I have seen my mother living in endlessly progressive pain for the past eighteen months but thankfully yesterday we found out that it will finally end; we just don’t know if it will be through finding a cure for her condition or the harsh reality of death and the helplessness is absolutely crippling me right now. I broke down today as I was driving to the gym just minutes after waving my two young children off at the school gates and kissing them goodbye with a smile bolted to my cheek bones as my throat set on fire and my eyes glazed over to fight back tears. I couldn’t speak, couldn’t move, couldn’t even think straight, I just had to try my hardest to hold it together, smile and wave long enough for them to turn their backs and get on with their day with the childhood innocence that they deserve. My mother is slipping further and further into the grips of her illness with every hour that passes and it feels like there’s absolutely nothing that I can say or do to save her. FUCK YOU BOWEL CANCER!!!!!!!
I don’t even know where to begin to explain what’s happening, why or how this cruel disease even got its hands on my wonderful Mum, but it did. Life seems so painfully relentless right now as it’s not even a year since we said goodbye to my beloved Nan who died at the age of 84 on 20th April 2016 and now Mum has fallen ill. My Nan spent the final years of her life living on medication to combat the symptoms and side effects of a longterm bad health with pills for treatments and more pills to treat symptoms of the pills she needed daily. I remember watching my Mum’s heart breaking at her funeral, clutching to Nan’s eulogy and sending silent prayers between a mother and child. My Nan was the most incredibly kind, selfless and caring woman, she filled our days with sunshine, never said a bad word against anyone and would give away her last penny to help others. My Mum wonderfully inherited her kind heart and raised me to see the good in people, the positive in every negative and to always spare a thought for others because no matter what you’re going through there’s always somebody worse off than you.
I too have passed their unconditional love onto my two children, Millisent 9yrs and Gabriele 4yrs for which Mum was with me at both of my births. The first when I was a scared single 19yr old bringing my daughter into the world frightfully young, alone and heartbroken. Mum held my hand through my pain, stroked my forehead to keep me calm, cutting the cord when my daughter was born as well as any proud father would have. She was my absolute rock when my world was collapsing around me and she helped me to understand what it means to be a mother, to love somebody so unconditionally that you’d give your life for them. Despite knowing nothing about babies or parenting my Mum patiently taught me how to hold my daughter, how to change nappies, wean and help her to learn, love and grow into the beautifully kind little girl that she is today, just how she’d raised me. From practising spellings to turning up with comic books and shiny shoes on sunny afternoons – Mum filled in all of the gaps and treats that I struggled to afford as a single parent so that my daughter wouldn’t ever go without and for that I’m eternally grateful. Fast forward almost five years and we smiled and laughed our way through the birth of my son as Mum again mopped my brow and politely told the midwife that I was ready to push when they hadn’t spotted the signs. Mum has this wonderful way of always knowing what to say, the right thing to do and how to make others feel safe and welcome; no matter what I’m going through I know I can do anything with Mum by my side.
Mum has never been a pushy parent, she never expected anything in return for her endless love and she taught me the importance of hard work and appreciation. I wouldn’t be even half the woman I am today if it wasn’t for my mother and the thought of losing her makes my heart want to explode in my chest, I wish I could take her pain away – I’d give anything to be in her shoes so that she doesn’t have to be. She doesn’t deserve this. Nobody deserves this. Mum has always been so healthy, so strong and invincible. Despite being a touch over five feet tall Mum has the strength of an ox and her bicep muscles rivalled most men when we were growing up as she’d carry me on her hip, my older brother on her back and bags of shopping in each hand on the walk home from town. Growing up Mum selflessly worked two jobs at a time to save up for our family holidays, night shifts to juggle childcare when we were at school and her cooking is always heartfelt and delicious; every meal loving prepared at home from scratch, and for many years dug up from our own home allotment which she’d tend to and water with a can and collected rainwater for hours and hours on end every evening when we were in bed.
My children adore Mum as much as they do me, we all do, she’s perfect in every way possible and the epitome of a mother in my eyes and all who know her. With every up and down in life, every rollercoaster I never thought I’d be able to hold on to or relationship that’s left me wounded and scared she’s always been there with the right words to say, a cup of green tea and some organic vegan biscuits from the local farmshop. She taught me to accept myself, to let go of what hurts me and build a bright and beautiful future for my children because love matters more than money and there’s nothing more precious than your health and time spent with the family. Whenever I’ve been stressed, tired or unwell she’s the first person asking me how I feel and telling me to see a doctor to get checked out because it’s better to be safe than sorry, but in all of her help and kindness she forgets about herself, put’s everybody else first and lives like she’s indestructible – which she has been, until now.
Mum has been going for blood tests, scans and reviews for the past year and a half with doctors, surgeons and specialists, sometimes she’d tell me about them, others she wouldn’t. She never wants people to worry about her because she sees that we all have struggles and problems in life and so she carries her own silently and never complains. I’ve gradually watched her go from energetically climbing trees and swinging upside down on play frames with the children to a frail, pale and gaunt shell of herself, unable to sit down because of the pain, constantly pacing the floor like a panicked wolf helpless to escape her torture. She can either stand up or lay flat on her back, no in-between, no more family meals at the dinner table, no cosy sofa snuggles with the children or trips in the car to go and do the food shop and stop off for a spot of tea and cake. She’s now so tired, tortured by broken sleep and pain-induced insomnia, frequently wincing with cramps and stomach pain and forever rushing to and from the toilet only to feel no better off upon her return.
I feel such a great sense of guilt for eating in front of her knowing that she can’t, with her tiny plate of bland food that wouldn’t keep my 4yr old fuelled past lunchtime, she rarely finishes a meal despite spending hours cooking lovingly delicious meals for the family. When I hear her voice on the phone her once vibrant chirpiness is weighted down with the severity of pain and suffering, the sparkle in her beautiful brown eyes now shadowed by her suffering. I feel incredibly selfish for saying this but I don’t want my Mum to die, I want to keep her forever, I need her, we all do.
It was a song on the radio which pushed me over the edge this morning, I Don’t Wanna Live Forever by Taylor Swift and Zayn Malik and the words hit me like a brick wall:
It’s just a cruel existence like there’s no point hoping at all
Give me something, oh, but you say nothing
What is happening to me?
And I don’t wanna fit wherever
I just wanna keep calling your name until you come back home
I want my Mum back, the happy, healthy wonderful woman who has always been my hero, why must she suffer like this? I remember my pet hamster developed heart failure from old age when I was just a child and I loved her with all of my heart, I cried my eyes out everyday before school having to leave her, terrified that she wouldn’t be alive by the time that I came home. Despite being shy as a child I had such a wonderful bond with animals and Mum always allowed me to have pets from rabbits and hamsters to birds and cats. The vet said that there was nothing that could be done for my hamster though, that she was too old and too unwell and any medication would only prolong her life rather than cure her illness. But Mum saw that I was suffering too in not wanting to lose her and spent hundreds of pounds in vet bills on keeping my £15.00 pet alive. She gave me that little extra time to understand and accept what was happening and to say goodbye to her and make peace.
Hearing that song on the radio earlier took me back to losing my pets, my beloved Nan and the very real possibility of now losing my Mum. Even the thought of my Mum dying makes me hate myself for fear of jinxing her, but if I don’t say the words, don’t acknowledge what’s happening the cancer won’t cease to exist. As I sat in traffic I found my mind whirring with the events of yesterday when I stood beside Mum holding her hand in the surgeons office of the hospital – because she can’t sit down – and his words slammed into my chest like bullets from a shotgun as he said stage three cancer. Cancer, three, three stages, that’s advanced, this hasn’t been caught early, it’s not the first step, the smallest and easiest to cure. Can it be cured? Will my Mum be ok?
The second I got home tears fell from my eyes as if watching a storm raging outside from the safety of a bedroom window. I couldn’t see, couldn’t breathe, couldn’t think, my body just reacted and I was helpless to it all. As soon as I wiped my eyes with the back of my hand the next flood of tears came, followed by the next and the next. How can I continue with my life as if everything is normal, as if everything will be ok when I know that it won’t, or might not, or maybe never will? How can a persons life suddenly become so unpredictable in the blink of an eye? One minute she had another thirty years ahead of her to make beautiful memories and watch the grandchildren grow and now there’s doubt over the next thirty months. I feel so helpless because no matter what I say or do I can’t save Mum, I just have to try my hardest to shield my grief from my children. They deserve the innocence and happiness that Mum gave me, not the fear of losing her that consumes me. And that’s why I wanted to share this experience with the world, because it’s a situation I never expected to be in, it isn’t about me it’s about Mum, but in Mum being so ill it’s had a ripple effect onto everybody else in the family and beyond. Cancer is brutal and it has no limits on how many people it touches directly and indirectly.
The surgeon explained that if my Mum should seek treatment for her condition then it would be a long and tough road ahead which would worsen before, if ever, getting better. As she’s unable to eat or go to the toilet properly due to the tumour in her intestines she’d first have to have a colostomy bag fitted which would involve surgery to reroute her intestines from her back passage to her stomach wall so that all waste passes into a bag rather than through her body. This would prevent her insides from blocking up and bursting which could result in the cancer cells spreading to the rest of her body and becoming terminal. Mum has looked like she’s nine months pregnant for the past year or so with her painfully swollen stomach, frail body and exposed spine and ribs as there’s not an ounce of fat on her. She’s always been slim but muscular, healthy, full of energy and vibrant but her recent multiple illnesses have left her with crumbling bones and a lack of mobility in her neck. She’s worked her entire life and now Cancer has taken away her health, freedom, ability to work and financial stability.
Following Mum’s planned colostomy surgery on 7th March 2017 the surgeon would like her to stay in hospital for around three days in order to ensure there are no complications and she can pass stools and eat ok before returning home. She also has to learn how to fit, remove and clean her colostomy bag and wound which is something she will have to live with for the rest of her life as her intestines will never work again. As the tumour in her intestines has attached itself to her womb she’ll need to have her intestines and womb fully removed along with any local tissue and the tumour to rid her of cancer, but as it stands the tumour is too large to do this successfully at the moment. So after healing from her colostomy surgery she’ll begin 25 sessions of radiotherapy and chemotherapy on a course of five sessions per week for five weeks at a non-local hospital in the hope of shrinking the tumour. Mum can no longer drive because she can’t sit down and due to Dad’s epilepsy for which he’s on life-long medication it’s only my brother in the house who drives but he works full time too in the opposite direction to where Mum needs her treatment. I live about half an hour away on my own with my two children for which I have the daily school run, work and commitments but I’m trying my best to get Mum to her appointments as and when I can.
Because of the radiotherapy and chemotherapy Mum will get very sick very quickly as it destroys both the good and bad cells of the body and ruins the immune system so Mum will not only be weaker, frailer and in more pain but more susceptible to getting seriously ill from the slightest of colds, coughs, germs and sneezes. Having two young children it’s pretty commonplace for them to catch whatever’s going around at school so it’ll mean seeing less and less of Mum at a time when she needs us all the most. But if all goes to plan and the tumour shrinks enough by the end of the radiotherapy and chemotherapy then they can discuss the possibility of surgery. The surgeon couldn’t give me any assurances, any statistics on survival rates or any ounce of hope for Mum’s recovery despite how desperately I needed it. I understand each patient is individual and t’s taken in a case-by-case matter but I wish I could hear the words she’s told me so many times over the years; everything will be ok.
Mum accepted her diagnosis and treatment plan with such bravery and dignity, holding her head high and taking the surgeons hand into her own as she thanked him from the bottom of her heart for his diagnosis and treatment plan. I squeezed her hand fighting back tears, not wanting to make eye contact incase it pushed her over the edge and she’d break down. The nurses who were quietly standing on the sidelines then made themselves known and I never realised when we walked into the room that they were there for damage control of the fate that was bestowed upon Mum. But despite being delivered the blow of her diagnosis Mum greeted the nurses warmly and when asked if she was ok she smiled and thanked them for their support. She looked like a small child, calm and wide-eyed as she received each booklet, plan, package and pamphlet to do with her impending surgery and declining health which amounted to a large stack of literature that you’d expect to take home from school at a parents evening at the end of the summer term.
After several minutes Mum apologised for interrupting to ask to go to the toilet as she finds it difficult to hold it in when she gets pain to go and in the few minutes it took her to leave the room and come back a nurse asked me if I was ok and if I had any questions. My voice trembled as I tried to let out a squeak having stayed silent for so long. I couldn’t stop the words from bumbling out “Is my Mum going to die?” to which she inhaled sympathetically, “Will she be ok?” I begged, “Is there a high survival rate?” Her eyes darted to the door and our discreet conversation ended just as quickly as it had begun as Mum walked back in and thanked them all for their patience in waiting for her. I looked towards the window to blink my eyes dry and stop my bottom lip from quivering as Mum stood beside me once more picking up a colostomy bag to ask how it works.
The rest of the day was a bit of a blur. Mum had to have some more blood tests and an MRSA swab before we stopped for a coffee on the way to the car and I could finally drive her home. Bunches of bright pink flowers lined the kitchen counter top, get well soon cards, boxes of chocolates, bottles of wine and endless telephone calls of sympathy and support followed by unexpected visitors at the door. Mum is so wonderfully loved by all and it was a heart-wrenching moment to see her break the news to the family. We’d all secretly hoped there would be a magical cure, a special course of specific antibiotics to get her insides up and working again, an undiscovered holistic therapy or new fad diet for the next several weeks to help everything to clear, yet cancer was the only option that I refused to entertain. Yet bowel cancer is the second biggest cancer killer of all and I’d never known, seen or heard anything about it until now.
Mum has very bravely decided to share her bowel cancer journey with the world after I told her about the blogs that I have written when I’ve been through surgeries and sickness in order to reach out to others in the same situation, raise awareness and help to encourage people to visit their doctor and get tested should they notice any similar symptoms or warning signs. My Mum is an incredibly private woman, has no social media accounts and doesn’t ever shop online. She doesn’t wish to identify herself to the world and as such she has asked me not to use her name and to blur her face from the pictures because she doesn’t want to make this blog about her but instead to share the details of her journey in the hope of raising awareness and helping others. She wants you to know that she is a real person fighting a very prominent form of cancer that isn’t spoken about enough. I hope that you will help me to support her through this difficult time with your kind thoughts, well wishes and prayers and welcome you to leave your comments at the end of this blog.
For ease of reading I will type all of Mum’s words in this green font as she shares her thoughts.
I am a very private person and I never put myself into the public eye. I’m always the person at the back of the crowd or taking the family photo but I would like to share this experience so that if anybody is in the position that I am now then I hope that they will pick up on the signs earlier than I did which may save them from a great deal of treatment in the future.
From the age of 49 I found eating pasta made me feel bloated and swollen so I started to consciously have less of it in my diet. I’ve had problems with my intestines for about four years now. I thought I had a wheat allergy because every now and again when I ate pasta, bread, cakes or biscuits it seemed to aggravate it more and my intestines would swell up and hurt. I had on and off pain every now and again for years on end, sometimes daily, weeks or months apart so I couldn’t place my finger on the precise cause. I tried to self diagnose myself, nobody actually told me that I had a wheat allergy but I tried to make sense of what I was going through as I didn’t feel ill in myself, it was more apparent when I ate certain foods so I decided to cut back on them.
It wasn’t until I tried to move an old cooker out of my kitchen one Saturday in July 2015 when the oven door flew open as I was carrying it and hit me in the leg which made me jump, pulling my abdominal muscles I clung hold of it so as not to drop it. As the day went on my stomach started to hurt more and more until it became almost unbearable. On Monday morning I went to work taking painkillers to get me through the day but returned home after four hours when it became too much for me. Three days after my accident I visited my doctor and asked how long it would take for the terrible pain to go, that was when he told me I had in fact strained my abdominal muscles and after 4-6wks I should be ok again. He gave me some strong painkillers to help whilst I healed and told me to rest but it didn’t remove all of the pain. My intestines then flared up preventing me from going to the toilet and I was in severe pain with it from that point on but didn’t go back to the doctor as I waited patiently for my stomach muscles to heal, believing that I would get better.
Whilst healing I found it very difficult to do day-to-day tasks as I was in constant discomfort from not going to the toilet and my stomach was permanently swollen. I could no longer wear jeans and found it a struggle to eat or drink considering the amount of food that went in didn’t match the very small amount that came back out. This caused my intestines to swell and back-up with decomposing food which made them protrude like a stiff string of sausages on the surface of my stomach. Much like a pregnant woman the lumps kept on moving, one day they would be high and the next they would be low. I still tried my best to carry on, some days were better than others depending on the pain, but there was always pain.
Because the pain became so severe eventually I went to accident and emergency at the local hospital and they took my blood pressure, samples of my blood and monitored my elevated heart rate which all finally came back clear as they acknowledged that the pain I was in had caused the high readings, finally sending me home with laxatives to clear my internal blockage. Finishing the course of laxatives the cramping pains to force me to go to the toilet were still so strong that I decided to then reduce my food intake thinking it would allow my intestines to clear, but no matter what I did they never emptied fully. My tastebuds also changed and I couldn’t stand the smell of tomatoes or onions which I had once loved, in fact the smell of most foods, tea or coffee made me feel ill – especially milk. As I struggled to eat I dropped 22lbs in weight in a matter of weeks and became almost skeletal, so I began drinking whey protein shakes as a meal replacement in order to wean my body back onto food. I also started to drink an L-Glutamine supplement to repair my intestinal tissue but I never returned to hospital, instead waiting patiently for my insides to heal and recover.
Months passed and my condition didn’t improve but I was finally able to have a small meal whilst passing only a small amount of waste. I booked in to see my doctor to ask again for help; after taking two blood tests my doctor referred me to the hospital for an internal and external urinary tract scan as a routine check to my womb after finding a lump in my stomach, but the results came back all clear. The first blood test revealed an abnormality and the second blood test confirmed I had high levels of the parathyroid hormone, high levels of blood calcium and low levels of vitamin D. I was referred to a specialist at the hospital who diagnosed me with a faulty hyper parathyroid – located in my neck next to each thyroid – which had prevented me from absorbing any calcium, forcing it back out of my bones into my blood stream and causing pain and premature osteoporosis despite having been through the menopause naturally, it sped the osteoporosis up.
I then had to attend hospital appointments to have a dye scan to show which parathyroid was causing the problem and it was found to be one of four, with two located on either side of the thyroid and one of mine being twice the size it should be. After joining the eight month waiting list for surgery I then visited my dentist for a check up and was asked to return three times because the left hand side of my jaw was swollen and it wouldn’t subside. I didn’t think to mention at the time that I had a hyper parathyroid but when asked what had changed in my health recently I suddenly realised that the two could be connected. My dentist advised I call my surgeon requesting immediate medical attention with evidence of my dental condition. Within a week I received an appointment for my pre-op at the hospital which involved having a blood test and MRSA swab test and led to my hyper parathyroid surgery a few weeks later.
In October 2016, a year and three months after my intestinal began, I attended day surgery at the hospital and everything went to plan. Despite having crumbling vertebrae at the top of my spine I was put to sleep with my head carefully tilted backwards in order to access my throat. The faulty hyper parathyroid was removed entirely leaving me with a three inch horizontal scar across the front of my neck which was covered with a dressing and I returned home. I’d never once suspected anything was wrong with my throat as it was my intestines which caused me such pain all along, but for three days after my surgery I was astounded to be entirely pain-free for the first time, I now realise it was the effect of the anaesthetic which then wore off and the pain returned.
As the surgery had taken preference over my bloating I’d only ever been treated with laxatives by the doctor and hospital for my swollen stomach so I didn’t return for a follow up appointment because I thought that my diet had to change. I realise I’d confused stomach pain with intestinal pain and as such nobody located the cause of my suffering which came from my lower back, abdomen and intestines as the focus had been on checking my womb due to my age. The doctors were simply ruling out possibilities without finding any results. I have been vegetarian for about twenty years and aside from that my diet has never changed dramatically, I’ve always eaten fresh produce, cook meals from scratch and rarely have take-away or fast food so didn’t class myself as unhealthy.
Now I feel so normal, I’ve got used to living with pain but I’m no different to how I was before I was diagnosed with cancer. The pain in my total intestines been blocked has shifted to being in just one area now which is where the tumour is at the bottom. It’s something I’ve grown inside myself without knowing but it’s just one of those things. I don’t worry about it, it’s there and it’s not going to be there in the future. It doesn’t have my consent, it snuck in and it has to go. I’m not awkward around people about my cancer and so they’re not awkward around me. Because they see it doesn’t phase me it gives them the confidence to have a little joke about it. I’m confident in myself and it’s my life, I don’t expect people to go through this for me, I don’t worry about myself. If it was my family, my husband or children then I’d be worried. Whenever I see somebody hurt I worry for them, but when it’s myself I just get back up and carry on. You always worry for other people but never yourself; that’s just my attitude to life.
Nobody has avoided me, if I was a different type of person they may have been a bit more wary of my situation. Probably a stranger would react to me different because they don’t know who I am, I’m still able to joke and laugh and they do so with me, perhaps they wouldn’t have been like that with somebody else if they were upset. I think it all depends on the individual. When I heard my diagnosis of cancer I wasn’t really surprised. For a year and a half not to have a diagnosis I knew something was very wrong, you know yourself when something isn’t right. I was grateful to know what it is and to finally be out of limbo because it was frustrating not knowing. If you have a diagnosis then there’s a means to an end, to not know what’s going on and live in pain you question if there will ever be an end to it. I’m just grateful to be diagnosed at last. The waiting to find out what’s wrong is the longest time and you lose patience when you’re in an uncomfortable position. How can you live like that? Not knowing how or when it will end.
I’m looking forward to my colostomy surgery now because I’m sick of constantly wiping my backside, it’s cost me a fortune in toilet paper and I know that my family will never have to take me to the toilet when I’m old and senile! Because I’m can’t do proper poo there’s only little bits of softness, you can’t push it out in one piece or have a clean wipe, it’s just tiny slithery bits that never totally come out or clean away. Sometimes I have to use wet wipes to clean myself because tissue doesn’t put an end to it, you never finish doing what you’re doing because you can keep wiping and wiping and still it comes, it gets very uncomfortable. But I’ve found taking a bath helps to soothe it, I dream of doing a solid normal poo, to wipe my backside and then leave the toilet and get on with my life.
It’s the fibre that can’t come out because it gets caught and blocked on the tumour and anything remotely solid can’t get through. The fibre caused my pain in backing me up as it caught and lodged in my intestines and the waste putrefied inside me. I can no longer have vegetable skins, nuts, cakes with sultanas or raisins, nothing wholemeal, no porridge oats, brown rice, no ryvita crackers or anything I thought was a healthy alternative to bread and potatoes. I can have a jacket potato though, minus the jacket because it’s fibre.
I’ve only ever been into hospital for minor operations before such as my parathyroid, appendix, a six week stay for the premature birth of my son, to delivery my daughter and the odd accident and emergency visit. I don’t surmise what my treatment in hospital will be like because I’m taking it step by step as to what will happen next. As I go along I’ll know more and more, I haven’t read the pamphlets yet because I’ve been too busy since I found out what’s wrong with me; I’ve had visitors, phone calls, flowers, it’s lovely that people have spent time with me and shown me that they care I just wish they didn’t worry about me and I don’t want to put them out of their routine. Everything you do in this life has a knock on effect on so many people, this has effected everybody else’s life but I don’t want anyone to worry because I’m not worried about myself. It’s life, everybody is going to get something that goes wrong with them, there’s only the odd few who are super human. I’ve accepted it and I’m more concerned with my family and how they’re feeling.
I’m not scared about having cancer, it’s just how I am. I’ve never really been scared of anything. The only time I’ve been concerned was when I went for a pre-colonoscopy check – to see if I needed a camera up my backside – and worried that I’d make a mess because I thought I just had diarrhoea but it wasn’t, it was the liquid leaving my bowels and not the blocked solid faeces. There’s a continuous cramping from the solids wanting to come out but it gets stuck and so the body carries on cramping which leaves me in continuous pain. Having laxatives breaks it all down and allows it to clear out but then it builds up again with fibre and can cause my tumour to burst from the pressure of the build up. I take a half measure or laxatives in morning and then again at night so as not to cause a rapid release of poo and risk any extra damage.
The first time I had laxatives I thought of the long term harm of living on them and what damage it could be doing to my insides so I stopped taking them for a week or so when I really shouldn’t have done. If you get told to take something by a doctor then you should keep taking it until you’re told to stop – they know what they’re doing so don’t be swayed by your own judgement or think of the future, you have to think of right now and what’s necessary. I think because I’d gone through the menopause I was so used to aches and pains that as it got worse it wasn’t so noticeable. I’ve never know what cancer feels like before so I thought it was just my age and my life long stomach pains, you just get used to it which isn’t good because you don’t panic about anything when you’re used pain. I didn’t see a red flag in my health, to me that’s more like having a broken leg, you can physically see it and it’s clear that something is wrong. Because pain became so common for me I was still able to be healthy and live my normal life without anybody realising. You just carry on and don’t moan.
Before my diagnosis if somebody had told me that I’d have been in pain for 18months then I don’t think I’d have coped with this. Some days I did get low because I didn’t know when or if it would end. It was like having a non-existent life, nobody could see any physical suffering to know that I was in pain and if I did anything normal people would think I was ok and over it when I wasn’t, I just wanted to be normal and because of that my body would take longer to recover from severe back to normal pain again. For every action I paid the price especially for trying to mow the grass or stain my decking in the garden, but I wanted to get it done. I guess I forgot I had osteoporosis and the likelihood of easily breaking my bones.
I have a collection of health complaints that I need to get rid of and I’ll work on them bit by bit and take one out of the equation at a time. I’m fortunate that all of this hasn’t made me depressed, but I’m not that type of person. I never worry what people think of me because they’ll make up their own minds. If this had happened when I was 20 years old then I’d have been very worried for my children. I’m 59 this year, my children have grown up and I adore my grandchildren. I have nothing against life, I’ve lived my life, what’s the point in worrying when it won’t do any good. I’m still alive and living, life is just a little different right now. I’m not angry or sad or depressed, cancer has become a part of my life right now, that’s all.
A relative suggested that I read a book called ‘Next To You’ when I was ill before my diagnosis and it was strange to see that I was going through the same things as Caron – Gloria Hunniford’s daughter – who died in her forties of breast cancer. Although I don’t have breast cancer I felt similarities to how she was treating herself – drinking green tea, turning to natural remedies to help boost her immune system, upping doses of vitamins, cutting out wheat, no processed foods etc. As I’ve been reading it during hospital appointments this past year I saw how she lived her life normally in between feeling so bad just as I do. She didn’t let it stop her from having a life, she carried on despite being sick.
The story is told from Gloria’s perspective and quotes Caron’s diary as each thing happens. But she didn’t want anybody to know she had cancer because she was afraid they’d treat her differently and I think she was frightened of the sympathy. I don’t want sympathy either, I want to celebrate life and it doesn’t stop me telling people I have cancer because people shouldn’t be frightened about it, they shouldn’t worry about it, it’s a progression in life and something we all have within us that sometimes gets triggered. If you don’t get cancer then you’ll get something else as you get older, that’s part of life. I saw how my Mum felt when she passed away that we didn’t tell each other about our sickness or troubles and we should. Not in a worrying or sad way but a cheerful honest way so others understand. You shouldn’t be worried about sympathy, you really don’t need it, just treat cancer like an everyday thing and have banter and lift your spirits because lots of people go through it so why be scared of it. Some are strong, some are weak but the cycle of life is to live and die and it’s what you make of the time between those two markers that matters. We all have to do go someday so we should enjoy the experience of living while we’re still here.
You expect people to look differently when they’re ill, some bloat some lose weight, my body is changing anyway because I’m getting older. I’m not body conscious and never have been, I have what I have and I don’t try to change it. When I first got ill I was 8st4lbs and now I’m just over 6st. I eat continuously all day, little and often to keep the weight on me because I need the energy to deal with what I have to deal with, my immune system and ticking over. I do struggle to hold weight now, the trouble being that when I ate fiber before I didn’t feel so hungry but now that I’m not allowed it I’m constantly hungry but can’t get enough food in me because it won’t come out unless I use mild laxatives daily. It needs to process gently rather than be forced out. If I ate a normal sized meal I’d do irreparable damage to my intestines and bowels which is why I have to nibble little and often to reduce the pain.
I don’t worry about what any of my treatment will be like because the last 18months I’ve constantly thought about trying to cure myself and it’s been the wrong decisions so until I have all of the facts now I won’t make a judgement. When I’ve read all of the hospital booklets I’ll have my answers; if one thing it’s taught me not to presume this or that, have it as fact first because I’ve probably made myself go through unnecessary things in trying to cure myself. So many people have suggested possible causes of my pain from irritable bowel syndrome to food allergies and so forth, so I always looked along those lines in an attempt to cure it. I think it’s positive for people to make suggestions because it’s sometimes it raises things you wouldn’t have thought of that you can then rule out. You should listen to all opinions because symptoms can be similar but always see a doctor. Going to the doctor for one problem is different than having multiple problems like me because it’s been like a case of Where’s Wally, there’s so many different issues with my health that some symptoms are hidden because you focus on the most prominent pains and work your way back. For me, cancer was the last of a long list of things to be discovered because of my parathyroid and osteoporosis.
Before I had children I used to wear skirt suits and dresses, when I became a mother I went into jeans and trousers and never looked back because it was far more practical. But when my health problems started I could no longer wear jeans because my stomach swelled and was constantly painful so I stuck to dresses because they’re loose and comfortable. Even in the winter I wear dresses, cutting my tights to remove the waistband so nothing touched my stomach but it’s draft on a cold day and when I lean down I often catch my dress and tore my favourite one whilst standing up too quickly. I’ve worn the same few dresses over and over and two of them disintegrated in the washing machine. I’ve got no choice of what I wear anymore it’s just something that’s comfortable until I can get my health back.
UPDATE: 01/03/17 6 Days Until Mums Colostomy Surgery
Yesterday Mum asked me if I’d take her shopping to stock up on essentials before she goes into hospital because she had several shops to go to to find everything she needs and can no longer sit down, drive or carry anything heavy. She’s also had a large lump come up in her leg which they think may be a hernia and she’s seeing her surgeon tomorrow to have it checked over when she goes in for her radiotherapy tattoos – two dots on her torso to align where the laser has to go each time for her treatment. I can’t believe Mum is going to have tattoos – she’s always telling me off each time that I get another one!
This morning as I was getting the children ready for school so that I could go to Mums I had a message from a friend who moved away a few years ago and she very cheerfully wished the children and I well and asked how things were going. She didn’t know about Mum and I hesitated to tell her, speaking about it, thinking about it, entertaining the idea of cancer even makes me shudder. I have such a heavy ache inside of me for her, it’s cut me to my soul and I’m scared sh*tless that I’ll lose her. I don’t want my Mum to die, I want to take her away from this all and wrap her up in cotton wool, to hide her from anything or anyone who can ever hurt or upset her. I hate this helplessness, I hate how cancer has such a grip on everything and everyone around me now. Mum is going through it but we’re hurting for her and it’s something I have to hide. My eyes are bloodshot from crying, my face expressionless from the torment of helplessness that I can’t escape.
After attempting several times to stop my tears to wash my face and re-do my makeup I rushed the children to school just in time and onto Mums where I was greeted at the door by her frail smile and everlasting cheerfulness. She’d got her coat and shoes on and was all set to get out of the house and go shopping after so long, she looked like a child dressed in their mothers clothes, so tiny and proud.
Mum was very slow to walk, shaky at times and had to stop and rest when sudden pains took over her stomach and I flapped around her like a headless chicken – “Are you ok?” “Shall I take you to the hospital?” “Can I get you something to lay down on?” I don’t mean to panic her but knowing that her insides could burst at any time I didn’t want to put her in danger. She took it slowly and walked all of the way around the various shops and it took just over 5hrs to get everything she needed. Stain remover for the laundry, razor blades, baked beans, vegetables to freeze, bread, bin bags and of course the monstrous amount of toilet tissue and rice crispies that she’s living on until her colostomy surgery.
Mum looked beyond shattered when I dropped her home and it was a struggle for her to get out of the car from laying on the reclined front seat. I didn’t want to leave her but had to get the children home for bed and school in the morning. I hugged her for what felt like an eternity, kissed her on the cheek and asked her to call me if she needed anything. I expect she’ll need time to rest and recover after today because she was so unusually active but I know she was worried about having everything in order before going for surgery.
Driving back home it felt like two different worlds, Mums suffering encapsulated in her home and all of the memories I have of seeing her in pain for the past 18months, and then I walk through my front door to giggling children, bouncing cats and dogs and everything bright and cheerful. My life as Mums daughter and my life as my children’s mother are poles apart. It’s when they cross over that I can’t stop myself from crying. Seeing Mum, speaking to Mum, helping Mum brings me so much love and pain at the very same time. All I can do is pray x
Mum’s next appointment is at the hospital for her colostomy surgery on 7th March
UPDATE: 07/03/17 Mum’s Colostomy Surgery
The day for Mum’s surgery has finally arrived and I was so anxious for her. The thought of her being in hospital is strangely reassuring because I know that she’s in good hands and getting the help and treatment that she needs for her recovery and the long fight that she has ahead of her. But at the same time it’s the fear of something going wrong, complications, further damage or finding out that it’s worse than they thought. Before getting ill Mum was never in hospital, never went to a doctor, never complained about pain or discomfort she was my hero with endless energy, strength and stamina but now she’s a pale, frail little child and wasting away before my eyes.
Thankfully Mum’s colostomy surgery was a success and went as planned. Standing outside the door to her room as she was wheeled back from recovery I caught her surgeon as she was leaving and asked how she was as the nurses took an ECG and blood pressure. Mum arrived in hospital at 10am for her surgery after fasting since the night before but was unfortunately delayed because the patient in before her had complications and it pushed her back.
As it was outside of visiting hours there was nothing I could do until the evening when I was allowed in, the surgeon said that it was a simple procedure that took an hour and a half but Mum seemed to think she was taken in for surgery at 1:30pm and didn’t arrive back in her room until 7pm so I’m not sure if the anaesthetic made her forget herself or if it took place much later. When I saw her wired to a drip with compression socks and a blood circulation machine pumping her legs, catheter hooked onto the bed and blood creeping through her gown on her stomach it made my throat swell and I took a moment to compose myself before I asked her how she felt.
She was deathly white, had to lick her lips to gain enough moisture in her mouth to speak and said that she found it hard to breath and had been on oxygen for some time before being allowed up to the ward. From past surgeries I’ve always woken up shaking and cold on oxygen so I think it’s more her response to the anaesthetic rather than what was done. The surgeon had said that Mum could have a coffee so long as she took little sips at a time so as not to throw up so I got her a Costa latte from the machine down the hall which is her favourite and by the time visiting was over she’d followed it up with a cup of tea and two glasses of water and her colour returned to her face and she felt better. She was also allowed a little pot of jelly and ice cream as food had to be reintroduced slowly to allow her stoma to work and recover.
She pulled back her gown and showed me the bag which was on the left of her stomach just above her underwear line and had filled with blood as it looked very fresh and red raw. She said it felt tight and sharp and her breathing was restricted because of it but the nurse advised she take the pain relief offered to her to keep her in a comfortable state rather than going without as we’re very much against medication and pain relief at home and much prefer to have a clear head and feel any discomfort that could lead to injury if you’re drugged up and not aware of it. I think Mum was relieved to be medicated even though it went against her normal preferences but this isn’t a normal situation for her to be in.
Mum now has to inject herself once a day with a needle pen to stop her from clotting and following her first day in hospital on total bed rest she’ll then slowly introduce exercise and be expected to walk about and keep active bit by bit until hopefully coming home at the weekend. She needs the colostomy bag to work properly and to know how to use and change it and which attachments work best for her as there are so many available and it’s a case of trial and error to see which she prefers. It’s a lot to take in in such a short space of time but thankfully whilst she was unconscious they were able to take a deeper biopsy from within her rectal tumour in order to give a final diagnosis of her cancer and tick the final box of testing. She’s already had her referral for her chemotherapy and radiotherapy to begin now that her surgery was a success so she’s just waiting to hear on the date of her 5week course starting.
As the rest of the family want to see Mum it means that only two people can go at a time each evening so I can’t see her again for another four days and she has no phone or way to communicate with us all. I hope she rests up and everything works well so that she can come home safe and sound and continue with her treatment, she’s one stage down and another two to go – chemo/radio and then hopefully bowel/womb removal to rid her of cancer. Once she’s home and ready to talk I’ll ask her to tell me all about it and fill you in with her thoughts, only four more days to go.
UPDATE 10/03/17 3 Days After Surgery Visiting Mum In Hospital
Seeing as all of the family wanted to visit Mum following her surgery it meant that my daughter Millie and I had to wait until today to come back again to visit because of limited visiting hours and only two people being allowed in at any time – the no under five’s rule also meant my son couldn’t come.
Seeing as Mum could eat and drink little and often we surprised her with a chocolate bar and latte from the vending machine as no flowers were allowed so we’ll save the bells and whistles for once she’s home. I was absolutely gobsmacked to walk into Mum’s room and see her standing up at the window looking out at the carpark and as we called her name she turned around to greet us with the biggest smile. How on earth was she so mobile!? Mum had regained her colour rather than looking shaky and pale as she did just a few days earlier. She’d had a shower and her hair was prim and the new dressing gown I’d bought her fit her lovely keeping her snuggled and warm and it melted my heart.
Mum was elated to have her tubes and wires out so that she could get out of bed and move about. She’s always been such a strong, fit and active woman, never sitting still and never complaining about her workload, yet assigned to a solitary hospital bed in a private room with nobody to talk to, no television, radio or telephone could quite rightly so drive her to distraction. It made me laugh when she said she’d feverishly spoke to everybody who entered her room, cheerful talking to the cleaners, nurses, doctors and surgeons who came to check on her – she’s made so many friends already!
As I perched on the foot of her bed she paced in front of the window slow and steadily and my daughter dropped her school bag into the corner and copied up into a chair eager to play charades. I asked Mum if she stood because she still couldn’t sit or if she was so bored of sitting she’d rather do anything else and she said the faster she returned to normal the faster she could come home so she’d paced the halls for hours a day slowly walking from one end of the hospital wing to the other and back again because the nurses said that exercise would do her good and get her stoma working properly.
As she sipped on a cup of asparagus soup she merrily told me she was back to eating real food again. Soup was her evening snack along with a white bread cheese sandwich, yogurt and a cup of tea which Mum had chose from the menu. For breakfast she’d scoffed two slices of marmite on toast and for her dinner at lunchtime she loved her sweet potato and goats cheese pie with new potatoes, pea pods and cheese and crackers for afters. She’d also been spoilt to cups of tea, coffee and water throughout the day along with shortbread biscuits which amounted to around 2litres of fluids – possibly more food and drink in one day than she’d had in the past week before her surgery because of the pain she was constantly in. And Mum could sit down again! Slowly she lowered herself into the chair and explained how the pressure from her bowel had relieved and for the first time in 18months she could use a chair.
As she nibbled on her latte and chocolate I asked her a million questions about how she was feeling and what she’d been doing along with the advice from the nurses which I’ll try my best to summarise; she slept just 1hr on the first night following surgery because she was medicated and found the surgery and process overwhelming. It didn’t help that the blood pressure pumps on her legs went off continuously every few seconds and kept her awake which was why she was so keen to get walking so she wouldn’t need them. She had pain relief through an IV wired into her hand which she snagged a few times and became very conscious of as a result of it. She always sleeps on her side to relieve the pressure at home but in the electronic hospital bed she was on her back with her head raised. She also found it hard to breathe as breathing deeply pulled at the stomach yet shallow breaths made her feel breathless and panicky.
Just before 9am the morning after her surgery Mum requested to have her catheter and leg blood pressure pumps removed which sounded invasively uncomfortable from how she described the removal process – a balloon inflated inside of her and tubes pulled out. The nurse then helped her to sit on a stool in the en suite shower room to clean her down as she was still very weak and hadn’t got used to walking yet. Her colostomy bag filled with blood from the surgery and she was unable to pass any faeces for three days post-surgery – the moment we arrived was the first time her stoma had actually worked. She then had her IV of pain relief removed and was given a laxative drink twice a day along with an enema into her stoma which involved inserting a dropper into the hole in her stomach to push liquid in to stimulate the bowels which worked after a couple of hours. Mum’s colostomy bag filled to about a third of the way with rich brown squishy poo, more solid than diarrhoea but will never be firm like adult poo. The nurses said it would take around two weeks for Mum’s bowels to re-regulate.
Mum’s stoma is classed as large for the fact that it protrudes a few centimetres from the skin of her stomach which helps to reduce infection post-surgery but it will shrink slightly as it heals. Her stoma rather comically releases trapped wind without warning and Mum winces a second before erupting with a cramp as her only indication of what’s happening. It’s actually rather loud, just as loud as a regular fart would be – only with absolutely no smell which is brilliant because it used to smell putrid from the poor old state of Mum’s insides. Mum takes three paracetamol each day, Tramadol tablets for pain and Laxido liquid laxatives after her food to keep her regular. She still has cramps to go to the toilet but no control over her bowels, it just happens when it happens. Her blood pressure and heart are normal and she’s found staying in hospital away from the hustle and bustle of life very relaxing because her everyday routine involved rushing around after everybody else and neglecting herself, but now she’s finally realised she has to put herself and her health first. One thing she loves is the fact she’ll never have to wipe her bum or do a smelly fart ever again because of her colostomy bag and filter! We had the most hilarious game of charades, kisses and cuddles before leaving in the evening and for the first time since this all started I actually felt hope.
UPDATE: 12/03/17 5 Days After Surgery Mum Came Home
These past five days have flown by and I’m relieved that Mum’s been in hospital because I know she’s had the proper medical attention she should have had a long time ago, she’s been fed, relieved of pain and made more comfortable to return home. I know she’s had such a positive experience of her treatment and doesn’t stop praising the staff and NHS, but she’s a routine bunny and needed to get back to normal life away from the wires and machinery. There’s no place like home!
I was actually supposed to bring Mum home yesterday morning at 11am following her surgeon check and once-over but as she struggled to pass anything with her stoma they had to massage her bowels and give her another two enemas – her bowels weren’t working unassisted and that was the condition of her coming home. A day later than expected and she was perched on the sofa smiling as I arrived with my 9yr old daughter – my 4yr old son is far too boisterous and excitable to be around her at the moment and he’d been off school with a fever so waited with his grandparents whilst we visited Mum at home.
Mum returned home with a pack of medical notes, her colostomy equipment, needles and liars for her staples to be removed later in the week. She told me she was allowed to eat every kind of food as normal, being vegetarian she leads a healthy active lifestyle as it is and was desperate to have food containing fibre again, she just has to monitor how her bowels react and if she blocks up again then to ease up but she can call the hospital or go back in if she has any questions or sudden pains. She’s sitting fine again and conscious to drink at least 1.5litres of water per day to keep hydrated and everything flowing. They expect the swelling of her stomach to reduce in around six weeks time and it will be so odd for Mum not to look like she’s pregnant, she’s so slim and tiny we’ve got used to seeing her with a Buddha belly living in dresses but it’ll be nice for her to wear normal seasonal clothes like everyone else.
The more she moves the better her bowels will work and the faster she can recover and begin her chemo and radiotherapy. Her stomach staples from the keyhole surgery will be removed in five days time at her local GP and the surgery itself was a very neat and tidy procedure, the surface really doesn’t reflect the precision and enormity of what happened to her insides. I asked her how she would describe the pain and discomfort and she said unless you’ve been through it you really can’t appreciate how one pain changes for another, she’s suffered for so long that pain became normal for her, but now it’s a lesser pain it’s better but not okay. If someone hadn’t have lived in pain and then went through the surgery they may not have coped or being as mobile so quickly, but because the lesser pain was a relief it actually helped Mum to cope and recover – she’s such a fighter!
Throughout her hospital stay Mum was smitten with the hospital staff and loved how well they worked together. All she kept saying was how kind and genuine they all were, how they stayed late each night to help cover each others shifts and ensure that no patient was left unattended. They all greeted her with a smile, asked how she was and tended to her every need – something she’s never experienced before as a mother – she’s far too used to doing the same for other people than to have it done to her. I’m so pleased she was so well looked after, she’s my angel on earth and so very precious and dear to us all. If I could wrap her in cotton wool and take her away from all of the pain and suffering I’d do it in a heartbeat. Mum reminisced over how good the hospital wards used to be with matrons and sisters and how wonderful it is to see the high level of care and consideration nowadays. She’s actually looking forward to returning in three months time to get checked over and see them all again!
Mum is having her stomach staples removed on 17th of March at the GP and they’re currently scheduling her chemo and radiotherapy dates.
UPDATE: 15/03/17 Visting Mum
Today I popped by to see Mum at lunchtime to see how she was getting on and found she was waiting in for an emergency delivery of colostomy bags as the batch she had previously been given hadn’t been stored properly during distribution and had turned sticky and unsuitable for use. Her delivery had just arrived a few minutes before I did so I was able to help her to unpack and recycle the box.
Mum was excited to show me her holiday travel kettle – something I hadn’t seen since we were children which she had out on the kitchen counter and was able to use to make single cups of tea and coffee for herself because her regular kettle was too heavy for her to lift anymore without pulling her stomach and potentially causing damage as she’s now at high risk of developing a hernia. Mum hadn’t eaten since the morning so I put on some soup and a slice of toast for her as I pottered around loading the dishwasher, tidying, hoovering, putting on the washing machine, taking out the bins and mowing the back garden as she chatted away to me in the sunshine, all of the everyday chores she’s always done without batting an eyelid before but are now completely out of bounds.
Mum’s always been so active, constantly rushing to and fro, cooking, cleaning and taking care of everybody and I know that being so helpless is totally against her grain. I know that it must get to her to knowing she can’t clean away the dirty pots and pans stacked in the sink all day from where my dad and brother have made breakfast and rushed off to work first thing in the morning. I know she wants to run a duster around the lights, to clean the toilets and make her famous Sunday roast dinner as the children play but she can’t, we can’t let her put herself in danger or jeopardise her treatment and recovery despite how desperately we crave normality. We are all living at the mercy of bowel cancer and what it’s doing to our beloved Mum.
Opening the lounge windows to hear the birds sing as the sunshine streamed in I’ve always been used to visiting Mum to find the doors wide open and her out in the garden pegging washing, bleaching the floors and airing bedsheets as she keeps the house so clean, bright and breezy but shivered from me opening a single window when its eighteen degrees outside. There’s not an ounce of body fat on her, she’s skin and bone and I’ve never known her to feel the cold before as such a nature-loving woman. But she said she wanted to enjoy some fresh air so I reluctantly kept the window open a crack and helped her to put her dressing gown on over her dress and cardigan for an extra layer. I later snuck back into the lounge and closed the window so she wouldn’t struggle to do it later knowing I had to leave for the school run shortly.
Lifting Mum’s handbag, stoma equipment and medical paperwork up onto the dining room table I helped Mum to make her essentials for accessible as bending and lifting is dangerous for her. She explained that in hospital all of the surfaces and storage was at just the right height to make post-surgery healing practical, yet at home she had no modifications or equipment and had to make the best of things. From sleeping in her electrically adjustable hospital bed she’s now sleeping on the sofa because getting up the stairs takes her such a long time and as she’s up throughout the night needing the toilet, changing her colostomy bag and walking about to ease her cramps she’s too worried she’ll keep Dad awake or be uncomfortable laying flat on her bed and pulling on her stomach.
Sipping her soup Mum told me that she’s loved eating regular food again but once her chemotherapy starts she’ll be back on a low fibre diet which means no more vegetable skins and peas and sweetcorn are totally off the menu. She’s always made every meal from scratch with organic vegetables and quality cuts of meat, nothing microwaved or packaged, no additives or convenience foods yet seeing her cupboards lined with tins of soup pulls on my heart strings because I know that she doesn’t have the energy or ability to stand and cook a meal for herself or anybody else anymore. I wish I could kidnap her and bring her to live with me so that I can look after her and give her the same love and care she did me as a child but with my two children frequently getting coughs and colds from school and wanting to play, jump about and cuddle I can’t risk Mum getting sick or injured and she’d get far more rest at home alone, I’ll just have to stop by as often as possible to help her to lighten the load.
Mum’s also finding it awkward to get up the stairs and climb into the bath to stand to have a shower as she had a wet room at the hospital and lifting her knees up pulls on her stomach. As she still has her staples in her wounds are tender but she’s booked in for the 20th to have them removed at the local GP as the nurse was fully booked until then and couldn’t see her sooner. Mum said that a Macmillan nurse had visited her at home the other day to talk to her about her treatment and answer any questions. They also gave her some financial advice and information about transport to and from the hospital for her chemo, much like the Citizen’s Advice Bureau but for cancer patients and she’s found them extremely helpful for putting her in touch with everyone and everything she needs.
Whilst making a final cup of tea before I had to dash off I was able to see Mum change her colostomy bag and she was happy for me to take photos to show others what to expect with caring for a stoma. It was fascinating to see in just eight days since her surgery how well Mum handles changing her bag which is still swollen and sore with staples in her stomach and bruises up her legs from where she has to self inject each day to stop her blood from clotting. She began by taking a seat at the table and pulling her dress up which she held in place with a clothing clip at her ribs. She then removed the colostomy bag and with a small waste bag, bowl of cool water, gauze and a mirror she cleaned away any mess and patted dry the wound. The stoma itself is around half the length of a finger and protrudes about 2cm from Mum’s stomach, at present it’s dark red but should shrink and fade slightly as it heals and the stitches around the edge dissolve in the next few weeks. Mum then attached a new sticky back plate around the stoma to make it watertight before sticking a fresh bag over the top and I was amazed at how quickly she did it – considering she changes her bag 4-5 times a day at the moment and raised two children she’s had plenty of practise so far!
I felt awful having to leave Mum to get the children from school, but it was lovely to be able to stop by and help her, to see her smile and make her a little more comfortable in her day. I’m glad she ate and my Dad and brother will come home to a clean and tidy house. I guess it’s more noticeable that something is wrong when you stop doing everything you’ve always been able to do before, when the magical fairies no longer come by to clean underpants or sweep floors and suddenly the men of the house need to learn to be mothers, to do chores and cook their own food! There are so many adjustments, so many people effected and on so many levels more than one, more than the obvious pain and suffering of the illness is the heartache and disruption to life. When you’re so used to something being one way and suddenly it switches to the opposite direction it throws normality entirely out of balance. I want Mum to feel normal, to live without pain, to not worry silently about her treatment or uncertain future.
Mum spoke to me about what would happen if she dies of cancer and it choked me up as I sat motionless and listened, not wanting to hear the words but wanting her to know I was there for her to listen and tell me what she’d been looking into and concerning her. She said with her life insurance there may be an option for her to withdraw a sum of money early if she’s given a date of death – perhaps three, six or twelve month’s left to live if there isn’t a cure for her cancer. She said people use it to go on one final holiday, to do up or sell their homes or to make sure their funeral is covered and their loved ones secure. I don’t want to think about how hard it must be for her to accept the what-if’s she’s working her way through, I don’t want to think of my Mum dying or for my Mum to even think of herself dying. I want to keep her alive forever and love and protect her until my last breath. Cancer is so fucking cruel. Cancer should die.
Mum is now having her stomach staples removed on 20th of March at the GP and awaiting her chemo and radiotherapy dates.
UPDATE: 17/03/17 Visiting Mum 10 Days After Surgery
Mum was originally due to have her staples removed today but it was delayed so after school I popped over with the children to come and see how she’s doing and was so pleased to see her up and about looking much brighter. My daughter wanted to treat Mum to dinner by cooking for hr and made a lovely cheese sauce to pour over potatoes and vegetables, but when Mum pottered over to stir it the whisk fell from the pan and she instinctively jerked to catch it and pulled her stomach muscles which caused her pain.
We’re petrified of Mum developing a hernia and it’s pretty impossible to fight against your natural reflexes but the safest thing for her to do is nothing! Mum’s gradually adapting to living at home with modern-inconveniences and said that she uses two hands for everything to balance the weight and pressure of menial tasks from pushing the toilet flush to pumping soap from the dispenser. She thankfully finished injecting her anti-clotting needles yesterday and took a steady walk to the GP to hand in the sharps box that she was given and she said that each day she’s feeling more mobile.
As a result of resting and healing she’s eating better, feeling better and getting far more sleep having just had a 6hr continual sleep for the first time in years and she was overjoyed as she was always waking up in pain and needing the toilet before. It’s amazing to see Mum’s quality of life improve, but sad to think it’s about to get a whole lot worse with chemotherapy before – if ever – she gets better. She’s had the district nurse visiting her at home to check her stoma is healing properly and has had nothing but praise and positive feedback which is reassuring.
Mum’s still awaiting a letter to schedule the start of her chemo and radiotherapy which she thinks will be 6wks after her surgery so some time towards the end of April/May. Since her surgery she’s put on 4lbs in weight which she previously found impossible to keep weight on when she was living in pain and unable to go to the toilet. She has a BMI of 19 for which she’s finally classed as a healthy weight and at 5ft2″ she’s made it her goal to get to 104lbs to reach her regular bodyweight from before she got ill. She said that cancer has become so routine for her that the family no longer question her about it which is nice as they’re happy to chat about everyday things just as before when they call or visit. It’s not the elephant in the room anymore because Mum has been so open and honest about it, she’s addressed it, she’s coping with living with it and it won’t stop her from living her life. She’s my absolute inspiration and continues to astound me with her positivity and love. I really don’t know how she does it.
UPDATE: 21/03/17 Taking Mum Shopping On Her Not-So-Good Day
Seeing as Mum came off of her painkillers when they ran their course she really wasn’t prepared for the pain that it would bring. Ever one to avoid medication Mum tried her best to soldier on but when I popped by too take her shopping today after the morning school run and a weights session at the gym I wasn’t prepared for how bad she would be. Mum shifted from a steady pace gentle shuffle to a grimacing stagger as she tried to get around the house and I begged her to take some pain relief but she had none in the house. We’d arranged for me to come and take her shopping this morning yet she could hardly get from her chair to the toilet and back.
I asked if she wanted me to take her shopping list into town and do her shopping for her but she insisted that there were things she needed to see for herself to choose for birthdays and personal preference and I think a lot of her wanting to get out was down to her sheer frustration of helplessness and boredom at home – sometimes you crave normality. I had expected Mum to be dressed and ready to go when I arrived at 11am but she was still in her nightdress and slippers and took half an hour or so to slip on a summer dress and her coat. I made her a cup of coffee and unloaded the dishwasher as I waited for her to dress knowing that she doesn’t like to take off her clothes in front of others and admired the puzzle she’d been doing on the kitchen table as I pottered about the kitchen. Tired of pacing the house and being a prisoner in her own home Mum had got bored of reading and doing puzzle books so had moved onto a 1,000 piece puzzle that she’d started at the weekend and found it a relaxing way to take her mind off of things.
Seeing how frail Mum was I knew there was no way she’d be able to walk about the shops to get everything she needed and I didn’t have much time before I’d have to do the school run to collect the children and make dinner so I snuck off into the utility room to make a few phonically to try and find her a wheelchair. The most logical thing I could think of was to call Mum’s GP in the hope that they’d have a spare foldable chair that we could borrow for the day but they unfortunately didn’t. The receptionist gave me the number for the British Red Cross but unfortunately the number went straight to voicemail so I left a message and asked for somebody to call me back. The only other thing I could think off was to call ShopMobility which was a sign I’d seen in town a few times that I had presumed was for disabled people in need of electric scooters. Thankfully the lady on the telephone advised that a portable wheelchair for shopping was free of charge up until 4pm which suited us perfectly as I had the school run at 3pm. Being lightweight and foldable it fit into the back seat of my car so that I could fill the boot with shopping as well as sit Mum comfortably in the front of my car with the seat pushed back for easy access. I simply had to take my ID with me and complete a quick registration form giving my name and address and was able to get Mum out and about for the day. There were electrical wheelchairs and scooters also available which would need to be booked but because Mum can’t push or pull it made sense for me to drive her about.
With her stoma kit and shopping list at hand I eased Mum into her wheelchair and took her about town from the supermarket to the bank, card shop, coffee shop, gift shop, health shop and finally another supermarket and we got everything she needed. She hadn’t eaten since first thing in the morning so I got her some mozzarella sticks and a latte to sip whilst we worked out how to attach the disabled trolley to the front of her wheelchair which made her as long as a bus and had her chuckling at my manoeuvre techniques and three-point-turns in the supermarket aisles. Most people were considerate and allowed us through but quite a few shockingly stood in the way, came too close to us or parked right next to the car leaving us with no space to get in and out safely. Seeing as Mum hasn’t been issued a disabled badge yet it means that we have to wiggle around with regular parking which isn’t the easiest with a wheelchair and trolley but for our first attempt I think we did pretty well – I didn’t knock too many things over but it took me a while to grasp my spacial awareness and remember that Mum has feet which stick out past the foot rests!
As we were for around 4hrs out Mum’s stoma bag became alarmingly full and we panicked that it might burst or pop off and despite having her changing bag she didn’t feel comfortable changing it in a public toilet or in the car incase people saw or she made a mess as she needed a bowl of clean water and a chair and level surface to sit at to position her mirrors for which there isn’t anywhere suitable in public. Fortunately she was able to make it home just in the nick of time to get it changed and she said it had filed so quickly because it was a different bag given to her by the stoma nurse which was smaller than the previous so she hadn’t seen how long it would take to fill before.
When we got back to the house I made another cup of coffee, loaded the dishwasher and put Mum’s shopping away just in time to rush back for the kids. I’d promised Mum I’d make her a nice Greek salad for dinner and had all of the fresh herbs and ingredients ready but because I had to return the wheelchair before the end of the day and the extra time spent getting in and out of carparks we ran out of time and I had to leave her at home. She said that she’s going to take it slow and steady to make herself dinner and take some paracetamols that we’d got to help. At Holland & Barrett when we were buying nuts for protein I saw some Cannabis Oil at the checkout which I’d been told a lot about by friends and followers and got Mum a bottle. It’s perfectly legal and sold over the counter so I asked for the strongest and best one designed to shrink tumours and the lady advised on the 1000mg packet which was no bigger than a small chocolate bar in size and cost £69.99 – there were two weaker dosage bottles also available which I presume are cheaper. Mum simply had to use the dropper to put one drop under her tongue three times a day and a bottle should last her 6 days if taken at the correct dosage. I’m not sure how we measure if it works or not but it’s something so many people have spoken about, I’ll do anything to help her to heal.
Mum’s Next Appointment Is At The Oncology Outpatients In 10 Days Time
UPDATE: 26/03/17 Mother’s Day
Last night after I put the children to bed and packed up the presents and flowers to take to Mum’s in the morning for Mother’s Day I just couldn’t stop crying. The thought of this possibly being our final Mother’s Day together makes all of the air immediately rush out of my lungs and it’s crippling. This time last year Mum was in so much pain I talked her into letting me drive her to the coast to visit Nan for a surprise afternoon to celebrate Mother’s Day together. Thankfully she agreed to let me take her on the 2hr drive and it was the last time we ever saw Nan before she died suddenly just weeks later. We’re so thankful for the memories of that day, the day that very nearly didn’t happen. I can’t believe it’s been a year already since that day and I have such bittersweet feelings, such happiness but sadness and I can’t help but think that the suffering of mourning Nan 11 months ago is far too close to home with the fear of losing Mum.
It may also be one of the last times that the children are able to see Mum for a while as her chemotherapy and radiotherapy will start soon and all germs have to controlled. My son and I both have stinking colds and runny noses and I’ve been sneezing all night with very little sleep. I didn’t want to go to Mum’s for fear of making her sick but at the same time when you’re not well you just want your Mum. With it also being my Dad’s birthday today it was a triple celebration for us all, mine and Mum’s Mother’s Day and Dad’s birthday and I promised to make breakfast for everyone in the morning, cook a roast dinner and bake doughnuts instead of a cake for Dad because they’re his favourite and a cherished family tradition of ours. We needed tradition today, we needed normality and I’m so incredibly grateful for the memories we made as the children cuddled Mum and I chopped the vegetables and we put on an afternoon film. It’s the simple everyday things in life that we take for granted but mean the most.
Mum told me her stoma had been leaking and it became quite sore which she found out she was wearing the wrong size base plates and bags when the stoma nurse came to visit her at home in the week. Following surgery her stoma was measured and the bags ordered but because of the swelling and friction the base plate was too tight and pinching Mum’s stoma which caused it to ripple and leak. The stoma nurse provided her with a larger base plate and it’s made the world of difference and instead of changing her plate once a day she’s now doing it once every 2-3 days as expected which has allowed her stoma to heal better falling her surgery almost 3 weeks ago. Mum’s also had her staples out at the GP which she said was a little pinch and has stopped them from itching and catching on her clothes now which makes her far more comfortable.
Despite being 3wks into healing Mum still can’t lift or cook yet because she’s at risk of her abdominal wall splitting and delaying her cancer treatment. She said it’s a struggle to stop herself from wanting to do things and she’s limited to wiping down surfaces rather than hoovering, bending or tidying. She’s also randomly passing poo from her backside without warning as when she goes to the toilet she sometimes hears a plop and see’s small nuggets in the toilet which is gradually coming out of her bowels and will remain moist with mucus until she has her anus sewn up following her womb and bowel removal surgery after chemo which should be around the end of the year if all goes to plan.
Mum’s started to take her Cannabis oil which is a half dropper of neat oil beneath her tongue three times a day and left her crinkling up her nose and pulling faces like a baby sucking on a lemon. She described the taste as being strong and unpleasant and said she immediately wanted to brush her teeth or have a hot drink to get rid of the foul taste. Apparently it’s like chewing on a dark green waxy leaf that’s bitter and minty but not in a nice way. I’m guessing it goes under the tongue so it’s not as pungent to the taste but Mum said it soon travels around the jaw and into the tongue and makes her gag yet it must begged for her because the worse it tastes the better it is, just like medicine! It’s hard to know if the oil will help to shrink the tumour or if any results may be down to her chemo and radiotherapy when it starts but we have to give Mum the best chance possible and try every remedy to prepare her for surgery because that’s what we’re holding out for. This is a legal natural remedy and we’re keen to keep Mum in the best health possible to fight cancer.
Another thing we’re trying is flax oil with Quark soft cheese which is a way of softening cells within the body. Cancer cells are caused by the hardening of cells which prevents vitamins from getting in and toxins from getting out and leads to mutation and sickness. By softening Mum’s cells we can help to detoxify her body and get the vitamins she needs to where they should be, she’s also cutting out sugar and processed foods to give her the best chance possible as these increase the risk of cancer. Mum mixes the cheese and oil in a 2-1 ration of 8 tablespoons of flax oil to 16 tablespoons of soft cheese and has it as a snack each day which she says is like a naturally creamy sweet yogurt. She’s also drinking green tea which is a natural antioxidant and has around 1.5litres of water each day to stay hydrated. She’s also found eating nuts binds her up so she can only have a handful a day and has to chew them very carefully to make sure they’re small but as a vegetarian they’re a good source of protein for her and help her to heal. As a family we’re doing all that’s naturally possible to keep Mum with us, safe and strong and now we have to put our hope and faith into her treatment to hope that her tumour shrinks enough for her to be suitable for surgery. These next few months will be the most testing but we have to stay strong and live everyday for the blessing it is. Life is so scarily short and fragile, I hope if anything this fight Mum is facing will help you to open your eyes and appreciate the blessings around you. Cancer is such a cruel and faceless disease that has taken far too many lives far too soon, sadly it doesn’t care who it hurts or when, but together we can be stronger than it. You just have to have faith.
UPDATE: 11/04/17 Mum’s Off For Her Radiotherapy Tattoos
So Mum’s been feeling a little stiff lately because she’s spent the past month sleeping on the sofa at a funny angle to compensate for her stoma and it’s hurt her back and neck. She had to sleep at an angle as laying flat pulled on her stomach muscles which has in turn hurt her and made her weak neck and back even worse from her osteoporosis. Mum’s now moved back to her bed to sleep because her stomach is healing after 4wks and she’s getting gradually more mobile each day that passes.
On 31st April she went to hospital to she her oncology consultant who confirmed she’s have 5wks of chemo and radiotherapy for five days a week as her surgeon had planned. She was able to ask any questions, see where she’d be having her treatment and meet the team who will be dealing with her which was very helpful and she feels assured that the process is about to get underway before her tumour can get any bigger. As an updated machine is arriving at the hospital she had to wait until today to go back for her tattoos which are dots made on her skin to show the laser where to align for her treatments as it has to hit the same spot every time. They said if she felt well enough there could be the possibility of her treatment starting today but it all depends on how her tests go to see if she’s ready and able as she’s having daily bloods to check her white blood cells and they’re monitoring her stoma healing and passing of stools.
Seeing as it’s the half term Easter holidays I have the children at home and my daughter has an earache so I don’t have childcare to take Mum to hospital and they can’t run around inside because there are [poorly patients receiving treatment but I spoke to Mum on the phone this morning before she left and wished her luck. She told me she’d asked about her hair falling out and the consultant said she’d be bald or patchy whenever there is hair on her body so we’re going to look into some sort of hat or wig when we can sit down together and shop online. Mum said she didn’t want to use headscarves to hide her hair falling out as she doesn’t want people to instantly recognise that she has cancer and pity her or feel sad. She’s never been one to want to worry others or burden them with her problems and it breaks my heart to think that she doesn’t want to show people she’s ill. She’s so brave and such a fighter, when she kicks cancers butt we’re going to go on a wonderful adventure together and walk in the sunshine and eat a glorious picnic as the children fly kites. This is just a temporary sadness, we have the rest of forever to make up for the lost time that she’s spent suffering.
UPDATE: 11/04/17 Stomach Tattoos & Visiting Oncology
Today Mum attended her oncology appointment to get the ball rolling for her chemo and radiotherapy which will start in a few weeks time. She started off by having her heart rate monitored, a blood test to check her white blood cells count and finally a CT scan with a dye injected into her to highlight her tumour so that her tattoos could be put on to line up the lasers for her radiotherapy treatment. She had three tattoos in total, one on each hip and one in the bikini line and said that they felt like something blunt pressing into her but it was over with in a split second. Despite a cross being drawn to mark where it goes it’s just a small blue-black dot at the middle which will be permanent.
It made us laugh how anti-tattoo Mum is and how she always rolls her eyes every time I get a new one without telling her but now she’s gone and had three in one day! I can see this being the start of a very beautiful bodyart journey and I bet at the end of the year she’ll want to have just as many as me! It’s totally addictive don’t you know.
So Mum’s treatment is due to start on 26th April which isn’t far away and by then her stoma should be perfectly healed. This is the third hospital she’s been to – as they send you where the list is shortest – and she said the staff were so welcoming, patient and kind by answering all of her questions and putting her mind at ease. As I couldn’t take Mum to the hospital she was collected by a volunteer driver along with other patients attending their cancer treatments, all at different stages in their journey, and it was nice that she got to meet other people in her position because I don’t think anybody can truly understand what you’re going through until you’d done the same yourself.
Mum said her driver was so much fun and went above and beyond his voluntary duties by waiting for them all day, asking how they all were and trying to make the journey as comfortable as possible. He used his own car to drive Mum and the other patients which is a free service organised by the hospital to help to get patients to their appointments where public transport doesn’t permit. It would take Mum hours to catch a bus and change multiple times on different routes and as she’s not allowed to lift anything she wouldn’t be able to carry her handbag or stoma equipment so would have to have an assistant. Following her treatment she’ll also be sick and sleepy so being driven is pretty essential – I just wish I didn’t live so far away and had the childcare and free time to be able to take her myself because I worry so much about her.
But I know it’s doing her good to meet other cancer patients and not feel so alien or alone in her illness. She puts on such a brave front and never complains because she doesn’t want us to worry about her, but I hope with her new friends at the hospital she can feel at ease to discuss the things she wouldn’t tell us. Mum said at first when she was in the waiting room everybody sat in silence looking at their phones or reading books so she started talking to them and soon everyone was laughing and smiling. I guess people get nervous when they go places alone and don’t want to intrude on others but Mum has a wonderful way of getting everyone involved and making them feel welcome without being pushy or in your face. She said they all spoke about what they were having for dinner and speak matter-of-factly about their treatment without shocking gasps or tears which was nice for her.
She’s been advised to get a thermometer to monitor her temperature once treatment starts as she’ll have a very weak immune system and a high temperature could become fatal so she’ll have to go straight into hospital. She also has to buy baby soap for sensitive skin to wash in, along with e45 cream because her skin will burn, bleed and crack from the treatment. We went shopping this afternoon to get all of the final bits and now it’s a case of waiting for it all to start. My son has his 5th birthday on the 30th April and Mum’s hoping that she’ll be well enough to enjoy it as she’ll only be a few days into treatment by then and we’ve planned a BBQ and cake so we all have her fingers crossed.
UPDATE 30/05/17: 3 Days After Mums Radiotherapy & Chemotherapy Has Started
Today is my son Gabriele’s 5th birthday and we were all crossing our fingers and toes that Mum would be ok following the start of her chemo and radiotherapy treatment. We were expecting Mum to be a little more tired and weak than normal perhaps but hoped that her sickness and side effects from treatment wouldn’t kick in until next week and thankfully our wish was granted. Despite April being a wet and windy month we had beautiful sunshine for Gabriele’s birthday and made some beautiful memories that we will cherish forever. The day before, my daughter Millie and I popped over to Mum’s to begin party preparations as he spent the day with his dad and we baked cakes, made banners, blew up balloons and laid out his presents and games to play and it was lovely to see Mum so relaxed and happy.
Asking Mum how her treatment went it was a relief to see how okay she was about it all as I was expecting her to be as nervous and cautious as I am but I really think she’s come to terms with everything involved and she takes it all so positively in her stride. Seeing as she’s unable to drive from her surgery and treatment she is collected daily by hospital transport to take her for her radiotherapy and then driven home when the other patients are ready to leave so some week days she could be gone a couple of hours and others the whole day it all depends on how many people are getting treated. She also has to go alone as all of the seats are allocated to cancer patients only rather than friends and relatives which means because of the school run and possibility of the children getting ill I can only see my parents at weekends now for the next five weeks of Mum’s treatment.
Three days into radiotherapy and chemotherapy Mum has no side effects at all and says that she feels absolutely fine. The radiotherapy itself only takes about 5-10mins and Mum says that she feels nothing at all when it’s happening. I’ve had laser treatment to my face for rosacea and lasering to my underarms for hair removal and thought it would be similar in a hot pinging sensation but Mum said you wouldn’t even know you’re having anything done. She takes more time and effort preventing her skin from cracking by applying cream to her tattoos on her hips and public line as well as her hands and feet to avoid bleeding and sores caused by the treatment. She’s always tanned well and is only sensitive to strong perfume and so far her skin has remained fine but we’re expecting damage the further she gets into her treatment. It made me laugh to hear how Mum described the hospital as an airport because she scans a card to check-in at reception and the radiotherapy machine runs all day long with each patient arriving and being led in with details on a screen like waiting for an order at Argos. It makes me feel so helpless to not be able to go to the hospital with Mum during the week and to think of her there alone or unwell makes my heart heavy but she’s in the best place for the care that she needs and each day that passes is one step closer to ridding her of cancer.
Mum said that she feels so relaxed and calm at the hospital because she sits and waits, does puzzles, read books and gets to lay on a bed for her treatment so it’s a whole lot of being still and chilling out which makes her want to sleep and when she gets home she goes to bed within a few hours rather than pottering around or rushing. She says she’d never normally stop and do nothing or unwind in such a way because our daily lives are so busy so it’s doing her good to take some time out and rest even though she’s getting layered and filled with chemicals to make her sick! With it being Mum’s first week of treatment she’s had three days at the hospital so far followed by the weekend at home and next week will be her first full five days in a row. Her chemotherapy is given to her in tablet form for which the hospital dispenses her dosage of 8 tablets a day – 4 in the morning and 4 at night twelve hours apart within half an hour of eating food. She’s also been given anti-sickness and anti-diarrhoea tablets to make sure she keeps the medication down but she isn’t taking it yet as she feels ok and doesn’t want to use medication unnecessarily.
If Mum was to throw up or have a bad stomach there’s the risk of her chemotherapy failing which will affect the results of shrinking her tumour so it’s vital that she keeps as strong and healthy as possible and keeps an eye on her symptoms and temperature. Mum says she doesn’t feel any different and wouldn’t even know that she has cancer anymore, but she has and it’s aggressive. That’s the shocking thing in having something inside of you that can hide so dangerously and confuse its symptoms with daily aches and pains. Please follow your gut instinct and always consult your doctor if you think something isn’t right – prevention is better than cure! Mum has a stoma check with her nurse coming up in the next few weeks and she’s really pleased with how she’s healed post colostomy surgery. She’s far more confident at fitting her base plate and the swelling from the stitches and healing has gone down so it’s no longer leaking or getting sore. In June she’s going to see her stoma surgeon who delivered her diagnosis and cancer treatment plan when we found out at the start of the year, so Mum’s hoping that he may be able to give her further information about how, when and where the next surgeries will be to remove her bowels, womb and reproductive organs if her tumour has shrunk enough from treatment as by then she’ll have finished her five weeks of chemo and radiotherapy. It’s just a waiting game now and I’ll be there for Mum at the end of the phone, saying prayers for her and everybody in the world facing this terrible disease and waiting to help in any way that I can.
Dealing With The Financial Burden Of Cancer:
Have you checked for Critical Illness Cover on your life insurance policy? You may be able to claim a cash sum following the diagnosis of cancer
Next To You by Gloria Hunniford – Published by Penguin