The waiting is the hardest bit

[EdJ]

Very moving thread. Good luck.

[hornetrider]

Indeed this is a very moving thread. All the best to you both.

[blearyeyedboy]

I'm still listening (reading?) and keep wishing you well.

[Broomsticklady]

drivin_me_nuts said:

5FU produced a week of exploding stomach syndrome and made her very hot at nights and oral thrush which still hasn't gone and for which there seems to be little by way of effective medicine.

For the heat at nights, try a Chillow - it helps me with my hot flushes - the menopause I sailed thru first time, then they put me on hormone treatment which brings it on again - and this time I'm suffering! Somehow a cool head seems to help the other bits cope!!

Oral thrush is no fun - but make sure she's not got vaginal thrush and if she has is getting it treated - that I had and was too crap with the other effects to get on top of, and I wish I had - it made me really uncomfortable but with all the other things going on I 'ignored' it and wish I hadn't - I'd have felt better without it. I take it you've tried the pineapple chunk route for the general mouth discomfort - I know you said earlier boiled sweets were now an option and pineapple's sposed to help?

drivin_me_nuts said:

I am worried about the radiotherapy bit. There are a few what if questions lurking around the back of my head - the what if he says it's not an option, is surgery really going to work? What if it's too radical. Quality of life is everything - she's too young for the type of radical surgery on offer, so what then - is the care going to be palliative?

I know it's not easy but 'what ifs' are really not helpful. Someone put it to me once that if I saw a box labelled '12 cans of Heinz Baked Beans' I'd panic about lifting it up and worry about how I'd do it - then when I discovered it was an empty box I'd kick myself for worrying - same kind of thing... You say she's too young for radical surgery - she's definitely too young to die!! If radical surgery is an option and its success rates are reasonable and the surgeon is confident he can do something and isn't just 'experimenting' - isn't the possible alternative worse? But it may not come to that - sounds to me as if the meeting of all the brians involved after cycle 2 is administered is where a lot of these things are going to tossed around. Does she have a specialist nurse? Most cancer patients have a specialist - I had an excellent Breast care nurse who hasn't bull stted me about my prospects and its easier knowing - and sometimes they speak in the english the oncologists forget!!

drivin_me_nuts said:

We have so much to do in our lives, so much good stuff going on at the moment and so many plans in the pipeline that this could not have come at a worst time.

Hang on to the good stuff - hang on hard!! The bad stuff's been and gone - try and put it behind you - OK there'll be tough times ahead, maybe tougher than it's been already, but hang on to all the good stuff you've had and what you've got - each other - it doesn't get better than that. And keep talking to her - there's nothing worse than her knowing you're stewing but you're not talking to her about it - trite I know but a problem shared... And women hate knowing that the man they love is keeping something from them!! OK, smooth over the really stty thoughts, but keep talking and try to be honest - she'll know if you're fibbing!

drivin_me_nuts said:

...at times I wonder about the 'other future' , the one with just me in it and it feels like an utter void of complete nothingness. I know this is a work in progress, that you take every day, day by day, but sometimes, just occasionally I hear the very scared voice in the back of my head - the one that is scared of loss and dying and is full of fear about the future. I try to reason with it, to make it see sense, to help it understand that this is just a process that we are going through and yes, it's ok to be scared and yes it's ok to lie there at night till the early hours thinking nothing, yet thinking a million thoughts at the same time. Sometimes it seems reassured - yet I make it no promises, yet other times it says 'promise me it will be ok' - to which I reply, I cannot, because I don't know myself.

Jees you make me cry here - I go thru this from the other side - how's he going to cope without me? And it's hell, pure hell. and I don't know what to say other than my heart goes out to you - maybe we should have a pact - I look after your lady when she gets there and you look after my OH when I leave him. That scared voice - it can't listen to reason - it's too scared. I tell it about the good times and how our lives woul;d have been so different if we'd not met, and tell it not to worry - it doesn't pay attention, but it#'s the best I can do. Be kind to it - don't lose your temper with it - it's not its fault all the bad times you're going thru.

drivin_me_nuts said:

Please universe, give us the strength to remain strong and resolute throughout this.

You'll do it - you know deep down you will - you'll do it for her. and when it's over, whatever the outcome, you'll know you did your best.

If I've over stepped the mark please tell me and I'll disappear into the ether from whence I came - you just strike such a chord in my heart, it hurts and I feel I have to what little I can to maybe help an iota - if I hurt you more please just tell me.

[drivin_me_nuts]

Broomsticklady said:

drivin_me_nuts said:

5FU produced a week of exploding stomach syndrome and made her very hot at nights and oral thrush which still hasn't gone and for which there seems to be little by way of effective medicine.

For the heat at nights, try a Chillow - it helps me with my hot flushes - the menopause I sailed thru first time, then they put me on hormone treatment which brings it on again - and this time I'm suffering! Somehow a cool head seems to help the other bits cope!!

Oral thrush is no fun - but make sure she's not got vaginal thrush and if she has is getting it treated - that I had and was too crap with the other effects to get on top of, and I wish I had - it made me really uncomfortable but with all the other things going on I 'ignored' it and wish I hadn't - I'd have felt better without it. I take it you've tried the pineapple chunk route for the general mouth discomfort - I know you said earlier boiled sweets were now an option and pineapple's sposed to help?

drivin_me_nuts said:

I am worried about the radiotherapy bit. There are a few what if questions lurking around the back of my head - the what if he says it's not an option, is surgery really going to work? What if it's too radical. Quality of life is everything - she's too young for the type of radical surgery on offer, so what then - is the care going to be palliative?

I know it's not easy but 'what ifs' are really not helpful. Someone put it to me once that if I saw a box labelled '12 cans of Heinz Baked Beans' I'd panic about lifting it up and worry about how I'd do it - then when I discovered it was an empty box I'd kick myself for worrying - same kind of thing... You say she's too young for radical surgery - she's definitely too young to die!! If radical surgery is an option and its success rates are reasonable and the surgeon is confident he can do something and isn't just 'experimenting' - isn't the possible alternative worse? But it may not come to that - sounds to me as if the meeting of all the brians involved after cycle 2 is administered is where a lot of these things are going to tossed around. Does she have a specialist nurse? Most cancer patients have a specialist - I had an excellent Breast care nurse who hasn't bull stted me about my prospects and its easier knowing - and sometimes they speak in the english the oncologists forget!!

drivin_me_nuts said:

We have so much to do in our lives, so much good stuff going on at the moment and so many plans in the pipeline that this could not have come at a worst time.

Hang on to the good stuff - hang on hard!! The bad stuff's been and gone - try and put it behind you - OK there'll be tough times ahead, maybe tougher than it's been already, but hang on to all the good stuff you've had and what you've got - each other - it doesn't get better than that. And keep talking to her - there's nothing worse than her knowing you're stewing but you're not talking to her about it - trite I know but a problem shared... And women hate knowing that the man they love is keeping something from them!! OK, smooth over the really stty thoughts, but keep talking and try to be honest - she'll know if you're fibbing!

drivin_me_nuts said:

...at times I wonder about the 'other future' , the one with just me in it and it feels like an utter void of complete nothingness. I know this is a work in progress, that you take every day, day by day, but sometimes, just occasionally I hear the very scared voice in the back of my head - the one that is scared of loss and dying and is full of fear about the future. I try to reason with it, to make it see sense, to help it understand that this is just a process that we are going through and yes, it's ok to be scared and yes it's ok to lie there at night till the early hours thinking nothing, yet thinking a million thoughts at the same time. Sometimes it seems reassured - yet I make it no promises, yet other times it says 'promise me it will be ok' - to which I reply, I cannot, because I don't know myself.

Jees you make me cry here - I go thru this from the other side - how's he going to cope without me? And it's hell, pure hell. and I don't know what to say other than my heart goes out to you - maybe we should have a pact - I look after your lady when she gets there and you look after my OH when I leave him. That scared voice - it can't listen to reason - it's too scared. I tell it about the good times and how our lives woul;d have been so different if we'd not met, and tell it not to worry - it doesn't pay attention, but it#'s the best I can do. Be kind to it - don't lose your temper with it - it's not its fault all the bad times you're going thru.

drivin_me_nuts said:

Please universe, give us the strength to remain strong and resolute throughout this.

You'll do it - you know deep down you will - you'll do it for her. and when it's over, whatever the outcome, you'll know you did your best.

If I've over stepped the mark please tell me and I'll disappear into the ether from whence I came - you just strike such a chord in my heart, it hurts and I feel I have to what little I can to maybe help an iota - if I hurt you more please just tell me.

Dearest Nina,

no, not at all. Your thoughts and kindness are appreciated beyond measure. That you took the time to write these thoughts leaves me grateful beyond words.

Thank you

[mrsxllifts]

Edited as stupid phone posted text mid typing.

Edited by mrsxllifts on Tuesday 20th July 17:41

[mrsxllifts]

Hi, I can't offer anymore than what has already been said except some practical advice really. When I have went through a similar thing a few years back, a very old neighbour suggested natural yoghurt for my thrush, both sorts. I thought she was mad but was willing to try anything by that point. But it actually worked, spread on the affected areas or eaten if possible, although it tastes evil. It did make me giggle when I asked her how she managed to eat it and she replied that it was ok with a tot of brandy mixed in!

Also, there are many gadgets and gismos out there that can help both you and your goodlady doing daily stuff. Somethings more obvious than others. If you get a few spare minutes (not easy, I know) have a look through some websites, you may just see something that may help.

Sorry I can't help anymore.

Hugs and hope from all in the X L house.

[drivin_me_nuts]

mrsxllifts said:

Hi, I can't offer anymore than what has already been said except some practical advice really. When I have went through a similar thing a few years back, a very old neighbour suggested natural yoghurt for my thrush, both sorts. I thought she was mad but was willing to try anything by that point. But it actually worked, spread on the affected areas or eaten if possible, although it tastes evil. It did make me giggle when I asked her how she managed to eat it and she replied that it was ok with a tot of brandy mixed in!

Also, there are many gadgets and gismos out there that can help both you and your goodlady doing daily stuff. Somethings more obvious than others. If you get a few spare minutes (not easy, I know) have a look through some websites, you may just see something that may help.

Sorry I can't help anymore.

Hugs and hope from all in the X L house.

Thanks for the advice. Yoghurt was first on our list of options - we ususally eat several large cartons of it a week and it's definately somthing that has been missing from our diet. However, as she has a feeding tube directly into her shomach, we are limited to medicines, water and nutricia food products. We asked the hospital dietician about yoghurt and it was a very firm no as regarding the possibility of a leaky gut and 'foreign' bacterial infection.

Diet is high energy 2.4 cal/gm drinks, but the really really good news is in the last three weeks she has put on 2 kilos. This reperesents about 8% of her body weight so this is no insignificant achievement!

[Akayfortyseven]

First post here, but have to say this thread really got to me, I admire your resolve and attitude through all of this.

My step-mum got non-hodgkins lymphoma last October, and within a week she had passed away, a healthy 41 year old mother of 2. As you said, the waiting was the hardest part, she went in with a 'pain' and by the time it was diagnosed she was already to far gone. Such a cruel disease, absolutely changes everything.

So glad to hear things are looking up. Nice to hear that good things and experiences can come out of something so terrible if that makes sense.

Hang in there.

Edited by Akayfortyseven on Tuesday 20th July 18:55

[drivin_me_nuts]

A date with the Alien 2.

So the fortnight has gone by now and bright and early tomorrow morning we have to be up and at the cancer centre for the cool cap and the joys of chemo. There are a few more signs of the side effects; hot flushes that are becoming more pronounced, especially after eating and aches and pains that have left her pale and utterly knackered at times, oh and hair that seems to be very prone to falling at the slightest of touches. That surprises me in some respects, that it has taken so long for that effect to show through. I hope that that particular side effect keeps to a minimum.

Our lounge is now becomeing better stocked than the local pharmacists, from teh range of drugs to the range of dressings and associated gubbins surrounding a feeding pump.

My poor lass is knackered. Sleep has become three hours of sleep followed by full wakefullness and eating that starts at 7am until about 10pm. Mind you, the difference is now very noticeable and her weight has now gone up significantly over the start and her curves are returning and her hip bones disappearing slowly. Christ that was scary, but it's all positive now and most definitely in the right direction.

As for the mental state. Well that has been interesting. Tumours are interesting little buggers. Have one inside and it becomes something to be imagined i.e. you imagine what it looks like and you think the worst. Have one on your neck (about the size of half a large orange) and you are not spared the 'luxury' of imagination and the opportunity to forget it for a moment. That took some working through - being comfortable touching it and accepting it for what it is. We made some more jewellery a few days ago, a couple of large necklaces with blue lace agates, citrines, carnelians, turquoise and a host of other stones and in some little way it helps to keep things normal and keep my lass feeling good. Life with cancer is small victories that together combine to make large differences.

Thank you Nina for the suggestion of a cool pillow. I am also going to buy one of the bed covers so that she can lie on something cooling as well.

Thanks again for all your support and kind words and your generosity of spirit and thoughts has been most welcome. I showed my lass this thread on Sunday - other than the look of 'you'll need to do better than that for a marriage proposal!', I think it helped her to understand where I am as well.

Tonight I shall dream of activated B cells, NK cells on duty, T cells, Macrophages and Phagocytes doing there bit in the war against this invader. I shall set the alarm clock early to have a few more minutes of conscious cuddles before the day beckons forth. Peace to you all.

Edited by drivin_me_nuts on Wednesday 21st July 23:23

[staceyb]

Fingers and toes crossed for a good chemo session DMN & Mrs DMN.

[IforB]

drivin_me_nuts said:

A date with the Alien 2.

Mind you, the difference is now very noticeable and her weight has now gone up significantly over the start and her curves are returning and her hip bones disappearing slowly. Christ that was scary, but it's all positive now and most definitely in the right direction.

The fact that she is putting weight on is a fantastic sign, yes some of it might be from the steroids, but you lose weight because you are using so much energy feeding the cancer. The fact that there is now food available and she's able to get proper sustenance too, is superb.

drivin_me_nuts said:

Life with cancer is small victories that together combine to make large differences.

Amen to that. Keep taking those small steps, after a while you look back and see how far you have come without really realising it.

Keep it up, you have everyone here rooting for you both.

[Kneetrembler]

staceyb said:

Fingers and toes crossed for a good chemo session DMN & Mrs DMN.

+1

[jokane]

WOW you are both so brave. I have just had MRI on my brain, neck and back. not sure whats wrong yet. im prepared for the worse. but reading your blog has given me a lift. All those people on hear giving you support, brilliant. Good luck to you both and keep the faith.

[blearyeyedboy]

Still rooting for you. Best wishes for the few days ahead.

Edited by blearyeyedboy on Thursday 22 July 21:56

[mobi]

Fingers crossed that everything goes as it should. You and your fiance have a closeness that a lot of us could only dream of. Good luck xx

[drivin_me_nuts]

The Alien is one cold SOB...

Well this time it was harder. Harder to tolerate the cold cap, harder to go through 8 hours plus of sitting in a chair... To give you some idea, it starts with some premed; 2 different antisickness meds, with buffers between to clear the lines. A cool cap for almost an hour before Docetaxel taken over one hour then almost another hour of cool cap followed by more buffer, then Cisplatin over two hours and then a a bag of saline over an hour. Then fitted with a vacum pump with flourouricil to be taken over the next 4 days - self contained in a handly little vacum pump. I think by the end of the cool cap she was mentally screaming and she described the pain behind her eyes as her eyes literally being pushed out of her skull... Lets hope it works because it took her the next two hours to warm up (that with two heated pads wrapped around her feet and legs and two blankets throughout). She's one tough cookie my missus and has a very high tolerance to pain but I think this time the cold cap was pretty tough.

Oh joy, we are moving on to different meds for the thrush. Lets hope they work becase by some very considerable margin this is the most miserable and unpleasant side effect. 5fu brings diahorea and they all trigger hot sweats, but thrush has got to be up there as one of the most unpleasant and self aware effects going. It's just horrible. No other word to describe it.

More food arrives tomorrow - we've been mixing and matching and have finally settled on a really good eating regime. This along with cooling pillows and a mattress and I hope that with the forthcoming warm weather these go some way to aleviating the effects of the metabolic heat.

Yet again I cannot thank highly enough all the staff at the cancer centre. Their dedication, compassion and more than anything else, their sheer professionalism is a huge credit to their various disciplines. Without their positive attitude and the quietly efficient and charming way they carry out their work this whole process would have been a lot more stressful than it is.

One other thing I am learning with being the partner going through this is that though cancer can at times strip your emotions bare and leave you feeling very exposed, it also does something else that's actually very positive. That is, it lets you focus on what is important and gives you the opportunity to work through all your fears, all your worries, all your nightmares, all your anxieties, all your 'darkest places'. Yet, here's the 'trick' - don't ever be afraid of going to the worst place, don't ever be afraid of fearing, or worrying about life 'afterwards', of 'what if's'. Yes, the what if's will still be there, yes, sometimes the scared voice takes over for a while, but there is also something else much deeper underneath. It's the stronger stuff - the stuff that makes the yew bow stretch in tension, harden in compression and then, spring back with a greater power. It's that inner belief and strength that deep down we know we can.. no, we will get through this. We owe it to ourselves, I owe it to me and I owe it to my lass too.

(what's the betting that the sodding courier knocks on the door at 8am exactly ...)

Night all.

[NoNeed]

You are in my thoughts and prayers too. I hope it all goes well.

[blearyeyedboy]

Much man-hugs. Keep on fighting- it's rough at times but you're doing well.

You two are an inspiration.

PS- It took me ages to find some food I could tolerate before I realised that Marmite did the job for me. I'm not saying Marmite's going to be right for your missus-to-be, but don't lose heart with trying different foods to find something that she can manage.

[drivin_me_nuts]

And then the wheels fell off the wagon ..

Oh it was going so well. Chemo started on thursday and ended today. Big yay to that I hear you say.. Well yes, in theory but the last few days of feeding during chemo have become increasingly exhausting. So there we were today disconnecting the 5fu bottle and I asked the nurse to look at her stoma. Umm... ok... how's the temperature doing... 38.1.. OK, right now we need to take some antibiotics and something for the thrush.. that is running rampant and the stoma which is now locally infected. So where is my missus? Back on the ward.

I hope that this is just a temporary thing and the level 3 antifungals and antibiotics they have given her will mean she comes home tomorrow or wednesday. Perhaps, as this is a car forum we can refer to this as little more than a pitstop for a tyre change and a something or other.

WRT the chemo - something seems to be happening. But with all this thrush and crud and whatnot, it's nigh on impossible to tell. This is the second time in two months that I have had to leave my lass in hospital at stupid hours. I tell you what, it doesn't get any bloody easier second time around. That's for sure.