My Story so far (the lengthy version!)

On January 14th at 4am in 2022 Michael and I rushed into East Surrey hospital after the nagging pain in my back/ side had got significantly worse overnight and I knew something was really really wrong with me. We left quietly, the children and dogs still sleeping. Whilst waiting for the results of a CT scan Michael popped home to let the girls know what was happening. It was in that exact half hour whilst Michael was not at my side that the results returned and I was told by a young Doctor that the CT scan showed a ‘large mass’ around my left kidney. His face said it all but of course he couldn’t say much and I was speechless, numb. I felt sorry for him as he then said ‘I’m so sorry but I need to ask you to go back into the A&E waiting room and someone will be with you shortly’. Really and truly that is what happened. Life changing news but so many other patients to get through, his job continued. I had to wait. Alone. The pain suddenly accelerated. It was accelerated so quickly and violently that I started screaming and was immediately admitted back onto the A&E ward. It was a pain that made childbirth feel like a walk in the park. Pain so bad that I literally wanted to die and would’ve taken that option if it had been offered. Inconceivable. My beautiful life I would’ve traded in to be free of pain right at that moment. It was terrifying. Michael arrived whilst I was screaming but I was aware of nothing apart from engulfing pain. After a lot of morphine over 24 hours and other drugs administered that I can’t remember, the pain became bearable. I was still totally out of it however. It’s a bad time to get ill over a weekend it transpires as all the senior medical staff were no where to be seen and we had to wait till Tuesday for a Urology Doctor to come and see me. No one said the word cancer to us unless we asked and they sadly said it was highly likely. The Urologist told us he needed to refer me to the specialists in London but he suggested the mass needed to be removed urgently, and my prognosis was not good. The words ‘large mass’ were used again and again but not ‘cancer’ specifically although it was pretty obvious what they thought. I was referred to London Bridge hospital. When you are in this situation your brain shuts down and you hear things that are sometimes not the whole truth but of one thing we were sure of was that my life was in danger and I’d need life-saving surgery urgently. Our only thoughts were ‘how do we tell the children’ ‘this cannot be happening’, ‘how do we tell the children’. A Macmillan Nurse accompanied us out of the hospital so her pearls were given to us over a 10 minute walk to the car but they were good - be honest, don’t over explain, don’t project forward, stick with the facts and to tell them all together. So this is what we did. ‘My darling girls, I have a large mass on my kidney, they are not entirely sure what it is, they will do tests but I need to have an operation and it has to be removed quickly’. Just like that we changed their worlds forever. In a matter of seconds their worlds turned upside down. Our girls had had 4 days without me, knowing that something was desperately desperately wrong and now they knew. No words will ever be sufficient to explain how painful that was. I am their Mumma, they are my everything and I am their everything, and I had to relay their worse fears.

The next few days were frantic. We had two fantastic friends who made calls and stood by us every day supporting us with their medical expertise. All roads led to a surgeon called Ben Challacoombe, a leading Urologist at London Bridge Hospital. We zoom called him, I liked him and he said he had a theatre slot on the 4th Feb. We said yes. Life suspended, future uncertain and terror in every corner of our house. Looking into Michael and my girls eyes and seeing the fear there was the most humbling soul wrenching thing. It made my resolve to live unquestionable.

It still astounds me that in the face of the very worse life still continues to move forward. My world stopped but the world continued to spin around me. The girls went to school, Lily took her GCSE mocks (can you imagine?), Jazz continued to revise for her A levels and Rosie continued to get her homework in on time. Oh and then the curve ball – Lily and Rosie both got Covid whilst I was waiting for the operation. I was then confined to my room whilst Michael had to do everything in a state of utter paranoia that I would get Covid and therefore be unable to have the life-saving op. It was awful. The worst was that I could not hold my children. My love language is to hold and to hug – not only to my children, to everyone in fact! We had to have conversations from the bedroom doorway with masks on. I was terribly lonely and my family were lonely too. My resolve however at this time was just I had to get to operation day and get through it and I knew I could do that. I listened to worship songs and took such solace from being able to communicate with my friends and family on my phone. I couldn’t read my bible and that upset me until one friend reminded me that they were all holding me up and all I needed to do was rest under His wings as it was their time to battle and pray for me. What reassurance. And peace.

Pre-op day came and another shock as we had only just pulled out of Reigate when the same pain hit me again. We had no choice but to try to get to London Bridge hospital. I was in so much pain again, Michael tried to hail down ambulances (literally pulling over and running up to them) two stopped but couldn’t help, we flagged down a police car who also couldn’t help. So we sped through every red light, down bus lanes and made it to Guys which was the nearest Hospital. Who knew Guys didn’t have an A&E department so whilst we get into what we think is A&E and I’m being asked ‘so where is the pain’ we realise we don’t have time for the chit chat – amazing that there is no apparent up to date patient information held on a central system! They suggest I get to London Bridge where I’m due to have my pre op. Michael finds a wheelchair and wheels me through Borough market whilst I scream and vomit over the side. I mean it’s ridiculous isn’t it. We made it to our pre-op hospital department and they immediately called an ambulance. I was then taken by ambulance after some morphine which calmed me thank goodness to St Thomas’s as there IS an A&E department there. Full of respect for the 2 medics that treated me; just such kindness and so professional and I remember in my drug induced emotion a lot of hand holding and effusive thanks. What true heroes they are. More drugs to get the pain under control and a sense that the operation is of the utmost life saving importance now. We came home, hardly able to breath for the 4 days before the operation.

Operation day comes. Off we go. My manner is confident to the children as there is NO WAY I’m dying on that operation table. NO WAY. We go to London, they go to school. Life keeps going. Surreal. Because of Covid, Michael is not allowed in with me. Imagine that. So I am left without him. I don’t think I will ever come to terms with him not being in with me – it was so hard to sit there on my own waiting, being gowned up, the anaesthetist relaying the risks, the surgeons’ assistant telling me the plan, the canula going in, then the waiting again. All on my own. Desperate to just get in there and get this thing out.

My darling bro comes up to be with Michael and my dear friend Jonathan who wait for 4.5 hours whilst they operate on a 14.5cm tumour and remove it as well as my kidney. Full nephrectomy for me. It’s done via key-hole and I have never had so much respect and thankfulness for science. I was never in any doubt that I wouldn’t die on the operating table and I felt God’s peace with me throughout on that front. I felt utterly confident that between the skill of Ben, my will to live and Gods’ hand over both of us (and the medical team) that I would live and get through the operation. And I did. My family all waiting at home for that phonecall. I can’t imagine that wait. I had my two amazing parents, my brother, my sister, my three darling girls as well as Michael plus a group of dear friends all willing with every ounce of love they possess for me to survive.

I then spent 4 days feeling appalling in hospital. I mean truly appalling and could not stop crying. I was like a child again, I was in my own private room which whilst that sounds lovely, I wanted people, I wanted to see people doing ordinary things but I was in solitary confinement. My blood levels fell so heavily I had to have 2 blood transfusions and I continued to sob throughout. I wanted Michael so much to be at my side. Not the girls at this point as my mothering protective nature could not have coped with their upset and terror. I was in a lot of pain again but around my shoulder due to the air they had pumped in to me to blow up my stomach. Agonising pain – so many more drugs pumped into me. On day 3 I was able to walk so slowly, I mean so slowly around the ward and finally saw people. I wasn’t allowed home until I could make it up 10 stairs – cried like a baby and had possibly my first panic attack the first time I was presented with them but the next day I did it – slowly!

Ben Challacoombe checked in with me every day. Each time I could hear him coming, my heart would leap a little as it sounded like Michael when he returns from a cycle ride in his cleats. Clip clop clip clop over the sanitised floor. But no, it was always Ben doing his rounds of the London hospitals via his bike and in his cleat shoes. From what he could ‘see’ he was pleased he had removed the tumour and it’s horrid tangled web of nastiness which had meant the kidney had had to come out too. I owe him my life right now. So goodbye to Ben the Surgeon and hello to my Oncologist.  Our friend Ewan is a Pharmacist and again he recommended her – we have been very lucky to have friends in the game so to speak. No one ever wants an Oncologist but whilst I will never say ‘my cancer’ as if it belongs to me I will say ‘my Oncologist’. They are in the game with you and you need them. Desperately.

I returned home to my girls and Michael. Their faces such a relief to see again. I’d missed Lily’s 16th which hurt so much. Their faces etched with such love and such worry. Lily read The Hobbit to me every night curled up together in my bed, Jazzy spent every minute she could at my side and Rosie’s love for me is just apparent in so many places that others don’t see but I do. All of them helping around the house. Friends kept in contact constantly, dropped off loaves of homemade bread, we had a rotor for cooking and three precious friends took it in turns to bring us dinner (my sister in law reigning supreme over the organisation). Meal times are always a coming together for us and my friends continued to enable us to do this. So grateful. I had flowers, gifts, offers of holiday homes, gifs, silly texts, gorgeous positive love messages, snippets of scripture sent to me, worship songs. Just so much love we all felt. It was and is still is mindblowing.

The biopsy took forever to come back because it was ‘unusual’ and bits of it got sent round the country to the best brains in the country and whilst it was agreed to be ‘aggressive’ (great) it wasn’t behaving in a normal kidney cancer way and I won’t bore you with the details as I barely understood them myself. Oh and yes it was cancerous. Confirmed. After a couple of weeks however the incredible brains decided to treat it as kidney cancer. I had a clear scan post op and whilst that was great, I was also told in the same breath that it’s aggressive nature meant there was a 50/50 chance it would return. Unanimous decision by all the big brains that I should be treated with immunotherapy. I gently recovered from the operation over the Summer and regularly went up to London for the IV administered immunotherapy. Blood tests and cannulas my new norm. I was on regular pain killers and it was so hard to sleep as it was incredibly uncomfortable however over 3 months I got stronger. My warrior army of friends and family with me every step of the way, encouraging and helping on so many fronts. I even got back to running - determined to run the Reigate 5k with my friends and family to raise money for Ben Challacoombe’s charity ‘The Urology Foundation’.

Towards mid August I developed a pain in my back that wouldn’t go and prevented me from doing the last few weeks of training however race day came and I was so determined to do it. About 30 of us ran and it was a day full of love, for me and my family and it felt beautiful, inspiring and I felt strong with an inner strength I never imagined I could find. A friend had set up a prayer whatsapp group which has been a lifeline and still is. Filled to the brim with encouragement and love it propels me ever day to seek the light and never give up. SO many of those friends joined us on the run as did friends from other areas of my life. My parents came up from Hampshire, my sister came down from Norwich and my brother and sister in law and their two children ran with us. It was just so incredible. The next day I couldn’t get out of bed however and physically was in huge pain and mentally just broke down. Just for the day. I knew the next day I had to get up and get on. I’ve got my girls and I have to live for them and be there for them. I am their Mumma and they need me. Simple as that. So I did just that. And every day that I feel down, this is what motivates me and it’s how I get my shoes on and get out of the house (dogs help – they have to be walked!) and the moment I do it I feel better. On some days, when getting out of your bed feels impossible, this is no easy feat. Sometimes putting the washing on was too much. On these days I can’t begin to explain how my husband saved me again and again. Always with the right words, always the right suggestions with no pressure, just love. In sickness and in health put to the test.  Right from the start, he just held me whilst I cried and we’d get through it, make a cup of tea and continue on.

Septembers 3 month scan came and the news that the cancer had returned. Our world fell apart again in that instant. A new targeted therapy option called Cabozantinib was offered with every side affect you can imagine. It made me feel pretty awful for 3 months. Taste buds went, hunger levels fell, sore tongue, and I had such sore feet that they sometimes prevented me from walking (that was terrible), nausea, diarhorrea, and they all rotated so there was never a time that I wasn’t physically being reminded that my body was terribly ill. However, the back ache went literally over night once I started taking the Cabo so that was a bonus and I started sleeping well. NEVER will I underestimate the beauty of a comfortable nights sleep. The 3 months to Christmas were busy, I was still mentally delicate and feeling utterly weird but we did things together. We went to see the Christmas lights, I did all the shopping on line and 5 days before Christmas I had another clear scan!  We had a lovely Christmas (although Christmas day we spent 2 hours in the vets as the puppy ate half the Christmas cake). As I say, life just always carries on with all it’s quirks and turns.

Jazz and Lily took their GCSE’s and A Levels and threw themselves into their studies. Controlling what they could control. Both came out with a full set of A* and we could not have been more proud. To have done that with all they had going on is still a total wonder. My girls have shown nothing but honesty, strength and courage in the face of this horror. Going through such trauma as a teenager where life is fuelled by emotion has been hard. Hard for them as hard for Michael and I. Friends have stood by them, but there has also been heartache along the way and they have come home, we have talked and we have re-grouped and we have tried to explain that all we can do is to continue to love each other and to surround ourselves with others that love us. It’s teaching them a lot about people and who they want to be with, where trust, honesty and love is all important. And I think we all see the unimportance cluttering the real source of joy and love in our lives. Family has been key to me, my centre, and all I want to do is carry on being Mumma to my girls.

Three more months sped by. A day by day approach to life. Moments of anxiety and sadness coming and going but I am learning that I can control my thoughts, I can control how I deal with my path which I did not choose but it is now my path. And I am choosing life and living a life full of love. I have to seek it hard some days let me be honest but it’s always always there. I feel I am living in a world where the small, simple joys are everything with my girls and Michael at their heart.