Newly Diagnosed

[Veema]

Fab...just fab!

Vx

[Justamo]

Peter was 9st in September and is 11st 4lbs now.

I was 8st and now thanks to skipping the gym and buying high fat/high calorie foods I'm 8st 11lbs. Now that we've sorted out how to gain weight, can we do something about shedding it too ?

Seriously, Elaine, good to hear that Pete is more positive now.

Best love

Mo

[Guest]

Just a quick note to say I am so happy to read your latest post Elaine, I'm sure the steroids will help and so heartening to hear a positive GP story. Do tell the chap or your own GP that he made a difference as they do take an awful lot of flack for our unrealistic expectations.

Do keep us posted on how you are both doing and may Pete go from strength to strength

M xx

[Dandygal76]

Sometimes the younger doctors can have a fresh refreshing insight into things I find. Their senses are not quite dulled yet from seeing thousands of cases.

I think everyone on here will empathise that the patients are the most annoying feature in trying to treat this illness. I think it should be logged somewhere that stubbornness is a side effect of pancreatic cancer. We have all been there... try this, try that and it all falls on deaf ears whilst you feel completely alone and desperate inside. I have had the same issue with dad and if the doctor visit worked then I would suggest another. PCUK always say... you can call us (probably easier on their time I know) but waving that magic independent medical professional e-mail to my dad works wonders in our case so it is another route to try if you need to.

Water is a biggie as well, once we got this in dad's head it was a big turn around (another PCUK e-mail).

I hope you continue to see improvements. Be strong my lovely, you are not alone. x

[PCUK Nurse Jeni]

Great news Elaine.

So good to hear this news.

Megace is often used to improve the appetite when a person is diabetic, and cannot tolerate steroids due to their effect on blood sugar levels. Of course, it can be used to boost the appetite in any situation, not just when you are trying to avoid steroids such as dexamethasone.

Megace is a steroidal progestin - so, is a manufactured type of hormone which has a few uses in cancer care, one of these being to increase the appetite. A great call by this doctor.

I hope that it continues to do the trick and that Pete continues to eat and enjoy his food.

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Elaine123]

Roller coaster is on the up again for Pete. He is booked in for his chemo today. We seen a wonderful specialist Dr at the clinic yesterday who just lifted Petes spirits up and sent him on his way full of motivation. She took all the time in the world to explain fully to him about any question he asked. What a difference a persons manner can make in installing much needed hope in someone.without minimising the serious nature of this horrible disease.

He had put on 5 lbs since last weeks weigh in which has halted the rapid weight loss over the past few weeks....so that alone has built up his determination to try and eat small snacks as well as taking his supplements. ( thanks to all on here and to our nurses for all the excellent advice you gave me with regards to diet which has worked )

Off to chemo today and whatever awaits him after this session ......no doubt this week will throw up something which will have me coming on here and shouting help!

I hope everyone's roller coaster is on the upward slope today and once again thank you all.

Elaine

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[Dandygal76]

Hey Elaine, I am glad Pete is on the up. It really is amazing how the attitudes of doctors (and nurses) can be make or break these situations. I know it is a delicate balance of realism v hope in this disease but just being a little more positive can go a lot further in treatment than many tablets they can offer for side effects. I am so glad Pete is putting on weight, I have found when they do not eat one of the worst side effects to endure.

I hope chemo goes okay today and whatever this week brings... yes we are all here willing you on and hoping we can help. x

[Guest]

So pleased to hear this Elaine and glad that Pete is feeling less depressed by the situation, all these things help and as does time to get over the initial shock!

Look after yourself too and take advantage of the ups when they occur.

Much love M xx

[Elaine123]

Well Pete got his chemo on Thursday and he was delighted to be back on track again. He was wiped out on Thursday night as there was hold ups at the chemo unit and we were there for most of the day and by the time we came out it was snowing and icy roads so it was quite a hazardous and time consuming journey home. However he got up on Friday morning full of the joys ate breakfast... done his injection... took his pills...put on his dvt stockings and proceeded to go out and fix the outside lights which had gone out last week. I couldn't believe it neither could the neighbours who seen him at his lowest last week. He is still in bed as I write this so don't know yet what today will bring but it was lovely yesterday to have the old Pete back to normal Even if it was only for a day. I have decided that instead of my usual waiting on the roller coaster being on the downward slope again just to savour what to us has come to be a NORMAL day. I hope everyone has a good weekend . Take care

Elaine

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[Justamo]

Great news Elaine. It's good to really appreciate the good days on Planet PC.

I remember back in September explaining to some of our neighbours about Peter's diagnosis and solemnly receiving their sympathy. They watched as I helped my 9st invalid to the car and I almost expected to see flowers tied to our gate when we returned from yet another consultation with Mr Bogeyman.

Now he looks like the picture of health. He adopts a limp, when he remembers, after he's had chemo (no, I don't know why either), but otherwise he's apparently fit and healthy. Maybe the neighbours think I was preparing to start one of those fundraising scams that have gained popularity ?

Now most of them think he's 'cured'. Come to that, he thinks he's nearly cured too and is planning an assault on the golf course as soon as the snow is gone. We'll leave it like that for now.

I've re-read some of your earlier posts Elaine. They were full of despair. Now you are seeing the other side and sharing it with us and for that I thank you. I hope your Pete and my Peter continue to have good days.

With love, Mo

[Guest]

It's lovely to know that you are having some really good quality time Elaine. So happy that your Pete is coping so well xx

[Dandygal76]

It is so lovely to hear when things are going well - enjoy these special times Elaine. Pretend that downward slope will never come. x

[Guest]

Was thinking of you today and smiling. Hope you had a good day

M x

[Elaine123]

Thank you for all your lovely replies to my post. I am so glad that Pete had that one good day because when he awoke on Saturday he was wiped out totally and that has been pretty much the state of play since. As everyone on here advises this is very much a one day at a time life and thank goodness for the good days as they carry you through the rough times.

He has been extremely tired so fatigued he could hardly get off the sofa. Appetite vanished again but still managing to take supplements, and to top it all off his hair has started to fall out. His comment to that was " it never rains but it bloody pours "

However he is eagerly waiting on clinic day Wednesday hoping that his blood levels are okay for chemo to go ahead and that he hasn't lost any weight. He has total faith in this chemo shrinking his tumour and liver Mets and as we all know faith and hope are essential in this battle. He is still in bed as I write but I am hoping for even one more good day for him before chemo on Thursday.

Wishing everyone here the best of days . Take care

Elaine

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[Proud Wife]

I am just rushing out now but your post brought tears to my eyes Elaine. I so know what you are going through and how wishing for just one good day means the absolute world. My hubby was so positive and confident that he could beat it, he had me believing it too right up to the end.

Pete is absolutely right to have faith in chemo - once you take that faith away, there's not a lot left.

Will chat more later but just wanted you to know I am thinking of you both xx

[Veema]

I totally agree...I'm sure Nige's positivity got him as far as it did...it helped me remain hopeful too.

Good luck with bloods.

Vx

[Justamo]

That is so spooky Elaine. Peter spent Saturday and most of Sunday in bed. I feel as though I was asking for trouble by wittering on about 'good' days and being smug about it.

More news in my thread in about an hour.

Love, Mo

[Guest]

Dear Elaine,

Sorry to hear Pete is wiped out, chemo is no walk in the park or an easy option. It's good tha Pete is focussing on keeping his weight up and being well but everyone on here knows that you are ever watching and waiting and alert to the slightest change.

It's ok to feel down when things don't go to plan and to feel joy when they go well. Life is different now and there are different rules. Plan in some relaxation for yourself and if the local hospice has a caring course do it, they have lots of good practical advice for symthoms management and god support networks, it is not an admission of defeat, they are experts in dealing with chemo and all the issues that go with it mental and physical.

I send you love and prayers, I hope you both sleep well.

M xx

[Veema]

Hope everything went okay at clinic today...is chemo on for tomorrow?

Vx

[Proud Wife]

How's Pete doing Elaine? x

[Guest]

Hi Elaine,

We don't want to badger you because we know that sometimes having to respond is just another chore and at other times there is nothing to report or we are feeling too punch drunk to want to. Don't feel pressured to answer.

We ask only because we want you to know by way of us posting that we are thinking of you and that we are always here in the wings.

M xx

[Elaine123]

Thank you all for your posts. It has been another up and down week. Attended clinic on Wed and thankfully Pete had put on half a pound and didn't lose any weight. Came home and had an anxious wait to see if there would be a phone call to say his bloods were too low. However no call came so he was good to go for chemo yesterday.

By that time I was so tired I felt sick , Pete has been up and down every night over the last week but then dozes off frequently during the day .....he has a really sore mouth which is not helping his poor appetite and the past few days has only taken enshakes.No matter how little sleep I get I cannot sleep during the day also our daily living chores still have to be done. By chemo day the lack of sleep and the round trips to the hospital had done me in. ( or maybe that's old age creeping in lol) the upshot was I fell asleep in the waiting room while he was getting his chemo and I was mortified that I was probably sitting with my mouth wide open and making farmyard noises while people were coming and going.

His chemo went off okay this week no long hold ups . They have given him gel satchets which I think coats his mouth and throat to aid healing. So that may help his eating. No chemo next week as that will be his weeks break before starting his second cycle so maybe he will get some quality time during those two weeks.

Fast forward to 6.30am this morning and we had been through the usual up and down all night and He was sitting at the dining room table and he announced that his plan for today was that we would go into town for a couple of beanie hats and then into the barbers to get what's left of his hair shaved off. Also he rhymed off what he was going to have to eat today. This mirrors last Friday after chemo when he was full of energy and had an appetite and felt like going out, so we intend making the best of it in case like last week he is wiped out from the second day. Well that's the plan at the minute but he is now on the sofa snoring fit to waken the neighbourhood so things could change.

Enough about my woes I hope everyone has a great day and hoping we hear good news about DG's Dad today..

Thanks for listening.

Elaine

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[Justamo]

Identification again Elaine; last night at 10pm I announced that I was finishing 'work' for the day. I felt exhausted, my head was splitting, my back hurt, and I am beginning to feel the effects of the three prolapsed discs in my thoracic spine. So Peter was abandoned to do his own blood test, eye drops, various tablets etc and I went firmly off duty.

I've an appointment with my own GP next week to get treatment for some other issues but today Peter seems to be suffering no ill effects from my wilful neglect of last last night and I'll just catch up on a few chores and maybe get a swim to deal with this pain.

And Elaine, I have been told a really great tip for keeping your home spick and span while doing everything else as well: lower your standards.

Hope your day is as good as it can be.

DG, thinking of you. And Quickly. And everybody else!

Take care, love Mo

[Elaine123]

Mo I am going to take your welcome advice and lower my standards .....thank you for that obvious fact which should have been staring me in the face.

The deed is done and Pete has been to the barbers.....another hurdle and worry cleared. I think he suits it and it doesn't change him he is still Pete. I am beginning to realise that we tend to look too far ahead and blow future problems out of all proportion and by the time they come around we feel they will be insurmountable ........and when they come to pass we work through them and find they were not as we feared.

Thanking you all

Elaine

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[Elaine123]

Mo I am going to take your welcome advice and lower my standards .....thank you for that obvious fact which should have been staring me in the face.

The deed is done and Pete has been to the barbers.....another hurdle and worry cleared. I think he suits it and it doesn't change him he is still Pete. I am beginning to realise that we tend to look too far ahead and blow future problems out of all proportion and by the time they come around we feel they will be insurmountable ........and when they come to pass we work through them and find they were not as we feared.

Thanking you all

Elaine

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