Controllable canever!

Hi my name is Selina and I’m August 2018 I was diagnosed with my worst fear. I was back and forward to the doctors with pains in my pelvic are , irregular bleeding and bloating . I was back and forward to the doctors for about 18 months or more & each time was given antibiotics for...... kidney infection , pelvic infection , Uti’s . On assist 20th the pain was so unbearable in my left side my mum took me to a&e and was having a scan for what they thought was kidney stones . Unfortunately the scan revealed my worst fears cervical cancer which had also shown swelling to my lymph node and a shadow to my lung. I was told this was not curable but controllable . My consultant told me to look at it In the same was as some one living with diabetes, you need insulin to keep it under control or copd , inhalers to keep this under control and that’s how my cancer would treated. Some days it’s easy to think about it like that way but when having my second lot of chemo because ct scan showed some changes , again my consultant said it’s ok we will try another chemo to try keep this controlled. I was wondering if any body else is living with cancer in the same way ? Any replies would be really appreciated and maybe help to see I’m not alone in this .

Comments

  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭

    @Selina2010

    Hi Selina,

    I just wanted to welcome you to the community, it is great you have found us and I hope soon, others will come forward who have been in a similar situation to yourself.

    I am so sorry you have had such difficult time for so long prior to diagnosis, my heart does go out to you, you have had so much to contend with.

    There are many here who are living with cancer as a long term thing, undergoing treatment of various kinds to manage it, even though not curable. Although the cancer may be different, there will be a lot of similar thoughts and feelings that anyone diagnosed with cancer goes through.

    You are not alone in this, I hope some of the others will chip in soon. Everyone here is so supportive Selina, you will find a lot of understanding, compassion and encouragement to stay strong, and even when you don't feel strong, we are here to uphold you.

    Where are you now in your treatment plan? Still on chemo?

    Thinking of you and chat soon,

    Lou x

  • Selina2010Selina2010 Posts: 12

    Hi Lou , yea I’m having 6 rounds of Chemo once every three week , I have my third one next Thursday x

  • RobertARobertA Posts: 570 ✭✭✭✭
    edited April 16

    @Selina2010

    Hi Selina

    I am sorry to hear about your cancer diagnosis and the pain you have had to suffer.

    I have advanced and incurable prostate cancer which is controlled through androgen suppression. The cancer has spread beyond my prostate and into surrounding tissues including a lymph node. I have quarterly infusions and blood tests every six months to check that the cancer remains under control.

    As you know, being told you have incurable cancer is devastating to say the least. There is a lot to come to terms with and the news can be a great shock and throw you into confusion. I experienced feelings of anxiety sadness, feeling alone, loss of confidence and control, but it did get easier as the shock wore off and the situation became more real to me. I now live a full and happy life, appreciating the joy of being alive more than ever before.

    I realised, like you, that coping with cancer is a lonely business and I needed to reach out to people who understood what ai was going through. My family and friends were great but they could not step into my shoes and ‘get’ how I was feeling. I was directed to MacMillan Cancer Support who have been brilliant for me and saw me through a tough time, providing me with a counsellor free of charge. I now do some voluntary work with them myself which I enjoy. 

    My wife is a volunteer with Jersey Hospice which has a daycentre with coffee and cake, quiz sessions. craft sessions, yoga, mindfulness, a choir, and weekly discussion groups which I often attend. I wonder if there is one in your area? 

    I also love this community. It is full of courageous, caring and funny people, new friends who don’t mind when you are having a bad day and who celebrate the good ones with you, You are most welcome and I hope you will keep in touch.

    Rob x

    PS. The progress which is being made in the treatment of cancer is amazing and who knows what new treatments will be available in future. x

  • Selina2010Selina2010 Posts: 12

    Thank you Robert for the lovely message. It’s tough at times , I have a really supporting family and couldn’t of got through it without them at all, but liken you say there not in our shoes and sometimes you need that other person to talk to as you feel they understand your emotions be the daily struggles of what comes with this awful disease . I had a point we’re I couldn’t stop thinking negative thoughts , I would look at my daughter and break down in to tears . But she would say to me come on mum we can do this and when you have had chemo look at it as though you drank way to much alcohol the night before and that’s while you feel groggy for a couple of days ... bless her if only it was easy to think that way. I am starting to get out more with my friends and making sure I do something on my good days , I went to our local hospice yesterday to have a raiki massage and I really enjoyed it ( it took me a while to walk through the hospice doors as I was frightened but I did it ) it’s the word palative care that scared me as I automatically thought of no I’m dying but my consultants explained it means an incurable disease that needs medicine to keep it under control , no different to having diabetes were you have insulin to keep it under control . When he explained it that way to me I felt much better . Somedays I’m great other days I feel I could scream and tell the world we’re to go ha ha .

    Selina x

  • RobertARobertA Posts: 570 ✭✭✭✭

    @Selina2010

    Good morning Selina

    What a lovely caring daughter you have.

    Yes, hospice is so much more than just a place for palliative care. Our local one has weekly discussion groups with tea and cake ( its the cake that does it for me). We have a lot of fun too. My wife organises quizzes and I occasionally play the piano. It is very much a place for the living.

    It will get easier you know. You still have the chemo to cope with and that must be tough. Keep in touch

    Rob x

  • Selina2010Selina2010 Posts: 12

    Do you have controllable cancer rob if you don’t mind but me asking x

  • RobertARobertA Posts: 570 ✭✭✭✭
    edited April 17

    @Selina2010

    Hi Selina

    No, of course I don't mind you asking.

    I am on Androgen Deprivation Therapy. Prostate cancer thrives on testosterone which is an androgen, and so my treatment involves the removal of all of the testosterone in my body, which is effectively chemical castration. The trade off is that the treatment stops the cancer from spreading any further.

    I have a quarterly infusion which keeps my testosterone levels virtually at zero and I have six monthly blood tests to confirm that the treatment continues to be effective.

    Androgen Deprivation has side effects not dissimilar to women facing menopause ie fatigue, hot sweats, loss of muscle mass, weight gain, impotence, osteoporosis and depression.

    I have managed to keep my weight under control through improved diet and walking and I use exercise bands to combat the loss of muscle and osteoporosis which has also been effective.  I have also significantly reduced my alcohol intake ☹️and I am actually fitter now than I have been for years.  

    In the early days and months, I struggled with the knowledge that the cancer was incurable and that I would have it for the rest of my life, but I got used to that and I have also coped pretty well with the side effects. In many ways my life is better than before cancer because I no longer worry about the small stuff and concentrate on the fun things in life.

    You are doing all the right things Selina, and once you get through the chemotherapy and start to feel better, you will begin to think less and less about the cancer. Your consultant would not say those reassuring words unless they were true.

    By the way, have a look at the ‘Off Topic’ section where we talk about anything but cancer and have a bit of fun.

    Have a lovely Easter.

    Rob x

  • Selina2010Selina2010 Posts: 12

    Thank you for sharing with me , I can’t wait to be able to not think about what i have . I have learned that the little things I used to stress and worry about are no longer relevant . I will take a look at that page . It’s so nice to have someone To talk to x

  • Selina2010Selina2010 Posts: 12

    We’re do I find the off topic section rob x

  • jacksprat_x1jacksprat_x1 Posts: 162 ✭✭✭

    Hi Selina,

    Welcome to the community. You definitely have come to the right place. I am pleased to have found this group of lovely, amazing and supporting people. You can say what you need to here. A place to find out information and vent your feelings about this awful diagnosis that we all face. We all have different types of cancer but the feeling of devastation that we have when we find we have it is understood by everyone here. I also have a wonderful family and group of friends but the only ones who can really get it are the ones who are living with it. It’s so hard to try and stay strong and be positive for our families as they are so scared for us on this journey too.

    I am so sorry to learn than your cancer is incurable but it is good that it is controllable. It must have been such a shock for you and your family, but your doctors have been so good in explaining how to live with the disease. They are wonderful people aren’t they? I’m also pleased you got some pleasure from the Reiki at the hospice. We hear from Rob and his wife Mary what fun can be had at The Hospices. I understand that instead of places to be frightened of they are full of hope and positivity!

    It’s lovely to have the gift of a daughter isn’t it? Yours sounds as if she is so supportive and loving to you. How old is she Selina? Mine is a wonderful support to me, always has been as well as my lovely son. They have both given my husband and I so much support and love to help us through our difficult times.

    I had an emergency bowel operation due to colon cancer in mid December. My cancer broke through the bowel wall and caused an abcess so I was very lucky to come through it with the skill of my surgeon. He removed part of the bowel and made a colostomy so that I now have a bag on my stomach, which he hopes will be reversed. I am having Chemo every other week for 6 months. I’m 30% through it so far! It leaves you so tired and food tastes awful but but hopefully the symptoms will pass soon. I only get a short time to recover before it all starts again. I try to enjoy the normal things whilst I’m able and rest on the bad days.

    The good thing about the Off Topic is that we can chat or laugh about what we have been up to and park the cancer outside the door for a minute, although I know it’s not always far away!

    If you scroll down you will find it in Categories just under “Whats on your mind today?” Also there is a place at the top of the page where you can private message too. Quite handy if you want to say something to an individual without broadcasting to everyone!

    Hope that helps Selina. Have a little look at our posts see what we natter about! Take care of yourself and have a lovely an Easter as you can. I wish you well.

    Lv Jackie x🙋‍♀️🐣🐥

  • Selina2010Selina2010 Posts: 12

    Hi Jackie thank you for the lovely message , my daughter is 18 and I am so blessed at how positives and strong she is for me and her . She’s pushed me on the days I feel enough is enough . I had radiotherapy only a few weeks ago too then few days later was started on chemo , it’s is by far to date the worst week of my life but Chloe my daughter helped me a great deal , she would say mum you feel groggy because you drank to much alcohol the night before and you’re tummy hurts because you accidentally burned your self with the iron. She’s such a star . I’m really glad I found this site it makes you begin to understand that you’re not on your own. I hopefully you have a lovely easter too and the bonus is I think we might just get some nice weather for a change xx😘

  • jacksprat_x1jacksprat_x1 Posts: 162 ✭✭✭

    Good morning Selina. What a beautiful day! Sun is so good for the soul!

    I’m glad your daughter Chloe, lovely name by the way, is of an age to help you and support you. Must be doubly hard when the children are smaller with all their needs. My daughter is Amber and my son in James they are 38 and 34. Both have have a boy and a girl each lovely! We are all close but until recently I haven’t been able to visit because they had all the usual bugs nursery children get! My bloods were down so we had to keep our distance. this has been hard for me because I used to work part time and look after the children quite a bit while they went to work so it’s been difficult.

    My chemo has been hard going this time. Lots of side effects and problems with my low Neutraphils which mean can’t mix too much with people at mo. Mind you all I want to do is this week! It will get better for both of us soon I’m sure.

    I hope you enjoy your Easter Break and just be very kind to yourself!

    Take care Selina.

    Lv Jackie xx 🐣

  • Grimmer69Grimmer69 Posts: 16

    Hi Selina

    Sorry to hear of your diagnosis it's sooo bloody hard isn't it to take it all in. I'm in the same boat love mine is secondary breast cancer which as spread to lungs and bones. I was diagnosed last October and I'm on immunotherapy 2 tablets everyday and 2 injections every month very little side effects and honestly feeling great.It definitely does get easier as time goes on as you say you don't sweat the little things anymore and actually alot more chilled than I used to be don't gete wrong I have bad days when I want it all to disappear but hey ho I always stay positive and live in hope. Glad you have alot of support I'm very independent and stubborn and sometimes find it hard to accept help but I'm trying. It would be lovely to stay in touch as they say it's good to talk❤️❤️❤️❤️❤️

  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭

    @Selina2010 @jacksprat_x1 @RobertA

    Good afternoon you wonderful friends,

    Selina, your daughter sounds wonderful, how precious to have her with you encouraging you every step of the way. Isn't it amazing how strong and resilient our children are when faced with the worst news any parent has to give. I have two daughters, they are 18 and 19 now, even with the heartbreak as a family we shared, they were just fantastic. My heart broke for them having to endure what was happening, at times it was very hard for them too, but they were always willing to fight with me. You must be so proud of Chloe, she is a must be a real strength to you, especially in those darker moments. I hope that in these Easter holidays if she is still in education, you are able to have some special times together where cancer doesn't take centre stage. Both mine are still in full-time education( one at uni), so revising is the pressure here, which is horrible.

    I can only echo what Rob and Jackie have both beautifully written, I know holidays like Christmas and Easter are generally busy times with families etc, when you are dealing with cancer, these times can be harder to get through. The warmer weather has arrived, which is lovely, hopefully you have it too.

    Wishing you a peaceful, relaxed as much as possible weekend.

    Lou x

  • Selina2010Selina2010 Posts: 12

    Hi grimmer69 thank you doen your lovely message , I’m very independent to and tried to be strong headed but it’s all got a bit much so I accepted the support and I’m so glad I did because it helped ease the pressure slightly . It would be great to stay in touch I love chatting but on here now it makes me feel that’s much better xx

  • RobertARobertA Posts: 570 ✭✭✭✭
    edited April 18

    @Selina2010 @jacksprat_x1 @Grimmer69 @Sunshinedaff

    Good evening you lovely lovely people.

    If there is anything good about cancer, it is all of the lovely selfless and caring friends I have made through having it. Have a wonderful Easter and thank you all so much.

    Rob 😘😘😘😘

  • Selina2010Selina2010 Posts: 12

    I’m a struggling after this chemo, I feel terrible😢😢

  • RobertARobertA Posts: 570 ✭✭✭✭

    @Selina2010

    Hi Selina

    So sorry to hear that you are struggling after your latest round of chemo. I have not had it but I know from other people posting how very tough it is.

    I am so pleased you are keeping in touch. Please hang in, you will get through this. We are here to listen and support you.

    Rob x

  • Selina2010Selina2010 Posts: 12

    Hey how is everyone keeping x

  • jacksprat_x1jacksprat_x1 Posts: 162 ✭✭✭

    Hi Selina,

    Nice to hear from you. I’m doing well this week following chemo last Friday. The last round was terrible. I think it was to do with low Neutraphils bloods and infection with hospital stay 3 days. They boosted my bone marrow with injections. They stopped platinum injections as they were affecting my Liver and giving me electric shocks in My hands feet jaw and throat at times. This time round I feel very good. Able to function and go out and about. Very lucky girl!

    How are you coping Selina on this journey? When is your next chemo?

    Keep in touch. I do hope you and your daughter Chloe are ok.

    Take care and hope you enjoying the sunshine.

    Luv Jackie xx 🙋‍♀️

  • RobertARobertA Posts: 570 ✭✭✭✭

    @Selina2010

    Hi Selina

    Lovely to hear from you. I am doing well thanks. I do hope that you are feeling better than you were at the time of your previous post. You must be more than halfway through your chemo now. Say ‘Hello’ to Chloe, she sounds like a wonderful daughter to have beside you,

    Rob x

  • RobertARobertA Posts: 570 ✭✭✭✭

    @jacksprat_x1

    Evening Jackie

    Great to have you posting again. Good to hear that you are feeling so much better. All the best to Norm. I hope he is feeling OK too and I am sure he will be even better after his stent procedure. Look forward to hearing that you will both soon be making music again.

    Rob x

  • Selina2010Selina2010 Posts: 12

    hi I have chemo number 4 of 6 tomorrow, I am dreading it as the past chemos have totally floored me. I had ct scan on Monday ,now it’s just waiting on the results. I’m glad everyone is feeling better x

  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭

    @Selina2010

    Good morning Selina,

    Thinking of you today as you go for chemo no 4. You are half way through! That is so good, you know we are all cheering you on, you will get through this.

    Stay strong, keep holding on.

    🤗

    Lou x

  • Selina2010Selina2010 Posts: 12

    hi everyone, I’m fine feeling nirmal again after 4th chemo. I had my ct scan 3 Days before and got the results back on chemo day. MY consultant was over the moon to tell me that all areas had shrank, I was so happy I jumped up and hugged him. The problem I’m here having now is pain and pressure when passing urine which sometimes looks like cola, could this be down to radio and chemo? I’m worrying things have changed since my scan last week. Xx

  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭

    @Selina2010

    Hi Selina,

    It is so good to hear you are feeling more like your normal self after this last round of chemo.

    To hear the news the chemo is being effective in treating the tumours is really wonderful and hopeful . I think our Drs do celebrate with us when they see a difference from the original diagnosis. It sounds as if your consultant is also very lovely.

    I am sorry to hear that you are experiencing pain now, I would suggest you contact your Dr or chemo ward nurses and let them know what is going on and I am sure they will be able to advise you. Meanwhile do you have any pain relief that would help?

    I hope things ease up for you soon.

    🤗

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 162 ✭✭✭

    Hi Selina,

    I am a so pleased your your chemo was easier this time. Mine too last Friday. I’m 6 out of 13 now!

    I bet they were pleased with you and your progress.

    Sorry to hear of your pain. Hopefully they can get your pain and other symptoms under control. Let them know what’s going on.

    Hope you you have a good week.

    Luv Jackie x🙋‍♀️

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