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Hello I am new here

serfuerteserfuerte Posts: 7
edited April 2020 in Carers Corner

My husband has locally advanced prostate cancer. Our prognosis is 5 years and we are now in our third year.

we live in Hertfordshire. We have 10 grandchildren and another on the way. Family is very important to us.

pauls PSA on diagnosis was 167 and rose to 190. He is Gleason 7, 4+3, stage t3a. He has had 37 sessions of radiotherapy and 18 months of hormone treatment. He also has peripheral neuropathy, which causes great pain, essential tremor which is getting worse and spinal cord myelopathy. He stays as cheerful as he can. Paul gets so tired and lethargic, it is difficult to do anything on a daily basis.

i also have chronic pain from adhesion related disorder, so life is interesting for us.

Comments

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    Hi @serfuerte ,

    A very warm welcome to you here, I hope you find it a place of support, encouragement and friendship.

    Thank you for sharing with us, I am sorry you and your husband have so much to contend with. I can understand how difficult it must be for you both. It must also be very hard for you to see your husband suffering, loved ones go through so much. A cancer diagnosis affects the whole family, it is just so hard.

    It is wonderful that you have so many grandchildren, I am sure they keep you busy and it is great you have wonderful family around you.

    I know @RobertA , Rob is living with prostate cancer, I am sure there are others here who also have a similar diagnosis to your husband, and it is great that you are here.

    Please come and chat anytime, there is always someone around!

    Chat soon,

    Lou x

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    edited March 2019

    Hi @serfuerte

    Wow, you and your husband Paul have a lot to contend with and it is good to know that you have a lovely big family for support.

    I have no knowledge of Paul’s other conditions, but I also have Prostate Cancer. I am a Gleason 9, 5+4, stage t3b N1. I had 20 sessions of radiotherapy and so far 2.5 years of hormone treatment. My prognosis is also 5 years as from 2.5 years ago.

    I had a PSA blood test last month and the reading is still virtually zero - so far so good. 😀. I think that these prognoses are sometimes a bit misleading, cautious if you like. Whilst the hormone treatment (ADT) does have a number of side effects including lethargy and tiredness, it think it can continue to be effective for several years. Even when it becomes castrate resistant (stops working) and the cancer starts to progress again, there is another hormone therapy drug called abiraterone which is known as a second line therapy which the experts told me, can work when the first line therapy becomes ineffective. Apparently, it is very expensive which is why it is used as a second line rather than first line therapy.

    If you have a look under the category ‘Coping with Treatments and Side Effects’ there is a section by ‘Untire’ which should prove helpful. Also, if you are interested, I have written a blog about my prostate cancer journey in ‘Stories and Info’.

    I am pleased that you have found our Community. We are a very friendly group and we can tell each other whatever is on our minds and know we will be supported and not judged.

    Please keep in touch and I will be most happy to help in whatever way possible.

    Rob x

  • serfuerteserfuerte Posts: 7

    Thank you so much Rob for the welcome and the information. I will certainly look at your blog and keep in touch.

    Sandra x

  • serfuerteserfuerte Posts: 7

    Thank you Lou. I am looking forward to interacting with the group.

    sandra x

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    Hi, Welcome Sandra,

    I am so sorry that your husband Paul and yourself are going through such a tough time. The grandchildren must be a great comfort to you. I know my four are to me bless them.

    It’s a great comfort to be part of this community.

    All though my cancer is different to the one your facing, I had grade 3 cancer removed with a temporary cololostomy I hope, and am having a course of chemo for 6 months. But the feelings about having to undertake this journey can be appreciated by us all in this situation. You don’t really get it till you’ve been involved.

    Rob has put some good info on his story about Prostate c. I’m sure it will be a help.

    Take care both of you and hope to read your posts soon.

    Lv Jackie x

  • serfuerteserfuerte Posts: 7

    Hi Jackie

    thank you for the welcome. I feel at home already. So pleased I found this site. I am sure you will all be of great help to us and give us comfort along the way.

    sandra x

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    Good morning Sandra, You are most welcome.

    You not sleeping too? It’s the one thing we need to get through the days too! I hope it helps to know your not on your own. I hope you can relax and get back a little shuteye. Keep calm and take one day at a time.

    Take care.

    Jackie xx

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    @serfuerte , @jacksprat_x1 ,

    Good morning Sandra and Jackie, you are both up real early, or not sleeping. Being awake in the early hours is the worst I find, that’s usually the time my mind decides to go nuts, shutting it off again takes some doing.

    Anyway, I hope you have both been able to drop off again and get some rest.

    Speak later,

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    @Sunshinedaff @serfuerte

    Good morning,

    Not such a good night Lou, about 4 hrs but at least something. I try not to drop off during the day.

    I know what’s causing it today! We are at the hospital again today, 10th time this month! But not for me this time.

    We had an honesty moment about 2 weeks ago and when I finished with my fears poor Norman said well whilst we are doing this, I have something to tell you. Since Nov 2018 I have been struggling with chest pain and breathing. I said why didn’t you tell me before? We need to get you the Doc today then. Our Doctor was fantastic. Appt booked at hospital at chest pain clinict and we are off to see what lies ahead. Apparently he can’t walk the dog without getting chest tightness and pain down both arms! Shortage of breath and pain in neck. Angina? Well we will see. I knew he was not right, lots of puffing and panting and tiredness, and has borne the brunt of being a 12hr shift man and at first after my surgery on Dec 15th full time career for a while. He has always been an active team member at home bless him. He is not overweight, a vegetarian, looks after himself and keeps fit. Turned 60 Xmas day. Mum in law has angina so perhaps genetics is at play here, but she is active like him still and is 86 years old and walks out and has many clubs and hobbies! That gives me hope!

    Norman is hoping it’s Just Stress! Bless him there’s been plenty of that too!

    Will let you you further. Life can be so trying but we are both getting through this together.

    Onwards and upwards!

    Sorry to start the day with this!

    I hope that you were not affected by Gareth too much Lou. Hope the fences stayed upright! How did you feel after your swim? Have a great day all. Bless you all.

    Lv Jackie xx

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    @jacksprat_x1

    Hi Jackie,

    Oh, I am so sorry to hear this. I am so glad Norman told you though, and it is great that the Dr has moved swiftly to get him seen.

    Our lovely husband's and wives/partners have to deal with so much after we are diagnosed, it's no one's fault, it's just what happens. As you say, you have to work through it together. You are both strong together. You must try not to worry, I know that will be hard, but it won't help you.

    I will be thinking of you today, let me know how you get on.

    Bit of neck pain today, but on the meds, I am meeting a friend this morning, which will be nice.

    Chat to you later,

    Lou xx

  • serfuerteserfuerte Posts: 7

    Hi Lou and Jackie

    yes, the 3 a.m. curse. I have been overdoing things lately. Decided to spring clean and seem to have made even more mess. I do out one cupboard then decide the contents should go somewhere else ha ha. This has resulted in me having horrible pain in my abdomen from my adhesions, hence the 3 a.m. start. I am resting in bed and leaving the mess for now.

    paul is in bed next to me, he is feeling rough today so leaving him to rest for a while.

    off to visit my brother in law this afternoon, he has had cancer for 5 years and has just about every organ taken out, shaved or ablated. He has finally come to the end now and I would like to see him one last time. My sister and I are close and I feel for her so very much. She also has a lovely family who are very supportive. Bless us all.

    Jackie, I can almost understand your Norman not telling you about the chest pain, it’s just one thing after another. I expect he just didn’t want to deal with another thing. Good luck.

    well, better get myself going. Try and have a good day ladies.

    sandra xx

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭

    @jacksprat_x1

    Good afternoon Jackie. I do hope that Norman's diagnosis is not serious. He sounds like a really lovely and selfless man. What a good thing he decided to open up to you.

    @serfuerte

    Hi Sandra

    So sorry to hear about your brother in law. Your sister will need you and the rest of the family around her. You have so much on your plate already and I am pleased that you feel able to share with us.

    @Sunshinedaff

    You are so right. This cancer thing affects our loved ones too and it is humbling to hear so many stories of loving and caring partners. I remember having an honesty chat with Mary a couple of years ago. I had seriously underestimated the effect that my diagnosis had on her, mainly because she kept her fears to herself and did not want to add to my worries.

    I am on my way to Macmillan Cancer Support in an hour or so. It is Prostate Cancer Week in Jersey. Hoping to hear some good news from Jackie when I get home this evening.

    Rob xxx

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    @Sunshinedaff

    @RobertA

    @serfuerte


    Hi all,

    Thank you all for your kind comments and support. Just a quick update.

    We had a bit of good luck from the Windy conditions today! The River Orwell Bridge was closed and traffic chaos reined, which meant a lot of hospital doctors couldn’t get in on time and we ended up seeing a Heart Consultant instead of Heart Nurse. He believes Norman could have Angina. He is to have an Echocardiogram and Angiogram to see if he needs stents or a bypass! He has been given meds to keep things under control until they know what’s going on, so really it’s been a good day in that anything untoward may have been averted! He has been told to take it easy. This is going to be interesting but we are so fortunate to have received the best of the dear old NHS again! Someone is watching over us!


    Dear Sandra,

    I am so sorry to hear about your dear brother in law. So sad that both of your families are going through these tough times. So glad you have a good family network. Take care bless you all.

    Lv Jackie

    (in bed electric blanket on! Very sleepy now!)

    i will return! 😂🙋‍♀️🛏💤

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    @serfuerte ,

    Hi Sandra, I am so sorry to hear about your brother-in-law. It is so sad for your family, with everything else you are dealing with. I hope you were able to spend some precious time with them both this afternoon.

    I understand about the spring cleaning, I have been sorting kitchen cupboards!!! But not good you have overdone it, I do hope the pain eases soon.

    Hope your evening is peaceful.

    Lou x

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    @jacksprat_x1 ,

    Hi Jackie,

    Glad to hear Norman was seen by a specialist today, that is good news. You were in the right place at the right time. Definitely, you are being watched over!

    You will both have to tell each other to ease up, bless you both. I think when we have times like these we do find out a lot of stuff and ‘to do lists’ are not quite as important as we think they are.

    I hope you both have a good restful evening, Jackie, I hope you are not up tonight. Good old ‘new’electric blanket!

    Lou xx

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    @Sunshinedaff

    Hi Lou,

    Yes you are quite right Lou, we both need to go more with the flow now. This illness thing has its own agenda!

    My son in law, who works in insurance and has dealt with sickness and injury claims, brought a subject up that was difficult today. Norm works as a driver on The Dock here and had to be persuaded to tell his employer he is being investigated for heart disease as he could be breaching his employment terms if he doesn’t tell them. This was a bit of a shock to him. Now we have the worry of employment issues as well as everything else. Talk about never rains but pours! I’m sure they will deal with it fairly and he will be fine in the long run but worrying issue where income is concerned.

    I got up for tea and am back to bed soon hopefully to get some more sleep. I hope you all have restful night sleep tonight.

    Lets see what tomorrow brings.

    Goodnight Peeps!

    Lv Jackie x

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭

    @jacksprat_x1

    Hope you have had some good news about Norman. I am sure his work will deal with the situation fairly but it is another worry to add.

    Great to hear good things about the NHS. We are only ever told about the bad stuff. Mary and I are planning to return to the UK after many years in Jersey so that is comforting.

    Sleep well

    Rob x

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    @Roberta71

    Hi Rob,

    Poor Norman was concerned in case it snowballed into something and wasn’t able to carry on at work. He’s worked at the same place , a dock, for 38 years which is good going these days, following 5 years in the RAF in his 20’s. They have a medical centre there so it has been noted by The Nurse there. She put his mind at rest about his future treatment so that was reassuring.

    We certainly can attest to the great service and care in our local Hospital in Ipswich. They are filled with wonderful caring people. I guess you are thinking of returning due to your Radiotheraphy needs Rob? I was surprised you had to come to Addenbrookes for your treatment. That is quite a journey to undertake. I hope your plans go well for the forthcoming move.

    Have you any musical wishes to perform today Rob? I expect Norm will have the drums and harmonica out tomorrow !

    Take care

    Lv Jackie🥁🎹🎼🙋‍♀️X

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭

    @jacksprat_x1 ,

    Good morning Jackie,

    I am so glad Norman's work place have been so helpful to him. That must put both your minds at rest. Telling them was the right thing to do. Norman's length of service is amazing,

    Quiet day for you again today?

    Just saw your other post, will switch over there.

    Lou xx

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭

    @jacksprat_x1

    Hi Jackie

    Sorry for the delay in replying. I have been pretty busy helping out with MacMillan ~ it is Prostate Awareness Week.

    Great to hear about Norman’s work place. After all those years of faithful service, it is the least he deserves. Now he just needs to get better.

    Thanks for your best wishes for our future move. I can't have any more radiotherapy or surgery so I am on hormone therapy designed to prevent the cancer from spreading. It is working well at the moment, but I get very tired and have other side effects which are a nuisance. We have no family in Jersey and we have to consider the future. We have reluctantly decided to go to Cheshire where Mary has five lovely siblings, and nephews and nieces who want to keep an eye on us. We will miss Jersey, but having the family around will be fun.

    I am feeling a bit classical at the moment and I am working on the music from ‘Ladies in Lavender’. I heard the music for the first time last week and loved it. Great news that Norman feels up to the drums and harmonica. I saw the great Larry Adler when I was young and tried the harmonica myself. Sadly, I don't have perfect pitch and realised that I should stick to keyboards where that does not matter.

    Rob 🥁🎹🎤🎼 xx

  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭

    @RobertA

    I’m pleased you have been keeping busy with the MacMillan Prostate Cancer Awareness week. You and Mary are such an asset to them.

    Yes it was relief about Normans work. He has earned it!

    Moving to your family in Cheshire sounds like it’s going to be great fun. You will have a ready made audience to play too!

    I had to visit A&E today. Was a water infection. Once again Nhs comes up trumps! Antibiotics, saline and home to bed! Listening to crazy Lisa Tarbuck at the moment.

    I will listen out for The Lavender Ladies.

    Have a peaceful evening.

    Lv Jackie xx

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