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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kate2101
Posts: 33
Joined: Fri Jun 15, 2018 3:20 pm

Re: Battling to get treament

Postby kate2101 » Mon Jul 30, 2018 9:25 pm

Hi patrigib

That’s wonderful news, thanks for sharing. Lots of love to you both xx

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Tue Jul 31, 2018 3:19 pm

Yep, definitely dip day today, feeling a bit tired since the steroids have worn off. But that is fine, I have been up and about all weekend and busy. Also I am not constipated and have not needed to resort to laxatives. Took a different approach to Round 6, I have decided because the chemo/steriods can stimulate the appetite, I have been over-eating and bunging up the over-taxed digestive system. So I have treated myself as though I have come out of a session of food-poisoning. Yes the duck stir-fry does look tasty, but I will stick to the tomato soup for now. This seems to be paying off. Hopefully I will start feeling a bit better tomorrow.
toodotty
xxx

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Mon Aug 06, 2018 9:51 pm

Best laid plans ......
Got to the cinema on Thursday to watch Mama Mia, yes cheesy but a bit of fun, but I didn't feel 100%. This was a big thing for me as I haven't been able to sit for about 3 months without a lot of pain. I had a nagging pain on the right hand side under the rib cage all day, and felt lethargic. The exercise bike didn't go well and I had to cut right back to just a gentle ride.
Friday early I woke with a fever, 39.8 so took 2 paracetomal but this had little effect. This was a much worse fever than the previous two Thursdays so decided to call the cancer nurses. I was told to go straight to A&E and that they would ring them to let them know that I was coming as I needed to be fast tracked. Nothing like that to get you out of bed quickly.
It couldn't have happened on a worse day, my husband was due to be Best Man at his brother's wedding that morning, but my very kind friend said that she would take me in. I knew that I needed antibiotics and also suspected a blocked stent in my bile duct as the likely problem.
I do not have the energy to go into the details of the difficulties of getting either a quick diagnosis or appropriate treatment in the hospital, which is a different NHS trust to that of my Oncology team.
Any cancer patient coming into A&E they will treat as sepsis cases, I spent most of the day in isolation and have more needles and blood tests that you possibly imagine. I did tell them that I thought it was a blocked bile stent but it took them until Sunday lunchtime to diagnose this. Probably because they didn't send me for a CT scan until midnight on Saturday, they had already done an X-ray and an Ultrasound by this point neither of which would help diagnose this.
I won't go into the comedy of errors that constitute my treatment here, the people are all lovely but they just need to talk to each other.
I was so glad that I had summary medical sheet that I could hand them when I arrived so they immediately had everything to hand about allergies, medicines etc. However, first lesson learnt is that I will detail my treatment plan, and also have a copy of what Folfirinox chemotherapy is from the MacMillan website. I realised that I was up a creek without a paddle when I had to spell out Folfirinox for them and then try and remember what the individual drugs were called. It was at this point it became clear that the hospital could not get access to any of my medical records because it was a different trust to the one treating my cancer. I also had a battle because they were trying to give me a load of drugs that didn't seem necessary (turns out they were treating me as though I was reacting badly to the chemotherapy, which I wasn't. HELP is all I could think!).
Anyway, I am still in hospital, the knowledgeable staff have returned (do not get ill on a weekend) and I am vindicated in my refusal to take a cocktail of unnecessary drugs. The good news is that I have a stent replacement booked for Wednesday and they are doing their best to get a nickel free stent to replace the plastic one. The bad news is that I will still be in hospital until Thursday which means I will miss my consultants clinic and I will have to wait another whole week to get my CT scan results.

Thinking of changing my pen name from toodotty to stroppycow!

toodotty

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Battling to get treament

Postby Dandygal76 » Mon Aug 06, 2018 10:00 pm

Oh dear and poor you. It can be so frustrating at times but with the stresses on the system it can be a lottery at times. I was going to book to see mama mia - did you rate it as worthy?

Stay strong lovely... I always found the "roller coaster" thing a bit silly but then realised it really is an analogy that fits well.

xx

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Battling to get treament

Postby PCUK Nurse Jeni » Tue Aug 07, 2018 2:47 pm

Hi Toodotty,

Sorry to hear all of this.

The reason you would have had all the work up is that they will follow a neutropaenic sepsis protocol until proven otherwise - its the same across the country. Because you are on chemotherapy, it is something which needs to be acted upon quickly - so, antibiotic therapy needs to be initiated within 1-2 hours of arrival in A&E, and blood culture results are not available within that time frame.

Positive that you didn't need them, but actually, this is often the opposite, and folk do need them, so better to act proactively and start the process quickly.

The use of paracetamol while on chemo is also contraindicated if you have a temperature - I suspect you know this anyhow - the advice to any person who needs to take paracetamol while on chemo is to check the temperature first, then if it is normal, you can go ahead and take it. Taking paracetamol while you have a temperature and are on chemotherapy is not advised, and can be dangerous actually, although you are very sensible I know. But, perhaps review this with your oncology/chemo nurses when you are next at the chemo unit?

Hope that your new stent insertion goes well.

Kind regards,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Michaela1
Posts: 27
Joined: Sat Jun 30, 2018 10:16 pm

Re: Battling to get treament

Postby Michaela1 » Tue Aug 07, 2018 10:15 pm

Sorry you are having it rough at the mo toodotty, how's the temperature now? How are you feeling? I hope you bounce back quick. I am still a bit green with all the treatment stuff really. I though after getting detached from my bottle that that was that and if I was going to shave side eff3cts in would have been in those first two days! I am now learning they can just pop up out of nowhere.....how are we supposed to plan our lives??
Michaela x

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Thu Aug 09, 2018 8:44 am

Thank you patrigib, your husband gives us all HOPE.

toodotty

Kerry
Posts: 14
Joined: Wed Jun 20, 2018 6:22 pm

Re: Battling to get treament

Postby Kerry » Fri Aug 10, 2018 7:11 am

I’m so sorry to hear you’re having such a horrible time Toodotty. You’ve been such a huge support on this forum and I am always amazed at your bravery and positive attitude.

I’m thinking of you and hoping you improve quickly.

Kerry x

kate2101
Posts: 33
Joined: Fri Jun 15, 2018 3:20 pm

Re: Battling to get treament

Postby kate2101 » Fri Aug 10, 2018 9:13 am

Hi

Hope you’re back home and feeling better. Sounds like you’ve been through the mill recently! Good luck with your scan results xx

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Fri Aug 10, 2018 11:12 am

Hi All,
Thank you for the support, I am feeling much better. 2 nights sleep and food has made a big difference. I lost 2kg in weight during my 6 days in hospital so I have some ground to make up. Just finished mucking out the ponies, about to have first lunch, I am so hungry.

Hi Nurse Jeni,
I totally understand re the sepsis protocol and very thankful for it too. However, it is also important that the Doctors listen to their patients as we understand our bodies better than anyone. Also paracetemol is a bit of a difficulty re chemo/temperatures. It is the pain killer of choice (and was given to me when in hospital), but yes it can mask issues. I have learnt some valuable lessons from the experience, (and not just pack more than one pair of spare knickers!), I felt generally lousy that day against the normal run of things even before the temperature.

Keep going everyone, there will be dip days, there will be good days.

toodotty
xxxx