My mum has just been diagnosed

[DRAD3]

Hi Catherine

So sorry to hear of your mum's diagnosis. I lost my husband in April and am still on the roller coaster that is life with PC. Your comment about feeling a fraud struck a chord with me as I often felt the same when things were going well. What I would say is to enjoy those times but you are on a roller coaster and living with PC is hard work, physically, emotionally and very, very worrying. So glad that you find the forum helpful - it has been a life line for me.

I do hope your mum continues to feel well (my husband also suffered with severe jaundice and felt wonderful when the stent did its magic).

Take care

Deb

x

[Morwenna]

Hi Catherine

Lovely to hear your mum is feeling well at the moment, my dad was diagnosed about 6 weeks ago and also has diabetes and was jaundice so had a stent put in, he is starting chemotherapy next week (GemCap). He is also feeling pretty good at the moment and is fairly active. I like to hear of the good days people are having on here, it gives hope to others that it's not all downhill, take care

Morwenna

[Catherine]

Hello everyone,

Thank you for your replies. James I will talk to mum mum but she is very stubborn and I tried to get her to consider nano knife she refused.

Deb, I'm so sorry about your husband. I've been reading your posts and your kindess to others in the midst of your own sadness is lovely. You're right about it being a roller coaster, I feel like I've been on one since October (probably in the dark with horrid things being thrown at me) and there is no way off!! Oh and every day is important - it certainly changes your perspective in life and makes you appreciate simple things like sitting and watching a bit of TV or when I stay at mums I go and sit on her bed in a morning with a cup of tea.

Morwenna, I am pleased your dad is doing pretty well at the moment. I suppose the worry at the moment is keeping them well during chemo. Good luck with the chemo, I think my mums will start the week after next so we are almost at the same point.

Lots of love

Catherine xx

[laura]

hi catherine, good to hear mum is doing ok at the mo, long may it continue, i see you mentioned gemcitabine [ and one ur not sure about] could it of been capecitabine, abbreviated it becomes GemCap, this is the combo bri had for 19 months and one morwennas dad is starting, it is known for usually being well tolerated, of course people are all differant, you can read bris journey if you click on my name, we are now 2yrs 10mths post diagnosis and 12 months since chemo stopped.

all the very bestr to you and your mum, and you enjoy sitting on your mums bed and a chat and a cuppa, cant beat it, and best to have no regrets,thats how i felt about my mum, she lived till 95, been dead 20 yrs now, but i always spent as much time and took her out as family permitted, i have to say i am able to live with our time together and not live with "WISHING"

love laura xx

[PCUK Nurse Dianne]

Hi Catherine,

I will email you a few details re your mother's tolerance of food and urgency to go to the bathroom. Also as has been mentioned there are several different chemotherapys. It may be confusing as many people in the past have had the combination of gemcitabine and capecitabine (known as GemCap), however Cisplatin has been used in the past and is now being used by quite a few centres, often in a combination with the other 2 treatments, ie Gemcap + Cisplatin.

Kind regards,

Dianne

Support Team

[Sammy-Lou]

Hi Catherine,

Sorry it's been so long what with Xmas and my house being struck down with illness, I too had a miserable sickness bug and my husband and little girl both had an awful cold which I then caught.. Finally getting over it.

So pleased to hear your mum is doing well and please don't feel like a faud, I imagine a few of us can relate to this as I often feel silly posting when there are wonderful people being so supportive to everyone despite their own sadness but I think I'm coming round to the idea that no matter where in this journey we all are, we need each other and I personally am so grateful to talk to all of you. It lifts my spirit to hear everyones stories when things are going good, like your mum doing so well and being truly inspirational fighting hard! Love that she's dyed her hair!

We are going through a real rough patch and have had sad news today but I will update my thread to save me typing again..

I hope your mum stays positive and will be thinking of you!

S xx

[Catherine]

Hello everyone,

My mum has started chemo yesterday. She is on a combination of gemcitabine and Cisplatin. I was quite shocked today to look in her chemo book and find she actually has ampullary cancer. I wasn't able to go to her oncology appointment or chemo as my house too has been struck down with the winter bug, so I've been pretty much in quarantine from her for 2 weeks. Anyway she didn't ask many questions at her appointment and now we have a name in a book that's not been mentioned before. I have seen from the PCUK website that Ampullary cancer involves the pancreas but not been able to find out much more information about it.

Anyway, mums been ok so far since yesterday a bit tired and was looking a bit pale earlier but other than that ok. She hasn't been as good since Christmas, although in spite of everyone's best efforts she had the dreaded virus. She has been sick a couple of times, tired and her diabetes has been less under control. I don't know whether that's the virus or the cancer. My daughter has also been randomly sick in a similar pattern. I suppose time will tell with my mum. Unfortunately she has not been eating quite as well but again that could be the virus. I've had words and been tonight to make her a smoothie. Oddly enough her appitite has been better today than the last few days.

Sammy - get well wishes I've had the lurghi for 2 weeks now and it seems to be finally going.

Laura - the chemo nurse told my mum yesterday that she has known of various people still on the go years later following her treatment plan so fingers crossed she can be a Brian of the north!

Love to all

Catherine xxx

[mikejamesjhm]

Well Catherine, you seem to be very positive now that's very good though you have been panicking at that time. I hope your mother is doing well now. You have been mentioning regarding that your mother has been suffering from Rheumatoid Arthritis, I hope she is not suffering from any kinda joint pain, stiffness now.

[PCUK Nurse Dianne]

Hi Catherine,

I will email you directly with some information about Ampullary Cancer and what it involves.

Best wishes,

Dianne

Support Team

[Catherine]

Hi Dianne,

Thank you, it's very much appreciated.

Catherine

[Catherine]

Dianne, I don't seem to have recieved any of your emails. Could you resend them please?

Many thanks

Catherine

[DRAD3]

Hi Catherine

Hope all goes OK for your mum's chemo tomorrow and that she is feeling OK - keep us posted won't you?

Deb

x

[Sammy-Lou]

Just popping into your thread to see how your mum is doing?

xxx

[Catherine]

Hello everyone,

I don't post very often as it involves plugging my laptop on. I did pop on on my phone to comment on a couple of threads yesterday, but I thought this might be a longish one.

My mum is doing ok so far, she hasn't been eating a lot. She had gone back to her old pre diagnosis eating habbits which wasn't a lot at all. But she has just got hungry again over the last couple of days and has agreed to getting some powder to bulk up calories (well she did yesterday but that could change).

She had her 2nd lot of chemo yesterday, her bloods from Monday were quite low so the hospital took more when we arrived as apparently on day 8 of her regieme they can either raise or plummet. Fortunately they had risen enough to go ahead. I think Cisplastin is quite viscous on neurophills and white blood count so no one was at all concerned. But it did mean a really long day for her, (we were there at 9.30 and didn't leave till 6) I was worried about how tired she would be today. But she ate quite a lot, biscuits, chocolate, fruit, sandwiches and we called for fish and chips on the way home. She has finally got her head around altering her insulin according to what she eats and her sugar levels (praise the lord).

Last week she was really tired on the Wednesday, but apparently she has turned hyperactive today, been up since 7am pottered around the house and had a huge plate of stew. I think I am more tired than she is.

Last week she felt quite unwell on Saturday, nothing she could put her finger on but was fine again on Sunday. She is getting a little pain on the site of her previous breast operation, I'm not sure if it is realated to the PC (or ampullary cancer - I still can't find out what that is) or just a coincidence she had cellulitis in it for about 3 months earlier this year and hasn't been for her usual massages that keep it under control. It's really hard not to focus everything on this awful disease.

The Macmillan volunteers at the hospital were great yesterday, they gave us lots of information and a lovely recipe book.

I'm a bit worried that my mum isn't wanting to go out and about particularly at the moment - she's concerned about infection. I dragged her out for lunch on Saturday and my dad took her visiting family on Sunday. But I suspect that once she is more at ease with the chemo regieme this might change.

So that's us in a nutshell.

Lots of love

Catherine xx

[Catherine]

Mikejames,

How rude of me not to reply to you - sorry I missed your post browsing on my iPhone. My mum has had a few aches and pains in her leg. I think she had a bit of a flare up in between Christmas and New Year. Hopefully the chemo will put it back at bay though and she is ok on that front at the moment.

Catherine x

[DRAD3]

Hi Catherine

It certainly is a new way of life isn't it - no two days the same and watching out for every symptom and wondering what is behind it all. So glad to her that your mum is eating OK and having good days. I understand her caution regarding going out with all those germy people in the world - my husband was just the same. He would look in utter horror and disgust if anyone close-by sneezed or coughed and he would be wiping down handles and shopping trolleys and must have looked like he had OCD - it was quite comical (if it wasn't so serious!) Daft thing is, he used to be so careful but then our daughter would come home from school constantly having picked up some bug from there! I think he must have considered shipping her off to boarding school on many occasions!

Take care of yourself and your mum and hope things continue to go well.

love

Deb

x

[Catherine]

Hi Deb,

You're completely right it's no way to live at all. I am surprised people don't have infection control at the door to be honest - perhaps like a sheep dipping device. Your poor daughter, I can imagine the look on your husbands face when coming across sneezers and coughers. It certainly makes you think differently about germs. I have told my friend who says she has the start of a cold if she's like it tomorrow I can't go for my bridesmaid dress fitting.

My mums more tired today, but she's had 2 hyperactive days. I said I was going to ring up the chemo nurses to see if they had been feeding her E numbers.

I hope that on day 18 of the year you are still feeling as positive as you did on day 1.

Lots of love Catherine xx

[PCUK Nurse Jeni]

Hi Catherine,

Thanks for all your updates on your mum.

If she is on steroids post chemo (dexamethasone), these are usually given for 2 days, and this is probably what is making her hyperactive. It is an affect from these that peoples energy levels increase, and also, gives them the "feel good" factor.

Downside is that when they stop, can get a "hitting a brick wall" feeling. Let the doctors know if this becomes a problem, and they can give the steroids for a day longer etc...

Kind regards,

Jeni.

[Catherine]

Thank you Jenni

My mum has seen the oncology specialist nurse today and her steroids have been increased to 5 days after chemo. This was mainly because of her appetite as she can't face a what she calls a square meal. But I am sure it will help with the tiredness too. She had a really good week last week on her 'free' week and went out for lunch and shopping 4 days.

Regards

Catherine x

[DRAD3]

Hi Catherine - good news re. the steroids - hope this helps with your mum's appetite and energy levels and that she gets more good days to enjoy - lunch and shopping, definitely a mood and morale booster! Thanks for keeping us posted and lots of love to you and your mum.

Deb

x