A Wife & Carer's Perspective
I have been asked to write something from my perspective on this journey. I hope that this might not only help me make sense of my new role as a carer, but also show you guys the other side of living with cancer, the bit behind closed doors, the bit that nobody else sees. By his own admission, Rich says that his default mode is to sugar-coat things. For the sake of perspective and honesty, this will be sugar-free!
The 2 years, 10 months and 6 days since Rich was diagnosed with bowel cancer have been nothing short of a nightmare. The rollercoaster has been intense and so much has happened that has changed me as a person. For now, though, I’m just going to write about the last few weeks.
Friday 8th February
Our 9.20am appointment with the oncologist turns out to be a mammoth blow, far worse than we had been expecting. According to the PET scan, the abdominal pains Rich has been suffering from are not due to cancer. However, the bastard is going wild in the lungs, the liver and now also the lymph nodes. She says its bad. The shock hits me so hard that, for the first time in all the appointments that I have attended with Rich and held it together, I burst into tears. It felt like being kicked in the stomach.
We leave the room and walk along the now all too familiar Conquest Hospital corridors. My ears are ringing. I hold Rich’s hand tight, but I can’t breathe. For the first time since all this started, I realise the enormity of this whole thing. I feel numb. We walk slowly, clinging on tightly to each other, tears pouring down my face in shock.
We arrive home, my ears are ringing. There is a low-level shaking going on that I can’t control. My heartrate is through the roof. My mind is totally flooded, and I feel like I am drowning. Today is my MA graduation ceremony, but I can’t face it. Rich insists that we must go, that we must leave this horrific news here at home and go to receive my hard-earned award. We get in the car and go. I’m grateful for the distraction and so glad to see my fellow MA lovelies. It’s a really big deal to have done this MA, it has kept me sane.
Saturday 9th and Sunday 10th February
Numb. Did yesterday really happen? What does it mean? Is he going to be ok? We spend the weekend clinging on to each other, in a state of disbelief. The ears are still ringing. I try to do a bit of work in the studio but can’t focus. On Sunday I drop Lola off at the farm (Thank you Team Mair, we love you guys!), and Rich and I go up to London for the night in preparation for surgery on Monday.
Monday 11th February
Early start today, we get Rich to the hospital for 8am where he is admitted, and pre-surgery tests are done. The familiarity of the hospital is both comforting and eerie at the same time. The surgeon pops in. He has a reassuring confidence about him. He removed the original tumour in Rich’s bowel and has been involved in his care over the last couple of years.
Then it’s time for surgery. We walk along the corridors to the operating theatre, guided by a nurse. We have met the anaesthetist several times before and we chat easily with him. The room has a bright green floor. Green is on the opposite side of the colour chart to red. Blood. They start putting needles and cannulas into Rich. I decide I don’t want to watch as he drifts off with the anaesthetic, so I give him a hug and walk back along the winding corridors to his room.
There is nothing I can do now but wait. As a distraction I plan to go and see an exhibition at the Wellcome Centre. I get on a bus and this is when I start spinning out. The ringing in my ears is now deafening. Everything is spinning so fast around me, the heavy London traffic, the people rushing along the pavement, the taxis in a rush. What am I doing here? I get off the bus, people bump into me as I stand on the pavement disorientated. I feel like I am in a bubble, totally disconnected from everything around me. Complete dissociation. I cross the road and get on the next bus back to the hospital. I curl up in the chair in Rich’s room and rest for a while.
Suddenly my phone rings, it’s the surgeon. My heart skips a beat. I hear Rich’s sleepy voice saying, “It’s all ok babe, I’m ok!”. Surgery went well but they did a lot more work than expected. Before I know it, he is back in the room, mumbling and falling asleep mid-sentence. Once I am happy he is ok, I catch the busy rush hour train out of Charing Cross (people actually do this every day!?!) and get home shortly before 9pm to find the most gorgeous bunch of flowers waiting for me (Thank you Katie and Brian! x). Yes, today is/was my birthday…
Tuesday 12th to Thursday 14th February
Rich stays in hospital and makes steady progress. Things are looking promising and he comes home on Thursday. He is chaperoned from the hospital all the way to his seat on the train (Thank you Katie! x). He is then scooped up at Robertsbridge station and driven home (Thank you Anne! X). I get home from a long day teaching to find a very tired and weary Rich. We make up a bed for him on the floor of the sitting room, so he is closer to the bathroom and hasn’t got to worry about the stairs in the night. This is where he has been sleeping at night for a while.
Friday 15th February
The pain begins in earnest. The progress he had made in hospital takes a few steps backwards. He should be having his pre-chemo blood tests today, but we decide with the oncologist that he’s not ready. He rests. Sleeps. Snoozes. But he is in pain.
Saturday 16th to Tuesday 19th February
The pain and discomfort persist and become increasingly worrying. He is extremely tired and even the slightest effort knocks him sideways. We keep ‘waiting and watching’ for that moment when he starts to turn a corner, but that moment doesn’t come. He just continues to feel nauseous and be in pain. We speak to the surgeon who reassures us that this is normal. Although surgery was key-hole, it was in fact a major operation and it could take 4 to 6 weeks for him to properly recover.
His appetite is still non-existent, and this is really worrying me. He has lost so much weight in the last few weeks that when I hug him, I worry that he will snap. He is malnourished. We have all sorts of high calorie meals and drinks from the hospital’s nutritionist but just the mention of food makes him feel sick.
Wednesday 20th February
I get up and get ready to go off to teach, but Rich is in a really bad way this morning and I have to do something. ‘Watch and wait’ no longer applies... I cancel my class. It’s been a gradual decline but today Rich completely hits rock bottom. For the first time in nearly 3 decades, Rich lets go and he cries. Big, deep, terrified tears. I hold him as he sobs profound tears of fear and pain. I feel his heart is terrified and he is totally overwhelmed by the all-encompassing dread and panic of what is happening inside his body.
He is due to have chemo tomorrow, so he should be having his blood tests done today. They are expecting him on the chemo ward, so I go with him and we speak to the matron. We both feel so lost and scared. We have all these different phone numbers for different doctors and nurses in different departments, but it becomes such a confusing challenge trying to work out who to contact in what situation and leaving messages that don’t get responded to. We need someone who can help us with this and guide us when it all gets too overwhelming, someone we can call in the middle of the night if needs be, who will understand and know what to do to help. Matron refers us to the Hospice at Home team. We are delighted, genuinely relieved. We get back in the car to drive home and this is when it hits me. Hospice at Home. Hospice…
Friday 22nd February
Another Friday, another appointment with the oncologist. Pre-chemo blood tests done on Wednesday are all ok, so we decide to dive in to the poison on Monday. I take him home so he can rest. This is the only remedy left, resting while swallowing armfuls of hardcore painkillers. I take a moment to myself to go and visit a friend who has just had a baby (Congratulations Liat and Shai! X). Having the opportunity to live these snippets of ‘normal life’ are so important. I get to cuddle this tiny bundle of scrumptiousness and I am reminded of just how beautiful and precious life is.
Saturday 23rd and Sunday 24th February
A quiet couple of days to top-up the batteries. And a bit of time to process the magnitude of what is happening. The cancer may not be in my body, but it has barged into every single aspect of my life, my heart, my mind, even my art. To the point where my life has been changed forever by this evil disease. I have moments when I get so completely overwhelmed by it all, I feel totally suffocated. The loud ringing in the ears comes and goes in waves depending on the level of anxiety. Then I pick myself up and gather my strength and get on with it. I speak to my sister in Geneva today on Skype, it is good to hear her voice. I know how difficult it is for my own family being so far away geographically, but even if they were closer, there is little they could do.
Rich has played such an intrinsic role in my own recovery over the last few years and I would not be here had it not been for his never-ending support and belief in my recovery. He has been my rock through insanely dark times as I have battled the demons of Post-Traumatic Stress Disorder and Bipolar. He has held my hand, hugged me and brought me a sense of safety I had never known before. I am apprehensive about the upcoming chemo but know that this is the only way forward. It’s my turn to be his rock.
Monday 25th February
I drop him off at the side-door of the Conquest Hospital, wave him off and go to work. I pick him up again at the same side-doors 6 hours later. He looks tired and his skin is grey. We drive home and he curls up in bed. I keep checking up on him, making sure he is hydrated and is taking his medication. The chemo hits him hard, much harder than we were expecting or were prepared for, but we put it down to the fact that he has gone in on the back-foot as he is still recovering from surgery.
Tuesday 26th February
Today is an insanely difficult day. He is feeling very ill and queasy. I am scared. I spend the day looking after him. He is weak and exhausted. He stays in bed on the floor snoozing and willing the sickness to go away. We are in touch with the oncologist who is very nervous about Rich’s reaction to chemo due to his history with it.
Rewind two and half years… Within days of Rich having his first ever round of chemo in 2016, I rushed him into hospital where he stayed in an isolation room in SAU (Surgical Assessment Unit) for 3 weeks. He was so sick that he very nearly died. It was the most horrific experience that has left us both deeply traumatised. He was mostly unaware of what was happening due to the medication, but he lived the physical pain. In contrast, I remember every single day, every single conversation. I held his hand throughout, washed him, counselled him, held him, kept him going. I hardly slept for those few weeks but finally he started turning a corner and began his recovery. THIS is why we are all so nervous when he has chemo, I am totally haunted by this experience.
Back to Tuesday… washing out sick bowls, making sure he is taking the right medication at the right time, drinking enough water, keeping the wood-burner going, checking his temperature. I am scared, he is so weak, and I fear he might be having a similar reaction to ‘that’ time in SAU. I say that I would like to take him in to hospital to be checked over. I am really worried. He is curled up under the duvet too weak to even move. He begs me not to take him in. He can’t face having to talk to anyone, not even the nurses. By his own admission, he always has to put on a front with everyone, even when he is not well. Today he hasn’t got the energy to pretend. But I am always alone in seeing this side of him and it is very difficult. It’s isolating. Everyone thinks he’s doing ok because he is chatty and then back at home the mask falls and I see what is behind: a terrified man.
That night I sit by his bed for a few hours, watching him drift in and out of sleep. Lola is cuddled up with us too. My tiny little family. I don’t know how, but I am somehow, so far, kind of holding it together. Mostly with adrenaline. When he lets me know he is ok, I go up to bed. I turn the light off and the tears come pouring out. I am hurting so deeply from seeing my love in so much pain. My heart is breaking. Insomnia has been an unwelcome companion of mine for many years, but through this it is giving me no respite at all.
Wednesday 27th February
I wake early to go and check on him. Neither of us has slept much. We realise that the 5FU pump of ‘48-hour takeaway chemo’ he was plugged into on Monday is completely empty. It was very low last night. It shouldn’t finish for another 10 hours. It seems the dose was administered far too quickly which could explain why he has been so desperately sick. It takes him all day to gather the strength to crawl out of bed and put some clothes on. I take him in to the chemo ward to have the pump removed and we speak to the lovely nurse who has looked after him since the beginning. He lets the mask drop and cries. I am so relieved that someone else gets to see how scared he is. She removes the pump and reports it to pharmacy. She gives us some helpful advice on medication, and we go home.
Thursday 28th February
I get home from teaching to find he is still completely worn out. He hasn’t been to the loo since Saturday and his tummy is hurting despite hardly eating anything. It is also still healing from the surgery. Just getting things moving again seems to trigger all sorts of spasms in his bowel which cause him such excruciating pain. The instinct to take him in to SAU is very present and I suggest this, but he wants to see if things move and bring relief. He sits on the sofa, eyes scrunched closed, pain written all over his face, moaning through gritted teeth. I make his bed up, he gets in and I sit with him for a while before going up to my own bed. I cry myself to sleep again. I am worn out and scared. In my mind I am back in that room in SAU again, holding his frail bony body. I wonder if this is how death takes hold, slowly, gradually weakening the body and the mind. Am I going to lose my soul mate?
Friday 1st March
The first thing we say to each other is that we had both been back in that room in SAU the night before... This is called trauma. He was able to go to the loo in the night and get rid of the build-up of toxins in his bowels, but it has left him completely drained. The nurse from Hospice at Home comes to do a home visit this afternoon to meet us and have a chat. She is lovely and falls for Lola’s charm. She explains to us that they are there to offer support and assistance to us day and night. But that doesn’t mean that he is at the stage of being admitted to the hospice. It really helps us to feel supported in a way that, so far, we haven’t felt.
Saturday 2nd March
Throughout the rollercoaster of the last few weeks I have been able to escape to the studio to do some bits of work between looking after Rich. The studio is my safe place, it brings me the sanity that nothing else really does at the moment. But I am only able to grab snippets before going back to check on him. But today I am totally worn out, I can’t focus, think or get anything done. I go to lie down on my bed in the afternoon and wake up from a deep sleep 3 hours later. This journey is also taking its toll on me and I worry I am burning out.
Sunday 3rd March
I rise from another sleepless night and come downstairs to find Rich sitting up with a cup of tea. He looks awful, his eyes are dark and sunken but there is a slight brightness about him that I haven’t seen in weeks. My shoulders drop by a few millimetres and I breathe a tiny sigh of relief. Is he coming out the other side of this dark tunnel?
I go and do some work in the studio and then skype my mum in Geneva. The sense of helplessness in this situation is very real for everyone around us. So many have offered to help. It is so kind and we are so grateful for the support. We are lucky to have such amazing friends that we know we can count on. Things like the laundry, cooking and shopping are practical things that at some point we might need help with but while I am still able to do them, I will. I feel a real grounding in doing normal everyday things to look after our basic needs and while I can hold on to this normality, I will. The biggest help we get is the emotional support, I am so thankful for the love and presence out there. And today for the first time in weeks I see a glimmer of hope in how Rich is feeling. There is hope, I see it and I feel it.
For the first time, he feels he could cope with seeing someone other than me and the dog! His brother Phil pops in for a very brief visit at lunchtime to give his little bro a hug. He is here for a super short 15 minutes, but it is completely lovely and just what Rich needs at that moment. Apart from going to the hospital, this is Rich’s first interaction with the outside world in a week. This whole ordeal over the last couple of years has brought the brothers closer together and it is a privilege to witness this.
I spend the afternoon at my desk writing this. It has been quite cathartic and has helped me process and put things back in a certain order. It has also made me realise just how insane and surreal this whole thing is. I go back into the house and find Rich sitting on the sofa. He is not in a good way, mentally. I sit down and we talk. He has had some heart-wrenchingly dark thoughts this week, he is so terrified that he shakes as he tells me about them. He can’t even look at himself in the mirror anymore because the sight of his scrawny body scares him so very much.
I hold him and tell him how we are going to fight all the way to get him back on his feet. He recovered from the SAU nightmare and from countless operations, he will recover this time. He has always responded well to chemo in the way that it batters the cancer, this is what we have to hold onto now. We have to believe and do all we can to build up his strength, not just physically, but more importantly mentally and emotionally. The first place someone gives up is not in the body but in the mind. He tells me he has had moments of thinking what is the point, I am going to die anyway. I pull him back from the darkness and towards the light.
We have had some crazy conversations since cancer barged into our lives. Sadly, we live in a world in which talking about death and dying is taboo. You can’t even mention the word without being met with awkwardness. It’s easier to pretend there is no such thing. But when you are actually facing your own mortality, which is what Rich is doing, then you have no choice but to talk about it. It has been a profoundly disturbing week and it breaks my heart to have these conversations, but the more we talk about the reality of the situation the better we understand what it all means, the better we are equipped to deal with the future.
I will not give up. I will keep fighting and keep bringing him back towards the light when he drifts off into the darkness. I will keep holding him as he has held me. I will keep believing that we are on the road to recovery and will do all I can the facilitate that. When we got married, we made a vow to be there for each other in sickness and in health. Rich is my best friend, my soul mate, my lover, my companion. Rich is my Tigger. I miss his bounce when he’s ill more than I miss anything else in life. He is the one I have chosen to spend my life with, and I will do everything I can to ensure that he is here for as long as possible and that he is as well as possible. Those of you who were at our wedding will understand that this is what we call the Power Of LOVE!!
Monday 4th March
It seems his appetite is finally, slowly returning on the periphery. Phew! Getting nutrients into his worn-out body is goooooood, even if the things he wants to eat are really random. We are slowly turning that proverbial corner. There now won’t be any more chemo until the end of this month, which should give him a bit of time to recover. On my request, it has now been agreed with the oncologist that the ‘takeaway’ chemo will be delivered as an inpatient treatment in the hospital, with doctors and nurses around him. We can’t go through this again. In the meantime, there will be psychotherapy for Rich through the Sara Lee Trust and a Carers Support Group for me. And along the way, every day, there are endless cuddles from our moulting, stinky, hairy loving Lola aka The Service Dog.
All any of us have is today. All we have is now. Make it count and be kind!