I’m stunned

I just want to say thank you to everyone that took the time to reply to my post and to apologise for not engaging straight away. I was overwhelmed if I’m honest and still had further steps to negotiate in respect of my cancer.

So endoscopy completed and biopsy under general to look at tongue and hopefully identify primary.

Results were really positive, negative on both counts,tongue and esophagus and small primary identified behind nose.The first positive since this all started and then the consultant asked me if I had ever suffered trauma to my neck previously as the hot spot on the PET scan could be trauma rather than cancer…..wow….actual hope, further MRI scan on my spine and today results and hopefully a treatment plan. Not a wink of sleep last night.

So the oncology consultant gets the bad news out of the way…it is definitely in my spine…my hope was false,,,to say I’m feeling absolutely crushed is an understatement, so definitely not curable. I start chemo next week, six rounds as it stands, no radiotherapy to begin with as I was told by the head and neck consultant because what is the point, see what effect chemo has on the tumours first, ultimately it will be the secondary cancer in my spine that kills me rather than the head and neck cancers.

Still haven’t told my girls everything, will probably see what chemo brings, I might have no option other than full disclosure depending on results but I know at some point I will have to break it to them.

So here I am again sorry, only posting to vent, I was hoping for a miracle.

Paul.

Hi Paul.

This is the hardest journey, for any one, and we have all been where  you are.

I also found,  having to tell my kids, was the hardest part, and they are all grown up, with families of there own, though still my kids.

I  have been incurable, though treatable since day one, and that was a special year for this family, my eldest grandson was  getting married, was going to be our golden wedding, and a special birthday for my hubby.

I have seen everyone  of them, never thought i would, the word that kept me going was a powerful word HOPE, and to this day, i still use it.

It is the start of treatment for you, and you will get threw it, we all do, and   carry on, till the next one.

At times treatment is not easy, you will find your own way, of dealing with any side effects, if and when they come, and boy do we get challenged.

Please use the group, always some one here, to listen, if you need to vent, scream, have a moan, ask for advise, and every one has advise, to help make your journey smoother.

Remember you are not alone, and as we all say, only some one that has been threw this truly understands, how another fills.

Even our nearest and dearest, do not always understand, how can they, though they look on helpless at times.as there is nothing they can do, but be there for us,

I wish well my friend, and please keep, us updated.

Dear Italian Job

What you can give us is your truth. Thankyou. The more you can be who you truly are the more each moment is real and valuable. Miracles can happen. For myself I want to prepare for the worst if I can, while believing that I may be able to live longer than expected and in better health than expected. I say to myself in this moment I am alright and we only have now. We here care about your painful anguished sad story. Treemoth

Hi Paul,

I Hope the chemo gives you a lot more time than you can imagine and by then, there will be another type of treatment they can suggest!

I told our son and daughter the full story from the start and promised I'd keep them up to date, which I have done! As your girls are old enough to understand, do you think it might be the right thing to do to tell them the whole story. You know your girls better than anyone but I know if I had delayed in telling our children I'm sure their feelings would have been hurt. It may have seemed I didn't trust them! Also there may be things they would like to discuss with you.

I've always said about this diagnosis that at least when I do go, nothing will be left unsaid and there will be no regrets! Good luck with the chemo!

Morning Annette, thank you for replying , the weight of not telling my girls the full truth is enormous, I am by nature an honest person, i don’t keep secrets from my wife, I never have. I battle constantly with the thoughts I have, if I delay telling them will it allow my youngest to concentrate on her A levels and my oldest to put her full effort into joining the RAF rather than being pulled towards me by the tractor beam of grief. There’s also a finality about it, the enormity of the situation, I’m still trying to come to terms with that myself, both my wife and I are… 

Hi Paul, 

It is a really difficult decision, how much you tell your children. My inclination was to not tell the whole story, but I was persuaded by my husband and one of the consultants that I saw to be open about the full diagnosis. The main thing that persuaded me was the uncertainty, I had no idea how quickly things might progress, and I didn't want to have to say, things are worse than I have told you. In the end my response to the palliative chemotherapy was far better than expected.

Whatever you decide I hope that you have a good response to treatment. 

Best wishes 

Thanks Sarah, that’s pretty much where I find myself currently, not knowing what effect the palliative chemo will have on things.

I do take your point, if the response isn’t what I would with for then the time frame potentially collapses pretty quickly.

I guess in my mind, if I can protect my girls from the full enormity of it at least for a while it would give my youngest the opportunity to concentrate on her A levels and my eldest the space to pursue the RAF which has already started, rather than being drawn to me by the tractor beam of grief. 
I like to think I’m acting like a loving father by sparing them even a little bit of pain but I’m constantly asking myself if I’m ultimately taking the easy path for me too.

Hi Paul

I've been reading your posts but not replied until now because I just found it difficult to know what to say. I have been thinking about you though and wondering how things were.

I totally get your dilemma about what and how much to tell your lovely family. It is our instinct as a parent to want to protect our kids . It's hard because noone really knows 100 per cent how our cancer will respond to treatment and what new treatments might come along so when talking about what timescale it's hard to say. 

. Since receiving my bad news Ive not discussed the situation with my kids 29 and 27 at all. I'm not sure what to say tbh I've never asked my oncologist for a prognosis I'm too scared and don't think I'd find it helpful. I just try and see as much of them and my little granddaughter as possible. At the moment I'm lucky enough to feel ok. I intend to writes cards to each of them and my lovely husband to say what they mean to me. I really envy people who can speak openly about their feelings that's hard for me. 

Sorry this is a rambling post but I just wanted to say I get how you feel there's no easy answers you know your kids best. Have you thought about counselling? I think it would help me but at the moment I'm just trying to carry on as best I can as if things are normal and to talk about things too much upsets me.

Take care

Sue

Hi Sue, thanks for the lovely reply, it wasn’t a rambling reply at all, I don’t know if counselling would help me, it possibly would, I’m lucky that I’m very close to my brother and sister but they are reeling from my diagnosis as is my wife, so i feel like we are all barely with heads above water, if i lean all i do is submerge the other person….that’s my fear anyway

I’m trying to appear as normal as i can in front of my girls, if i fall apart completely as i keep doing when it’s just me and my wife alone then they will quickly unravel me.

I think on reflection i will begin chemo, see how i take to it and what effect it has and make a decision either at the end of the six cycles if that works out or before if the treatment doesn’t work as i would like.

Thanks again for replying.

Hi Paul..

Im so sorry you’re going through this.. 

I completely understand where you’re coming from in wanting to shield your children for as long as possible.  I don’t know what I would have done had mine been younger. 

While going through my sisters cancer journey with her, my biggest fear, ‘should it ever happen to me’, was telling my ‘boys’ ( both in their 40’s) .

I think the only reason I told mine pretty much from the word go was that I was high as a kite on morphine at the time. I’d  had a scan of some sort for a hernia/twisted bowel, they told me they thought they’d found secondaries and both my boys were there..  That was this January. 

Since then I’ve been honest about my diagnosis, treatment, etc etc. I’m stage 4 but my last scan showed no progression to major organs  .

I have not asked about my prognosis, I don’t want to know..  It would make things too real & take hope away. 

I’ve taken every treatment offered, had the chemo, a big operation, more chemo, and am now on Avastin to prevent further spread.  My boys and grandchildren ask questions and I answer them honestly.  My grandchildren, 11 & 13 took it surprisingly well, they are ok as long as I am .  

I go from periods of happy disbelief to being scared and realising my time is limited & I have so much to do..  I think it’s all part of the journey we’re on & it’s good to have somewhere to come where you know people fully understand you..

Strangely enough, though I was scared of my first chemo, it helped being among a lot of people who understood, I felt less alone and found we could all laugh together at the strange affects of chemo no one tells you about..

You’ll get through this Paul, you’re not alone xxx