Battling to get treament

[toodotty]

Hi again all,

Sorry if I seem to be repeating myself and not replying but the forum is a bit reluctant to update itself and I have just picked through a whole raft of replies that I haven't seen before.

Firstly, what I am going to exercise to now that the footie is over. 45 mins = 10 miles, I will now have to find something else, (hopefully more riveting than some of the games), and yes England did do well but looked like they ran out of steam at the end.

Re Dr Dooms and statistics : half of all patients diagnosed with Stage 4 PC will not survive for more than 4 months; half of all patients diagnosed with Stage 4 PC are aged 75+ and usually have complex medical needs. I therefore conclude that most of the poor people who do not survive more than 4 months are likely to be aged 75 and over, a group which happily I do not belong too. So I must therefore have a better chance. I was also advised that Folfirinox only works for 30% of patients, I am in the lucky 30% and working hard to stay there. There is plenty of evidence out there of S4 PC patients who live for much longer than the threatened timescales, 50% survive more than 4 months. The chap who set up the Nanoknife warriors lived for 4 precious years, he was 44 with 3 small children.

"we are each our own statistic"

toodotty

[toodotty]

Hi All,

Serves my right for being so smug about how well I had been feeling, it all caught up with me on Thursday. After a great week, I woke Thursday morning with a headache, thanks to the unbearable heat, by Thursday afternoon this turned to a raging temperate (38.5 and rising) and shivers, I was under the duvet wearing a bobble hat. Took 2 paracetamol and it brought the temperate down but I felt completely done in for the rest of the day. Oddly, the same happened the day before my round 5 chemo but I put it down to a tummy bug. Obviously had to keep a really close eye on things as it could signal a serious infection, but I was fine by Friday morning and was able to take myself to the hospital. I spoke to my cancer nurse and said that it may be related to the bilary stent so we need to keep a close eye on it.

Round 6 has now gone through, just about. Had over a two and a half hour wait before they hooked me up yesterday which wasn't ideal (again). There was further confusion over my drugs to take home and another long wait for this to be sorted. So I was in a sweltering hot ward from 9.30 until 6.30 for treatment that could have seen me out in 5 hours. I am amazed that I didn't faint as it was not possible to open the windows and there was no air-con or a fan within reach of me.

So, what next? I am actively following up the Nanoknife option which I will post under a separate topic. So look out for this appearing shortly.

Meanwhile, I am in hyper-steroid mode, so getting loads of stuff done, but expect the kick back on Tuesday/Wednesday when lack of sleep will catch up with me! Hey ho.

Keep positive everyone,

toodotty

xx

[kate2101]

Hi

Sorry you had a bad Thursday but so pleased you managed your treatment although it sounds like a nightmare day!

Had my round two and so far so good, better than one and nausea under control thank goodness. No doubt dip after steroids but a day at a time.

Looking forward to your NanoKnife investigations, be wonderful if this is a route you can follow, everything i’ve read about it sounds promising. What are your feelings about Heidelberg? Can they offer us stage 4 sufferers more than the UK?

Must get back on my exercise bike, my bum has almost disappeared. Also bingo wings! Have some hand weights that I’ve started using, can’t believe how quickly muscles vanish!

Stay positive! xx

[toodotty]

Hi Kate2101,

Glad your round 2 was better and it sounds as though it is already having benefits which is great. I lost most of my hair on this round, it sort of melted and all stuck together when I had a shower and we had to cut it off. It was quite long and thick and to use my husband's words "it looks like someone has skinned a Labrador", there was so much hair. I now belong to the Billy Ballie style of hairdressing, wispy bits on the end but not much on top! Can get away with hats otherwise I look a bit scary.

Re exercise bike, take it easy and listen to your body. I can't use mine the first week, I just do step ups on the bottom step to help with muscle wastage and then start off slowly the second week. I do have a heart monitor on mine which I use to gauge how my body feels about it, this is a good indicator as to whether it is OK to continue, but also encouraging as to how quickly I recover.

Re Nanoknife v Heidelberg Whipple option I will post this on separate threads as I have been doing a lot of research into one versus the other.

toodooty

[patrigib]

Just to give hope : my husband, now 75 was diagnosed stage 4 on 3rd Sept. 2014. He only has had chemo, and still alive, although very tired.

Statistics are what they are....

[kate2101]

Hi patrigib

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

[toodotty]

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]

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]

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]

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]

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]

Thank you patrigib, your husband gives us all HOPE.

toodotty

[Kerry]

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]

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]

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