Just over a year ago now, I finally spoke to my GP about the few times I had noticed blood in my urine and that became the start of a life transforming whirlwind. I quickly got booked in for all the scans and tests then I had the first of (So far) 3 bladder ops. The first to remove a big tumour was Oct 2018, followed by the hormone therapy (which was botched, I ended up on 5 months of tablets instead of 4 weeks, then the Radiotherapy on my prostate had to be halted to have another op to remove more clusters in my bladder. This was in Feb and then I underwent the 22 session Radiotherapy only to discover I needed yet another Bladder op and then was told by the surgeon that he had to remove nodules that had not shown themselves before and to expect an on-going follow-up every three months. Don't know what more to say really but this latest diagnosis has really knocked me. Before this news, I was going along thinking the next treatment would be the last. I never, ever expected to be told: "Its going to be on-going". The operations and all the procedures with it are bearable. The catheterising ISNT. The first and the last were excruciatingly painful. In fact, I had to call the district nurse because I was in agony. Blood clots had blocked it and I really don't want to go through that pain ever again and I am thinking of refusing to be cathetered. It was that bad. Anyway, that's been the main focus of my past 12 months. Hi everyone!
Welcome to the community, I am really so sorry to hear of everything you have gone through and now even more treatments ahead of you without an end in sight. It truly sounds horrendous, you have endured a lot of suffering.
Are you able to talk with your oncologist more or nursing team about how terrible the catheterising process is? Is there anything else that can be done to help that process?
I know Rob, @RobertA , and others here will understand more about the experiences you have gone through. I am sure you will be able to have ‘like-minded’ chats, knowing people actually ‘get’ what you are talking about. All of us will understand completely about the impact cancer has caused. It turns your life around, inside out, upside down. You have spent the last 12 months focusing on physically getting through operations, treatments, now to find you need more is a tough blow. It is really tough mentally and emotionally dealing with cancer, I think lots of us parked that aspect while concentrating on the physical stuff going on.
You are always welcome to come here and chat, vent, rage, whatever it is. I hope you will find help and support whenever you need it, everyone is very friendly, aiming to help each other along at whatever stage we are at.
My situation is different inasmuch as I have advanced and aggressive prostate cancer though the cancer has moved the other way and has not invaded my bladder. I have been through the radiotherapy you describe and I am on long term hormone therapy, via infusion to keep the cancer under control.
I guess from what you say, that you have/ have had bladder cancer which has spread to your prostate, or maybe it is prostate cancer which has invaded your bladder.
I get completely, the discomfort and distress which can be caused by the catheterising, especially when it gets blocked and I feel for you. Unfortunately, the point of the catheter is often to help wash the blood clots and debris from your bladder following surgery and I would in all honesty discuss the risks with the specialist before refusing the procedure.
I too, have quarterly follow ups and blood tests and in truth, I have got used to them and I know that they are helping to keep me safe. I sincerely hope that you will find going forward, that the follow up checks are just that and not an expectation that the cancer will return.
As Lou said, dealing with cancer is tough both physically and mentally and I rely a lot on the lovely people in this community where I can chat and moan with people who understand and care.
I do hope you will keep in touch and let us know how you are getting on.
Just found this site today.
My partner has stage 3 prostate cancer. My sister in law has stage 3 breast cancer. My mum in law has breast cancer and has just had a breast removed. My own mum had breast cancer and is 10 years cancer free after a mastectomy.
I also have a few friends going through cancer treatment.
I want to be able to support my partner in the best way possible and thats why I have joined here.
Thank you oxoxox
Welcome to our lovely community, I am so glad you found us.
I am so sorry to hear about your partner's diagnosis, and to hear about your other relatives also. It is tragic when cancer seems to hit families multiple times and is devastating for everyone. I understand about that only too well.
There are others here with the same cancer as your partner, I am sure they will have some insight for you too. Is your partner undergoing any treatment at the moment?
I know there is so much to take in when the diagnosis is first given, so much information to absorb and understand. It is very distressing for you too, to see your partner going through this. We are here for you too, to support you as well.
If you have any questions, concerns, etc about anything, please feel free to voice them here. Everyone here is very friendly, and will be more than happy to chat at any time.
Have a look at some of the other sections on Live Better with, there are lots of expert guides, and really helpful information on a variety of things. These may be very useful for you in supporting your partner.
I look forward to chatting with you soon,
Oh my goodness, your family are going through a lot and it must be very hard for you too.
I was diagnosed with stage 3N prostate cancer three years ago. I was given a Gleason score of 9 (5+4) which is an aggressive version. My treatment has involved radiotherapy and ADT and these treatments have to date, been effective in preventing the cancer from spreading.
I work with a prostate cancer group at MacMillan and I do get to know a little about the experiences of other members who are also being treated. I personally found that chatting with others who have been through the treatments helped me immensely and if you and/or your partner would like to chat with me, I will be delighted to do that. I know that though the treatments are usually effective, there are also physical and mental side effects to manage. You can contact me privately if you prefer.
Welcome to our lovely community, I am so pleased that you have found us.
Hi! Just found this forum and thought I'd better introduce myself.
My cancer journey started in Dec 2016, when my husband was diagnosed with bowl cancer. He'd lost almost half his body weight before diagnosis, so was in hospital for a total of 12 weeks. Then in Jan 2018 I was told I had breast cancer, so as well as being the carer for my husband, taking him for appointments etc, I became the patient too. I had my mastectomy in Aug 2018 followed by 6 chemo sessions and was told I would also need radiotherapy. However 4 days before that started my husband died. After careful thought I went ahead with my radiotherapy as planned.
Then following six months of Macmillan counselling I told my surgeon that I wanted my other breast removed to become totally flat. That operation happened last Nov and two weeks later I went on a coach trip to Christmas markets in Holland and Germany! Surgeon told me that the second breast had no evidence of cancer, so I am now just on the review appointments trail. However I am also on the Add Aspirin Trial, so it does mean extra check ups! But nothing like the 300+ appointments my husband and I had between us in 2018/19!
Hello again! I replied to you on the craft chat, but thought I'd say hi here too! 😄
It is impressive you went travelling two weeks post-surgery! I don't think I could do that! Lovely to visit Holland and Germany though.
I wish my surgeon had agreed to remove my other breast too. I did ask but was told no. Perhaps I should have been more insistent.
I haven't heard of the trial you mentioned, what is that about?
I hope you have a good day, chat again soon.
Thanks for the warm welcome(s). My coach trip was agreed by the surgeon as I told him that once I was on the coach I wouldn't have to lift a finger!! I told my counsellor that I needed the other breast removed and we spent a lot of time discussing my feelings. Then when the BC nurse said I needed a report from him to show the surgeon, I knew I was ok. Counsellor emailed his report and the next day the nurse rang to say the surgeon had agreed and I was put on the waiting list! He's even agreed to look again at the original side to do some cosmetic touch up later this year!
I was asked about the Aspirin trial because evidently they believe that a small dose can help stop the recurrence of breast cancer (along with some other types). I/We think I am actually on an aspirin dose not the placebo because I am bruising so easily. And it also means I get checked every three months! So an added bonus!
Sun is shining here today, so after 2 days indoors with a grotty cough/cold, think I might just take myself out for a while. Have a good day
I am saddened to hear your story. You have been through so much over the last four years and it must have been a very difficult time for you. I am pleased that you were able to discuss your situation with the MacMillan Counselling Services and I hope that you found them helpful to you.
It is good to hear that you are cancer free and that you were able to enjoy your coach trip to the Christmas markets in Holland and Germany.
I am delighted that you have found us and I hope that you will keep in touch. This is a smashing community and we love to chat and support one another.
That is very interesting to hear how you were able to have the operation after counselling with the Macmillan team.
I am also very interested to hear about the trial, I think I will mention it to my consultant when I next see them. It sounds as if you have had excellent care throughout this time.
I hope you did manage to get out yesterday, today still looks dry, in fact it is frozen! Lovely sunrise again though.😊
The trial is run by Imperial college so it's not a spoof or something! The fact of extra check-ups kind of swung it for me as I hadn't felt any changes in my body prior to the diagnosis of BC. So any extra was welcome! I didn't get out yesterday after all! A dear friend who had been a rock through all of my cancer journey, rang me, in tears, as she is now starting a journey of her own with her husband's diagnosis of esophageal cancer and she wanted advice. So I helped as much as I could, giving her questions to ask, resources and people to seek out. But I put the phone down and had a melt down as it brought me right back to Dec 2016 and my husband's initial diagnosis.
Still after an hour I pulled up my big girl panties and got on with clearing another cupboard!
Today I DO have to go out to collect a prescription and return a book to the library - and the sun is currently still shining! Have a nice day
I didn't get told of any trials, and I know my oncologist was keen for me to be put forward for anything like that. Now my sister also has recently been diagnosed with breast cancer, which makes all women in the family, trying anything to prolong or prevent re-occurrence is even more important. I am currently NED too so all is good on that front. I will pass on this information to my sister too, then she can ask her dr's about it as well.
I am sorry you had a rough day yesterday after speaking with your friend. I can imagine how painful it was with all those memories surfacing of times with your husband. I am glad you were able to regain some equilibrium and managed to do a few things.
We are having a beautiful day today here, it is so lovely to see the sunshine, I hope you are having a good day too.
Welcome to each of you, also I won’t say sorry for your diagnosis because you were chosen by God or whomever your power maybe to spread the positive message of getting to the other side, there are others that may not know how to get over but with all tour positive energy they will get through. Love you all.
Im going in to be seen tomorrow. I have a growth that is bleeding. There’s no way this is anything but cancer. I have had two brothers die quite painfully from cancer so I’m a little scared. A lot scared. And completely freaked out that I might have to tell my dad I have cancer when he has already lost two children. If this doesn’t look like it will kill me I’m not saying even one word.
After watching my brothers die, I started really being concerned about cancer. I started fighting with my bosses at work because they used carcinogenic chemicals and I was so scared. I ended up quitting. I never smoked. My lifestyle is fairly clean even if I’m overweight. It was. Now I’m a truck driver and I didn’t know that drivers have higher testosterone which feeds cancer. I am trying to build credit to buy a house and practice homesteading for cleaner living hopefully to reduce my risk. then I’ll switch jobs and work local to do my farming stuff.
So I had a cyst. My GYN wouldn’t remove it because it was painless and she said it would probably grow back. That was years ago. I just became sexually active with a real boyfriend! I don’t know if sex triggered it. Friction, hormones or what. But it ruptured into a scary bleeding growth. The skin is stretched around it like it’s a thing trying to escape my body. I’m truly upset. I’m positive it’s vulvar cancer. It looks picture perfect to google images. I don’t want a vulvectomy and lose my delicate girl parts just as I rediscovered sex. I didn’t even know they remove the clitoris for medical reasons.
This is a hard hard night of wait. I’m stuck in the country truck stop. Being a trucker I’m far far from home. No where to be seen by a Dr. I’m scared. Devastated. I’m stuck taking my legal break and I can’t sleep. Won’t be fit for anything tomorrow I’m sure. No way I’m sleeping tonight.
I am so sorry to hear your story and so sad to know that you have lost two brothers to cancer.
I can understand that you are anxious about your growth. It is common for people to Google their symptoms but there is a tendency to imagine the worst possible scenario and for that reason it may not be such a good idea.
I hope that it goes well for you tomorrow.
Heyy :D my name is Ruaa, I’m 27 years old and I’m a leukemia survivor. I am 2 years post bone marrow transplant and I finished my intrathecal chemo last Jan.
I love meditation, reading, and I just started traveling.
Happy to join livebetterwith and meet new people!
Welcome to our lovely community. I am so glad you found us. There are many others here too, everyone is very friendly and supportive. It is lovely to 'meet' you. Since I have been here I have made new friends who are very special. I am sure you will too.
It is great that you are doing well, post treatment. How wonderful that you are now able to go travelling.
Do you have a starting point yet?
We also have recently started a community book club, you are more than welcome to join in too.
Have a look under the Coffee break category, there is a Book club thread.
I hope you have a lovely, peaceful weekend, take care, stay safe.
Hey @Ruaafa92, welcome!! So pleased to hear you're doing great.
I'm Blanka, 25 years-old, I love drawing, dancing and meeting new people. I also read a lot, my favourite is Russian lit. What are you reading atm?
Look forward to chatting,
Lovely to meet you. I am so pleased to hear that your bone marrow transplant was a success and that you have finished your chemo treatment.
This lovely community has been a warm friendly and caring place for me during my cancer journey. I have made special friends here and it is very important to me.
I am looking forward to hearing about your travel plans and as Lou has said, it would be great if you decide to join in the book club.
I was so happy when I read your reply!
I have started traveling last August and visited Italy with my brother who donated his stem cells for me.
It was a beautiful country.. we went around Rome, Florence, Napoli, Positano, and Capri... Magical!
For now we’re staying at home avoiding COVID-19.. I hope you’re all taking cautions and staying at home.
I would love to join the book club!
Let’s discover it.
Hey Blanka.. thank you for your message!
Russian lit is interesting! I’ve never tried reading from it. Would you recommend a specific book?
For me I’ve always been a fond of psychology, mythologies and human history books. But now I’m trying to read some novels. I’m currently reading Elizabeth Gilbert’s “The signature of all things”. Seems nice so far.
Looking forward to chatting soon,
I’m so happy that you’re doing well now and I’m also happy that I’m joining this community.
My travel plans are currently on hold because of the pandemic’s lockdown unfortunately. But I look forward to going back to normal life again and see my friends. I might start to go on road trips with them.
As for the book club, I would definitely join.
Your post made me smile! 😁
Wow!, what an amazing brother you have supporting you in this way, that is wonderful. I imagine it must have brought you both closer, if that were possible. Travelling to Italy together must have been very special after all you have been through. I would love to visit Italy one day, it sounds fabulous, so many beautiful and historic places to visit.
Staying at home whilst we are going through this pandemic is the wisest, safest and most sensible thing to do. It is only for a temporary time until we are in healthier times.
I am doing the same too, only venturing out to do the 'work'run (my daughter is a key worker).
It is another beautiful day, I am about to go in the garden, again! 😁
I hope you are having a good day,
p.s I am also sunshinedaff!
Hello my name is Diane and thank you for allowing me to join the group.
A bit about myself l have 3 beautiful daughters and 2 gorgeous grandchildren. Sadly l no longer work l have various health conditions including 2 new knees and having suffered a stroke in 2016, when l was having my 2nd knee replaced ...long story. Anyway...I have just been diagnosed withMultiple Myeloma l only went to the Rheumatologist for confirmation of Fibromyalgia and came out with the Myeloma diagnosis instead which came as a shock. Well of course all this happened at the start of the Covid19 pandemic, l certainly chose my moment l was already isolating due to my asthma etc so couldnt even get a hug 😏. I have been referred to Haematology but cant get in until May when l will have a telephone conversation. I have had xrays which show it is not aggressive so for now l am trying to learn what l can about it as it seems to be one of the blood cancers least known about (certainly to me).
I look forward to reading the forums and the receipes look lovely. So for now keep safe and well and thank you again.
Im Ali, 56, living in France since 1985.
I was diagnosed with non Hodgkin's lymphoma in 2018. After 10 rounds of successful chemo I went back to work. 5 months later I was diagnosed with Acute Lymphoblastic Leukemia & spent 2 months in hospital undergoing very intensive chemo. Now I'm undergoing 9 sessions of regular chemo but my body's been thru a lot so v tired. I'm lucky, I'm v positive & have a lot of support from friends & family. Also that I live near a new cancer research hospital with a great hematology team.
Am looking forward to sharing with you all. 😊