Hi all,
Just like many of the people here who post or simply view conversations on this website, I have found reading about individuals' different stories both emotional and encouraging as me and my family have had to embark on this new journey with my dad. With the consent of my dad, I thought that it would also be good for me to share our experience that we have had so that like me the journey can help people to be encouraged and be reminded that they are not alone and do not have to go through it alone. Forgive me in advance because it is going to be quite lengthy!
In February 2019, my dad started to complain of shoulder pains and it was causing him so much discomfort. He started by taking normal painkillers and like a lot of men, was reluctant to see the GP. The pain continued for several weeks and with encouragement from my me and my mum finally went to the GP. The doctor said this pain was due to muscle strain so prescribed a gel for him to apply. Time went by and still the pain persisted, he went back to the GP on several occasions, was given more painkillers and then was referred for physiotherapy. My dad was complaining that the pain sometimes would be at his shoulder, to his right chest, his arms and even his lower back. My dad who usually is an optimistic person started to tell us that he wasn't sure what was going on but felt like he was dying.
One night when I came home from work I met my dad in bed in his room and he told me that he can't walk and feels that he doesn't have strength in his legs. We called the ambulance who took him to A&E, couldn't find anything abnormal from the tests conducted and suggested that this pain my dad was experiencing was possibly due to vitamin D deficiency. From then my dad started vitamin D supplementation for deficiency but this didn't make any difference to his pain.
Fast forward to September 2019 and my dad started to stay in bed more, his mood was low, had lost significant amount of weight and had lost his appetite. We all went as a family to the GP to explain what was going on and the symptoms that my dad was experiencing. We were seen by a physician associate (who was excellent) who asked about how often my dad uses the toilet for a number 1 and my mum informed her that often times he wakes up at night. From the information gathered she requested a blood test to be done which included PSA test.
We were told to come in the next day and was informed that all results were fine however my dad had a PSA of 1250. They immediately referred him to oncology and urology for further examination. Everyone acted very quick and a week later we were invited to the hospital oncology department who did a physical examination and said that it is suspected prostate cancer. My dad became hysterical hearing this because it was the last thing that we expected to hear. It was only then that it actually hit home. They gave him bicalutamide 150mg tablets daily to commence and within the following two weeks and had an MRI, CT scan as well as biopsy. However, within these two weeks there was a significant change in my dad. He seemed happier, started to eat again and was experiencing less pain.
We then saw the oncologist after all the test results had been received. He confirmed from the scan that my dad has prostate cancer and that this was advanced, Gleeson score of 8 and had spread throughout his bones explaining the pain he was experiencing. He also said that the major organs were not affected. From the physical response my dad had to bicalutamide, he recommended prostap 3 monthly injection to be commenced immediately (and to stop bicalutamide once the 28 day supply of tablets had finished) and to also start chemotherapy in January. He also requested that my dad was started on alendronic acid as the cancer could make his bones weak. The information was difficult to digest but the oncologist showed so much empathy that he put us all at ease. As you can imagine all of this happened so quick - seeing the physician associate at the GP to seeing the oncologist with the various tests in between was all in the space of three weeks.
My dad since then has been doing okay. He still experiences pains but is in a much better place than he was before starting treatment. His appetite has definitely been restored back to before as he's gone back to eating his big portions again!
On Christmas Eve, he went for a blood test where everything was checked including his PSA. We met the oncologist today (just less than three months after we last met) who told us that his PSA has now dropped to 3.8! The plan is still to commence chemotherapy (docetaxel) in a few weeks so will keep you all updated.
Although a sad and difficult time, this has definitely brought us closer to one another than ever before. Very soon I will also post about the emotional aspect of it.
If you have any questions, please do not hesitate to ask!
Mr IO
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User
Two very positive notes in there -
a) fantastic response to the HT and
b) your dad's improvement in mood. He must feel relief that he wasn't going mad and that eventually his concerns have been vindicated. Unexplained pain or symptoms can have a serious effect on mental health & wellbeing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sorry that you find yourself here. Many of us here know just how devastating it is to be told out of the blue that you have cancer. It sounds as if your dad is responding well to treatment, which is good news. How old is he?
Best wishes,
Chris
User
Thanks for sharing that story, I hope you get all the support you need.
It’s an emotional rollercoaster but as a family you become incredibly resilient and find a strength you never knew existed.
This forum is great place, please let us know how old your dad is. I’m so glad he has had a positive response to treatment and PSA is so much lower.
Best wishes
User
Avoiding contact with other people is the best precaution, so no nights at the pub during chemo!
Best wishes,
Chris
User
Originally Posted by: Online Community MemberThe oncologist did highlight to us the risk of infection when he commences chemotherapy so that has been quite a significant concern for me given that he is starting it in winter. Does anyone have any advice on this? Any precautionary measures that we can put in place?
Hi IO, I would get a flu jab before starting chemo, every little thing helps. Get a decent thermometer (or 2) to monitor temps (I did twice a day). Bottle of hand wash stuff by the front door for visitors. Avoid groups of people in confined areas. To be honest, it's more a case of common sense than anything else.
Good luck to everyone coping with the insidious big C |
User
Perhaps worth noting, if you weren't already aware of the fact, that anyone diagnosed with cancer is eligible for a free flu jab.
Best wishes,
Chris
User
My father in law was most peeved that his wife banned him from going to the pub between days 5-10; nor would she let him eat shellfish just in case. Many chemo nurses recommend monitoring temperature every day with a thermometer although I noticed on here recently that one member was told it was unnecessary. Whatever you do, if there is any suggestion of infection / raised temperature, don't mess about ... ring 111
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
My dad had chemo in the winter too.
We did not allow visitors who even coughed! We disinfected everything that was touched, door handles, even purchased disinfectant aerosol- dettol I think it was.
Also my dad saw this amazing homeopath, which we believe in, she advised at least 2 litres of filtered water and immune boosting foods.
We always practiced good hand hygiene before meals, and were very careful with food prep.
The mouth can feel very dry with chemo, so lots of water.
Don’t be afraid to ring the aftercare if temperature rises. Monitor temperature closely.
good luck
User
Not sure water helps much with chemo mouth although it is really important to stay hydrated anyway. Best thing for chemo mouth is to suck cubes of frozen pineapple during the infusions. If he has heart problems, check with a doctor before giving him loads of pineapple though.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Show Most Thanked Posts
User
Two very positive notes in there -
a) fantastic response to the HT and
b) your dad's improvement in mood. He must feel relief that he wasn't going mad and that eventually his concerns have been vindicated. Unexplained pain or symptoms can have a serious effect on mental health & wellbeing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sorry that you find yourself here. Many of us here know just how devastating it is to be told out of the blue that you have cancer. It sounds as if your dad is responding well to treatment, which is good news. How old is he?
Best wishes,
Chris
User
Thanks for sharing that story, I hope you get all the support you need.
It’s an emotional rollercoaster but as a family you become incredibly resilient and find a strength you never knew existed.
This forum is great place, please let us know how old your dad is. I’m so glad he has had a positive response to treatment and PSA is so much lower.
Best wishes
User
Originally Posted by: Online Community MemberTwo very positive notes in there -
a) fantastic response to the HT and
b) your dad's improvement in mood. He must feel relief that he wasn't going mad and that eventually his concerns have been vindicated. Unexplained pain or symptoms can have a serious effect on mental health & wellbeing.
Thank you and I definitely agree with your second point. The change for him usually being a bubbly person who is active around the house to being quiet and reserved spoke for itself.
Seeing him back to being his usual happy self is what is also helping us as family members mentally.
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User
Originally Posted by: Online Community MemberSorry that you find yourself here. Many of us here know just how devastating it is to be told out of the blue that you have cancer. It sounds as if your dad is responding well to treatment, which is good news. How old is he?
Best wishes,
Chris
Thank you so much. I knew I was forgetting something! He turned 63 in September.
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User
Originally Posted by: Online Community MemberThanks for sharing that story, I hope you get all the support you need.
It’s an emotional rollercoaster but as a family you become incredibly resilient and find a strength you never knew existed.
This forum is great place, please let us know how old your dad is. I’m so glad he has had a positive response to treatment and PSA is so much lower.
Best wishes
Thanks a lot for your kind words. It definitely was and still is a rollercoaster - September 2019 to now like such a significant longer period than February 2019 to September 2019!.
The oncologist did highlight to us the risk of infection when he commences chemotherapy so that has been quite a significant concern for me given that he is starting it in winter. Does anyone have any advice on this? Any precautionary measures that we can put in place?
|
User
Avoiding contact with other people is the best precaution, so no nights at the pub during chemo!
Best wishes,
Chris
User
Originally Posted by: Online Community MemberThe oncologist did highlight to us the risk of infection when he commences chemotherapy so that has been quite a significant concern for me given that he is starting it in winter. Does anyone have any advice on this? Any precautionary measures that we can put in place?
Hi IO, I would get a flu jab before starting chemo, every little thing helps. Get a decent thermometer (or 2) to monitor temps (I did twice a day). Bottle of hand wash stuff by the front door for visitors. Avoid groups of people in confined areas. To be honest, it's more a case of common sense than anything else.
Good luck to everyone coping with the insidious big C |
User
Perhaps worth noting, if you weren't already aware of the fact, that anyone diagnosed with cancer is eligible for a free flu jab.
Best wishes,
Chris
User
My father in law was most peeved that his wife banned him from going to the pub between days 5-10; nor would she let him eat shellfish just in case. Many chemo nurses recommend monitoring temperature every day with a thermometer although I noticed on here recently that one member was told it was unnecessary. Whatever you do, if there is any suggestion of infection / raised temperature, don't mess about ... ring 111
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
My dad had chemo in the winter too.
We did not allow visitors who even coughed! We disinfected everything that was touched, door handles, even purchased disinfectant aerosol- dettol I think it was.
Also my dad saw this amazing homeopath, which we believe in, she advised at least 2 litres of filtered water and immune boosting foods.
We always practiced good hand hygiene before meals, and were very careful with food prep.
The mouth can feel very dry with chemo, so lots of water.
Don’t be afraid to ring the aftercare if temperature rises. Monitor temperature closely.
good luck
User
Not sure water helps much with chemo mouth although it is really important to stay hydrated anyway. Best thing for chemo mouth is to suck cubes of frozen pineapple during the infusions. If he has heart problems, check with a doctor before giving him loads of pineapple though.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you all for the useful information. I will definitely take it on board. He had a flu vaccine already in November 2019 and have been looking around for our thermometer in the house but couldn't so one will buy a new one.
Treatment is set to start in the next few weeks so I will update on how it goes.
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User
Our hospital gave us a thermometer when OH started chemo but it let us down badly when, on the first cycle, his white blood cells/ neutrophils hit rock bottom and he got an infection.
Because it was our first experience of chemo we didn’t worry too much when he woke up one morning (in the nadir period) and threw up. Temperature seemed ok so I gave him a cuppa, he had a bit more sleep and got on with the day. But by the afternoon he was shivery and shaky. Still apparently no temperature but I persuaded him to phone the hospital helpline. They made him keep the thermometer in for ages...far longer than the instructions which said it would beep when ready. The reading then came out high. So they firmly advised him to come straight in ...and bring an overnight bag.
By the time we got there his temperature was 40. Neutrophils zero. Neutrophenic sepsis in full swing. IV antibiotics and four days in hospital sorted it but not an experience to repeat!
Upshot..avoid people with bugs and take temperature regularly with a reliable thermometer during vulnerable nadir period, be careful with basic hygiene, and as Lyn said....if in any doubt, if you feel unwell or run a temperature....don’t hang about. Ring for advice. We are on fourth cycle now, dosage reduced by 20% because of first experience and he’s tolerating it well.