Effing cancer is an effing effer, frankly

[Lost soul]

Had my 8 week check last week and they are happy with the progress of the recovery from the radio therapy

I am now on 12 week checks

[CRB14]

Pugsey said:

Absolutely agree with comments. I'm currently deep into my own battle with the bxrstxrd and I WANT to hear about people who have won.

Well done!

I'm approaching 3 years in remission now. I had my last checkup on Monday. Had two years of maintenance drugs and intrathecals which finished earlier this year. It has been a strange journey really. I had Acute Lymphoblastic Lymphoma which was treated as Leukemia. I'll now start entering the routine post treatment scans and whatnot so heart scan, lung scans, PET scans and all that jazz. For me the journey will never really end. I'll technically be a patient for the rest of my life. In a way that's good I guess but it can also be worrying at the same time. I always get anxious before results.

Life appears back to normal but I now seem to live life in small chunks whereas before I thought I had it all planned out. Perhaps that comes with age though - I'm not sure.

Good luck in your battle.

[fridaypassion]

4 monthly check up for me tomorrow always a bit jittery. Im on watch and wait for lymphoma (NLPHL) just keeping an eye on bloods and waiting for some other symptoms to kick in. I've been told it could take 20 years for the disease to progress or I could be on chemo next month. Bit bizarre but Im most appreciative of every day I have while I'm still well. Totally changed my outlook on life. Really don't want a bone marrow biopsy hence the jitters over the blood results!

[CRB14]

fridaypassion said:

4 monthly check up for me tomorrow always a bit jittery. Im on watch and wait for lymphoma (NLPHL) just keeping an eye on bloods and waiting for some other symptoms to kick in. I've been told it could take 20 years for the disease to progress or I could be on chemo next month. Bit bizarre but Im most appreciative of every day I have while I'm still well. Totally changed my outlook on life. Really don't want a bone marrow biopsy hence the jitters over the blood results!

I've had two now. Last one earlier on this year. I don't remember the first one but I hammered the entonox for the second. Fingers crossed for you. They're not that great although they are over very quickly.

[fridaypassion]

Cheers my bloods have always been normal so I've avoided it so far. Made up for it with a couple of incisional biopsies earlier in the year which were not nice!

[fridaypassion]

Well good chat with the hematologist today all good, no change in bloods, quick physical and double check for symptoms and that me done for another 4 months. Just double checked today to see if I would be discharged if theres no change for a long time but the longest they will leave me is 6 months. Sticking to every 4 for the next couple of years but its odd to know its going to be part of life effectively forever.

Anyway nice beer and a curry tonight. Heres to good health!

[Lost soul]

fridaypassion said:

Just double checked today to see if I would be discharged if theres no change for a long time but the longest they will leave me is 6 months. Sticking to every 4 for the next couple of years but its odd to know its going to be part of life effectively forever.

Well it is reassuring that they keep a close eye on us

[CRB14]

Lost soul said:

Well it is reassuring that they keep a close eye on us

Completely agree. I was told that with hematology you're a patient for life. It sounds a bit extreme but it can be very comforting sometimes to know that you have that safety net.

Edit: I received some good news on Monday that there's a very good chance j could father children naturally. Its something you don't always think about as a major side effect but apparently many people never recover.

[Lost soul]

CRB14 said:

Edit: I received some good news on Monday that there's a very good chance j could father children naturally. Its something you don't always think about as a major side effect but apparently many people never recover.

Good for you mate

[Lost soul]

CRB14 said:

Completely agree. I was told that with hematology you're a patient for life. It sounds a bit extreme but it can be very comforting sometimes to know that you have that safety net.

I would be happier if I had a scan to confirm what they are telling me , but they say because the cancer was in my throat they can view everything with the scope down my hooter , I guess they will give me a scan at some stage .

[fridaypassion]

I dont think PET scans are very good for you. I've had 2 and the consultant said they wont run me through again unless its absolutely necessary. No prizes for guessing the side effects!

[Lost soul]

fridaypassion said:

I dont think PET scans are very good for you. I've had 2 and the consultant said they wont run me through again unless its absolutely necessary. No prizes for guessing the side effects!

Not had a PET apparently that's best used for diagnosis , had an MRI and a CT scan pre surgery

A PET scan sounds like a whole other experience

[fridaypassion]

Mine were combined ct/pet scan they have some pretty fancy facilities at St James hospital in Leeds. Its the big polo mint machine but you get injected with radioactive stuff before you go in.

[j4ckos mate]

It's merrily chomping its way through dad at the moment

He's 81 dementia,heart probs,can't walk now.
The hospital are doing their best to Palm him off back home, you can clearly see he needs a nursing home.

[Lost soul]

fridaypassion said:

Mine were combined ct/pet scan they have some pretty fancy facilities at St James hospital in Leeds. Its the big polo mint machine but you get injected with radioactive stuff before you go in.

That's the fella , not allowed near kids for a day after

[Crapgame]

(Read the thread....it's taken me a day!)

Joining the fk cancer club.

My wife is just over her first bout of chemo with pertionea cancer. Sadly incurable.
It's genuinely joyus to read the success stories on here but sadly there are too many posts in this thread celebratin a life lost to this stter of a disease.


fk you cancer with bells on

[Mrs Muttleysnoop]

Crapgame said:

(Read the thread....it's taken me a day!)

Joining the fk cancer club.

My wife is just over her first bout of chemo with pertionea cancer. Sadly incurable.
It's genuinely joyus to read the success stories on here but sadly there are too many posts in this thread celebratin a life lost to this stter of a disease.


fk you cancer with bells on

First of all, good luck to your wife.

Secondly, 10 years ago I was diagnosed with advanced Ovarian cancer which was in a few other places including the pertioneam (sp). I was given a very poor prognosis but I am still here.

Fast forward to 2011. My cancer returned in the pertioneam (sp). My chemo consultant said as he did 10 years ago he cannot cure me.

My oncologist said years ago he could not believe I am still alive and that was before being diagnosed for the second time.

So tell your wife when she is bathing or showering to scream out loud, fk off cancer and leave me alone.

All the best to you both.

Edited by Mrs Muttleysnoop on Saturday 15th November 13:51

[rigga]

Think I posted previously about my older brother's fight against cancer, had some major jaw surgery and chemotherapy and radiotherapy, at the same time my twin sister was diagnosed with cancer, had major lower body surgery which resulted in a colostomy bag and severe leg pain through nerve damage. Unfortunately my brother passed away in may aged 57 after eighteen months of fighting and pain,a really miserable way for a life to end, my sister got some news last week that the cancer has returned and she is now back fighting, feel helpless with it all after literally watching my brother die, and wonder if i could be as strong as she is with this latest setback, at under 50 cancer has no barriers to who it affects.

[Crapgame]

Mrs Muttleysnoop said:

First of all, good luck to your wife.

Secondly, 10 years ago I was diagnosed with advanced Ovarian cancer which was in a few other places including the pertioneam (sp). I was given a very poor prognosis but I am still here.

Fast forward to 2011. My cancer returned in the pertioneam (sp). My chemo consultant said as he did 10 years ago he cannot cure me.

My oncologist said years ago he could not believe I am still alive and that was before being diagnosed for the second time.

So tell your wife when she is bathing or showering to scream out loud, fk off cancer and leave me alone.

All the best to you both.

Edited by Mrs Muttleysnoop on Saturday 15th November 13:51

Thanks for your wishes. Sadly PPC (primary peritoneal cancer) is a bd. Being fluid based it is highly mobile and seeds everywhere (you can Google it but it's a rare old thing as there is very little about it,number of it diagnosed in the uk every year barely make it into triple figures)

I will be honest and say outright that the chemo has severely affected her mental wellbeing (chuck in serious denial etc). To the point of me having to seek help from our go and the consultant and cons nurse behind her back to get help dealing with the violent unpredictable mood swings and misguided priorities.

[Du1point8]

Crapgame said:

Mrs Muttleysnoop said:

First of all, good luck to your wife.

Secondly, 10 years ago I was diagnosed with advanced Ovarian cancer which was in a few other places including the pertioneam (sp). I was given a very poor prognosis but I am still here.

Fast forward to 2011. My cancer returned in the pertioneam (sp). My chemo consultant said as he did 10 years ago he cannot cure me.

My oncologist said years ago he could not believe I am still alive and that was before being diagnosed for the second time.

So tell your wife when she is bathing or showering to scream out loud, fk off cancer and leave me alone.

All the best to you both.

Edited by Mrs Muttleysnoop on Saturday 15th November 13:51

Thanks for your wishes. Sadly PPC (primary peritoneal cancer) is a bd. Being fluid based it is highly mobile and seeds everywhere (you can Google it but it's a rare old thing as there is very little about it,number of it diagnosed in the uk every year barely make it into triple figures)

I will be honest and say outright that the chemo has severely affected her mental wellbeing (chuck in serious denial etc). To the point of me having to seek help from our go and the consultant and cons nurse behind her back to get help dealing with the violent unpredictable mood swings and misguided priorities.

Sadly I think you are right, a good friends soon to be wife lost her best friend to peritoneal cancer a month back, she enjoyed 3 more years since being diagnosed, she was in her early thirties.

She suffered the same issues that you are describing now all down to this nasty form of cancer, she didn't let it get her down and enjoyed every moment of the time she was here living every day as if it were her last.

Not something I would normally type but after seeing what my friend has watched over the past 3 years, I can see why you are doing what you are doing.

Shame its always the good people that it gets, never the evil people, just those that enjoying living their lives and not making other people suffer for their own gains.