OK, so the cancer is in your body, but you do not need to go through this on your own. It is lonely at times, and you will think that no-one else in the world understands, but many do. Even if they don’t you will need some people, some will be given to you and others you will choose, some may even choose you. I have certainly learnt a bit about some of my friendships and colleagues through this experience. I apologise if this starts to read like a self-indulgent Oscar’s speech, but I honestly appreciate so much the support I have had. I tend to plod along in life and travel light in terms of the people I keep in touch with from one chapter to another. It is clear from what follows I have taken the ‘tell everyone & anyone’ approach, I know many people don’t feel comfortable with that, but it has worked for me. I am very open & honest.
My core team had levels to it, dictated in many ways by Covid, geography and pre-existing relationships. Top of the tree comes my husband, followed by my brother, dad, step-daughter and their families and some of my oldest friends (the ones I chose). The ones given to me have been the fantastic staff at New Cross Hospital, without whom I literally wouldn’t be here writing this today. Friends and colleagues, especially those I don’t tend to have daily contact with I guess have in their own way chosen me, and for that I am especially grateful.
One thing is for certain I certainly would not have got through treatment and the early days of recovery without my amazing husband. I am in awe of him. We have hugged, cried, railed, sworn but mostly survived, from one day to another at times. From the very first call when I told him of the suspicious lumps in my neck, he has been by my side emotionally and physically whenever Covid didn’t prevent that. He has been my ears in clinics, quite literally my voice in phone appointments, my chef, housekeeper, dog walker, prescription collector, taxi driver and most importantly companion. I don’t think I can ever thank him enough; we have tested the ‘for worse’ part of our wedding vows this year and are coming out the other side all the stronger for it. As we agreed in the first lockdown last year, there is no-one we would have preferred to have been isolated with and this stood true through this latest travail that life threw at us. It may be corny to some, but we walked out of our wedding with Snow Patrol’s Chasing Cars playing. The lyrics have never resonated so much “We’ll do it all, everything, on our own. […] If I lay here, if I just lay here, would you lie with me and just forget the world? I don’t quite know, how to say, how I feel. Those three words, are said too much, they’re not enough.”. Of course, we weren’t quite on our own, our top tier of the core support team included our little black shadow Pip, my midlife crisis puppy. We’d only had her six weeks when cancer reared its beastly head and we doubted we could keep her at one point. I even made provision for her in the updates to my will I e-mailed the night before my tonsillectomy I felt so guilty about the prospect of lumbering my husband with her. But the distraction of training her, snuggling up with her and walking her has been a godsend. She is a very intuitive Labrador and knows she must be gentler with me; I have missed out on some of the play with her as I have been fearful that she might jump and catch my PEG. When I was in my morphine haze at the start of recovery I would spend a good part of the morning dozing, having been awake a lot in the night for meds and battling the mucous. She isn’t generally allowed upstairs, and we have a stair gate, but she would sneak up when able and I would hear her tail banging against the doors as she excitedly came in to check on me. When she greets you on a morning or when you come home, she does the most loving bum waggle of happiness. This brought a huge smile is the darkest of days.
I believe that you can judge the quality of relationships by what you do not need to say more than what you do. This most certainly is the case with my brother. He understood me completely when I explained I didn’t want too many comparisons drawing to my mum’s cancer, and kindly explained this to my dad without me having to ask. He also agreed that cancer has been the biggest elephant in the room of our lives, not a matter of if but where, when, and which one of us. Hopefully this is it, and I have gone through this for the two of us. Although we couldn’t / didn’t see each other I know he has been with us all the way, along with my wonderful sister-in-law who gives the most amazing hugs that I so needed and missed, and my two nephews. They mean the world to me, especially not having had my own children. I hated putting them through this, but they sent me cards and gifts to keep me going. The toughest time was when my voice started to fail, then I couldn’t speak. The first call I made once my voice was strong enough was to them, I just needed the warmth of our friendship to tide me through the next wave of pain and emotion. My brother was also great at calling my husband on my chemo days, so they could talk freely without me being able to overhear anything. They have felt helpless, useless even as I held everyone away at arm’s length. When we finally saw them the hugs were magical and the tears flowed, accompanied by laughter and love. The daft one even bought my husband a voucher for a local restaurant to say thank you for looking after me, it has a good life on it and we look forward to going once I can enjoy the food.
My dad has his own health issues, I went to care for him after spinal surgery three years ago as my step mum was abroad. It felt like the baton had been passed back in the relay race of life. The last thing I wanted was to give him any extra worries, since the surgery he has struggled with pains in his legs and has had ECGs during my treatment. Nevertheless, he is my dad and has messaged nearly every day, checking in and being here for both of us. He set up a What’sApp group with my brother and me after his surgery. This has been really useful in keeping them both in the loop with updates at the same time. My step mum has also been part of this team, joining in on the video calls and advising on recovery from my tonsillectomy, especially having been an ENT nurse, albeit paediatrics. Their 25th wedding anniversary was at the beginning of June, they celebrated with my stepsisters in Yorkshire the weekend after and we arranged a get together at ours at the end of June. It had been 18 months since we had all been together and was a lovely day. I wanted to make it really special for them, so iced a cake (first time I had ever made icing roses!) and decorated the house with silver balloons and bunting. They seemed a little overwhelmed when they walked in, but happily so. It was nice to be able to say thank you, and hopefully helped them worry a little less about me.
Not having seen enough of my stepdaughter and granddaughter last year due to Covid restrictions I had managed a grandma day in the October half term before diagnosis. I’d kitted us up with larger clothes, pyjamas and a new pushchair ready for more sleepovers. Then along came the diagnosis and shielding. It was really hard not seeing them during some of the toughest times, especially on my husband. I encouraged him when possible to pop through and see them. I’m not mum, but we are still fairly close, so I knew it would impact and be a worry when we told her. We have chatted since and agreed that as I have a natural tendency to take most things in my stride and look for a positive spin we were both much more worried about how my husband would cope than me. In the early weeks we had lots of video calls, which always brightened my days up. Then talking got too tricky for me, so these tend to go to my husband; I miss them especially as my voice if fairly strong again now. The messages, pictures and visits over really keep me going though.
My mother-in-law (my husband’s step mum) has also been in touch most days, checking on me, sending pictures and love. I have really appreciated this, especially as my father-in law has been ill throughout and has now just had a pacemaker fitted. I haven’t seen them yet, not quite ready for the four hour round trip and eating at someone else’s house. Neither is the puppy, so we stay home. My cousin became very ill with Crohn’s about 10-15 years ago, needing surgery to remove a section of his colon. He was on a serious build up diet afterwards and had difficulty eating and needed a colostomy bag. He was really supportive as I approached treatment, had the PEG fitted and struggled with it initially. Some of my oldest friends have been amazing too, messaging, phoning my husband to check on him and turning our front room into a florist and sending some of the most thoughtful gifts. As have the neighbours, due to Covid they have been some of the only people we have seen face to face. I am especially grateful that this has given my husband people to chat to, our partners suffer this too, which has been a weight off my mind. One organised an amazing hamper from the Katherine Allport Foundation, a local charity that gives care hampers to cancer patients. It was packed full of goodies from blankets & socks, moisturiser & lip balm, to treats of cookies and chocolate. The same wonderful lady also became dog walker in chief when I was in my morphine haze just as my husband pulled his achilleas. My hairdresser was diagnosed with breast cancer as I was undergoing my chemo-RT. We have been messaging each other, and she was determined that she was going to cut & colour my hair for me when I made it up there. We both cried! Thankfully she is doing fine now, she rang the bell last week and is on tablets. Knowing someone going through a similar experience (we have an uncanny habit of that) has been a great comfort at times.
I will never be able to thank the teams at New Cross Hospital enough. The CNS team, headed by a really motherly nurse have provided comfort, understanding and guidance throughout. They explained each stage, what will happen, how you might feel and gave a week-by-week walk through of the likely side effects of treatment. Mainly, it felt like they cared when I felt so alone. As I struggled with mucous and eating they had some great tips on how to manage both. The antithesis of my main consultant, who doubted I had cancer, then told everyone in my MDT that he was surprised I had presented yet. However, he appears to have done the job, so bedside manner aside I cannot fault him, apart from ignoring my requests to put the camera through my left nostril as it is more comfortable than the right. My chemo-RT teams were equally fantastic. My oncologist and consultant thoroughly explained the treatment, side effects and care that needed to be taken throughout. In the Snowdrop suite, the whole team were cheerful and positive and could spot quite easily when you were feeling crappy and needed a perk-up. When I say whole team, I really mean it, even the lady with the refreshments set aside sandwiches for me on a morning, so that if I was last as she brought the trolley round there was still something I could eat. One of the main nurses was fantastic, she persevered with my silly veins and made sure I could be canulated every week and didn’t need a PICC line. She also arranged for the on-call oncologist to check my PEG and confirm if I could have chemo when it was infected, then a couple of weeks later sort out my morphine prescription when needed. In the Deansley centre the receptionists, orderlies and phlebotomists were all great, offering comfort, understanding and teaming with humanity. It would be remiss not to say how supportive the radiotherapy team were. Starting with my consultant radiographer who always made time for me and my husband while he waited any day of the week and was fully focused on us, not at all rushed and amazing during the weekly clinics. The teams on the LINACs were great, checking on progress, offering to help with the smallest things, reassuring, sorting and collecting medication, but mainly being really cheerful and spurring me along when the going got tough. They helped tick off the milestones each week, knew the likely side effects that were coming and made me feel like I was on top of my game, which is needed at times when you falter. It is easy to lose count of the number of staff you encounter and who support you through this, the secretary on the phone chasing information, the surgeons and anaesthetists, nurses, speech and language therapists, dieticians, pharmacists, dentists, and radiographers who carry out all the scans. You really do see where your tax goes when you have cancer. Each one of these people was dedicated, working under the extra pressure of Covid and having been told they would only get a 1% pay rise. Yet despite all this, never once did was I made to feel a nuisance, nor was any appointment rushed. They honestly made you feel that you were the only person that mattered at the time.
I cannot talk about who has supported me through this without mentioning the Macmillan Head & Neck Cancer group on the forum. Special mentions need to go to Dani & Hazel, who welcome everyone, have come through the other side and had very sage advice. It is so useful to have people who have been through the experience and are going through it at the same time to answer questions, pick up your mood and empathise. Now that I am coming out the other side it is nice to be there for others, a strange sense of finding something positive from all of this mess when you are able to offer a useful tip, or help someone smile when life seems all grey. The support from Macmillan started with the booklets and online information that my CNS provided and guided me towards. Everything is explained is such accessible terms. When you are in clinic meetings it can become information overload, so having this information to hand later to digest at your own pace is invaluable. Post treatment I have struggled processing and coming to terms with the experience, Macmillan once again have supported me with this by arranging counselling. I don’t think I would be facing life as I am now without this.
Finally, my colleagues in each of their own different ways have been there or taken away any worries allowing me to focus on getting better. My team just cracked on with the job and whilst I did the odd bit of work this was simply to give my brain something else to focus on, at no point was I worried about everything being done to the best of their abilities. Out students had great results, and the world kept going, as I have often said in the past no-one is indispensable in the workplace. Nevertheless, I must have done some things right over time as the messages from ex-students have been wonderful and spurred me on. My headteacher has reassured me throughout. I know I am very lucky to have a job that was secure, I knew I could come back to and that paid me; it must be such a worry that you don’t need if this isn’t the case. Of all the people at work he was the one who knew how much my treatment would batter me, and even now his door is open should I need to make changes if I can’t cope with the full time return. From the very moment she knew the school nurse has helped me understand things, worked through the situation to help me gauge what I can and cannot do and checked in on progress. Other work friends have been fantastic but the two who have sustained me with updates, check-ins, questions, understanding, the most thoughtful and useful gifts have been my boss and our exams officer, who have been much, much more than colleagues.
It is so easy to bumble along in life, not realising who is there. It is sad that it takes something like cancer to make you stop and see the reality of the relationships you create. I am grateful in many respects for this slap in the face. I hope I never need to give this support back, because I don’t wish this experience on anyone, especially not these wonderful people. Having said that, if I do, I hope I can bring them the kindness and support everyone has given me.
