Dads small cell cancer

Hi everyone.good news is Dads daffodils have come up around the rugby club and Dad is still here to see them!! He has recently been in good health walking around etc.He and mum celebrated their 51st anniversary.unbelievable that he was given months to live in 2015.I wished I hadn't worried so much when he WS diagnosed in 2012..Yes he has been very I'll several times but he is still here thanks to chemotherapy. I hope his story gives hope to others diagnosed with this rare type.they thought he had the usual type of prostate cancer first for perhaps two yrs before the small cell type.it was mum who spotted the symptoms while battling her own stage 4 cancer. My heart goes out to everyone whose dear Dad's are suffering and I will keep my fingers crossed for you.Thank you Lynn for your continued support.Perhaps the newcomers should start their own threads that way anyone searching for support can gain more advice.love to all Paula xx

Golden sugared almonds are on order and Mum let slip she has contacted the local council and the "friday club" who are men who keep the grounds of the rugby club where my brother and nephew play and dad is part of helping out and taking hundreds of photos for years.Between them they have filled the roundabout opposite the club with daffodil bulbs as a memorial to him.I think it is lovely and he is hoping to see them flower.
All lovely things that are a distraction from all the medical stuff of the last few years.xx

Thank you all.Dad has had so many genuine tributes to him form the rugby club and our family has too it has been touching.All saying what a great man he was and a true gentleman.
I helped Mum choose some lovely clothes for the funeral.
It didn't sink in with me then I saw pictures of when he was a well man and I found that emotional.
Our task is to look after Mum who has lost her best friend of 53 years.
Dad was a keen gardener so we will make the front garden pristine for his final journey as he hasn't been home for 7 weeks.
I hope my 5 year lost posts will inspire someone who is diagnosed with this rare type.Dad had adenocarcinoma to along with the small cell.
I hope I haven't upset anyone with my frank posts either.:(
Love to you all Paula xxxx

I haven't logged into this site for months but for some reason today I just thought I should. Yours was the first thread I looked at. We shared so many ups and downs and chatted so much over the years I felt priviliged but very sad to have shared the journeys we made.

My hearfelt condolences to you and your family. You are a very special daughter.

Your Dad's final journey sounds beautiful, a wonderful life celebrated. I bet the front garden to start that journey did him proud too.

Sending you my warmest wishes for the future

xxx

Mo

Paula, I was just sitting here imagining what an achievement it is to share your life with someone for 50 years - I will be 68 when we have our golden wedding but i think that someone will have to give me a medal for putting up with him that long - he of course says that only a saint could put up with me. Your mum and dad seem so strong in each other's care - a gift that not everyone is blessed with. I guess he is allowed to be grumpy when the treatment plan is being messed up and causing uncertainty.
My love to you all x

I just wanted to send my love and best wishes at this difficult time.

I'm saddened everyday hearing about people's actions that don't seem have an ounce of compassion for others but then I realise there are far more good and kind people than those.

Steve x

Dear Paula,
Thank you so much.... your words mean a lot to me. I have so much support from you guys,just reading your warm replies, thank you to all of you.
Paula, when you tell what you dad had to eat today- it breaks my heart! I know what you mean. Watch your loved one going down- and all the sudden - he (she) had a good meal!!!!! It makes us sooo happy!
Paula, enjoy every moment with your dad, every minute! That's what I try to do!
My husband lost 40 pounds since July 4th. Being healthy man, 210 lb- went down so fast!
I will pray for your dad, as I always pray for my hubby.
He is on carboplatin and etoposide too. This type of chemo they use for small cell lung cancer too.... And my husband has hormones too.
All I found online- that he might have not even a year to live. I cry and cry and cry- but not in front of him. Thanks God, he is not computer guy and ,probably, don't do as much research as I do... Well may be he knows too and just not to show it to me. What's a wonderful man he is! Cares about me even being so ill!
We live in small town, North Carolina, doctors are good, but it's not top line cancer center. We, however , get in touch with two top cancer centers in USA, and two doctors we talked to, agreed with treatment protocol. My husband is old school guy and he didn't want to go to trials. We(well, I) found one in USA for small cell prostate cancer- Aurora inhibitor, second phase and stats is not very encouriging.
Type of cancer your dad and my hubby have----- rare!!!!!! I wish I could find the cure. All my research online----- no luck.
Will have his second round of chemo Nov.11th. and radiation after that. His first chemo was relatively good, he is having some neuropathy, which he had before the treatment any way. That's when his primary care doc and his team treated him with neurological disorder, which made his half - disabled, he is walking with walker now. It makes me soo mad! This is America, dude! Not third world country, where they don't have good doctors. What did you do to him???!!!!
He was so independent, was running his own business and now----- he is my baby, I help him bath, dress, cary him around. Hard on me but ten times harder on him. My poor husband, he is great man, his spirit is up, and he is going to beat the cancer!
Hey guys, sorry if my English too American for your British:))) That's all I know. I am Russian girl, lucky enough to meet this wonderful American man, fall in love, marry, learn American English---- and ---- boom, that beast hit him---- CANCER! I had four wonderful years with him! And love him so much. I just don't know how to help him.
Let's stay strong, Paula. Pray for our loved ones.
And thank you so much for supporting me.
I don't have much help, even though my husband's sons live next door- they have they own lifes, young boys, just got married, I understand- but----------- IT's YOUR FATHER!!!! The best father I've ever seen, especially comparing to my ex and my own father, he deserves better for all he did for them. WELL, God will judge them, not me.
Thank you guys! All I need just warm words and some support.

But ideally those comments and updates need to be on torebh's thread rather than this one. I am sure nobody would want to cause any distress to cookiegirl by keeping her thread live. She hasn't logged on for many months but it is possible that she receives an e-mail alert every time one of us posts anything :-(

Dad can't swallow now.He is almost comatose.The gurgling from the secretions in his chest is difficult to hear.We have all visited him now and the nurses are being fantastic with him and us.
Goodnight for now and love to all on here Paula xx

Dear Paula , so sad for you all and your loss. Sending strength for the weeks ahead. I've read every one of your posts and can just imagine what a lovely , caring , strong devoted person you are. I just know your dad must have loved you so dearly and been so proud of you. Hope you can find that extra inch to be there for mum. It's been so brave of you to share. Please take care of yourself xx

Thank you all so much especially Devenmaid who has followed Dads story for years.The rugby club are honouring Dad with a minutess silence before Saturdays game.This is a rare thing for them to do.
I feel OK and hope this will remain the case although I'm prepared for some sadness that will hit me.
On a positive note Dad had years longer than prognosis even since 2015 when he was Given a few months:)
Mums doing OK really and I know the funeral is going to be emotional with all the family there.
Dad was loved by all that knew him.A kind considerate man.
I hope his long journey gives hope to others diagnosed with this rare type.xx Paula
I hope we can raise money for prostate cancer UK on mums just giving page too.

Thank you, and thinking of you, Paula. Wishing you, your mum and family peace and hoping your memories of times with your dad are comforting, albeit bittersweet, take care, Janet, x

Thanks ladies yes i hope Dad gives others hope that are diagnosed with this rare form.Sadly the other peoples Dads and husbands didnt respond so well to treatment.He and Mum who was diagnosed with stage 4 cancer (rare type) in 2007 !! are selling prostate cancer keyrings and spreading the word.Treatment has come on leaps and bounds and we are very lucky to have them both here,Paula :)

Paula

These are the most difficult times. As we look forward to our later years, we all hope for the best quality of life, but do not want to be a burden for our offspring. Respect your father's wishes, and give him all the love and support you can.

Thinking of you through what will be a rough period, but also remember all the good times you shared. Look after yourself and the rest of your family. I hope they will also look after you.

Paul

Congratulations to your Mum and Dad Paula, not only for all they have been through and for what you have been through . I know it has been tough but 49 years together , Wow A HUGE CONGRATULATIONS to you all . X

BFN

JULIE X

oh thank you all.Dads parents made 52 yrs wed too :) The fact they are both still here after one yr prognosis each is amazing.dad has been struggling lately but this is the 4th chemo between them and it does takes its toll.dad is at his friends funeral fri another lovely man lost to prostate cancer.
Lets hope they make 50 yrs wed then they can have all the fostered and adopted kids around them and their 3 and 13 grandkids. love to all on this site Heres hoping Dads 3 scans are ok :)

just to let you know that I am thinking of you all, your Dad is in the best possible place right now he needs medical care on hand to help him through this.

xx

Mo

Just to let you know that I am thinking of Mum and Dad for you Paula , I hope that they can get Dad stabalised and back home soon.

BFN

Julie X

With that spirit in him he should be home soonest and hopefully feeling a lot better. Hugs to you and mum.

Love Allison xxx

your Dad has been putting up a terrific fight against small cell PCa, he is one tough Man. I am sure the love, support and help he gets from you and your Mum, friends and family is a big help.

I hope the next treatment provides more relief

Best wishes

xx

Mo

My heart goes out to you and your family it is so sad when the disease progresses beyond the treatable.

Your Dad is a brave man and he will deal with all that comes with terrific dignity. The hospice team will help all of you as well.

If there is anything you want to ask or talk about please ask away I will do my very best to answer you honestly and with empathy.

You have and continue to be a wonderful and supportive daughter

Bless you for that.

Xx

Mo

Hi Paula,

Just to say I am also thinking of you. You have been a wonderful support to your Dad, keep us updated, remember, we are all here for you,

Fiona. x

sorry to hear your latest news my heart goes out to you and Mum and. Dad.

You have been there for your parents they sound lovely people.

I know how hard this time is for you when you are so close our daughter was the best tonic for her Dad she never treated him any diffrent they both had a wicked sence of humour.

Send Mun and Dad my best wishes I am sure your strengh and love will help you through this as a family.

Will be thinking of you all

Carol x

So sorry to hear your latest news. Thinking of you all at this difficult time.

Steve x

thank you all so much that nearly made me cry just in from a busy day at work and its quite hard to keep my feelings in all day when everyone is worrying about trivia (they are all early 20 s).
To be honest we ve had several more "last xmas or last birthdays" with Mum and now with Dad but this has still hit us quite hard i think the fact is we are never prepared to lose our parents and definately not to see them ill or defeated.
Dads Mum was an active 93 yr old.I just hope the next bit isnt too awful but we will all pull together as there are 5 of us and 13 grandkids thats what happens when you foster and adopt babies lol they have helped alot of youngsters that can be their legacy xx
sorry about your Mum georgina i always see them when im positive with cake or flowers bet they think im hard as nails :)

Paula, sad news that you have been half-expecting and I imagine this will have hit your mum hard ... after all the years she has battled, she probably never considered that she could ever be having to face the prospect of being without her soul mate.

It may be that although a decision has been made that further treatment is not in dad's best interests, he is strong and will be able to have months with you still - maybe the summer warmth will lift him. I know that my father-in-law reached a stage when he got tired and made a decision to let go - but he had some jobs to do first and spent the summer creating happy memories for his family. Sometimes the strength of a soul and spirit cannot be explained by science - look at Old Al's old threads for hope xxx

Hi Paula,
I think it depends on the circumstances in which you are doing these additional hours. If they are simply being processed as overtime, you are going to come to a time soon where you might need to stop the overtime to be with your dad and the employer cannot take action against you if you are fulfilling your contracted hours. On the other hand, if they have given you a temporary contract for the additional hours then you may be obliged to fulfil ... unless there was an opt-out or review built in.

As far as the meetings go, it is quite common for employers have an attendance management policy which includes a manager review meeting at the third absence, regardless of whether those absences are one day or 3 months each. I imagine the policy then says that there are three stages to the attendance process, stage 1 being dealt with by the line manager, stage 2 & 3 being more serious and therefore dealt with by senior managers. Usually stage 2 involves a referral to occupational health or requesting a report from the GP.

They can only dismiss you if they can prove gross misconduct e.g. you worked for someone else while on sick leave. They can discipline you (such as a written warning or final written warning) if you have done something wrong which does not amount to gross misconduct, for example being off sick for more than 5 days and failing to produce a sick note. Many people supporting a relative at the final stages of their life get a sick note from the GP for stress, which protects them from disciplinary action. If you are concerned you can look up your rights in the ACAS handbook here http://www.acas.org.uk/index.aspx?articleid=2179 You could also phone ACAS on 0300 123 1100 for free advice

It is great to have a job that you love, but don't put yourself in a position that you might regret later - your dad will not be around for ever and it is a heavy heart that looks back and says "I wish I had had more time"

I think it must be pretty uncompasssionate place Fiona as somebody there told Paula earlier on that her parents were elderly and were going to die anyway so deal with it!!
Thinking of you Paula and all your family. Enjoy the time you have left as much as you can under the circumstances.

I know work is important to you in the wider scheme of things but you already have a lot on your plate what with your mum and your husband.
If you aren't careful you might not have to ask for time off for your dad, you'll have run yourself into the ground anyway and will need that time.

Best Wishes
Sandra

Your colleague is an unpleasant person, let's hope nothing like this happens to her!

Lovely to hear your sister came to see your dad, life is too short for all of us to hold grudges.

Enjoy every minute

Love Allison xxx

good luck with the job interview

nidge

That's sweet. It's good that dad is catching up with his family.

I'm sure they all take into consideration that dad may get tired but it must be lovely for him to be able to reminisce.

All our very best wishes and love to you all. Have been thinking of you all x

Chris and Elaine

hi paula

just let you u know you are doing great by your family

nidge

FABULOUS

XX

Mo

So good to see such a positive post

Arthur

A weekend you'll remember for a long time. Brilliant.

Paul

A weekend of happy memories. Lovely

I am pleased you have found Pauala's thread you two are indeed in very similar circumstances.

I hope you can support each other on your journey

xx

Mo

Glad dad has picked up a bit Paula and especially glad that you've found a job you like with lovely people.

I hope (I'm sure !) they'll give you a lot of support when the time comes

All the best
Sandra

On the other hand Paula, I love your dad's determination to carry on as normal and it is his spirit that has got him this far. I think there will come a time in the future when you look back at this and you will smile because it reminds you of your dad's guts and strength of character

Sorry to hear that dad Continues to be in pain. On the blue badge, it doesn't need to be him that drives, he just has to be in the car that uses it. My hubby doesn't drive anymore, too many drugs interfering with perception and exhaustion meaning that his reactions are too slow, I always use the badge when he is with me. Definitely get one ASAP.

Lots of love

Allison xxx

Ah that's a shame Paula.

I sincerely hope that the blood transfusion gives your dad a bit of a boost

That's good news Paula.

Hope it continues for you all

Chris and Elaine and Sandra ,Alison Lynne Steve and Mo and all you lovely people (too many to mention)
. Thank you so much for all the support and advice this yr as we continue to help Dad.I hope he gets a bit longer in his present condition and hope his journey is an inspiration to others that even when the cancer has reached the lymph nodes chemo can be effective in this aggressive type.
On an amusing note he bought a real xmas tree with white lights for the garden as they took the fir tree out this summer and turfed over the garden to make it easier for mum to get the grass done when he isnt here and he still is :) This will be a "bonus" xmas not a "last one" xx

Happy New Year

Love Allison xx

Paula that's awesome. I'm delighted for you all. There will be 40 of you physically there and then all of us mentally there with you.
I LOVE a party whoop whoop xx
Chris

So pleased for you Paula. I'll keep everything crossed for all of you. x

hi

after all you and your family have been through this is lovely news, Lots of nurturing, love and caring now with just 5 weeks until the party. You all truly deserve to have the best party ever.

I will be there with you in spirit every step of the way

xxx

Mo

Ahh thank you all it means so much,We havent had any family weddings or parties in yrs,Dad is a real trooper organising it,

Mum is in her element choosing new clothes ha ha,Lots of family photos will be taken and Dad will be in the pics not behind his beloved camera,Best invitation ive had ever :) xx

BFN

Julie X

So pleased to read this Paula - every happy moment gets tucked away in your hearts for safe keeping x

big smile from me

xxx

Mo

Dad has had a great few months getting out and about and welcomed another grandchild too.He is now in hospital with a leg infection.I think the thinning skin and water retention are the cause.He is on a drip and the infection did get a bit worse.I have everything crossed he will be home soon.Love to all on here xx

I think Johsan is right, it would be better if both Lisa and bnelson started their own threads - it might be very upsetting for cookie girl if she suddenly starts getting notifications from the forum when she is probably still grieving.

Well that is wonderful news Cookiegirl, my heart sank when I saw how long it was since you had checked in.

Spring is such a beautiful time, and always filled with hope xxx

Sadly he has been very unwell the last two weeks.I came home from hold to find he had been taken unwell and become exhausted and taking his liquid morphine for pain.Twice he could barely move and thought this is it.....this weekend he was confused and his arms were shaking involuntarily.not eating or hardly drinking.Mon I heard the hospice nurse had said this is what we were expecting.she insisted he saw the doc so the poor man had to travel to the surgery!!! He has an I fe tion which has become borderline sepsis.Today he had more colour and moved around.we sat in the garden.Perhaps this is an infection he can shake perhaps not.I made a minor mistake at work and when I pointed out I had hardly slept for concern over dad I was told why worry when you know what the outcome will be....angry or what.

Day for day. Love to all and thanks for all the support and cheering my father on xx

Fingers crossed that he rallies again Cookie Girl - he has pulled it out of the hat before.

I have got everything crossed that dad can come through this infection , more than most I understand the ups and downs of this disease ( the roller coaster ) at this stage one minute we are up and then we are down with not much warning in between.

Your dad has been remarkable he has fought worse .

Sending you all lots of love .

BFN

Julie X

Hi Paula
Lovely to hear from you as ever , even though tragic circumstances !! I can't advise on your issue but am sending wishes and strength to all of you.

Dads still being treated in hospital Today he gets transferred by ambulance to a cancer specialist hospital for radiotherapy on his spine.They are trying to sort his leaking legs out and the hospital bed has arrived at Mums.
Five whole years since being diagnosed now.Dad is tired but in good spirits.I started a new job today which kept me distracted.
Thank you Julie for all your support xx Paula xx

So sorry about this latest upset cookiegirl. I hope the new job fits in well with your need to support your mum and dad. Thinking of you

Just to let you know I'm thinking of you and your family at this time. I don't feel very good with words at the moment but I just wanted to let you know I care.

Steve x

Arthur

Virtual hugs from me too cookiegirl.

A difficult time for all of you.

My best to you at this difficult time. x

BFN

Julie X

Yes, a cruel disease and stressful for Dad and family. The main thing now is to ensure as far as possible that he is pain free and comfortable. The love and devotion which helps maintain spirits in his case is a given.

We are still in limbo .Thank you Devon maid for replying.Dad has signed a DNR and doesn't want treatment.Palliative nurse thinks he still has more time to live yet. Xx
I. can't see him as this is his request which we respect He will be given pills to help him sleep and improve his mood.
It is all very distressing so I will be glad to go to work today for some light relief which our poor mum can't do.
She can't cope with him at home yet as his legs are so bad and he has bedsores too although the dioreah has stopped now he is off the IV antibiotics.xx thank you all for your continued support.

Thinking of you, Paula, and knowing how hard it is.

When my husband was in a similar position he too didn't want visitors. He asked me to keep them away, and said he didn't want them to see the reality, as he found it difficult to make the effort to talk. I think many men are used to being the 'fixers' in the family and this is beyond fixing. In particular he didn't know what to say to make it better for his mother and daughter.

My brother was similar and didn't want his son to remember him as he was at the end. I know how hard it can be to live through it though, and really feel for you.

Take care of you, Janet, x

He refuses all blood tests.so we don't know what's going on.He doesn't want to know.

Good to hear your dad's spirits have lifted, so important and doesn't matter if it is just the result of medication. I hope the nursing home works out, something as seemingly minor as a shower can make so much difference.

Take care, Janet, xx

:-((
Paula , sending love and hope and strength to you all. I recently helped care for a man dying of prostate cancer and it was pretty damn horrible so I can only imagine what it is like for true family to see it. It does sound like this may be the last stretch I fear. Xx

Your last couple of posts have brought back memories of my Mum's passing. I remember telling Mum it was time to let go. Thinking of you and take care of yourself.

Thanks Chris

I'm sorry to hear your sad news, I hope and pray that you will find peace in the coming days.

Best wishes,

Arthur

Thinking of you.

BFN

Julie X

Please accept my sincere condolences. Thinking of you all at this difficult time.

Thanks Chris

We have set up.a just giving page for prostate cancer UK.Dad would he loved this as he did a charity event for the cause a couple of years ago.xx Paula

I'm so sorry to be reading your sad news Paula,

My condolences to you and your family

Viv
X

Thank you Paula, for sharing dad's last journey with us.

I'm so glad the sun shone for you all, it makes it so much easier to imagine your dad looking down and sending sunshine your way to let you all know he is fine.

XXXXX

BFN

Julie X