I was on Amazon ordering different shampoo.
By about week two the receptionist knew my name, which was great when my voice started going a bit! The routine was broken up some weeks by clinic meetings with the dietician and my consultant oncologist. Fridays were a little busier as I had to have my bloods taken to check I was OK for chemotherapy the following week and we had a clinic meeting with the consultant head and neck radiographer. Clinic days meant my husband could come in with me, which I really appreciated for the company, the extra set of ears and the fact that he could help me dress so I could wear a proper bra!
Clinics proved invaluable. Not only did we check how I was progressing in terms of side effects, there was so much useful advice that we were reminded of. I was still struggling with the PEG, it was now oozing something that I lovingly called ‘tummy snot’. I had been to my GP for a swab and the result came back ‘mixed’, I had antibiotics and some cream. My Radiographer decided she wanted a swab anyway, just in case they needed to give me anything else. Knowing your mouth and throat were checked weekly and you could chat through how you were coping, pain and symptoms, like the impact on eating was extremely re-assuring. On a Thursday evening I would note down anything we felt needed discussing, so we could check it off in these meetings. It was also great that any problems with prescriptions could be sorted and we could review pain relief and discuss the next steps. I knew then that if at any point in the week I could ask the team to arrange a prescription for me to collect the next day. We got used to the blue prescription routine, having to take it to the in-hospital pharmacy. They usually had a 30 minute wait, so when I could eat that meant a quick treat from Greggs downstairs. One particularly bad week my radiotherapy team were absolute sweethearts and collected it for me before my appointment. Honestly, it felt like the whole team just couldn’t do enough for me. They were also very supportive of my husband checking on him whenever they saw him. The girls even offered to help me dress if ever I needed it when we chatted about how much better I felt in my nicer underwear on clinic days, with my husband on hand to help me dress.
By week 5 the skin on my neck was so dry, I had followed all the instructions but I now needed to switch to the Polymem rolls. The team helped me fit it correctly and advised on how best to moisten it, what to avoid, etc. I would be wearing these for another 2-3 weeks post treatment, but they worked a treat. I barely have any marks on my neck now, the skin is thin and tender and I wear factor 50 in addition to covering it up if outside on a sunny day, otherwise all is good on that front.
In some respects, the six weeks were done before we knew it. Arriving for my last radiotherapy session was strange. I was emotional and somewhat teary. They were happy tears in that it was over, sad in that I was about to lose the security and routine of seeing medical staff daily who could provide support, and fearful as I had been told the worst was to come. My last treatment landed on Good Friday. I had been told they were only doing essential treatments, so I expected it to be quieter, it was like the Mary Celeste. I was glad I had taken my thank you cupcakes in the day before! No reception staff, but one of the nurses called down to us by name to check me in. My husband was allowed in, I needed his moral support today and we were taking my mask home so I needed help carrying it (I had promised it as a teaching aid to a colleague). We weren’t on the usual machine as some weren’t running, but the radiographer on the day was familiar and lovely. As we were waiting she was chatting to us and gave me some really good advice as she took me through the discharge form, “take the morphine, drift off and sleep for the next 2-3 weeks”. That is effectively what I did. As I came off the bed for the last time I did have a little cry, such relief that this stage was over.
I changed and set off to reception, calling in on the chemo ward on my way. Then it was time to ring the bell. I cried. It felt so strange, the two of us and three nurses in a virtually empty ward. Still, I rang it out. In not just for us family and friends had asked for pictures of it. I had excluded them from so much of the journey by not seeing them I had to do this. As we drive home I cried again and uploaded the images to social media. Another chapter had closed.
