The waiting is the hardest bit

[drivin_me_nuts]

IforB said:

When I was in treatment, I was always told that if my temperature was above 37.5 for more than 2 hours then I was to get in touch immediately, above 38 and it meant an instant phonecall and visit to the ward.

Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.

I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.

You're both doing brilliantly. Keep it up.

IforB, thanks for the reply. Other than paracetamol and a few 'just in case' things for constipation she has no other meds to take. So in that respect crossed fingers we're doing well. The mornings are the worst. This morning was hard - just as she gets off to sleep the phone rings or someone knocks on the door and getting back to sleep becomes hard. But like I said so far so good(ish!)

[drivin_me_nuts]

Chemo cycle 1 is coming to an end this week and cycle two starts this coming thursday. The plus signs so far, the pain that was in the ear is now gone, the sense of restriction in the throat easing slightly. The bad bits, the tumour shows no real sign of diminishing and the first consultant visit last weeks mentioned surgery - something that he was not really willing to discuss earlier. Chemo side effects so far border more on the side of inconvenient than miserable. 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. I suspect it's going to have to be one of those things she will have to put up with.

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?

There's a big meeting after the second round - all 15 odd people in the room discussing what the plan of action will be. The beginning of August looks like it's heading into real decision time and for the first time really I think I am feeling real anxiety about the future. 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. Still, I suppose I hold the thought in my head 'what doesn't kill you makes you stronger', yet 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.

It's sunday afternoon and we're sitting here quiety doing very little. I want to go back to bed - maybe if I pull the duvet back over my head i'll wake up and this will all have been a bad dream. Yet even as I write this, I feel the other side of me - the stronger side that says, no matter what, we'll get through, that life goes on, that you are so blessed to have eachother and that together you are both unbreakable. Please universe, give us the strength to remain strong and resolute throughout this.

[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

[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!

[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

[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.

[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.

[drivin_me_nuts]

This has been the day from hell. There is no other way to describe it. It has been almost 48 hours of exhausting stress, anxiety, miscommunication, delay, inaction and frustration, mixed in with real help and every now and then someone doing something that really made a difference. We left at 3 pm monday, we came home at 5am wednesday. She has had 2 hours sleep, just enough fluids and 300 calories in all that time.

When the system works it's great, when it doesn't work it leaves you frustrated, angry, waiting and incapable of getting anything done. She is exhausted beyond anything I have ever seen - even when she ran a restaurant whilst doing her degree, it wasn't like this. This was something else, someone close to snapping through complete and utter biochemical exhaustion, mental fatigue, lack of food and utter sleep deprevation. She has just gone off to sleep for a handful of hours before the hospital beckons again. This has turned into the week from hell. How she survived the last two days I don't know, but Jesus bits of the NHS are screwed beyond measure. Bits of the processes are minutes from collapse. I also learned something else very valuable. When consultant arrogance and ego get in the way of patient choice and careplans, the implications for the patient can be catastrophic. All this could have been avoided. Every single minute of infection, discomfort, anxiety and stress. And if you don't push, cajole, query, demand, little happens - of that you can be certain and oh yes, carry at least two of everything you ever need everywhere, because feck me, the number of times I have run into people in the hospital saying, sorry, we don't have that is unreal. And these aren't specialist things, they are simple, basic stuffs.

She's home, in the months to come this will be out 'cancer day of hell' story. it's surreal beyond measure. It's not over yet, there's more to do, but what a total utter nightmare it's been.

Night all. Thanks for the support. We live to fight another day, but first rest and food. Oh yes, why's she going back?... becuase the tube can't be used anymore. And it's the only way in, for everything. So the food, the pain meds, everything has to wait. Ha fking ha.

Edited by drivin_me_nuts on Wednesday 28th July 06:28

[drivin_me_nuts]

This morning looked like it was going to be an absolute nightmare, but through the real proactive nature of the staff at the cancer centre it was actually a relatively stressless day. Oodles of fluids in the cancer centre and a some paracetamol.


And dare I say it, dare we even hope, for the first time since this all began she swallowed a little. Loads of gunk and debris being coughed up, still ranging thrush, still a blocked peg, still no food - now probably ketotic(again), but just a tiny amount went down. After the last few day of utter frustration this is like finding a diamond in a elephant dropping!

Temp still hovering around the 37 and a bigish bit but fluctuating, but i'm hoping for her having a decent nights sleep. I don't know if/when chemo tiredness plus the lack of sleep over the last few days will 'hit' her soon. We just need to get to the weekend and then she can rest. In this week I swear she's aged 20 years. That idiot has a lot to answer for.

Thanks for all the support. The NHS is like the little girl in the old nursery rhyme. When it's good, it;s very very good, but when it's bad it's a fecking utter nightmare

Night all

[drivin_me_nuts]

... an end of week update.

Well, after the week from hell, thursday finally ended up with the correct feeding tube and therefore the specialist feeding nurse, who spent over 3 hours late on a friday evening telling us all about what he can do to help in the long months ahead.

The sense of relief that we both felt when he left was palpable and the fact that we can now, finally draw upon his expertise is welcome indeed. Since all of this started, the feeding aspect has felt like a real nightmare and I am so relieved that this crucial aspect is moving forwards well support with a weekly visit and support when we need it.

Another very big week this coming up. MDT part two. A team of fifteen odd people in the room again all deciding the next step. The future is a white piece of unwritten paper. This week, another few lines will be added.

The fork in the road has been reached. Decision time.

[drivin_me_nuts]

Broomsticklady said:

The feeding nurse sounds ideal - nurture him and look after him - he'll know who to kick where and when!!

The multi disciplary meetings are where all decisions are made I gather - I suspect the idea being to make sure 1 ego doesn't go his own private fanatical path but that everyone agrees on the best way forward. They're weekly meetings - at least in Aberdeen - and discuss everyone - so don't be surprised if you don't hear when you expect to - you may have been carried forward. I think this is no bad thing - it means you#'re not top of the urgent list - tho if you do hear straight away doesn't mean panic you are top of et hurgent list - getting in a muddle here but you know what I mean!!

N x

Hi Nina,

he way they do them down here is slightly different. Like the first time, we are going to be attending. They'll insert the endoscope again and so we can see for ourselves what is going on. From what I understand the trust that we are under the care of is one of the few to operate this way, and we prefer it this way.

This way we get to meet everyone face to face and have a proper dialogue with them, be involved in the process, rather than the alternative of being talked about. I can understdand that some people it would be daunting, especially as you get your diagnosis in front of so many people and there isn't much clinical empathy in the room, just years and years of clinical left brain process on show!

After the nightmare of last week and the real frustration of A&E, knowing the next few lines on the page will be positive step forward.

Edit: Just wanted to say thanks agaain for recommending the chillows. They have been absolutely great - one in the fridge and one on the go. We also got a gel mattress cover and that worked ace as well.

Thanks

R

Edited by drivin_me_nuts on Monday 2nd August 17:38

[drivin_me_nuts]

...So the pen scribbles some more ....


Well good news and less good news. Good news is Radiotherapy is on the agenda for the beginning of September. Bad news is the growth is not as diminished as they wanted it to be by the Chemo(but that is often the case with the type of cancer she has). Good news Radiotherapy wide is it the full seven weeks and therefore not palliative. Bad news surgery absoultely not an option.

One thing I hate about the whole medical meeting process is the sheer lack of enthuiasm, motivation or encouragement they show. Are you ready to throw the towel in yet? Err. No. So far, baring the stupidity re feeding tubes chemo has rated probably a 3/10 on the stress and discomfort scale.

Live hard and fight harder. Throw the towel in yet? Sod off, we haven't even started.

[drivin_me_nuts]

Little battles, small victories ...

In the world of cancer every small victory is to be celebrated. Well today is a little big victory. Swallowing... that task we take for granted, the thing we all do without even thinking. Well for the first time since May she can swallow water. It might only be small sips, but the fact my girl can swallow anything at all is a huge great victory. We know during radiotherapy it will probably go for a few months completely, but today, for the first time in weeks she cna swallow properly and that means the process works and the muscles are still working and internally the tumour is reduced. A small step, but one that means in some small way at least, the chemo is working and she is not chemo resistant.

If I tell you i'm smiling from the inside out, believe me!

[drivin_me_nuts]

And so the time has come to take the final chemo ....

Sorry, a bit cheesy, but hey, it's been an adventure. he last one was today and one last chill in the coolcap. A few more side effects show, a lot more bleeding from the throat and the return of the evil thrush. You know it;s bad when you can put your fingers in your mouth and you pull out strands of gunk.. and it's due to get a lot worse when radiotherapy does its bit.

Well the radio sessions are all scheduled and ready to go. CT for mask soon and the whole process will kick off towards the end of this month and into mid september. In many respects my missus has done well, with few of the real miserable sideeffects that others experience such as reactions to the drugs, harderning of veins due to the lines and chemical reactions between the cytotoxins themselves. As before 5FU out Monday and then it's a quiet time before radiotherapy starts. Life is returning to normal and there are two very positive results today. Firstly her weight is still going up and secondly she requires no dental work before the onset of radiotherapy. One thing we have to work out how to overcome is very low BP and dizziness in the morning. Now that's going to take some work what with some of the appointments taking place at 8:15am..

It's been a good week and lots of small, but very positive things have lined up nicely. It sure makes a difference. Good night world, thanks for listening and as always, thank you all for your kindess and support. I'd be lying if I said this was easy or that at times I don't sit there wondering about life after the 'other' ending, but quite seriously, it's good to know that no matter what, there's a daft place on the internet where an oft skewed view of sanity changes lives.... your kind thoughts and kind words make a difference. Thank you.



( On another note. If you are reading this or someone you know is going through this cancer process and they have the opportunity to have a feeding tube inserted, urge them to think about it carefully. It's been an absolute blessing. In my missus's case the need was critical as her BMI was quite literally off the scale at 15 when we started this journey. But the fact that it has meant she has had the calorie input even when she has not wanted to eat, when she's been knackered and sleeping, is a huge, huge advantage. It's interesting listening to other peoples experiences of sudden weight loss and loss of appetite and it does circumvent all of that. You can feed yourself or you can, as we have done and will do again, let the machine automatically feed whilst she gets on with life. It even has a backpack so that she can wear it whilst out and about. )

[drivin_me_nuts]

Chemo's joyful end ...

So it's over. Three cycles, not much by the gruelling marathons some go through, but enough to make a difference. The tumour seems to have shrunk, the surrounding inflamation reduced considerably, swallowing improved somewhat.. all good stuff.

Next step, radiotherapy.

At the start of this journey I wondered how we were going to hope, or actually if i'm really being honest how I was going to cope as my missus was utterly unphased by the whole 'you've got a T4N2M0 tumour'. Interesting how she's dealt with it. Her background and understanding has made a difference and the irony that having spent twenty odd years understanding molecular neuroscience and biotechnology has turned her into her own 'experiment' .. is a twist of humour not lost on me.

Oh well, a pause in procedings, yet another CT scan and MDT meeting to follow plus six months of radiotherapy including recovery. There have been some noteable highlights, including the fact that for the first time in her life she has managed to consume 2400 calories in a day regularly, her size 00 is now slowly becoming a size 0 and some colour has returned to her face and energy to her body.

As for me, I still think at times that this is all a bad dream - some Matrix type reality that I will wake from. Other times I am mindful of becoming the 'carer', a mindset I am deeply resistant to taking on because it (often) permanently changes relationships. Yet other times I resent the intrusion of cancer - in so far as it's a very demanding mistress in terms of hospital visits, processes and all kinds of other things. It does not give you a 'rest' from it, there is always something else to do next, from drug regimes, to feeding timetables to physio exercises, eating, sleeping.

It takes time to take it all on board, time to accept what is happening to you and even more time to get your head around the fact that you have a high maintenance, demanding cancer mistress. I think that's the tough bit.. oh that and watching the person you love more than life itself suffer pain, inconvenience and hassle, in ways you would not wish on your worst enemy.

There is still the odd sleepless night and at times the brain does shift into overdrive wondering about all the 'what if's'. Other times you just carry on and forget. Few friends know, even fewer acquaintances as these relationships also change. So for now, it's us, a few very close friends, some family and at times the readers of the internet..

Does a cancer diagnosis mean the end of the world? No, not really. The hardest part is accepting the diagnosis and ridding yourself of the cancer monster. Do that and it becomes far easier - tedious, boring, demanding and frustrating at times, but not frightning. To get through cancer you have to put as much work into your mind as well as your body, some days even more so. You have to work out your demons, fears and anxieties and go with what ever you are thinking and feeling as right for you at the time you feel or think it. There is no 'right' or 'wrong' way with this. There is just cancer and you. Do what you have to do to beat it / fight it / embrace it / kill it / learn it's lessons - what ever floats your boat and what ever you need to do. Just don't drown under it's tsunami and change every aspect of your life because you live in utter terror of it.

Life goes on. We shall be here tomorrow and he day after tomorrow and the day after that and the ...

[drivin_me_nuts]

... and waiting with a twist of lemon.


necrosis or new cancer? That's the question. Radiotherapy mask created last week, very tight and today was the fitting CT scan prior to the radiotherapy plan. Mask doesn't fit as there is a large growth in front of the existing tumour - so large that she cannot even wear the mask and breathe at the same time.

So now... ultrascan to see for sure. If it's just a cyst then fine, if it's blood then fine, if it's growth then the radio plan has to change and maybe the 'P' word will need to be thrown about ....

Is she bothered? No chance. Not even slightly. I am concerned a little. Fortunately it looks more like a cyst than anything else and I am hoping that it's simply a case of draining it and then carry on. Radio will be delayed by at least a week, maybe two because of this.

Yep, and it's sad to read in the lives of others here that they also have to wait, as indeed; the waiting is the hardest bit. My best wishes to all of you waiting for good news. My thoughts and best wishes are with you too.

R

[drivin_me_nuts]

Broomsticklady said:

End of thread hijack - I hope!! They think it's an arthritic neck and shoulder which is causing the vertigo as 'bits' get trapped et al - basically I'm old and degenerate - and ecstatic about it! Amazing the difference a year makes - if they'd said that before initial dx, I'd have been up in arms!! So xrays to compare with previous ones and if necessary another bone scan, but onc not worried so I'm not either!!

N

Good news indeed Nina!

Biopsy today. On the pain stakes it went to the full 10 and tkk a fair while to come back down to the 5-7 where it has been all day. It looks like a cyst and it's huge and really tender. On the plus side, we were back at work today as well and that was interesting and so very good to be doing what we both enjoy. It's great to be working with someone else and so very refershing to not be talking about cancer for a change - a raft of other stuff just as thorny, but not cancer.

[drivin_me_nuts]

MDT on Wednesday. Cyst now seems to relegated to history though a mess is perhaps the polite way to say how the site now looks. I hope it at least starts to heal before the beginning of radio. It's a relief that it was no more than that, but by god it was painful and in many respects far worse than any of the chemo effects.

So we have been delayed by a week. It's interesting actually, since this started we've used a simple tracing paper to trace the size of the tumour and chemo definitely reduced it. So here's hoping that radio kills it off.

A few worried and anxieties present themselves, but certainlt not as much as when cancer first kicked off. Onwards and upwards. I realise I have slowly turned into a tortoise .... I carry a rucksack absolutely loaded swith stuff she needs, which is mainly the 'stuff' (mainly because I can't spell paraphinalia!) she needs for feeding. It soon adds up. Odd ''side effect for me... when ever I go out without the rucksack I feel like I am missing something. It's an almost paranoid nagging thought that i've left something behind. One of the subtle 'side effects' of cancer I suppose - the fear that she might need 'something' and that I might have forgotten it. Odd how the mind takes you at times. We can handle all the radio and chemo stuff pretty well I think, even reading the outcome stats for her type of cancer doesn't bother us, but the thought of not having something immediately to hand that she needs leaves me feeling very uneasy. I know what it is, it's a twisted notion of not 'letting her down'. But never the less, every now and then it catches me out and it's proving a slippery fear to resolve.

Such is cancer, it's not always the big hooks that grab at you. Sometimes it's the little vicious barbed hooks that get under the skin and take some effort to remove.

CT planning scan this week as well and a very busy few weeks of work lie ahead. It's been interesting working these last few days. Way more energy than when staying at home. Today was a fantastic day. Did some awesome work with a client and just before the sun went down we got to walk the seafront in Hove. The sunset was truly breathtaking. A day of magical memories. May there be many thousands more.

[drivin_me_nuts]

anonymous said:

[redacted]

Sorry to hear this. It's so frustrating waiting for a diagnosis and worse when it takes so long to come through. I wish your dad a speedy recovery and I hope that it goes well for your whole family. On the positive side, now you know for sure, you can all start to get your heads around this, make plans for what needs to be done and more importantly than all of that put it in a place where it does not take over your life.

[drivin_me_nuts]

Our MDT meeting was on Wednesday and the doctors face said it all really. Not a happy bunny, in so far as he was looking for a 50% tumour reduction and has got much less than that. Radio has been delayed one week by the cyst and the radio planning scan was finally done today. Radiotherapy starts in 3 weeks. To quote the words of the doctor.. we are hopeful but realistic. (In truth he has absolutely no idea what might happen. No one does, until it's over).

We got to have a long and indepth conversation with the speech therapist as well. Interesting stuff and slightly daunting. My lass will probably be unable to speek, she may well lose her ability to swallow for potentiallly the next year or so and there may be other protracted long term effects. We just won't know the longer term affects for a long time.

But at least we know. Psychologically we're looking into this time next year, or maybe even longer and our relationship with the cancer centre is going to be pretty much a daily affair for quite some time. On the plus side, she's now around 38kgs and that's close to where she was pre all of this.

At times this is pretty daunting. Radiotherapy is pretty much a black or white outcome. Plan for the worst, hope for the best and live every day, day by day is going to be the only way through the next few months.

The Macmillian team have been ace - I can't praise them highly enough for the support and care they show us. They are always pleased to see us and it's funny really that all the staff stop and ask us how we are. Sometimes I wish other parts of medicine could see how well the patient care part of healthcare works here. There is so much they could learn.


One of these days i'll post up an image my missues has created showing cancer. It shows how turmeric has stopped the development of cancer cells dead in their tracks. It's truly beautiful.