Hi I'm newly diagnosed

Hi Mo,

My best wishes go out to you. The people are great on here and i am sure you will get lots of support and make many new friends.

My hubby had his lymph glands removed...but they were in his groins... not his neck... so he has lymphoedema in his legs... not sure how it will affect you in the neck.... but i hope it is not too bad... let us know how you get on.

love and hugs

JG XXXXX

Hi Mo

I too have to wear the dreaded mask for radiotherapy ( i was actually dreading what that would be like more than the treatment )I am 4 weeks through a 6 week stint and it is claustraphobic but honestly they keep you in it for as little time as possible which makes it manageable and you soon get into a routine where you just get used to it.

Thinking about you and take care
Claire x

Just wanted to wish you very very good luck with the treatment. What sort of chemo have they decided upon? Exactly which lymph nodes are affected? My "neck" one was actually my supra-clavicular fossa, ie behind my left shoulder blade. Yes, I imagine the masks must be quite claustrophobic at first, so don't forget to take a CD or tape of your own music if they have the facility to play something - although the actual radio doesn't take long, and as Pretty says, you will soon get into a routine and find the longest time could be the waiting room. Let us know how you're managing, and we shall be thinking of you. xxxx Penny

Just returned from Buxton Rave and would like to say Hello Mo!

From what you have indicated I assume that your Chemo will be relatively small doses in the oncology out patients ( an hour or so at a time) as it seems to be simultaneous with your Radiotherapy.

It certainly seems your specialist is covering every angle at the earliest opportunity with peg and picc ready at the start of treatment, I had over 600 hours of Chemo before they decided to go for radiotherapy - they were unable to fit me with picc line, due to the way my veins kept collapsing / moving about - I actually felt quite sorry for the nurses that tried one of which was so upset at failing to get the line in she was just about in tears - the inserting procedure is nothing more than having a canular put in with the exception that if you are squeemish you might bulk slightly at the length of tupe they are trying to insert - Don't worry if they have problems with your picc as (for most patients) there is an alternative procedure whereby the line can be placed by a doctor with you under a light general directly into the chest. As I am sure you know once fitted with a picc you can actually be fitted with a driver to drip feed your Chemo whilst you are at home.

With regard Saliva glands yes they were involved and I guess one of the most annoying long term and noticeable after effects of extensive kneck / mouth treatment (depending on degree and location of radiotherapy) is the inability to produce any saliva in my own case I do not produce any saliva whatsoever (which makes quite a few things difficult but by no means insummountable) - the saliva substitute gels and sprays you get on prescription,at best only provide varying degrees of short term relief - if you can't produce saliva you in fact get a great liking for drinking good old H2O in my case I take in so much fluid that when it comes to being asked to supply 24hour urine samples I have to request 2 x 5 litre containers - the good thing of course is my kidneys are kept well flushed!

As others have said don't worry too much about the mask - you have already experienced the worst in having it made and fitted - when you start your treatment you will be in and out before you have time to even think about it - but if you do have concerns about anything don't hesitate to ASK the radiologist!

Remeber to let us know how you are getting on, start a new / continue this thread whenever you like as there are lots of people that are wearing the tee shirt and are more than willing to offer you support - if you like don't hesitate to place a PM (private message) if you want and whilst I don't get on the site every night I normally look in two or three times a week.

All the very best Mo and welcome to Cancer BackUp

Matt

Hi to you all

I have been trying to reply to your kind messages but not being very good with computers I am not finding it easy to get my head around the sites here and how and where to reply/answer/comment. I tried to answer everyone here but then lost all the message so lost heart. I really should have learnt more about computers and jargon before I got cancer and nerves!!! Will do this first and see how it goes ....if it works will try to answer you all.....Love and thanks to you all, from novice Mo

Hi JG
Thanks for your kind words - Yes the people are great on here, so I am relieved that I managed to find them in time to support me through my treatment.
Hope hubby is well and I will try to keep people informed of my progress....if I find out how to do it!!!

Well, getting things right with your computer and this site are the last thing for you to worry about at the moment but I expect in a weird way it makes a change from the other worries! It is great that you have decided to get a computer at the start, as I went all through my treatments just having a few booklets and some rather out-of-date library books! The greatest bonus of this site is the people, especially the ones like Matt - who seems to have adopted you: so you'll be alright now! In really experienced hands! Just keep posting on this thread, and we'll come and find you, as everytime anyone adds to a thread you have written on, there is a notice at the bottom of the profile. I really do hope that everything is going well at the moment. Thinking of you xxxx Penny

Hi everyone
I had my picc line and peg fitted this week (peg a bit uncomfortable)but am getting more anxious as tomorrow draws near, the first day of my chemo and radiotherapy treatment. I'm off my food and can't eat much - and very worried how I am going to cope if I'm having trouble eating BEFORE my treatment. I am having a couple of Resource drinks a day but really feel I need to eat but my nerves are getting the upper hand at the moment, stomach comes up to meet the food - never been a big eater anyway. Will speak to the dietian tomorrow. Does anyone else go through this or am I just a wimp! Keep wanting to sleep, but then afraid when I wake up... Just needed to let someone know how I feel.....Not even sure I'm putting this on the right site!!

I can remember the feelings you are describing very clearly from the Night Before Chemo! Time just couldn't go slowly enough.. I am a big coward and especially where hospitals are concerned - they really depress and scare me, so I felt as nervous as you. HOWEVER I would say that the first day of chemo was not half as bad as I was expecting: you will not be on your own, but neither will you be with hundreds of people. I think you will find that the others will say hallo, but that people won't pry. If you want to talk a little bit, that will be fine, but if you would rather keep yourself to yourself and read a book/talk to your partner or friend if you are taking someone/watch a DVD on your laptop (one chap did whilst I was in, using headphones) - whatever, the time there will pass quite quickly. I don't know what sort of drug/s you are having, so not how long it wil take. Mine was Cisplatin, which takes about 6 hours altogether because have to flush kidneys with saline drips before and after for hours. I ALWAYS had very kind nurses, so they make you feel at ease. Tell them if you are nervous or not eating. I had radio 5 days a week, and chemo once a week, so on that day I had to go off trailing my chemo stand through the hospital. However you may have radio before or after chemo and not have to negotiate that. The tubes always get wrapped around the stand by the way, and every time you get up to nip to the loo, you have to do a little dance twirling it round.
I've gone on a bit (as usual, I hear everyone say), but I just hope that describing my typical chemo day to you might make you feel a bit less entering The Unknown tomorrow. I want to wish you all the very best, Mo. We'll be thinking of you! Let us know tomorrow night how you get on. Lots of love xxxx Penny

not a lot that i can add that hasn't already been said, but will be thinking about you tomorrow xxxxxxxxx
lots of love to you and yours
Alisonxxxxxxx

Thank you Sooo..much I thought it was just me! I feel such a coward sometimes.
I go in at 9am for Cisplatin which as you say is in a nice room with music and looks very comfortable, so like you will be in for several hours for saline drip first. My radio is later in the afternoon so that should work out okay if they start straight away. Then I will have chemo strapped to my arm for the week, thats fluorouacil I believe. Its the radiotherapy I'm dreading and its after effects as it will be from lower head and neck. Matt has gone down this road but he is one tough cookie and I would like to be the same but my nerves are running wild worrying about eating and drinking during this time. I will try to take on board what he has said and do my best.
I don't seem to have recovered from one item before the next cropped up and it may be good to get it all out of the way but they all affected my eating tonsillectomy - teeth out - and peg tube in stomach.
Penny you are a treasure - thank you for 'speaking' to me I REALLY needed it tonight Bless you Lots of love Mo xxxx

Thank you so very much for your comments and for thinking of me tomorrow - It will give me courage to know that you have all been there before me and are rooting for me, Bless you love Mo

Dear Mo,

Hope you have come through day one feeling a little stonger and more relaxed! Thanks for your private message.

I still consider myself a computer luddite and know exactly where you are coming from with regard to putting AND FINDING things on this site, so you are certainly not alone when you say you have difficulties, funny enough quite a few of us that attended the Buxton Rave commented on just how difficult we were finding it to negotiate the site and get back to the forums we had contributed to etc....don't know what the answer is as if you are not a computer wiss (like so many of our friends here appear to be) even finding a couple of threads and placing response seems to take hours!

Use of the private message system is very good although when the replies contain generic information not placing the contents on the forum means lots of other people can miss out on what might be useful information.

BACK TO YOU and how you are doing!

I'm very pleased to hear that you have got both peg and picc lines in clearly the picc line will enable you to have drip feed flurouacil and be able to take your treatment as part of your daily routine - don't feel too different because of this just consider yourself to be one of the many thousands of people who go about there normal every day life assisted by some form of machine e.g. pacemaker / insulin driver and the like - try and accept the picc, syringe driver and peg as a part of you until such time as you can get along without them.

Remember with the peg that it is there to assist and not necessarily (unless instructed otherwise by your specialist) to totally replace the art of swallowing, indeed I would suggest that you try and take something,no matter how small, by mouth whenever you can.

Sounds like your Radiotherapy is certainly equal to what I had and yes the chances are that you will feel far more discomfort from this than from the Chemo - don't hesitate to let the radiologists know the moment you start to suffer from mouth discomfort and ensure you maximise the use of the different mouthwashes and remember if necessary you can dilute the mouth wash so when you rinse it doesn't send you through the ceiling! - regular rinsing does help but don't wait till you start developing problems "prevention is better than cure".

It seems that your consultant has the bedside manner of a raging elephant I love how he has described your treatment as "Extremely Awful" perhaps he should be nominated for a second job in the diplomatic corps - Reality is reaction to treatment is different for everyone but with the extent and nature of your radiotherapy you can certainly expect, normally sometime from halfway through treatment onwards, to experience mouth ulcers and quite a lot of discomfort especially when trying to swallow (you know my thoughts on that) it is at that stage that your Peg comes into it's own...again remember that in addition to your liquid food, fortisip on the like you can also syringe your pain killers through the peg.

Has the dietician placed your order for fortisips etc with "Homeward" yet - make sure you clear part of your spare room cause they deliver a months supply at a time, I got over 250 bottles (20+ boxes)at a time (possibly less for a lady) - by the way if you are wondering why they offer you various flavours they are so used to supplying the elderly etc they seem to forget that through a peg line you cant taste anything ..unless of course you happen to belch (bannana is quite strong).

Please give Mick my very best regards, I am sure he will be tremendous support to you also tell him not to neglect himself and to maintain a healthy diet, just cause you might not be able to eat doesn't mean he can't - if he starts skipping meals give him a few of your fortisips - bet he starts eating again!

One further thing about pain killers via peg some GP's seem to think it's in order to prescribe soluble paracetomol / co codomol or the like these should not be used via peg - chances are they will issue a script for Oramorph (morphine based) but if you are ok with taking paracetamol based medicine also ask for a prescription of liquid paracetomol suspension this comes in the form of something called "Six Plus" normally prescribed for children(hence the name) however it's ideal for use via peg and adults can take 20 ml at at time x four times a day and it certainly takes the edge of everything and the good thing is you can also take oramorph in addition when / if you need to.

Well this was supposed to be a snappy reply but there were quite a few things I felt might be helpful.

Keep news coming don't hesitate to PM me if you wish and remember you will be driving through any rough patches in due course albeit today you are only at the start of this long tunnel.

Matt

It is wonderful to be able to access so many people who are willing to share expereinces. After sach a bad couple of days I just wanted to share my awful feelings and in no time two people came back to support me. Which was a tremendous lift because although I was still in a bit of a mess this morning I actually found myself arriving at the hospital and sitting waiting for my name to be called out as usual, all due to you. During the long session that you mentioned Penny - two bottle saline, one small bottle steriods - sickness tables then on with the chemo, when that finished this afternoon at about 3pm I was trollied off to radiothrapy. I wasn't in there long but the radiolgist did explain everything thoroughly so we were able to ask questions - yes Matt I too will loose saliva gland...oops (must eat all the chocolate and pastry in the next couple of weeks !!!!) but i will have a life. Evidently this is a very dangerous cancer if not treated. So I'll go along with that.
I am hanging on your every word Matt and your name has been banded around family and friends already and anyone at the hospital that I can tell them about you and cancerbackup.
Penny you will be pleased to hear that I managed a breakfast, cheese omelette & tomatoes and ice cream for lunch at the hospital and a tuna and cheese salad with lashings of dressing and rasberries apple and yoghurt for pudding...hope my appetite is back !!
The first day has been okay but yes I do know there is so much more to come.But Matt I am going to meet it every step of the way. Your tips etc have been taken on board and I will keep you posted as long as I can, and thanks again
to you all lots of love Moxxxx

How are you feeling after the Cisplatin and the first go at Radiotherapy? I had a feeling you might be on Cisplatin as it's same little devil as got me except in different primary site. I am so glad that you have a civilised hospital and got "trollied" to the radiotherapy department, as we had to walk, taking our chemo stand with us, and that included going one floor down - memorable day when the lift got stuck and I had to climb down 2 feet then lift chem stand! Well, it sounds like you have got to grips with this already: I think very often it is fear of the unknown that is the worst thing because we don't know how we're going to react. So, you have 'gone over the top now' and definitely deserve a medal for bravery. With very best of luck, and lots of love xxx Penny

Good to hear from you Penny but You all leave yourselves out - I only got there and improved with grateful thanks to all those positive people around me, also my 'rock' Mick of course.

Since I was diagnosed he has started to cook and makes lists of recipes on bits of paper that I have guided him though our meals. Of course this shouldn't happen but would be nice if I do not feel I want to cook one evening. He does eat very well Matt He's a Yorkshireman who has always enjoyed his meals - always cleans the plate! How lucky we all are I wouldn't like to think of facing this on my own. Strange but it has hit us twice, When we lived in Cheshire in the mid 90's Mick got prostate cancer. Thankfully he is now cured.

Love to all Moxx

I've been reading this thread with great interest - although I have a totally different cancer [ovarian] I am still waiting to start chemo. Because of my wound infection I've had to wait a very long time - by the time I actually start, it will be over 3 months since diagnosis - and of course with every week that passes I get more and more scared. Just another 3 weeks to go, but your clear description, Penny, has been very helpful and it was really good to hear how Mo got on as well. I'm having different drugs - Carboplatin and Taxol - but imagine things will be fairly similar from the 'administration' point of view. What would we do without this site !!! Thanks again. Love Kate xxx

Mo - lovely that you husband can cook if need be: my partner HAD to learn as I felt so fatigued (as if on Jupiter's gravity). He kept coming upstairs bearing packets he couldn't read the small writing on the instructions of, bless him, and when he went back down I could hear things being dropped and a lot of swearing. Well, you just have to laugh, don't you. I've started buying plastic plates and bowls, as there are attractive ones about at moment intended for picnics! I'm so sorry to hear that your partner went through all this: you really must feel that lightning has struck twice, and that it is so unfair. Keep posting to let us know how you are doing. xxx

Kate: so sorry that your chemo-start keeps being delayed. You must be on tenterhooks, and I hope that those infections get chased away and you can get treatment proper underway. Only part of my chemo regime will apply to you: I think it's only with Cisplatin that you have to be flushed out for such a long time on other drips before and after, and also only Cisplatin where they measure the amount of urine produced. This is because Cisplatin's side effects include possible kidney damage: however I think whatever drugs you are on, it is a good idea to take plenty of liquid whilst at the hospital. They may provide water in jugs and cups of tea - until some accountant decided we'd change wards as chemo day patients and the tea trolley didn't follow us! Looking forward to hearing you've started, and very best wishes. xxxx Penny

i am so glad that it hasn't been too bad today for you, lets hope that it stays that way xxxxxxxxx and thank you so much for letting us know how it went xxxx and Kate my love, i hope you get well enough soon to have you chemo
love to you both
Alisonxxxxxxxx

Thanks for your comments - always lovely to hear from you all.
I am feeling REALLY tired tonight and its only the second day!! Slept while waiting for my radiotherapy and slept after my dinner tonight the phone woke me and I couldn't think where I was!!

Hi Kate

I'm afraid the waiting was worse for me too - worked myself up very well until my first visit. I tried reading papers books watching tele (never much on) alsorts. My partner has got himself hooked on Sudoku (not sure that how you spell it) he finds he can loose himself in it!! and of course he needs that as well as I do. Hope you hear about your appointment soon Lots of love Moxxx

I know I felt so so tired. Everything was a huge effort, and getting out of bed everyday and into a taxi (my bulk-buy bus ticket went unused!) to go for radiotherapy took major effort of will-power. Let me know if this continues, Mo. xxx Penny

Hi Matt
Thanks for all your comments and advice. I am trying to take everything in as my printer will not let me take off what I need for reference only - me and machines!!!

I am gratful foryour many tips - each time I ask doctors hosp about my usual medication(I also haveulcerative colitis) they always say someone will sort it out - I don't want that flaring up in the middle of the treatment, I'm sure it won't go down the tube as its not in liquid form.

Every morning Iwake up I am now looking for the dark days to arrive, Mrs doom and Gloom, I know there is so much to come and I'm still scared. Must keep going and looking positive bless you all for being there. Lots of Love Mo xxx

Hi Peny
Dont' Know about sleeping Beauty - I feel a total mess lately!
Really will have to go to bed soon and hope I feel a bit more lively in the morning. Only had one dose Cystplatin Penny now on the Fluororoucil or something like that for the week at home it is in a tube and tucked in my bag - pocket or wherever I can get it !!
Yes will let you know if it continues Penny
Nite Nite zzzzz lots of love MOxxx

Mo,

I have posted reply twice tonight but have lost it each time so third time lucky (I hope) anyway,

Great to read your update and that you are now on your way to becoming a hardened Chemo / Radiotherapy treatment person. Don't worry about nodding off and or feeling tired you must remeber that Chemo cannot be totally selective it knocks out some good guys whilst beating up the bad ones - it actually tries to selcet those cells that are multiplying the fastest as these are the cancers but on the way some normal cells also get damaged (which is the reason (depending on chemo type) that it is so often Hair or finger nail growth is attacked as these cells multiply quicker than others). Blood tests are therefore very important as they indicate just how well your good cells are recovering...and your body tends to repair itself quicker whilst you are resting SO ENJOY YOUR NAPS and also if you can get some decent sleep as well.

Tell Mick to start eating some real Yorkshire fayre.

Thankyou for all your kind words I just hope that we can all help each other to understand and thereby be in the best position to give 100% effort to getting better.

Keep the news coming you really are a STAR!

Matt

Hi Matt

Yes third day into treatment and a mountain yet to climb...thats what is giving me the colywobbles (don't know how to spell that)
Everything is revolving around my tirdness at the moment, worrying when I am going to fit in eating - still having trouble there - always had a fairly good appetite if not big, but what I am eating at the moment wouldn't keep a bird alive, Just cant fancy food anymore, must have a resouce to keep me going.Does anyone out there have any ideas how to get my apetite back?

Mick enjoys his meals and he did have 'yorkshire' pudding on his sunday roast Matt - oh how I wish I could eat like him!!!

When do they check your blood? - will it be a the end of this week when the fluorowhatever comes off. I haven't had any checks so far, either weight or blood. I'll ask them tomorrow at the hospital.

So pleased I have you guys to 'speak' to it is such a help, I know I have a long way to go but with your support and help I'm sure I'll get there

Best wishes Moxx

Oh dear, you seem to be repeating my experience on chemo. I too felt extremely tired, and as I felt fairly nauseous and also developed illogical aversions to food. I REALLY struggled. I found that fresh pineapple was a good one, as I could have that cut into pieces, and I had some by the bed at night. A lot of foods tasted peculiar, although I still managed to eat brocolli, baked or mashed potato and peas, also microwaved salmon, grated carrot - and then I ate weird things that I would never normally eat but was just grateful that I could eat anything. I think it's just a case of whatever you fancy, see if you can eat it, but don't bulk buy anything, as you might go off it! The important thing is to keep drinking plenty of fluids. I'm sure you've been told to do that particularly on the Cisplatin day. It's really hard at a time when you know that you should be eating healthily to have the chemo play havoc with your taste buds. I think you just have to experiment, Mo - each to their own, and believe that as soon as this stuff starts to leave your system, you'll be Business As Usual. I certainly wasn't weighed again until the end - and discovered that I had only lost 2kg.

My blood test was carried out in the morning that I had the chemo, as I was scheduled for Monday, and they said that Friday was too early to monitor the levels. I had to wait until the results came back before being hooked up.

How many weeks is this going to last, Mo? I'm really feeling for you, as I was bad enough on Cisplatin, so you deserve a huge medal for doing both. Thinking of you xxxx Lots of love, Penny

Hi Mo,

Sorry to hear you're having The Treatment. My hubby, who has oesophageal cancer, had one day cisplatin, 4 days 5Fluourocil ( or however you spell it) then three weeks off, then the same again. And every week during this time he had radiotherapy. He has a peg tube, too.
The treatment was very tough and really knocked him out - tiredness and lack of appetite were really bad, and he also had pain from the radiotherapy towards the end of the treatment. He lost a lot of weight because he just couldn't eat. But he managed to keep going by snacking whenever he could - just little bits. Milky drinks helped, too, amd he got isosource for the peg tube. He's never used the peg tube , but the milky liquid to put down it is still keeping him going - he drinks two bottles a day - 1500 calories. Unfortunately he started doing this very late (an emotional barrier to the stuff)as he could have saved himself weight loss. They were concerned about the loss, and it was one of the reasons they stopped the chemo before tzhe full 4 sequences ( he only had two). So keeping up the weight is important.

But the treatment worked! However hard, it seems to have been successful. Now he's feeling much better, gaining weight ....there's a light at the end of the tunnel.

All the best to you, and keep letting us know how you're doing.

Pat

Hi All, thanks for all your encouraging words. Not feeling very wonderful at the moment. First weeks chemo done and flouroucil (i think) removed until sixth week but felt breathless for a couple of days they took blood tests so will have the results on Monday. Still cannot eat - fancy absolutely nothing, just managing some breakfast, soup for lunch but by evening just can't face anything so relying on 'resource' drinks at the moment, will tell the doctor on Monday - due to see the oncologist when I have my radiotherapy, have a feeling they may want to use my peg as weight is going down - if only I could fancy 'something', still better to use the peg than let the weight slip too far down I will keep drinking as much as possible and if I can I will eat as well. Feel very light headed and swimmy probably need a good feed!
Hope I have better news Monday evening, my love and thanks to you all Mo xx

I hope that something can tempt you. You are undergoing a really tough regime though, and you are probably doing very very well under the circumstances. Keep us posted. Lots of love and hope your spirits don't feel too low. xxxx Penny

Thank you both for your kind words and encouragement. So pleased Pat that hubby is okay sounds as though he had the same trouble as I am having - worst thing for me is that I have never liked milk cream etc so can't even take a glass or two of milk!! Will have to ask about it on Monday and see which way they send me.

Thanks Penny, it does seem a double wammy at the moment. Haven't felt so tired today in fact have'nt slept much at all. Will keep trying these resource drinks - mouth now very sore and have thrush so taking tablets for that, rinsing mouth every few hours but none of this helps with appetite.

Will try again tomorrow. Love and god bless to you all Mo xxx

you poor love, have you got some gylcerine and honey and lemon handy? they make a fantastic mouth wash or pineapple really refreshes the mouth as well xxxxxxx hope you feel better when you get up today xxxxx i do believe that a little piece of dark choc helps to pick you up a bit, if you could manage a tiny piece a day it may do you goodxxxxxxxx
lots of love
Alisonxxxxxxxxxxxxx

Thanks for those tips have got honey and lemon but will get the glycerine and choc and give it all a try bless you for your help xxxMo xxx

Can you please tell me if I am getting ready for the 'funny farm'...I am on a really awful rollercaoster ride at the moment with a mind like a butterfly - it runs forward and back and runs off in all directions and is driving me out of my mind at times, it fills me with anxiety and dread and I am trying to control it and take one day at a time but it keeps running ahead and upsetting me.This is daytime and night time. I am only at the beginging of my treatment and already fearful of how I am going to cope if I don't soon get a grip. My doctor has given me lorazipam only 1mg but I don't really want to be out of my head I would like to gain a bit of control, I am trying washing clearing up television books newspapers (all bad news anyway) anything... but at the least opportunity it runs straight back and clamps on. Any help on this one please?love to all Mo xxxxx

I too suffered from sudden onset of severe anxiety when I was part way through treatment with Cisplatin: however I knew I could pinpoint it to a definite approaching even: my first-ever stay as an inpatient and the "Internal Brachytherapy" in the lead-lined room with no visitors. However, as is their wont, the oncologist didn't ask if I knew why I was having breathing difficulties when I lay down and tried to sleep, just slapped me on Lorazepam. It did enable me to sleep, and did make me feel calmer, and got rid of the nightmares too. Is there something in particvular bothering you, or is it just disturbance due to chemo brain? Anyway I do want to assure you, Mo that 1mg won't get you out of your tree - def won't see pink elephants or flowers breathing! You may find that it is a good temporary help BUT do make sure that it is temporary. As I have had so many shocks and setbacks and bad news, I am still on it 18 months later (now 2mg). You do have to cut it off gently, ie take 1mg one night, then half mg next, then 1mg again, gradually reducing it. You might even find that half a tablet a day will help you.

The Cisplatin really does interfere with our concentration in an alarming way, but this is only temporary. I found that my reading age had plummetted, and I couldn't concentrate on the sort of books I would normally read. There is nothing wrong with you except what will disappear when these drugs clear out of your system: it DOES get better, Mo, although it takes a week or 10 days after the end of chemo for the mists to clear!

Keep fighting! You're doing great so far, and don't be afraid to get a little chemical help with the Lorazepam just as a temporary aid. With lots of love xxxx Penny

Thanks for your help. I suppose I can only relate mine to the illness itself not any particular happening just the whole being - just afraid I am loosing my sanity - always been a fairly strong person if somewhat anxious at times, but this has kind of blown my head off its stand. Instead of being positive I keep thinking of how far I have to go and its quite frightening at times as if I don't want to go there but know I must go and get through it. I will try the lorazepam and see if it helps.
I must say at this point I am so pleased that I found you all when I did - I just don't know what I would have done without all the love and support you have all so kindly given me, as family friends and doctors can't always help as they haven't been through this have they? and you really have to go there to understand. I have also given sympathy in the past but now realise until you go there or support someone there you have no idea of the enormity of it all. Do hope I can get this head straight soon. Bless you Penny for your help once again, you're a treasure. Love Mo xxxx

It's true that although family and friends can be sympathetic, they don't quite comprehend the stresses and pain we're going through, whereas colleagues on What Now do. You are DEFINITELY not losing your sanity: this sensation of all this never ending, or of us being so deep that we'll never climb out, seems a fairly common feeling part-way through treatment. It may well start to ease once you are half way. Let me know if the Lorazepam helps. lots of love xxx Penny

You are all so very brave and gone through SO much yourselves to be able to help people like me and I thank you for that. I will try the lorazepam tonight as I feel I am getting more worked up as the evening goes on. Nice to have a weekend off but oh the starting up again with the radiotherapy is daunting. Poor Mick is cooking his dinner as I can't even stand the smell of the cooking, bless him he is a rock for me at the moment I don't know what I would do without him.
Will let you know tomorrow if the tablet works Lots of love Mo xxxxx

I said I would let you know how I got on last night and today.

Thank you all for seeing me through a DARK weekend. I did as we spoke of Penny and had half a lorazepam....zzzz (although did wake a couple of times) no nightmares, calm and relaxed and got off to my treatment this morning, and even managed breakfast lunch and dinner (all small of course) God bless YOU all and lorazepam. I have decided that if I need a little help from a tablet best to do it and sort it out later. I have lots more 'nasty' to come yet so may need more of this prop!
The chemo is still passing through so mustn't get too carried away things could change any minute!!!

Love to you all xxx Mo xxx

You'll get things sorted out and your fears will gradually reduce - this site helps a lot. My husband had cisplatin among other things, had problems sleeping and loads of nightmares and anxiety. Tablets helped him a lot - anxiety tablets, sleeping tablets - and he got to know exactly when to take what. It was a hard time, but he learned to cope well - and you will too. Just wait till you're giving the next fellow sufferer advice!

Have a good day

pat

Mo,

Sorry I haven't been back earlier I have been following thread but sometimes can't seem to get round the system properly.

I am very pleased that you have managed to get a bit of rest - your body certainly needs it and it also needs as much help as it can get from your drinks etc so you say you were having 1500 calories well surely your intake should be double that? use that tube and give your body the help that it needs - chemo is attacking but it also needs your bodies natural soldiers to do their bit and as we all know an army marches on it's stomach!

From your thread, and I might be totally wrong, you give the impression that you are a very strong willed and possibly independent person - you are talking to us regularly and that is very good not only for you but for everyone who enters / looks at these threads - I just wonder how open you are being with friends and family if you are great, my impression is wrong - if you are holding back and not putting your cards fully on the table and telling it as it is they are not able to really be there for you and give you the encouragement and maybe even the odd shove that you might need.

Hope you don't take any of this the wrong way it's meant to be constructive and as I have said in other threads - when I write a comment I tell it as I see it.

Keep fighting and when you get the opportunity especially when your down go and sit in the garden, listen to the birds, breath in the air and watch trhe grass grow for a few minutes - it's when you do that that you realise how wonderful everything really is and that it's worth all the agro to be alive and kicking.

Fondest regards,

Matt

Yes I think the anxiety has been quite high - just when I think I have talked myself into control the body goes to jelly again. I am having a little help (tablets)like your hubby just because I HAVE to get there. Had a councellor come today - very nice but took me over the trauma again and I found it difficult after she had left. So had to pick myself up again and it doesn't seem to get any easier. Thanks for your support Pat Bless you love xxx Mo xxxx

Yes I have rested but the food intake has been slow. Had several days of the resouce drinks only because I just couldn't face food and that was over the weekend when I couldn't really ask anyone at hospital, so asked our old faithfuls on site to help. which they did. Was trying not to use the peg tube until I really HAD to. Did you use it this early? I'm only halfway through my second week!!
Yes Mat you are quite right I probably am strong willed and independant - until now - this has made me a bit of a reck, like I said it has knocked my head off its stand. The horror of my family (son daughter) when I told them the news ,maybe not all cards went on the table straight away, however they (friends and family) were told the details of what the oncologist had said. However life goes on....for them, holidays - family visits - retirement cruises - caravaning - buying new homes, they do phone or e-mail to keep me updated! Mick is even more independant than me and we are second time around (don't share the same children).

The girl phoned today about my feeding tubes so will make arrangements for her to come and explain all, maybe as you say some food in the stomach will help the army march.

I was given tongue and jaw exercises to do at the hospital yesterday,(did you get them) they seem quite straight forward at the moment, so trying to memorise them. Had thrush which hasn't helped mouth problems so far.

I wouldn't take anything you say the wrong way Matt - I hang on your every word because you have been there - and I believe what you say - You keep it coming please

Kind regards
Mo

Phew!!
I think I have just turned the corner from Chemo - begining to feel like a human being again.. Thanks to all you faithful 'what now' friends for all your hints and tips - I will now keep them by me for the second session!!

Just completed my second week of radiotherapy so feel I'm on my way....

lots of love Mo xxxx

Glad to hear that you are coping well, and are already at end of seconf week of radiotherapy. It'll go by quite quickly once you reach the halfway point. Keep us posted about you progress, and it's lovely to hear you so cheerful! xxx Penny