A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Tue Dec 08, 2015 7:33 pm

Thanks Marie

I have decided to have my hair chopped off so I can get used to it, so will be having this done tomorrow!

I have actually been contacted by the moderators and exchanged emails with another member which has been really valuable and helpful. I will email the moderators to arrange exchange of our emails as it would be nice to have contact and support.

Ruth x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Dec 10, 2015 8:50 pm

Well I have had my Hickman line inserted today. The procedure was early at 8 a.m so we left at 6.45 to get to hospital in time. It all went well. I met up with some friends for lunch and then I had a consultation with the Consultant at 3.30. My bloods were fine and chemotherapy is due to start on Monday.

It's very strange as I've been feeling really upbeat and positive but after the consultation with the Consultant I felt very over whelmed and scared. He didn't tell me anything which I didn't already know and he was lovely but when I got home I was very tearful. I think this is completely normal as I am facing a very uncertain journey and have no idea how I will react to the chemo. It's also been a big day today having the line inserted. My neck is feeling bit sore now but nothing too bad! A good nights sleep will help. Tomorrow is a new day.

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Fri Dec 11, 2015 11:32 am

Hi Ruth,
I am sure that it all just became a bit too real, you know what is happening of course, but the actual fitting of the line, and then seeing the consultant brings it home that this is actually happening to you and its very scary. I know when my husband Trevor was going through all these different things and when the news wasn't too good we just needed time to come to terms with what was happening, then we would put our brave face back on and continue with the journey, with positivity and a smile its all we can do.
Sending a hug and strength to you, take care sandrax xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Dec 11, 2015 6:18 pm

Thanks Sandra

I do feel better today. I think a whole day in hospital constantly being around it was just a bit too much yesterday. Like you say you are really faced with the reality of it. Thanks for your warm and kind words.

Ruth xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Dec 17, 2015 11:26 am

Just a quick update. I had my first cycle of Folfirinox on Monday. Unfortunately I hadn't been given an anti emetic tablet I was due to have an hour before the chemo and I vomited a number of times at the end of treatment. The anti sickness medication was sorted out and fortunately I've had no nausea or sickness since.

I have felt fatigued but nothing too drastic. I have been sleeping like a log at night, my energy is ok in the day and I've been eating well. The district nurse is due to come and flush through my line in the next hour and will be a relief to have the little tank removed from me! I am planning on getting out in the fresh air for a walk this afternoon.

My temperature has been fine so far. I feel a bit dazed and in a fog but think from what I've read this is normal with chemotherapy.

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Thu Dec 17, 2015 1:28 pm

Hi Ruth,

This is all positive, apart from the anti-sickness at the start.

But sounds as though this was quickly sorted out, and you feel much better since.

A walk in the fresh air sounds good - and you will probably feel better for it, especially with the mild weather.

Great to hear that you are sleeping like a log!

Sometimes when folks stop the steroids post chemo, the dexamethasone which you get for 2 days, they might feel a bit less energetic, or maybe a bit queasy as well, sometimes sick. But its different for everyone - just to be aware of this.

Kind regards,

Jeni.

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Fri Dec 18, 2015 10:04 am

Hi Ruth,
Good to hear your treatment went well, apart from the sickness, don't be afraid next time to ask to make sure you get the anti sickness, they told us never be afraid to check things, with them.
The tiredness might kick in as Jeni says Trevor had his treatment on Monday, he didn't have the steroids after treatment 2 of the Folfirinox, as it upset hs blood sugars too much (he was type2) he was tired on a Friday/Saturday/Sunday, Sunday being the worst, as the treatment continued he would nap most of the day away but by Monday he was feeling back to normal.
I hope you continue to do well, take care sandrax

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Dec 30, 2015 8:13 pm

I hope all on the forum managed to have as peaceful a Christmas as possible. I last posted a few days after my first Folfirinox chemo. I did feel more tired on days 5-7 and just went with the flow having a nap or just resting on the sofa in the afternoon. However, I still enjoyed a 16 mile bike ride with my husband near Buxton. It was a blue skied crisp day and lovely to be out in fresh air.

I found I was feeling far more like my normal self last week (2nd week) which I know is common. I had more energy, didn't need to rest in the day and was generally able to go out and do things. I was probably a bit silly in going for a 4 mile run as this rubbed my PICC line. I decided cycling and walking is better. We managed another 16 mile bike ride last week along the canal and ended up in a strange cafe with many old sweets for sale that I haven't seen for a long time. Thankfully no infections or high temperatures so far but I almost feel I am jinxing this just typing it!

Xmas was different to say the least this year. We usually 'do' the Xmas day and for many years now it's been myself, husband, son, daughter and my 80 year old father in law and my 90 yr old father and 85 yr old mother. It is strange to think my parents had me in their mid/late 40's as was a second marriage and they brought me into the world older than I am now inflicted with this illness.

I was due to have my 2nd dose of the Fox on Monday 28th. At my review and blood test last Thursday my neutrophils were 0.5. The Consultant told me this wasn't surprising as the injections taken for 5 days following chemo usually take a few cycles to build neutrophils. He also explained trajectory of neutrophils dropping for ten days post chemo and that they usually significantly improve over the four days before the next chemo. Unfortunately they hadn't improved enough at 1.1. I was really disappointed as they rescheduled the chemo for the following Monday. We have booked to fly to our little escape in Spain that we have had for the past two years this Saturday for ten days and this obviously messed this up. My husband spoke to the nurse and explained the situation. Result being I had two days to get neutrophils to 1.5. I hit the veg juices, vitamin C, turmeric and black pepper shots. Result,.. Neutrophils were 2.9 today so chemo went ahead today.

I had all anti emetics and have had no sickness this time. I did have an additional injection today (and will have each time now) as I experienced stomach cramping when the iritocen was started. I have noticed neuropathy in my fingers since the chemo finished, my words are a bit difficult to get out towards the end of the infusions but this is triggered by hot/cold drinks and improves afterwards.

I am enjoying the fact that the steroids are boosting my appetite and giving me a boost. I think it's only right that we should take any boost we can and I don't care it's drug induced! I have had a few stomach cramps this past few hours but generally am ok.
Fingers crossed I will be disconnected from the 48 hr pump on Saturday morning and will be ok to fly on Saturday p.m.
It feels so strange that for the past two years I've been skipping to the airport with only a ruck sack and few clothes. I will now have, injections (which I'll have to wrap in ice packs), anti sickness meds, steroids, digital thermometer, standby antibiotics, vitamins, hot line number and the essential Creons!!

I cannot believe how my life has changed in the past two months. I have certainly had dark moments and although very hard rather then dwell on the awfulness of the whole situation I am really trying to embrace the simple joys in life, my amazing friends and family and the fact that it could be worse!! Ok, it could be a hell of a lot better but I'm still here experiencing/appreciating life like never before,...I am not wishing time away or being worried about trivial things. This illness puts all of that into perspective. Live for the day, there maybe no tomorrow!!

Sorry for very long ramble!! Ruth xx

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Wed Dec 30, 2015 10:35 pm

Hi Ruth,
Its good to hear you are doing well, its strange how the treatment affects everyone so differently, Trevor had 23 lots of chemo and only had a problem with his neuts once, and he only had 3 injections just that once, good job as he hated them, said they made his thighs really hurt, he complained more about them than anything else.
I sincerely hope everything goes well and you get to Spain,and have a lovely break. Happy New Year to you all take care Sandrax

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Thu Dec 31, 2015 3:04 pm

Have a wonderful time away Ruth, in the sun.

Jeni.

Fifi

Re: Mum of 42 recently diagnosed inoperable PC

Postby Fifi » Fri Jan 01, 2016 1:07 pm

Hi Ruth,

I don't think I have messaged you before. I lost my Dad last April.

I just want to say that I think you are very brave to post on here and that you reply to others to help and support them.
You seem to be doing very well, and dealing with chemo very well. My Dad used to say he wouldn't know he had cancer if he didn't know. He suffered badly with diarrhoea and if it weren't for that, his life wouldn't have changed at all.
I think to fight this horrible disease you have to be strong minded, and stick 2 fingers up at it and carry on with life as you would before, and from what I read, you do that.

Derbyshire is a beautiful area and there are some lovely walks, as you know. I briefly lived in Ashbourne some years ago.

Stay strong.

Leila xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Jan 01, 2016 1:20 pm

Thank you Leila

I am sorry you lost your father in April. Like you have said this is a terrible disease and I had no idea until two months ago! I have to keep strong and fighting.
Wishing all on the forum a Happy New Year x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sheena » Sun Jan 03, 2016 11:19 pm

Hi Ruthus what a strong determination you have .my husband refused to give up on anything he was diagnosed in March .it is only this last week he has had a few problems,but he has assured me it's only a knock back and he will be bouncing back up very soon. Take care x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Jan 08, 2016 8:36 pm

We are enjoying the sun in Spain and are off to Valencia tomorrow for the weekend. I felt very tired on days 5-7 this 2nd cycle but feel pretty good now. We have been out cycling three times this week on the road bikes which is good. It is really strange as at times I feel completely normal and then have to remind myself I have this terrible/serious illness. I find it frightening when I read the statistics.
I know there are some who have posted on the Inoperable stories section and also on this forum who seem to have done well in managing a quality of life, the illness and surviving past the statistics. It would be so good to have more stories and posts like this! Let's hope the Governments investment into PC research makes this possible and brings better treatments and longer survival.

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Sat Jan 09, 2016 10:38 am

Ruth,
So glad to hear you are enjoying the Spanish sunshine, and feeling well, bring some back for us please we could certainly do with some here its so wet and murky. Enjoy your weekend in Valencia, and take care sandrax