Effing cancer is an effing effer, frankly

[Hodgie]

All the best Siko, you’ll be through this in no time. Wishing you a speedy recovery!

[Stan the Bat]

Good luck Siko.

[billflin]

Thank you for all of your various replies, which have really helped. I am pretty clear that I need to do everything that I can to try to draw a line under this. However that does not make the prospect of chemo any less daunting, and it is really taking over most of my waking (and sleeping) hours.

Siko said:

Sorry to hear that mate (ps I am not sure you have switched accounts btw - active for 246 months?). I was diagnosed a few weeks back and go in for surgery on Tues to remove my tonsil and lymph nodes. Everything you said hit home with me too. I think you'd be crazy not to take up the offer of chemo to be honest, a mate's wife is having a very strong dose of chemo for an aggressive tumour and she said she is coping ok, just a bit wiped out afterwards.

Very best of luck with your treatment and recovery.

StringBean21 said:

Hi billflin

I'm in a very similar situation by the sounds of it. I'm currently sat at home on day 2 of a single dose of Carboplatin.

I had surgery 4 weeks ago and the results form the pathology were stage 1 classic /pure seminoma with a couple of risk factors. I was given the option of surveillance with a 20% chance of recurrence or single dose of carboplatin to reduce down to 5% - was an easy decision for me but appreciate this is a personal decision with other factors that weigh into it.

Being given the drug was straight forward, I was there in total for 3 hours and 1 hour on the machine. felt a bit spaced out on the day but this could have been anxiety, i got the train home. The first night was broken sleep and some nausea but not too bad. Today I'm feeling a bit washed out and occasionally a wave of nausea. Only day 2 but happy to report back if it helps.

Happy to help in anyway and best of luck to you and the others!

Thanks for this reply. It sounds like we are in a very similar position. If you feel up to it, it would be very helpful to understand how you have been feeling since the chemo on a day by day basis. I appreciate that we are all different, but equally a first hand (and recent) account will be very valuable.

CAH706 said:

Billflin and siko - good luck with your treatments

Billflin - my wife had a similar dilemma re: treatment for her cancer recently and took the decision to have the chemo and radiotherapy on the basis that she would have kicked herself if the cancer wasn’t fully eradicated and remained/came back. It’s a very personal choice to make so I wish you all the best with your decision making - if it helps she found the chemo hard for a day or so after treatment but it was nothing like as bad as she was expecting

This is the real crux of the issue for me. I think I am over-analysing the likely side effects, but it is hard not to.

FactoryBacked said:

Have you decided on your course of treatment yet?

Happy to offer any advice I can as I was in the same position 18 months ago. I've got my one year post-treatment CT scan in a week or so, so it's all still pretty fresh.

Re: chemo, I didn't have any option as it had spread to my lymph nodes but I would have taken it anyway if offered. I had three rounds of BEP and then also needed the RPLND operation to be sure. I would equate one round of chemo to a really bad hangover that lingers a bit!

I found the Macmillan testicular cancer forum very useful to read through. I felt much more appraised, calm and in control during consultancy appointments as a result.

Thank you, this is also very useful. I am sorry to hear that your lymph nodes were also involved. If I didn't have the carboplatin and the cancer recurred then the treatment would also be three rounds of BEP. What I am slightly struggling to overcome is that it is overwhelmingly likely that I am already completely cured and don't need to put myself (or my family) through chemo.

I managed to speak with a friend of a friend who had the same thing a couple of years ago, and opted for surveillance. He has not had any recurrence, but one point that he did make was that he was extremely anxious prior to each scan, and that had he had the carboplatin he would expect that anxiety to have been greatly reduced.

[Hodgie]

StringBean21 said:

Hi billflin

I'm in a very similar situation by the sounds of it. I'm currently sat at home on day 2 of a single dose of Carboplatin.

I had surgery 4 weeks ago and the results form the pathology were stage 1 classic /pure seminoma with a couple of risk factors. I was given the option of surveillance with a 20% chance of recurrence or single dose of carboplatin to reduce down to 5% - was an easy decision for me but appreciate this is a personal decision with other factors that weigh into it.

Being given the drug was straight forward, I was there in total for 3 hours and 1 hour on the machine. felt a bit spaced out on the day but this could have been anxiety, i got the train home. The first night was broken sleep and some nausea but not too bad. Today I'm feeling a bit washed out and occasionally a wave of nausea. Only day 2 but happy to report back if it helps.

Happy to help in anyway and best of luck to you and the others!

Thanks for this reply. It sounds like we are in a very similar position. If you feel up to it, it would be very helpful to understand how you have been feeling since the chemo on a day by day basis. I appreciate that we are all different, but equally a first hand (and recent) account will be very valuable.


Hi Billflin,

Not sure why my last post had an old username, I don't post on here much!

I'm currently on day 5 now and have put a few notes below for each days experience;

Day One:

Day of treatment. Was pretty straightforward, a couple of issues getting the cannula in and then was hooked up to the machine, like a small pump, for an hour with the Carboplatin in a drip to the cannula. I was pretty anxious this day and that was the worst bit. I got the train home from London and some lunch on the way back. Once home felt a bit washed out in the evening.

I had a broken sleep and felt some nausea/indigestion. I believe the broken sleep maybe due to the 3 day course of steroids you are given.

Day Two;

Felt tired and had occasional waves of nausea but not actually being sick. pretty much sat on the sofa and trying to eat small healthy snacks/meals which do seem to work. Indigestion feeling probably the worst bit.

Sleep much like the night before, broken and a feeling that can only be described as indigestion, similar to acid reflux.

Day Three;

This has been probably the worst day, this might not have been helped though by me trying to play with and look after my two young children. Waves of tiredness although not being able to sleep and bouts of the indigestion feeling.

Sleep a little better.

Day Four;

An improvement on yesterday, starting to feel bored which must be a good thing. Still have the indigestion feeling and some nausea. last day of steroids today and am interested to see how that affects things. Have had some constipation since the treatment which I believe is common, self prescribed a lot of coffee which sorted things out

Day 5

Today; feeling better than yesterday. Going to go for a walk and get some exercise. Last nights sleep wasn't great but could have been worse. After alot of reading on forums I'm seeing that many people say days 3-4 are the worst.


All in all I've heard the single dose of carboplatin to be like a lingering hangover with tiredness etc. This seems to be what I have experienced so far. Not great but bearable, i'd recommend taking the time off work but also trying to stay somewhat busy to keep your mind off things. Oh and buy rennies and Gaviscon, plus drink loads of water and take the meds on time as directed.

In terms of your decision to take the treatment or surveillance, I spent hours on google, forums, studies etc. I don't think there is a right answer, only what you feel comfortable with. I have suffered for a long time with anxiety and OCD and i believe taking the treatment will reduced this although not eliminate it when it comes to the follow up scans.

There were posts on some of the forums from people who had surveillance but had relapsed and fewer for people who had treatment and hadn't, but then most people will have moved on with their lives and wont come back to report they haven't had a recurrence if that makes sense.

The end result will be the same either way and you'll be completely cured which is brilliant, its just the treatment burden you may have to face to get there.

One thing a consultant said to me that stuck in my mind was the Carbo 'mopping up any cancerous cells that may have be got into me before they take hold' not entirely his exact words but you get the gist!

Happy to to have a chat if it helps!

Edited by Hodgie on Tuesday 5th July 10:32

[PHThrowaway]

ED209 said:

The worst bit is that I have a 2.5 year old daughter who loves her grandma, always asking to go and see her. She obviously has no real understanding of death and illness but I have no idea how to handle it for her? Do I keep her away, do I take her to see grandma. I know it gives my mam and dad a lift when they see her but I also feel it’s not the place for a child at the minute.

Just want to add my voice to those advising that you take your daughter to see her grandma!

Do it every day!

I took my son (3 at the time) to visit his Mummy in the hospice the day she passed away. Her bed was next to a patio door, and he sat and ate his lunch at a table just outside the door, where she could see him. I'm so glad I did, both for her, and so I can tell him about it when he's older.

As far as handling your daughter's understanding of death and illness, a couple of online resources I can recommend are Child Bereavement UK - https://www.childbereavementuk.org/when-someone-is... - and Winton's Wish - https://www.winstonswish.org/telling-children-youn...

There are also some books that can help:
- The Invisible String by Patrice Karst
- Badger's Parting Gifts by Susan Varley
- The Memory Tree by Britta Teckentrup
- What Does Dead Mean? by Caroline Jay & Jenni Thomas

[billflin]

Hodgie said:

All in all I've heard the single dose of carboplatin to be like a lingering hangover with tiredness etc. This seems to be what I have experienced so far. Not great but bearable, i'd recommend taking the time off work but also trying to stay somewhat busy to keep your mind off things. Oh and buy rennies and Gaviscon, plus drink loads of water and take the meds on time as directed.

In terms of your decision to take the treatment or surveillance, I spent hours on google, forums, studies etc. I don't think there is a right answer, only what you feel comfortable with. I have suffered for a long time with anxiety and OCD and i believe taking the treatment will reduced this although not eliminate it when it comes to the follow up scans.

There were posts on some of the forums from people who had surveillance but had relapsed and fewer for people who had treatment and hadn't, but then most people will have moved on with their lives and wont come back to report they haven't had a recurrence if that makes sense.

The end result will be the same either way and you'll be completely cured which is brilliant, its just the treatment burden you may have to face to get there.

One thing a consultant said to me that stuck in my mind was the Carbo 'mopping up any cancerous cells that may have be got into me before they take hold' not entirely his exact words but you get the gist!

Happy to to have a chat if it helps!

Thank you very much for taking the trouble to post this. It is much appreciated.

[ED209]

Well my mother is still clinging on but it’s clear she is in her last days now and it won’t be long until she passes away. The doctor came to see her yesterday and I know the sole purpose of the visit was so that she has seen a doctor close to death so he can issue a certificate. The McMillan nurse arranged this after seeing her.

I stayed at my parents last night to support them and I have barely slept. It’s a bit of a double whammy for me as it also looks like my dog is close to the end as well. He’s been my best mate for 13 years but he’s really not well at the minute and I suspect a decision will have to be made in the next couple of days.

looks like I am going to lose my mam and my dog within a couple of days. Life is st sometimes.

[GT3Manthey]

ED209 said:

Well my mother is still clinging on but it’s clear she is in her last days now and it won’t be long until she passes away. The doctor came to see her yesterday and I know the sole purpose of the visit was so that she has seen a doctor close to death so he can issue a certificate. The McMillan nurse arranged this after seeing her.

I stayed at my parents last night to support them and I have barely slept. It’s a bit of a double whammy for me as it also looks like my dog is close to the end as well. He’s been my best mate for 13 years but he’s really not well at the minute and I suspect a decision will have to be made in the next couple of days.

looks like I am going to lose my mam and my dog within a couple of days. Life is st sometimes.

So sorry to read this Ed , thoughts are with you .

Be there for your father now he will need your support too .
I’m assuming your father is of retirement age ?

Try and be strong for him too.

Also take care of yourself too

[Hodgie]

FactoryBacked said:

billflin said:

Never in a million years did I ever think that I would have any meaningful input to this thread. There is no history of cancer in my family, and I am reasonably(!) young and healthy.

I am a long-term poster but this is a second account, because I have elected to keep my situation known to only a very small number of people.

I also have no idea why I am posting this. I have written it, deleted it, written it again....Anyway....

A few months ago I noticed something not quite right with one of my testicles. It was much "firmer" than normal.

A quick Doctor Google indicated that it could be nothing but could be something. I presumed it would be nothing. I felt (and have felt throughout) absolutely fine.

Completely out of character I did something about it, and was able to see a GP a week or so later. She wasn't sure what was going on.

Unfortunately that was where the NHS fell over, and whilst I was put on a two-week referral, at the end of two weeks I was told that there were no appointments and they didn't know when there would be. By this stage I was in a bit of a state and that news was devastating. I am fortunate that I have private health cover with work and I got in touch with them. A week later I was seeing a consultant, who within about two seconds concluded that it was highly likely that I had testicular cancer and that he could operate a week later.

I am not ashamed to admit that I was absolutely stunned and hugely upset. I was immediately taken off for blood tests and given plenty of information, all of which went in one ear and out of the other.

I had arrange to meet some mates at the pub straight afterwards, so I sat through the evening as if nothing was wrong, laughing and joking, whilst at the same time wondering how I would tell my wife.....It was bizarre. I held it together for about 10 seconds when I got home.

Although I had the best of care, the following days and weeks have been highly stressful. The blood tests were clear, a CT test was largely clear except one area of concern (a subsequent PT scan gave me the all clear - a massive relief). I had the op a week after the first consultation. I am still processing what has happened, but feel that I have been radically put out of kilter. I am told that I will get used to this in due course but that feels a long way off. It upsets me that I do not feel like myself.

I now have a difficult decision to make as to whether to have a single round of chemotherapy to "sweep up" any baddies that might have escaped, or just have surveillance. I would be interested to know if anyone else has faced the same decision? The chemotherapy would reduce the risk of recurrence from circa 20% to 2-3%. However on that basis there is an 80% chance that I am cured and I do not need any treatment. The advice for me is that the decision is finely balanced. I have to make it soon.

I could ramble on and on about the impact that this has had on me. That would, however, be very self indulgent and probably unhelpful for others. Moreover, I am aware that I am actually incredibly lucky. It was caught early, is completely curable, and compared to others I have had a very easy ride so far.

In my limited experience - and for anyone reading this - I would say two things. Firstly, you know if something is up, so do something about it. There was a period of time in my teenage years where having so many people get their hands on my balls would have been an achievement. Secondly, take 10 minutes to double check critical illness/income protection/life insurance policies just to check that you are covered. Knowing that will remove a significant layer of stress should the worst happen. A particular low point was logging in to my work computer at 3am to try and be sure that we would be OK financially should the news be bad or get worse.

Have you decided on your course of treatment yet?

Happy to offer any advice I can as I was in the same position 18 months ago. I've got my one year post-treatment CT scan in a week or so, so it's all still pretty fresh.

Re: chemo, I didn't have any option as it had spread to my lymph nodes but I would have taken it anyway if offered. I had three rounds of BEP and then also needed the RPLND operation to be sure. I would equate one round of chemo to a really bad hangover that lingers a bit!

I found the Macmillan testicular cancer forum very useful to read through. I felt much more appraised, calm and in control during consultancy appointments as a result.

Hi FactoryBacked,

How did you get on with your scan? Good luck if you haven’t had it yet!

[ED209]

ED209 said:

Well my mother is still clinging on but it’s clear she is in her last days now and it won’t be long until she passes away. The doctor came to see her yesterday and I know the sole purpose of the visit was so that she has seen a doctor close to death so he can issue a certificate. The McMillan nurse arranged this after seeing her.

I stayed at my parents last night to support them and I have barely slept. It’s a bit of a double whammy for me as it also looks like my dog is close to the end as well. He’s been my best mate for 13 years but he’s really not well at the minute and I suspect a decision will have to be made in the next couple of days.

looks like I am going to lose my mam and my dog within a couple of days. Life is st sometimes.

Well my mother is still fighting although gradually deteriorating and getting more and more confused but I lost my mate today, absolutely heart broken but I am sure we made the right decision. We couldn’t get an appointment at our vets yesterday so waited until this morning, Oscar had deteriorated quite a bit and was looking miserable, struggling to even stand up and refusing to eat anything.

I don’t feel like I can grieve for him (if that’s what you do it’s a pet) yet though as I need to be strong for my mam and dad. I am staying over at theirs tonight to give whatever support I possibly can.

[paulguitar]

ED209 said:

ED209 said:

Well my mother is still clinging on but it’s clear she is in her last days now and it won’t be long until she passes away. The doctor came to see her yesterday and I know the sole purpose of the visit was so that she has seen a doctor close to death so he can issue a certificate. The McMillan nurse arranged this after seeing her.

I stayed at my parents last night to support them and I have barely slept. It’s a bit of a double whammy for me as it also looks like my dog is close to the end as well. He’s been my best mate for 13 years but he’s really not well at the minute and I suspect a decision will have to be made in the next couple of days.

looks like I am going to lose my mam and my dog within a couple of days. Life is st sometimes.

Well my mother is still fighting although gradually deteriorating and getting more and more confused but I lost my mate today, absolutely heart broken but I am sure we made the right decision. We couldn’t get an appointment at our vets yesterday so waited until this morning, Oscar had deteriorated quite a bit and was looking miserable, struggling to even stand up and refusing to eat anything.

I don’t feel like I can grieve for him (if that’s what you do it’s a pet) yet though as I need to be strong for my mam and dad. I am staying over at theirs tonight to give whatever support I possibly can.

Really sorry that you are going through this, a horrible time for you. It's completely appropriate to grieve for a pet, you will do it in time. As of now, it sounds like you're doing all of the right things to be there for your folks. All the best to you. Things will get better.

[ED209]

Well my mam is still clinging on, it’s being a tough weekend. We have had a couple of moments where I have thought it was the end but she keeps fighting. She’s had a few periods of agitation over night but she is too weak to sustain them for any length of time. The worst was at 6am when she woke me (I was asleep on the floor next to her bed) and was trying to get out of bed for about ten minutes, pulled her oxygen out and gripped my arm so hard that she drew blood with her nails.

It’s heartbreaking.

[CrgT16]

No words but my thoughts with all of you! Sobering reading,

[loafer123]

ED209 said:

Well my mam is still clinging on, it’s being a tough weekend. We have had a couple of moments where I have thought it was the end but she keeps fighting. She’s had a few periods of agitation over night but she is too weak to sustain them for any length of time. The worst was at 6am when she woke me (I was asleep on the floor next to her bed) and was trying to get out of bed for about ten minutes, pulled her oxygen out and gripped my arm so hard that she drew blood with her nails.

It’s heartbreaking.

I've been in exactly that position with my dad.

I wish you all the best.

[Stan the Bat]

Siko , any news ?

[FactoryBacked]

Hodgie said:

FactoryBacked said:

billflin said:

Never in a million years did I ever think that I would have any meaningful input to this thread. There is no history of cancer in my family, and I am reasonably(!) young and healthy.

I am a long-term poster but this is a second account, because I have elected to keep my situation known to only a very small number of people.

I also have no idea why I am posting this. I have written it, deleted it, written it again....Anyway....

A few months ago I noticed something not quite right with one of my testicles. It was much "firmer" than normal.

A quick Doctor Google indicated that it could be nothing but could be something. I presumed it would be nothing. I felt (and have felt throughout) absolutely fine.

Completely out of character I did something about it, and was able to see a GP a week or so later. She wasn't sure what was going on.

Unfortunately that was where the NHS fell over, and whilst I was put on a two-week referral, at the end of two weeks I was told that there were no appointments and they didn't know when there would be. By this stage I was in a bit of a state and that news was devastating. I am fortunate that I have private health cover with work and I got in touch with them. A week later I was seeing a consultant, who within about two seconds concluded that it was highly likely that I had testicular cancer and that he could operate a week later.

I am not ashamed to admit that I was absolutely stunned and hugely upset. I was immediately taken off for blood tests and given plenty of information, all of which went in one ear and out of the other.

I had arrange to meet some mates at the pub straight afterwards, so I sat through the evening as if nothing was wrong, laughing and joking, whilst at the same time wondering how I would tell my wife.....It was bizarre. I held it together for about 10 seconds when I got home.

Although I had the best of care, the following days and weeks have been highly stressful. The blood tests were clear, a CT test was largely clear except one area of concern (a subsequent PT scan gave me the all clear - a massive relief). I had the op a week after the first consultation. I am still processing what has happened, but feel that I have been radically put out of kilter. I am told that I will get used to this in due course but that feels a long way off. It upsets me that I do not feel like myself.

I now have a difficult decision to make as to whether to have a single round of chemotherapy to "sweep up" any baddies that might have escaped, or just have surveillance. I would be interested to know if anyone else has faced the same decision? The chemotherapy would reduce the risk of recurrence from circa 20% to 2-3%. However on that basis there is an 80% chance that I am cured and I do not need any treatment. The advice for me is that the decision is finely balanced. I have to make it soon.

I could ramble on and on about the impact that this has had on me. That would, however, be very self indulgent and probably unhelpful for others. Moreover, I am aware that I am actually incredibly lucky. It was caught early, is completely curable, and compared to others I have had a very easy ride so far.

In my limited experience - and for anyone reading this - I would say two things. Firstly, you know if something is up, so do something about it. There was a period of time in my teenage years where having so many people get their hands on my balls would have been an achievement. Secondly, take 10 minutes to double check critical illness/income protection/life insurance policies just to check that you are covered. Knowing that will remove a significant layer of stress should the worst happen. A particular low point was logging in to my work computer at 3am to try and be sure that we would be OK financially should the news be bad or get worse.

Have you decided on your course of treatment yet?

Happy to offer any advice I can as I was in the same position 18 months ago. I've got my one year post-treatment CT scan in a week or so, so it's all still pretty fresh.

Re: chemo, I didn't have any option as it had spread to my lymph nodes but I would have taken it anyway if offered. I had three rounds of BEP and then also needed the RPLND operation to be sure. I would equate one round of chemo to a really bad hangover that lingers a bit!

I found the Macmillan testicular cancer forum very useful to read through. I felt much more appraised, calm and in control during consultancy appointments as a result.

Hi FactoryBacked,

How did you get on with your scan? Good luck if you haven’t had it yet!

Thanks for asking, got my full set of blood tests tomorow and then scan shortly after.

Feeling much less anxious this week. Sunshine and some evening walks have helped clear my head a bit.

I've been the picture of calm since treatment finished, probably a little too matter of fact even, aside from the occassional passing thought of what I'd faced last year. But as this key date has approached I have suddenly become more and more anxious. It has been all consuming.

The long term side effects which have thankfully been quite mild were suddenly amplified a hundred times over. Every ache and pain was my body telling me the cancer was back and it had spread. I even convinced myself I was one of the tiny percentage that end up with leukemia last week.

I guess it never really fully leaves you, metaphorically, even after the physicality of a bout of successful treatment.

Big love to everyone on this thread who is currently facing up to the unknown either themselves or alongside loved ones.

[Siko]

Stan the Bat said:

Siko , any news ?

Hi Stan - sorry I wrote a long post but somehow it never got uploaded. Short answer is I’m home now after 5 days in nhs hospital, a pretty uncomfortable experience but the care/staff was excellent. Just waiting staples out and surgery results now….

[Hodgie]

FactoryBacked said:

Thanks for asking, got my full set of blood tests tomorow and then scan shortly after.

Feeling much less anxious this week. Sunshine and some evening walks have helped clear my head a bit.

I've been the picture of calm since treatment finished, probably a little too matter of fact even, aside from the occassional passing thought of what I'd faced last year. But as this key date has approached I have suddenly become more and more anxious. It has been all consuming.

The long term side effects which have thankfully been quite mild were suddenly amplified a hundred times over. Every ache and pain was my body telling me the cancer was back and it had spread. I even convinced myself I was one of the tiny percentage that end up with leukemia last week.

I guess it never really fully leaves you, metaphorically, even after the physicality of a bout of successful treatment.

Big love to everyone on this thread who is currently facing up to the unknown either themselves or alongside loved ones.

Glad to hear you're feeling less anxious this week. No doubt the scans will be clear and you'll be able to put it behind you. I found the mental side by far the hardest aspect for me to deal with since being diagnosed.

I have had much less treatment to go through than you so far but I can relate to the feeling of calm after. The anxiety was horrendous at the start especially not knowing the type, if it had spread and how much etc. It was then all action with surgery, god knows how many blood tests, scans, chemo (only the one dose). Now its finished and I'm feeling a bit shell shocked!

Out of interest, what type did you have and how often have you had scans since the treatment?

With the amount you've gone through it sounds like you've kicked it a new one! Best of luck and let us know how you get on!

[Stan the Bat]

Siko said:

Stan the Bat said:

Siko , any news ?

Hi Stan - sorry I wrote a long post but somehow it never got uploaded. Short answer is I’m home now after 5 days in nhs hospital, a pretty uncomfortable experience but the care/staff was excellent. Just waiting staples out and surgery results now….

Thanks mate, was wondering why we hadn't heard from you.

Glad you are ok.

[ED209]

Mam is still clinging on, it’s breaking my heart seeing her and what it’s doing to my dad.

Me dad and my brother who have been here 24/7 for almost a week now are also tired. We are obviously starting to get on each other’s nerves and things are becoming tense. It’s been an absolutely st week.