Here you can read our in-operable stories in full. Please click on the name of the person whose story you would like to read.
Mike | Mal | Kingsley | Emilee | Anthony
Four months ago, I was diagnosed with cancer of the pancreas. I had arrived back from Asia feeling somewhat tired and then I went to Milan to speak at a seminar. I came back to London exhausted. My wife thought I had jaundice so I went to my GP who concluded the same from the outward signs.
Blood tests showed it was more than that and I was referred immediately to a top oncologist who immediately diagnosed pancreatic cancer. Not being one to shy away from asking a difficult question, I asked him to advise my personal outlook. He said I had a 20% chance of living until Christmas and 5% of lasting the next 5 years. I was absolutely shocked and astonished at the low survival rates. I wondered how I was going to tell my wife and family. I’m a very positive and optimistic person by nature and I started to read the available literature and was determined to take whatever steps necessary to drive and extend these survival rates. I was asked to take part in a clinical trial pushing the boundaries of pancreatic cancer treatment to the edge. I agreed and undertook aggressive chemotherapy treatment immediately and very toxic chemicals were given to me to fight the tumour.
A fine line is trod between killing the tumour and killing the patient. The many side effects are difficult to manage and I was very immobile and debilitated for a long time. I consoled myself with the thought that I was pioneering knowledge and progress to support others in the future. This is where I presently stand going through 8 cycles so far of the 12 cycles of chemotherapy every 2 weeks that will take me to the New Year. However, it has become complicated as my immune system is very low and I have recently contracted pneumonia. This meant a 2 week stay in hospital and put back my chemo cycle by a week. My oncologist reviews all the data after every cycle and adjusts and customises the further treatment as necessary. Chemotherapy cannot cure the cancer but may help lengthen life. The hospital and medical staff who look after me are absolutely wonderful and dedicated. Britain is justly proud of its pioneering doctors and nurses and cancer research facilities which are amongst the best in the world.
However, it is beyond the immediate medical facilities that you and those close to you often need help during the chemotherapy and treatment. From a personal point of view my family have supported the way I wanted to move forward. Many issues came to mind given that I have a limited life ahead of me and we discussed all these openly. It is a death sentence and it concentrates the mind. However, there is no time to worry about death. Because I am exhausted most of the time I am concerned that I cannot get everything done in the time that may be available.
The emotional aspects involving my wife, children, grandchildren and other family members who found it difficult at first to understand the enormity of the situation are very real and difficult for me to manage and for all of us generally. However, I also realised my affairs were not properly in order. Powers of Attorney, wills, paperwork on our home, investments, pensions, tax, insurance, social activities, the list seemed endless to sort out. I have had to work my way through most of it. This is the toughest fight most of us will ever have in our lives and no one should have to face cancer alone. I am very lucky with my family support and my many friends throughout the world. I am also very humbled by the disease. I want to do whatever I can to raise awareness and provide help to those who need it most, particularly young families with children.
My name is Hayley and I would like to share my story about my mom, Mal.
Mom was a very active lady, selfless and always there for others, my mom was 67 years old with a husband of 34 years of marriage, 5 children and 12 grandchildren. Mom was always there for her family, night or day. She always liked to get involved with her grandchildren’s lives, whether it was watching them play football, performing on stage at theatre school, doing school runs, dentist appointments, tennis tournaments, gymnastic sessions and every Sunday, mom would cook Sunday roast dinners, some weeks she would cook for 12-15 people.
Family was very important to her and idolised her husband, my dad. My mom loved to go away on holidays and adventures, we had a caravan in Rhyl where we spent most our family holidays. In October 2016, my mom and dad went to Las Vegas for their 34th wedding anniversary and flew over Grand Canyon and in November, she walked miles sightseeing in London. I want to stress that my mom didn’t smoke, didn’t drink, had no previous illnesses, medical records was clear and she was not obese.
22nd December, my mom attended her Christmas works do, she complained of fatigue and nausea. Christmas day was our normal annual time of year, everyone would meet at my mom’s to exchange gifts, raise a glass, some would stay for dinner, some would go and visit extended family. Mal on Christmas day 2016 Christmas night in to Boxing day, my mom was experiencing some pain, so we called the out of hours surgery, where they issued her with a 3-day course of antibiotics (Trimethorprim) for a water infection, the pain did not go away, so they issued her a different type of antibiotics for 7 days (Ciprofloxacin) and not to wait for her doctors to open in the new year, if still experiencing pain, my mom being my mom did wait for the doctors to open.
8th January, my mom went to the doctors, the doctors were concerned and requested tests immediately, so the next day she had blood tests taken, they were very quick at ringing her later that day, to say they found abnormalities to her liver and they wanted to investigate further. On Friday 13th (my Birthday), my mom had an abdominal scan and was waiting for a letter for a date for a CT Scan.
On 16th January, we rushed mom into hospital, signs of jaundice and high blood pressure. Mom stayed in hospital for a few days, she then had CT Scan on 18thJanuary. 19th January, the doctor called a meeting with my mom, dad and my eldest brother. From that date my world fell apart, we received the news we didn’t want to hear, that one dreaded word, CANCER, we thought ok mom is a fighter she will beat this, they told us she had primary pancreatic cancer, I had no idea what that was or what part of the body the pancreas are or what it does, until now. Not only did she have primary pancreatic cancer, she also had gallstones and secondary liver cancer, there was no cure, there was nothing they could do for my mom and they gave my mom week to a month to live. It was too late. Questions: Why? How? When? No symptoms, no warnings, how has our mom got secondary cancer when we were not aware of her having primary cancer.
My mom remained strong for my dad, myself and my siblings. She said we’ve all got to go at some point. I will never know what my mom was really thinking. Mal’s 12 grandchildren Mal’s 5 children 20th January, my mom came home with morphine and anti-sickness tablets and support from McMillian. My mom had several visitors, she didn’t want to turn anyone away, on the Sunday 22nd, my mom looked fine, looked tired but ok, she was eating and drinking and talking. 24th Jan, dad asked me to stop so he could have a good night’s sleep, we watched a film downstairs, then we went up to bed, before going to bed, we made sure mom was comfortable and she had her medication. That night my mom became so weak and she struggled to swallow, we didn’t want to take any chances, we rang my eldest brother who is a paramedic on duty and he rushed her into hospital, my brother must get his strength from our mom, he remained calm, professional and strong, even though he was dealing with his own mom. That night my mom went unconscious and deteriorated fast, my mom remained that way until Thursday 26th January 2017 at 9:15pm, aged 67 years, with her whole family around her. My mom was only diagnosed a week before she passed, One Week.
We could not get our head around it, a fit, active lady was diagnosed with this awful disease and we all had no idea, but to pass away only 7 days later, I can’t even describe the words we are feeling, mom was our rock, our strength, a lady who we all turned to. My gran is 90 and going strong and her mom was the same age too before she passed peacefully., so you always think mom would live till she was 90 too, there has been no family history of this disease, we are all just in shock. This was one fight our mom was not going to win. Cancer will hit anyone, at any age and at any time. Our mom brought us 5 into this world and watched us all take our first breath, and we watched our mom take her last. The reason why I want to share my story is because like myself I had no idea about pancreatic cancer or any information about the pancreas, I want to raise awareness of the symptoms, they are common symptoms too that they get ignored or misdiagnosed. We need early diagnosis and a cure for this in the UK. I held a coffee morning on 1st April for pancreatic cancer action, we had a cake sale and a raffle and we raised a massive £1053.
Thank you for taking the time to read my story. Mom, We love and miss you every day, you taught us everything we know, just not how to live without you.
Kingsley Squire has sadly passed away from pancreatic cancer since sharing his experience with us. Here he talks about his experience in the hope it will help others going through similar.
Back in May I was swimming four and sometimes five early mornings a week in the Sidmouth pool. Now, I am one of the 8600 new patients diagnosed with pancreatic cancer every year. Mine is inoperable and therefore terminal. Without treatment I may have six to nine months overall survival which could extend to over a year with chemotherapy. Really, it is a no brainer. Much as my wife, Monica, and family, do not want to see me suffer the side effects, I have gone for chemo because even another month will be so precious. So why am I telling my story? Quite simply, to support the nationwide charity, Pancreatic Cancer Action, in their mission to save lives through early diagnosis by raising public awareness of the symptoms of a cancer which the late Hollywood ‘Dirty Dancing’ star, Patrick Swayze, who died from it in 2009, called the most lethal of all.
What alerted me was a call from my GP saying a blood test had shown a raised level of the pancreatic enzyme amylase. The very mention of the word had me calling up the symptoms of PC and two matched mine exactly, a back pain that was worse lying down and fatigue that was making me feel so heavy and unsteady on my legs.
So when, weeks later, a CT scan and a biopsy revealed terminal PC the diagnosis, devastating as it was, did not come as a shock because in my heart I had suspected it all along. I had my first 30-minute chemo effusion last week dripped through a cannula in the back my hand in Cherrybrook, the treatment unit at the Royal Devon and Exeter Hospital Oncology Centre which is recognised as one of the best in the UK for cancer treatment and care. I am being given Gemcitabine which is generally well tolerated and is given primarily because it improves quality of life for patients in my situation and can, indeed, add a short number of months to my overall survival. Only time will tell. But since my diagnosis I have learned that pancreatic cancer, unlike prostrate, bowel and breast cancer, is not on the public radar.
Many have never heard of it, let alone know any of the symptoms. Yet it has the lowest survival rate of any cancer with four patients in every five dying within a year because it is discovered too late for life saving surgery. As of now, I’m feeling positive, ready to face whatever this cruel disease throws at me. It will not be an easy journey. You realise that when all the possible side effects of chemo are explained. Yet there is a plus side to it all. That is the time I have to make sure everything is in order here at home and that Monica, bless her, knows how to pay the water bill and switch on the boiler! We have been married 53 years and we are in this together until death do us part. I can’t tell you what a comfort it is to reach out at night and hold her hand. You realise, too, amid the tears, how much loved you are by your children and grandchildren. Yes, these are precious, even happy, days and together we are learning to take each one as a gift.
I have been greatly uplifted by the stories of hope my daughter, Alison, has been sending me, one in particular of a church pastor diagnosed with an aggressive stage four PC and given only six months to live. After six months of chemo treatment, and a prayer network set up by his wife, there was no sign of cancer. His doctor called it a miracle. “You can’t give up,” he writes. “Stay strong and lean on those who love you. That is what I did. Remember, it ain’t over ’till it’s over. Keep the faith and be encouraged.”
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Emilee was diagnosed with pancreatic cancer in May 2015 and sadly passed away in January 2017. Neal tells the story of his wife’s journey… My wife of 16 years, Emilee, passed from pancreatic cancer (exocrine adenocarcinoma) on January 31st, 2017. She was first diagnosed on May 9, 2015. Here is a summary of her journey.
She hadn’t been feeling right for several months, maybe about six months or so. She had been losing weight, which is something she had wanted to do, so it did not initially sound any alarms in her head. Well, it might have, but she did not talk about it. She was also not quite right energy wise and was feeling depressed. One week before we went to the emergency department she asked me if her colour looked funny, and I said that she looked a little pale, maybe a little yellow cast to her skin. I said let’s go to the emergency room. Initially she said okay, but then said no, she would wait.
Emilee did not like doctors, and she had to be pretty sick to even contemplate going to one. So I knew she was not feeling well, but she was very stubborn when it came to medical issues. Another week went by, and it was a Saturday morning. She called me into the bedroom and said look at her colour. She was extremely jaundiced. Orange yellow colour, like she had used some type of tanning cream. We knew something was wrong, very wrong. At the emergency department, they took blood, and did an immediate CT scan. A short while later, the young resident doctor came in and said, “I have some bad news, you have a carcinogenic mass on your pancreas.” He really was a nice man, he just needed a softer way to break such devastating news. Also, her blood sugar was around 700, and now had diabetes which would have to be controlled with insulin. Emilee would spend the next few weeks in Yale New Haven’s Smilow Cancer Hospital. Known as Smilow, they first addressed her blocked bile duct by performing surgery and placing a bile duct or biliary stent, to allow the bile to flow. Her cancer was staged at stage 4 with metastases to her right adrenal gland and both of her lungs (diffuse but numerous tiny spots on her lungs, and the tumor was on the pancreatic head). Eventually the blood sugar was brought under control. It took several weeks for her to stabilize and be strong enough to go home.
Surgery was not an option, and her first oncologist presented limited chemo options, due to her debilitated condition at the time. In July she started Gemcitabine and Abraxane, the only regimen her oncologist felt she could tolerate. It seemed like just about every chemo treatment Emilee would wind up in the emergency room for one reason or another. By the end of August (she was getting chemo every other week), the side effects from the Abraxane were so bad that it was decided to just try the Gemcitabine alone. We also decided to change to an oncologist that had a little more hope in his approach and some optimism in our being able to explore different chemo regimens depending on how Em was responding. If there was a side effect listed, Emilee had it. Mouth sores, loss of hair (she actually looked really good bald and then very stylish with short hair, and decided to not wear the four wigs she bought except for one or two occasions; I guess I have to mention the one day I wore one of her wigs and looked like a real hippy for a day), neuropathy, nausea, skin issues, sometimes pain, ocular migraines, neurological migraines, the list went on and on.
The neuropathy in her hands and feet stopped progressing once the Abraxane was stopped. Her new oncologist felt that the Gemcitabine alone could be helpful, and it seemed to be lowering her CA 19-9 antigen, but then she started with signs of lung toxicity from the Gemcitabine. In addition, she was having ongoing nausea and digestive issues. She went back into the hospital numerous times for nausea control, for migraines, for occasional bouts of pain, and finally she needed a duodenal stent, actually two, (around January 2016) to help hold open the intestine where it meets her stomach (the duodenum). That helped with nausea and digestion for about a month, and then the stent was no longer working properly and food was not going through as the tumor was infiltrating it.
There was a period of about 4 weeks where she was constantly nauseous, with intermittent vomiting. Emilee then had surgery (in the hospital from mid to the end of March 2016) to perform a gastric bypass and thus go around the blocked area of intestine. Finally, she was able to eat. Her bowels were not normal, and the food did not digest very well, she had frequent bowel movements, but she had an appetite and was no longer nauseous. The temporary GJ tube that was placed after the bypass surgery was removed within a week. In January of 2016 she had one pleurex drain placed in her left lung due to repeated fluid build up. Then the gastric bypass, and 5 months later(June 2016), a pleurex drain was placed in her right lung. I was doing the draining every other day. Those stayed in place without any infections until December 30, 2016. The chemo…..the Folfiri regimen
After she recovered from bypass surgery in March 2016, she began chemo again, and she did not like the infusion pump that stayed attached for two days. Oh yes, by the way, she finally had succumbed to having a power port placed primarily because she had no choice with the folfiri regimen. Up till then, she resisted, even though her veins were uncooperative and required some skill on the part of the IV nurses. Folfiri had its side effects, the mouth sores, the nausea, some diarrhea, but overall not too bad and tolerable. We had a fairly good stretch where we stayed out of the hospital. I will always say “we” when referring to hospital stays, since I stayed in the hospital with her. Although out of the hospital, depression was an ongoing battle from early on. It varied from mild to severe.
Emilee’s breathing difficulties gradually got worse. By December of 2016 she was using oxygen at home both at night and during the day. It started out that she was more comfortable with the oxygen at night only, but as weeks went by, she needed it for comfort during the day as well. Her oncologist had decided that after the holidays, she would change to Folfox, swapping out the irinotecan for oxaliplatin. She took a holiday break from the chemo. At some point, I believe back in October 2016, she started doing chemo every three weeks instead of every two weeks. This was to have more recovery time and to have some days where she could actually enjoy activity and have some energy to go food shopping with me, go to her daughter and mom’s house, and to go gift shopping and furniture tag sale shopping.
She ran an online home decorations and furniture site on Facebook, which required ongoing effort, and could keep her very busy when she had the energy and patience to do so. Up to this point, she kept herself going by setting short term goals, such as making to a birthday, a holiday, birth of a grandchild, grandchild birthday, and many other such goals to give herself something to shoot for.
The Christmas holidays were always a major event, and she loved going all out with gift buying and making sure each person was very well covered. She was starting to feel weaker and her breathing was starting to deteriorate gradually. One of her fears was that she did not want to die around the holidays. She did not want her family to associate the holiday with her death. Her dad had died three years earlier of Alzheimer’s related issues, on January 31, 2014. In late December (the 30th, a week after our sixteenth anniversary), her two pleurex lung catheters were removed, and a biopsy was taken from a large lump near the right drain.
Her interventional pulmonologist suspected it was tumor growing out from the drain site. It was not painful, and even though the biopsy was positive, he did not feel it warranted any action. On New Year’s Eve, which was a Saturday, she started having more difficulty catching her breath and her oxygen saturation was erratic, so we called 911 and the ambulance took her to Smilow and they admitted her. She was having sporadic breathing crises where she felt like she could not get enough air, even with 90 to 100% oxygen. These episodes would last an hour or more.
She was now on her favorite floor in the hospital. The rooms were not cramped and all were singles on the floor, most with a decent view and a large window. The staff were familiar, and competent, and Emilee had met many of them before. With her breathing somewhat stabilized, they started her new chemo in the hospital on Tuesday, January 3. As an outpatient, she would have had the portable pump infusing the last of the chemo meds, the 5FU, over the course of 46 hours. In the hospital, she was attached to an IV/pump pole. On late Tuesday (11pm), she was dropping to 88% O2 on 6 liters oxygen and although she was not fond of Lasix because it usually messed with her blood pressure, they started with a small dose of 10 ml, followed by 20 ml about an hour later. They switched her to a face mask for oxygen at 95%. We were able to lower the oxygen to 45% after a half hour and she was maintaining 88% and above. We had to place a bedside commode since it was too much to keep getting to the bathroom to pee.
The nurse came in at 5 a.m. to take blood to run labs, and after waking Emilee, she left to get something she had forgotten. I was asleep on the cot in the room. Emilee sat up in bed and needed to pee, so she stood and took half a step toward the commode and her feet got tangled…..and she fell. I woke up to the sound of her flesh and bones hitting the floor. My yells brought a group of nurses and PCA’s. She did not hit her head and did not rip out her port, but she was talking about left hip pain and also having to pee. We got her on the commode (little did we know this would be the last time she would get on a commode for weeks). We got her into bed, for the beginning of an ordeal no person should have to experience. They took Emilee down stairs for an initial left femur and hip x-ray, and CT scan of her head.
Transferring her from bed to x-ray table and back to bed was excruciating, and to add insult to injury, after she got back to her room, orthopedics wanted additional x-rays taken and so they had to repeat the process all over again. The nurses placed a foley catheter so she would not have to worry about getting on a bedpan to pee. They also wanted to get an MRI to rule out bone pathology, and that did not happen until about 6 P.M. She got some IV Ativan before the MRI, but refused dilauded at this point. It was not a restful night. Ortho came into the room at 5:30 a.m. to tell us that they still did not get the MRI report, but that they knew the bone was fractured at the greater trochanter and would need a titanium rod and screws to secure it at the top and the bottom, that would secure the three or so fragments that were cracked and displaced. Surgery probably would not be until later in the day due to the large number of emergencies (Emilee was thinking….uh, what am I???).
Later in the day she was in so much pain that she agreed to a small dose of dilauded, which prompted her to desaturate, and they had to maximize her oxygen until she improved. This is not what you want to happen before a surgery where they are going to intubate you. I was extremely concerned about them being able to extubate her after the surgery. Fortunately, her oxygen desatting episodes were scary but not much worse than the one she had just prior to the surgery. She was in crisis mode shortly after getting back to her room after recovery, but after some debate with the floor doctor, he agreed to see how she was in one to two hours rather than send her to the intensive care floor. Luckily Emilee stabilized during the next couple of hours. We were able to control her pain with tramadol and Tylenol, and Zofran for the nausea she was having.
Since it was still too painful to move, or change positions, Em had to use a bedpan. If there was any modesty or dignity left, well let’s just say I did my best to remember to pull the curtain on the side of the bed towards the door, and to close the door….if anyone did come in (they almost always knocked first) they would encounter the curtain and I would ask them to give us time to finish. I gave myself a new title, CPO, chief potty officer. Emilee was more comfortable with me than anyone else, and I accepted the responsibility and quickly learned two things. How to do it right, and that it was near impossible to keep the bandage on her tailbone clean. The skin was starting to break down from pressure, moisture, lack of movement. So frequent changing of the puff something or other (I don’t remember what it is called, the name of the bandage) was required.
We plodded on, with intermittent breathing crises, gradual improvement in ability to move her left leg, and standing with usually assistance of three, a physical therapist, a physical therapy assistant, and an occupational therapist. She would get on the commode only when they came, and she was taking a few steps by the following week. On January 17th they started talking about discharging her to rehab, but Emilee said wait a couple more days. She had been on prednisone for a few days to help her lungs, and they stopped it today due to its wreaking havoc with her blood sugar. She was also starting to have incidents where mucus would get stuck and she would have trouble getting air exchange which was very frightening. These would last for a few minutes. Increased nebulizer treatments, percussion to her chest, and use of a plastic apparatus you blow into called an acapella, were helping somewhat. She was getting agitated that afternoon, after having a migraine, and was just getting fed up with everything.
I got her Japanese food that she liked for dinner as she was sick of the hospital menu by this time. She also started having pain that evening in her lower back and right abdomen which was tender. Tramadol was not helping, but the IV torridol helped with the pain and the agitation that accompanied the pain. The next day she had a fever and felt like she had the flu. An ultrasound of her abdomen indicated possible bile duct blockage. After 2 a.m. she was npo (no food or drink). Her fever had gone up to 102 but started coming down after Vancomycin. She waited all day for surgery which didn’t happen until about 5:30 p.m. and they needed to place a biliary drain (January 19) with an external tube and drain bag. So another surgery was performed, fortunately without general anesthesia, and although I was told there was some cursing on her part during the procedure, she generally tolerated it well.
It was only on December 30 that she had her two pulmonary catheters removed, and now had to have another drain, but at this point she did not mind so much. Anything that kept her more comfortable was acceptable. Ten minutes after returning to her room from the recovery room, she began what they call rigors. Pronounced “rye gors”, severe chills with violent shaking, her temp went to 101, her heart rate was 130, sugar was low at 60, BP went to 180/100, but came down to 130/82 after awhile, and her o2 sat was at 82 on 5 liters oxygen, and that came up to 90 with facemask and o2 rate at 50%. Heart rate lowered to 84 after 20 minutes, and IV dextrose brought up her sugar. By the following day, her bilirubin was decreasing, her sugar was better, urine output was still low.
She had been on Vancomycin and ceftazadine the last two days for the biliary issues and I believe a urinary tract infection. She had also been using a urinary catheter for some time after the fall and fracture and following the hip surgery. Physical therapy was able to switch her to nasal cannula oxygen with good o2 stats maintained, so she could take a few extra steps from the bed towards the door to the room. Early Saturday morning 4 a.m. January 21, Emilee woke up nauseous and vomited, and got some Zofran and Ativan. The doctor wanted to try a small 1 mg dose of Haldol but she refused. At 10 p.m. she was nauseous with head turns, achy all over her body, body very cranky….got Ativan and tylenol, and finally quieted down by 2 a.m. Sunday morning she was still nauseous, and had blood in her urine, but an ultrasound did not show anything. The night before they stopped the Vancomycin, and this morning stopped the pantoprazole.
Her o2 dropped at 4 p.m. and she needed to switch back from nasal cannula to mask. The same thing happened at 11:30 p.m., and she stayed on the mask, and was able to drop from the initial 70% o2 to 40% after a half hour. She was able to go to sleep with 28%, but at 430 a.m. woke up and her o2 sat was 84%, which improved with 40% O2. Her respirations had increased to 28 per minute during the event. They gave her 1 mg Ativan during the episode. At 7 a.m. Emilee’s achy back and legs increased to severe pain, and the tramadol was having very limited effect. Torridol was given. Later in the day (Tuesday January 24), they gave Em a unit of blood to boost her hemoglobin and hopefully improve her energy. She was still on the ceftazadine.
At midnight Tuesday into Wednesday, she had right abdominal pain and her abdomen felt harder in that area. Later in the day on Wednesday, two different hospice people came to talk to us. One was inpatient hospice which means she could stay right where she was, have the same staff treating her, but an outsourced hospice team oversees the medical orders. The other was a hospice facility that she would have to be moved to. Emilee slept all morning and most of the afternoon on Thursday January 26. I don’t think she wanted to be dealing with the decision of hospice. It all came on too quickly, hastened by the fall and leg fracture. She did not want to deal with it, so she slept. Unfortunately, the number of beds allocated to “hospice” in the hospital were limited. That meant if we did not make a decision soon, the allocated space would go to someone else. So to add to an excruciatingly difficult decision to be making about your death, a little pressure to hurry up and make a decision, made for one very upset and very angry Emilee.
She flung a package of cheese just out of sheer frustration. I think she really wanted to break something. Emilee finally ate something at 4:30 p.m. that day, she had one of her favorites, a grilled cheese. They resumed the pantoprazole, as she felt burning in her abdomen. Our favorite APRN came in to talk about the hospice decision, and since Emilee was leaning towards staying where she was already comfortable, with staff that she knew and liked, it just reinforced what she and I were already thinking. The decision was made. Everything remained the same except it was easier to increase the frequency of pain meds.
On Saturday much of the family came to visit, and she had visitors most of the day, which made for a very tired Emilee. My son and daughter in law came with our 1 ½ year old granddaughter and 1 month old grandson. The baby laid on Emilee’s chest as our granddaughter gave Em a hug. To say that was priceless doesn’t begin to describe my feelings, and Emilee’s as well I am sure. I did not hear any formal goodbyes, but the feelings were present in the room. When I said goodbye to them downstairs and my granddaughter reached out for me to pick her up and hug her, I lost it completely. I held her and sobbed and my daughter in law hugged me too and we all cried. She said she would come back in a few days and I told her I didn’t think there was that much time left. They live about 2 and a half hours away. I had already called my brother in Florida and he was flying up on Sunday. Saturday night Emilee started having difficulty at 10 p.m. We gave her Ativan and increased her oxygen to 70% and then at 4 a.m. her O2 dropped to 78 so we increased her oxygen to 98%. IV Ativan was repeated, we were using the rebreather which is essentially 100% oxygen, she had a nebulizer treatment, and finally her O2 sat came up after dilauded was given.
She finally fell asleep and seemed more comfortable. She really did not want the dilauded I think because she thought she would not wake up. She was so distraught in discomfort and pain and getting increasingly agitated that I had no choice. Emilee slept until about 10 a.m. She was very groggy at first, with absolutely no filter to what she was saying. I can’t recount all that she said, but some of it was quite hilarious, and her daughter decided to wait a little while to bring in her children lest the last thing the children remembered of their mimi was something very off color. Emilee was okay while her daughter, son in law, and children visited on Sunday. Her mom had been there on Saturday, and Emilee’s son as well. On Sunday afternoon, my brother arrived to a tearful scene, and a close friend came early evening. That night Emilee was up from 1:30 a.m. to 7 a.m. Multiple doses of Ativan and torridol, and she was telling me to take her home, she said, “take me home, take me home, I want to go home”. Another dose of dilauded at 7:20 a.m. and she finally went to sleep. That was the last time she spoke. She slept all day Monday, except for around 5 p.m. when she got very restless and started pulling at her oxygen mask and her port line and we had to give her more dilauded.
Her daughter, my brother and I were with her all day, and one of my sons and my nephew came to see her as well. Another friend came at 10 p.m. because I told her to come to say goodbye. She stayed with me and Em until midnight. I moved my cot next to her bed. I held her hand as I lay near her and said all the things I wanted to say and I told her not to be afraid, that I loved her, that all of us would be okay, and it was okay to let go and be at peace. I woke up at 3 a.m. I could tell her breathing had changed and was now slow with long pauses between breaths. I put my head on her chest and listened to her heart and felt her chest slowly rise and fall. By 3:40 a.m. she had breathed her last breath. This incredible woman, my wife, was finally home.
Chloe tells the story, in her own words, of the journey that led to her dad’s diagnosis for pancreatic cancer from which he sadly died in January 2015, aged 47 In memory of Antony Paul Timmons: 1967-2015
What does the word cancer mean to you? Because before September 2014, to me and my family, it was a word. Not a feeling, not a life changer. My father, Tony, was the most beautiful, kind hearted person that you could meet, he worked 6-7 days a week to provide for me and my family, and still had all the time in the world to talk, be my best friend and the best father, husband, son and brother there could be. So when he was diagnosed with pancreatic cancer in September 2014, our world came crashing down.
The first question you ask yourself is why him? Why my dad? he was healthy, he ate clean, never smoked in his life, didn’t drink. So why him? what did he do for this to happen to him. And what’s going to happen, is my dad going to die? 2 biopsys were carried out in hospital and my dad was sent back home to wait for 2 weeks until the results came back. As a family we tired hard to make life as normal as possible until we found out what dad had to face. The 2 weeks seemed to drag but finally in early October it was finally time for my mum and dad to visit the hospital to find out the biopsy results, I felt sick.
After what felt like a lifetime, I received a text from my dad telling me it was good news, the kind of tumour that he had was extremely slow growing and didn’t need any treatment until February 2015. To see a smile on my dads face that evening meant the world. After sitting down and having a proper chat with my dad, I learned that his cancer was such a rare type that the doctors gave him at least another 10 years. The only bit of bad news was that the cancer had spread across his pancreas on to his liver, which meant that he was unable to have surgery.
When someone as close as your own father is diagnosed with cancer, you honestly spend 100% of your time thinking of ways around the current problem. ‘What if they just remove it from the pancreas?’ ‘Why can’t they give him chemo straight away?’. So many questions that just don’t have an answer roll around in your head that it slowly becomes unbearable to think about anything else. As the weeks went by life did become much easier, we had all our faith in what the specialist had told us, and we were confident that he had a long time left with us. And then in November he started to go down hill. He stopped working, he was ill, his feet and legs swelled up and he couldn’t walk, and no one could put a finger on what was happening, was it the cancer, or was it something else? no one knew, the doctors didn’t communicate, so he was admitted to hospital and put on a drip. They put it down to dehydration. Still at this point I had nothing but positive thoughts, ‘just a bump in the road’. I kept living my day to day life knowing that my dad was a fighter, and he WAS stronger than his cancer.
After a week or so in hospital dad was sent back home, he wasn’t himself, and we had to be extremely careful around him because he was very ill. Thinking back now I realise that this is when I should have realised that something wasn’t quite right. A few weeks later in late December, the same happened again, my dad got worse and admitted straight back into hospital with what the doctors said was dehydration, by this time, he refused to eat much, wasn’t drinking a lot and this was affecting his brain, he was finding it difficult to remember what was going on and who was around him. But it was Christmas, a miracle had meant my dad suddenly felt a bit bitter and could come home for Christmas Eve. But seeing my dad, the man who used to be as jolly as Santa Claus himself, sat in a room on him own, wearing 2 coats, a scarf and a hat, his eyes filled with tears just broke my heart. I finally realised that something was wrong, but I just couldn’t admit it to myself, or anyone else. By Boxing Day he was back in hospital, unable to walk, eat or drink.
In the next few days things just went from bad to worse, and on the 5th January, I was told the worst news that I’ll ever be told. ‘We were wrong’. They’d got it all wrong, his cancer had grown, and they’d realised that everything that was said, was wrong. My dads cancer was extremely aggressive, so much that it was way to late for any treatment. He had up to 2 weeks left to live, and there was nothing else they could do. How do you take the news? How do you react when your told your dads going to die in 2 weeks time?, how do you hold in the pure anger and disappointment you have when he could have been treated 3 months ago?, how do you cope knowing he could have lived longer? How am I going to live without him?. My dad was sent home later that day, my initial thoughts were that they were wrong again, and he was going to beat it still, he was going to be the miracle man. The next week was a whirlwind of district nurses, meetings with Marie curie, and trying to source a bed for down stairs due to him being unable to walk anymore.
But we did it, we made him comfortable at home and he started to get better, he started to be himself again, so much so that he asked for a Chinese takeaway after not eating anything for almost 2 weeks. He even got out of bed and sat with me on the sofa, he started to banter with me like he always did, and I truly believed that the doctors were wrong, he’s not going to die. He’s going to live. Unfortunately my dads story hasn’t got a happy ending, a few days after this outburst of my dad going back to his old self, on the 20th January 2015 at 4.30pm he sadly lost his battle with pancreatic cancer. I truly believe that if he received treatment a bit sooner his story may have been a bit different, but as everyone says to me, you cannot change the past, only the future. The reason I’m putting my dads story out there is to maybe change someone else’s life, stop what happened to him from happening to anyone else, give everyone battling cancer a chance to beat it or even survive for a little while longer.
Rest in peace dad. I love you forever.