Devastated

[Janex]

Hi unfortunately it has been a terrible Christmas and New Year for our family as my husbands oesophageal cancer has spread. He had his op in Feb 14 and fought so hard 2 get well. He had pneumonia in Sept 14 and had a scan done with clear results and now it is in 3 other places. we are devastated! He is getting a bit of radiotherapy and palliative care. He's only 48 and we had so much still to do. Best wishes and thinking of all of you who are fighting this battle and their carers x

[SteveJ]

HI janex I'm so sorry to hear you'r awful news. My thoughts are with you.

Kind Regard

Steve

[margie1]

Hi Janet so sorry to hear this

Thinking of you xx

[yorkshirerose]

Hi Janex

So sorry to hear your news. Know that we are all thinking of you and your husband. Sending you a hug and positive vibes

Edwina xxx

[listen]

Hi Janex

Very sorry to hear that it had spread. Hoping the radiotherapy will kick it out you never know! I will be praying for you and your husband!

Lisa

[Hidden]

That is rotten news, isn't it! It shortens the horizons and makes you think you don't want to delay the things you still have time for, doesn't it. There will be places and friends to help you through this, sometimes from where you would never have expected it - and there is always OPA_Charlie's circle too.

With our very best wishes

Alan

[Mikey2711]

So sorry to hear your sad news, thinking of you both

Mike

[pferries31]

Thoughts with u all x

[valruss]

I'm so sorry to hear your devastating news especially as your young husband has been fighting so hard to recover. The OPA was a brilliant source of help and comfort when I travelled this journey with my husband and if it is any comfort to you, my husband and I found a closeness and deeper love than we could ever have envisaged. Although it was difficult, we kept a positive attitude throughout radiotherapy and the ensuing palliative care and as Alan rightly says, your horizons might be shorted but you will find there are many friends and professionals to help you along the way, that you need never feel alone or frightened. Keep strong for your husband and my thoughts are with you.

[sallym]

At a time like this, that wall of support is building up behind you already.

Help sometimes comes from unexpected places.

Thoughts are with you, look after yourself as well. Sally

[Steve101]

Words are so inadequate at times like this. Suffices to say thoughts and prayers are with you.

God bless

Steve

[shamrock]

My thoughts are with you

[AlanWare]

Pl

[Lynleahy]

I so feel for you and having been in your position myself know a little of what you are going through. My advice to you is to cherish every moment you can with your husband, miracles can and do happen, but this is an insidious disease and will steal from you whatever it can. I had a wonderful support in our local hospice- once we had both accepted that was the best place for us - and am still receiving that care and support seven months after losing my husband. I do agree with Valruss that our closeness seemed to deepen as did his relationship with my daughters, it's a strange thing to say but there was something so very special in those last months , painful as they were. Take comfort and strength in knowing you are not alone.

Lyn x

[AlanWare]

I went to anticancerinfo.co.uk. I tried the apricott kernals. The blockage in oesophagus was gone before they started me on chemo. Anything is worth a try. My thoughts are with you

[AlanWare]

I went to anticancerinfo.co.uk. I tried the apricott kernals. The blockage in oesophagus was gone before they started me on chemo. Anything is worth a try. My thoughts are with you

[Melvy]

So, so sorry to hear about your husband. Try and keep strong, miracles do happen. My thoughts and prayers are with you. Melvy

[stuartg]

Dear Janex

I really feel for you and your husband, especially after receiving the earlier clear scan result. I try to stay positive, which has really helped my wife and our family, and I know you will receive all the support you deserve. Thinking of you,

Best wishes,

Stuart

[janiehun]

Hi Janet

So sorry to hear your news. My husband and I went to hell and back but can't imagine what's going through your mind. Whatever happens you must go through it together and take one day at a time.

My thoughts and prayers are with you both.

Best wishes

Jane x

[Rainbow12]

Hi I'm so so sorry for you to be in this situation, unfortunately I lost my 47 year old husband last October due to this terrible disease . Treasure each moment together and if your hubby has good energy levels, do all those things you have dreamt of doing. The local hospice provided excellent support to both husband and my family, so suggest you look into what help is available to you. My thoughts are with you xxxx

[Janex]

Thank you so much all of you for your supportive messages. It's good to know others understand what we are going through as we often need this as we are battling. Best wishes to all of you fighting this disease and those who care for them x

[Janex]

Thank you so much all of you for your supportive messages. It's good to know others understand what we are going through as we often need this as we are battling. Best wishes to all of you fighting this disease and those who care for them x

[Shack]

Dear Janex,

I don’t know what to say to you other than I do know what you’re going through.

I’m turning my whole cancer experience into a book, and I actually thought I’d just about finished it when my world was shattered yet again, just as yours and your husbands has been. I also don’t know whether the abridged story of my latest experience will be of any help to you or other members of this wonderful OPA… but maybe it will, in some small way, remind you that you’re not alone, and where there’s life there’s hope.

I had my operation on Nov 7th 2013. It was the full Ivor Lewis oesophagogastrectomy, and it’s taken a year and a great deal of pain and frustration to get this far. I’m sure you know what I mean.

On Monday 1st December this year I say a word or two to my mum who died a year ago, when I lay in hospital wrestling with this cancer thing.

About mid-morning I get a phone call from Mr B’s secretary to make an appointment to attend ward 17 for as soon as I can to discuss the CT scan I’d had. Yep, no problem, we organise this for Thursday. I do in fact have an appointment to see him early in January, the statutory three monthly one, but I’m thinking maybe he just wants to get this done before the holiday season. At our previous meeting he’d told me that everything was looking really good. My health has improved a lot, and everything seems to be on the up.

On Tuesday 2nd I went to the funeral of my lovely friend Vonnie, who fought cancer well for the last year and a half.

On Wednesday 3rd I go to see my doctor to get something stronger for this tortuous sciatica I have just now. Sciatica is a symptom of compression or damage to the large sciatic nerve that originates near the bottom of the spine and runs through the buttocks, down the back of both thighs, and then splits into two to carry on down the front and side of each leg. In short, it’s a real pain in the ass.

After he sorts that out he asks me if I was going to see my consultant soon about the results of the CT scan I had a few weeks ago. I start to smell a rat about now, especially as Toni (my partner) has told me that Mike G (specialist nurse) saw her in the corridor at the hospital and suggested she be present at this meeting. I didn’t expect any of this, thinking that sciatica was the only subject on the agenda, and for some reason my newly arranged stomach is turning and the hairs on the back of my neck are standing up… I tell him that I’ve got an appointment for the following day.

“I have the results of the scan here if you want to know them beforehand”

He wasn’t smiling when he said this, and I instantly get the feeling that I’m about to be told the one thing I just do not want to hear.

“Okay Doc, just tell me”

“Well… the results show you are all clear on what you’ve had done, but there are some… ‘suspicious’ um…nodules

in your lungs. There are three actually, one in one lung and two in the other”

I let this sink in for a few seconds, though it seems like a lifetime, and the first emotion I feel is one of anger…

“Oh for ****’s sake…are they, is it… are they cancerous?”

Doctor F scans his screen again and it’s obviously non-committal enough to allow him room to assume a position on the bloody fence,

“Well… its not known for sure… but they will be offering treatment, so at least that’s encouraging.”

“What sort of treatment”

I can’t quite remember what else was said, I think I’m in shock or something. It all seems so much worse than it did the first time round. I feel sick. I’m sure I think he talked about radio-therapy, and I think I’m sure I said ‘Oh goody…haven’t tried that yet’ in an attempt to deal with this somehow… I don’t know to be honest. Whatever else we said at this meeting is more or less a blank, but I do recall asking if this is the same cancer that has spread or a completely new one. He said that this wasn’t really his field of expertise, and that Mr Bennett would be able to tell me more. I left his surgery in a daze, and I just sat on the bike (while he sat on the fence) for a while in the freezing cold, staring at the clouds of my now cancerous breath, trying to make sense of it all.

I’ve done this cancer thing… haven’t I?

I beat it… didn’t I?

I’ve been to that dark place and felt the pain. I don’t want to do this again. I can’t do this again.

F****** lung cancer. You complete and utter bastard. If I could blow you to hell I f****** would… me too if that’s what it takes to stop you, you… Whoa there sunshine! That’s enough of that… Look at it another way.

Thursday 4th Dec.

I arrive on ward17 in good time for my meeting with Mr B and Mike G. Toni is due to join me any time now. Mr B arrives, still in his theatre gown by the look of it, and shows me to a private room where Mike G joins us. We shake hands, and the meeting starts with Mr B goes something like this…

“We’ve had the results of the CT scan you had on 20 November”

I decided not to say that I’d already talked with my GP. I just wanted to see how Mr B would approach it.

“Everything is all clear at the operations sites…”

So far so good… “but we’ve found some ‘suspicious’ nodules in your lungs,” he pauses then adds “three of them in fact.”

As he’s saying this he’s bringing my scan images up on the screen, and I get a bit closer so I can see what he’s talking about. He’s murmuring numbers and navigating through the 3D images on the screen.

Just then Toni enters the room and he starts all over again for her benefit. Back to the scan pictures and he points to a small white blob on the screen “There’s one”. This is repeated three times before we all draw back from the picture show and resume our seats.

“You have two of these ‘suspicious’ nodules, one in each lung at about level with your heart, the other being higher up on the right.”

I thought I’d try my luck again, “Is it cancer?”

“Because of your recent history we’ll be treating it as it is”

“Well, on a scale of one to ten… is it cancer… What else could it be… Is it the same one or a completely new one?”

I’m a bit concerned at the lack of forthright engagement from Mr B, this is not like him at all. Or maybe it’s just my imagination… I am a bit shocked still, and I’m getting more and more angry as time goes on, not with Mr B or Mike or anyone, just at this whole bloody thing.

“I’d say about an eight or a nine” he says, “It’s most likely metastasised from your original site, and we haven’t picked it up until now.” still avoiding stating whether its cancer or not.

“So what are we going to do about it?”

“We’re going to try it with chemotherapy first, the same regime as you had before. There’s a chance it won’t respond too well to the same stuff, so we’ll tune it as we find necessary.”

Around about now I get quite nauseous just at the memory of what it was like a year and more ago, and I try and fail to find anything encouraging about any of this new situation.

At this point Toni asks “Can’t you scoop it out?” referring to a procedure she obviously knows about.

From his vantage point of the fence, Mr B says that ‘isn’t an option at the moment, that we’ll wait to see what the chemo does.’

“How about radiotherapy?” I ask, thinking back to what I thought Dr F had mentioned. Mr B brings the images back on the screen and says, “These nodules are not localised, so that’s not really an option. They need to be closer together.”

I need to recap a bit, so I ask

“Is this ‘suspicious’ going to kill me?”

“Possibly… eventually… but not yet”

“Are we looking at a curative solution?” I press on, feeling a slight relief at this apparent stay of execution.

“It depends on how the chemo works”

If I didn’t already owe him my life, and if I didn’t like him so much… I am sorely tempted to knock him straight off that f*****’ fence…

I stand to leave and he tells me I have an appointment with Ms ? the oncologist for two weeks from yesterday (Wednesday)

I look Mr B straight in the eye and ask, “Will you still be involved?” He smiles and says he will. I take some comfort from that.

I shake hands with them, and I shake my head too, trying to get some clarity, but all I can say is,

“That’s enough for now… I gotta think about this”

Mike says to stay in touch.

Well guys, looks like ‘Here we go again’, and I gotta say… I could live without it.

The Lowdown

Toni and I went to see my ‘new’ oncologist, Ms P, this morning. She is a woman of middling years, nicely spoken, and she has a confident, ‘no bullshit’ sort of attitude.

She got the ball rolling by asking me about my present state of health; what drug regime I am on, and what I understood of the reasons I was there talking to her.

I told her of this ‘pain in the arse’ sciatica; the ongoing battle with ‘dumping syndrome’ and reflux, and listed the medication I was taking for each.

Moving on to the cancer of the moment, that is the ‘three little white dots’ in my lungs, she tells me pretty much the same as I’d already heard from Dr F and Mr B. When I ask her whether the proposed chemo treatment is simply a way of delaying the inevitable as opposed to a curative solution, she does clear up any misunderstanding I might have by saying this is not a curative measure. In fact there is not really a curative option, a possible re-sectioning of the diseased areas not being suitable as the metastases ‘spread’ is not confined to one area but is in multiple sites.

(I know I’m making this all sound rather clinical, but it’s the easiest way for me just now)

At present there is no way of knowing how fast these nodules or lesions (or spots) are growing, if at all. They are still very small, and she feels that a wait of two months or so before having another CT scan would be very beneficial, as measurements could then be taken to record the rate of growth and the nature of the same.

There would no benefit at present to pile in with an aggressive chemotherapy regime, as it may have very limited effect and I would then be putting myself through a good deal of chemo side effects again without having much, if anything, to show for it. This makes perfect sense, as at the moment I’m having no problem breathing or any pain from these damn things.

In answer to my further questioning, she assures me that waiting until we have a better picture of what’s going on will have no adverse effect on me. To put it another way, I suppose you could say that we need to see which way the thing is gonna jump before we take what measures we can.

Those measures are, however, only re-active; there’s nothing really pro-active to do other than sit and wait. So, ‘Is it gonna kill me?’

When Mr B said ‘Possibly… eventually… but not yet’ he was giving as good a summing up of this whole thing as I’m likely to get, giving their propensity for fence sitting. Ms P said the same thing in more or less the same words.

This thing is almost certainly going to kill me sooner or later, and it is that which must now be addressed. The plan is to keep me alive with as good a quality of life as is possible, for as long as possible. I know asking her for a time estimate is really a ‘non question’, but I can’t resist. She says that depending on …etc. I may have months, perhaps a year, or more, it really is impossible to say. Chemotherapy is, it appears, the only viable option at this time (well, soon anyway).

You can rest assured though, I plan on sticking around for a good while yet. My fate, as they say, is in the lap of the gods.

[Janex]

Dear Shack

Thank you for this most informative insight into the world of cancer and how cruel it can be. You summed it up so well with all the emotions of anger and fear. I wish you all the luck in the world and if you do publish your book please let me know as I would be interested to read it.

Best wishes

Janex

[Shack]

Thank you for your kind words Janex.

I will be pleased to let you know about the publishing of the book. I am still in the editing stages at present, and I had nearly finished when this latest trial raised it's ugly head. Nevertheless, I shall carry on and get it done, even if I have to leave it open ended haha... I had wondered about where to finish it.

From the bottom of my heart I wish you and your hubby well, and remember that it ain't over 'til it's over. x

[cherrybailey]

So sorry to hear your awful news Best wishes hope treatment works and 2015 a better year!