I've posted a few times on here over the past 10-11 months and I just wanted to give a bit of an overview as to how things went, the ups and the downs of my Dad's journey.
Dad had indigestion and hiccuping for several months for which he was prescribed omeprazole, he hadn't been eating as well due to the indigestion and had lost a little bit of weight but nothing too noticeable, 12 stone at this point. The antacid did improve his symptoms but a couple of months later he became aware that food was getting a little stuck on the way down. This set off the alarm bells with his GP and he was sent for an endoscopy. (This was scheduled by the hospital for 3 months later, but the GP managed to get it pushed through the following week.)
The endoscopy was done, they discovered a mass in the cardia/fundus which they took a biopsy from. Our worst fears were confirmed when Dad was told he had cancer the following week. A CT scan was then booked in to see the extent of the cancer. After the CT scan Dad was diagnosed with stage 4 adenocarcinoma - gastro oesophageal junction cancer on September the 26th 2018. It has spread to his liver and lymph nodes. T4 N3 M1. The tumour at this stage was 14mm with small spots on his liver and enlarged lymph nodes around his stomach.
Dad met with the surgeon, due to the metastasis surgery was not an option. In the surgeons experience removal of the stomach, surrounding lymph nodes and sectioning of the liver would not get rid of the cancer and it would come back. But the treatment available now was far advanced from what it was 10-20 years ago and that people were living much longer lives with cancer.
The meeting with the oncologist took place soon after. Hope was the order of the day. Dad would receive the platinum treatment, the best available. Due to the location of the cancer it would be EOX - E – epirubicin O – oxaliplatin X – capecitabine. Some people respond to this treatment very well. Dad never asked what the outlook was. He was determined to beat this.
On meeting again with his GP, Dad was told that he may have had cancer for 1-2 years and that it had nothing to do with his lifestyle. Dad was a very happy, a black belt in karate, a healthy gym going 68 year old. He looked 10 years younger than he was. Never smoked and a light drinker with a good diet. That stomach cancer was hard to detect due to the lack of symptoms which tend to present at a late stage. There was no way of knowing that cells had gone rogue. Dad had no previous health issues except for gall bladder removal 5 years ago.
Dad was told that as he had no previous health concerns and due to him being in great shape that they should be able to do 6 rounds of EOX. The first scan after round 3. The chemotherapy started the following week. The first round went ok, Dad felt fine. He was never sick, a little loose out the other end, he had runny eyes and nose. General tiredness but otherwise his usual self. He lost a bit more weight, now down to 11st. Round 2, as far as i remember it was similar to the first. Dad was a little more tired, started to notice tingling in his fingers and feet. The neuropathy was starting to take hold and his hair was falling out. Round 3 and the neuropathy was getting worse, other symptoms were being managed but he was feeling 'seedy' and was off right his food, it tasted like cardboard. We tried everything, different foods, portion sizes, spices etc. Down to about 10 and a half stone by now. The food battle was probably the worst thing throughout Dad's journey. The other thing that bothered Dad was the sensitivity to cold as it was winter throughout most of the EOX treatment.
Time for the 1st scan.... boom, the cancer had shrunk by over 35% and the lymph nodes looked good. Small liver marks hadn't changed but a reduction overall and no further spread. The joy, the hope. 3 months after diagnosis there was some light. Right into the 4th round. The neuropathy was now stopping Dad playing the guitar. He couldn't feel the strings as well. His feet felt numb and walking was becoming a bit of an issue but he could still get around. He described it as wearing 2 pairs of socks all the time.
Round 5 and Dad got sick, he was out of it. He didn't have to go into hospital. He was treated with oral antibiotics and it passed eventually. By round 6 he had had enough of the chemo and was looking forward to a break. The neuropathy was terrible by this point and the tiredness meant he was falling asleep a lot. He was very pale and pasty. We had managed to keep his weight around 10-10 and a half stone through small meals often and weight gainer shakes. Time for CT scan number 2...
The cancer had grown, it was now around 17mm and there had been some growth in the liver. It was devastating news but we were told that there were 2nd line treatments available and also the possibility of trials. This was not to be the end. Hope was still there even after the negative results of the scan. We were in shock again, similar to when we were told about the diagnosis. Dad was incredibly pale and tired. He went to the GP for blood tests. We were worried he was anemic. GP said that he would be informed if the blood tests showed anything. No news was good news.
We decided as a family to take a little holiday in March to get away from it all and be together. We went off to the lake district for a week. It was beautiful. We stayed in an idyllic cottage surrounded by fields of sheep and farmland, went for walks round lake Windamere, had great laughs, played games, watched movies and enjoyed each others company. Dad was becoming increasingly tired but still manged to enjoy himself.
Dad had about 5 weeks off before he started the next chemo which was docetaxel. I read that some people had a great response to it. I held onto that hope as always. We all did. Before the chemo started blood was taken. Dad was severely anemic. He had been for weeks. The blood tests the GP had taken weren't checked for hemoglobin levels just for liver and kidney function. This had really affected Dad's quality of life and the GP missed it even though my Dad has specifically said that he was worried he was anemic when he had the blood tests at the GP's practice.
A blood transfusion was the order of the day. The first of many to follow. Once his bloods were up, the docetaxel was started. He started complaining of pains in his chest, the on call GP gave him cocodamol which did nothing. He was left for 5 days in severe pain before we had had enough and called an ambulance. Dad ended up in hospital with suspected sepsis. Luckily it was caught just in time, I thought we were going to lose him that week. Days of broad spectrum antibiotics and then more blood before Dad was allowed to come home. He was down about 9 and a half stone now and looking a shell of his former self. After another week of recovery Dad had round 2 of the docetaxel. He ended up in hospital again, more antibiotics, fluids and blood. He was too weak to have another dose, it would probably kill him he was told. The oncologist also said that trials were off the table as Dad was too weak. Now it was about managing his symptoms and making him as comfortable as possible. Dad was put on morphine for the pain, his anti sickness was increased, there were pills for this, that and the other. He was drugged up to the eyeballs. From here he didn't eat much, he steadily lost weight and slept most of the time. He needed blood almost every week from here on in.
The last time he went into hospital over 10 days he had 5 lots of blood and was pumped full of anti biotics again. I stayed with him in the hospital, I didn't want him to be alone. He had his own room and I slept on a z-bed. He was becoming more confused and weaker by the day. The bloods did help immensely and I had to push the doctors to give him the blood. Take it from me, you have to push and keep pushing. I wish we had realised this earlier on in the treatment. The doctors and oncologists are happy to pass you around and deny you treatment that could affect your quality of life. You are but a number to them, so push hard and challenge them. The only true heroes in all of this are the nurses that look after you or your loved ones that are going through this.
I had to fight to get Dad home, he had had enough of hospitals. We managed to convince the doctors and Dad was transported home nearly 2 weeks after being admitted. He was very emotional when he got home, I don't think he realised what the gravity of the situation was. He was trying to exercise and was eating better. That day was amazing, he picked up his guitar, joked and laughed about. My Dad was there, back in his own castle. Over the next 2 weeks he went down hill pretty quicky, the district nurses were great and helped as much as they could. My amazing Dad passed away in his bed with all of us around him, talking to him, holding his hand, on the 5th of August on a sunny Monday afternoon. The funeral was last Friday. There was relief that Dad didn't have to suffer anymore but that was followed by immense gut wrenching sadness. He didn't deserve this, no one does. He had watched his mum and younger sister die of breast cancer, his dad die of lung cancer, one of his best friends die of prostate cancer and now he too has been taken by cancer.
I'm not writing this to scare or upset anyone, I think it's important to read about other peoples journeys. How this went for my Dad could be completely different for you or your loved one. My brother in laws colleagues husband has the exact same cancer and metastasis and has been battling it for 5 years. The treatment has kept it at bay. There is hope, there is a chance. And for those reading this I hope this helps with some of those questions that you have on what's going on with you or your loved one. My Dad fought this with braveness, dignity and love. He was the kindest and warmest person anyone could meet, he loved life and didn't want to go. For those worried about symptoms, go and get checked, and get checked again. Don't be pushed away by your GP with antacids, push and get checked properly. If it's nothing but indigestion then great but if it's something more sinister then perhaps they will have caught it earlier which is the most important factor in dealing with cancer. Early diagnosis is key to survival.
If anyone has any questions about what I have written here, about treatment, about GP's, oncologists, my Dads journey. Anything at all please get in touch.
Thanks so much for sharing your Dad's experiences, it is helpful to understand what could happen for those of us with a similar diagnosis. I'm sure you were a great support for him.
I’m so sorry x
Thanks for sharing the experience and advice. God bless you. Deya
Hi Elabella. Good to hear from you. How is your mum doing. I hope she’s well
She’s doing well, she has her 3 monthly scan results on Thursday so feeling anxious but trying to stay positive. She had some acid again recently so really hoping it’s not a bad sign. Thank you for asking xxx
Great news. All the best for Thursday. Acid could actually be a good sign it could indicate good function of stomach lining. In my experience I lost all sense of acidity when I got this disease. Good luck with the scan
I hope you are right Deya, thank you xx
Hi i have just read your story as i am new to this forum and i am very sorry for your loss. i have had to push for everything for my husband who was diagnosed with stomach cancer last year. he underwent a full gastrectomy in april but we have now been told that it has spread to his liver,. there is a suggestion for more chemo but his life expectancy is between 3 and 6 months. i do not how to deal with this and have not told our 3 grown up children what the time left is yet - feeling so desperate and lost.
So sorry to hear about your husbands latest diagnosis. I haven't been on here for a while as I've had to sort my head out so I've only just seen your reply. I imagine you are still going through every emotion possible having dealt with the initial diagnosis, the operation, the thought that everything was clear and then having to deal with this awful news.
Has your husband decided the way forward for him? My Dad was eventually told that more chemo would kill him after having two unsuccessful lots of the 2nd line treatment, Docetaxel. If your husband still has the chance of chemo and is strong enough it just depends whether he wants to go through with it, mentally and physically. Everyone reacts to treatment differently and your husband could have a great response to it.
From my own experience with my Dad, I wish he had not gone for the next lot of chemotherapy, it destroyed him, he was too weak to cope with it. But we weren't to know that it would have that impact at the time. It could have extended his life and he could have had a good quality of life. That is really the key to all of this, quality of life. Knowing that someone has a terminal condition, for them being able to get up and do mundane things like go to the toilet, make a cup of tea, have a shower or even get clothes on allows them to keep their dignity. With my Dad being so weak all of those things were an incredible struggle if not impossible and that really upset him. As a family we were there for him and would help him with everything, it didn't matter to us. We were just happy to do what was necessary. Anything to make him comfortable.
None of this is easy, every day is an absolute struggle, try and have moments where you don't talk about the big C. Make time to talk to each other like you used to do and be honest with each other about your hopes and fears.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: