Scream!!!!!!!!

[LilyG]

Well, where do I begin...Trevor had his last chemo (Cycle 6, Week 3 of GemCap) on 16th Feb. Since then we had no blood tests but a CT scan on 10th March. We went for the results on 18th March and were asked about Bloods. We said that Trevor hadn't had any since 15th Feb and thought it strange but, thought that they new best. Although we were told in September that if nothing had changed or if the tumour had shrunk they would look at radio, when we went for the results we were told that even though things were stable they would need to review at an MDT to see if radio was feasible as there were multifocal tumours (which was new to us as we though there were 2 large ones but now we are told that there are many fusing together).......sooooooo...we were asked to come back yesterday at 3pm to revisit the results of the MDT. Only on Wednesday evening, the Oncologist's secretary rang Trevor to ask him to come in for more bloods as his kidney function had deteriorated (he only has 1 kidney if you remember as he had previously had Kidney Cancer). Dutifully, we arrived at hospital at 9.30 so that they could take bloods and get them tested prior to our meeting at 3pm. We got home and then received a phone call asking were we where - "At home, our appointment isn't until 3pm," we said. "But you're meant to stay here," they said. When we asked why, we were told that Trevor needed an ultrasound and that they couldn't book it unless he was IN the hospital. So we went back to the hospital to be told that it wasn't until 4:45 - nearly 2 hours after the Oncologist appointment - "No matter," they said, "Just see her after you have the results." No point in going back home, so we waited...and waited and then at 6pm the Oncologist walked past us in the empty waiting room asking us what we were doing, "Waiting for you." She sat with us (in the waiting room) and told us that Trevor needed to go to the xx (now) as his creatinine and urea had increased significantly, he couldn't have radio (too many tumours) and that they would revisit his pathology to see if it was definitely adenocarcinoma and not endocrine!!!

We were in a state of shock: a) we'd spent all day in the hospital, b) Trevor needed to be admitted, c) our kids had expectations similar to ours and d) there was an uncertainty (albeit small one) over the diagnosis. This was delivered in about 5 minutes in a waiting room.

So terrified we went home, explained to the kids and packed Trevor's bags. When we got to the xx, they took his Blood Pressure and it was 220 / 115 - it's not gone down much today but his creatinine has reduced from 247 to 215 with one bag of saline. At 10pm he is waiting for the Registrar because he wants to ask him about the blood pressure and also we don't know what is happening.

Only with time to reflect am I thinking that if nothing has changed now why was radio a possibility (6 months ago) and now not (even though nothing has changed); why hasn't his blood pressure been checked since September 2009 (OK in hindsight maybe we should have asked) so we don't know if the hike is something new or it has been rising steadily; similarly with his creatinine and urea has this been on the rise since mid-Feb - we don't know; scarily (but a longshot) he may have been on the wrong chemo for 6 months; and finally, we can't find anybody to give us a plan and we will wake up to the weekend (if we ever sleep).

Am I being overly critical / expectant???

Moan over - enjoy your weekends x

[Nardobd]

Hi Lily and I'm sorry you both had such a horrible day yesterday - let's hope today gives you more answers than questions!

Stress can cause blood pressure to rocket (I'm a sufferer of high blood pressure myself). Don't worry - I'm not suggesting that you tell Trevor to 'chill'(!), merely putting forward a possibility that it was spending the whole day in the hospital and now the worry of the results that caused Trevor's high BP.

Now that Ted has finished chemo, he only has blood tests once every three months - I appreciate that Trevor is in a unique position, having only one kidney and that's probably not sufficient for him, but the hospital clinic/doctors will need to be reminded of that so that they keep a closer eye on his bloods. It's good that the creatinine has reduced so significantly and I just wonder whether the worry and day in the hospital didn't contribute to the high levels of creatinine and urea too. I'm no expert in this area but it seems to make sense that if Trevor was dehydrated (and let's face it, no one gets enough liquid when at the hospital all day) then the levels would be concentrated.

Whether or not the creatinine and urea have been on the rise for a month, the important thing right now is to get this sorted. Once that's been achieved and Trevor is back on an even keel you will, no doubt, have some hard-ball questions for the doctors!

As for the radiotherapy, I suspect that the doctors are being extremely cautious to protect Trevor's remaining kidney. Like all medical treatments radiotherapy has side effects and it's a case of balancing the benefits and consequences. Inevitably each doctor has their own opinion as to what balance is right and that's probably why the issue was discussed at the MDT - so that the oncologist could get a range of opinions and, along with the rest of the team, reach a consensus as to what is best for Trevor.

As Penny said, if Trevor has endocrine tumours, that's good news. However, like you, I think that's a longshot because the particular symptoms of the endocrine cancers would have suggested this to the oncologist earlier (see the Cancer Research website on this at http://www.cancerhelp.org.uk/type/pancreatic-cancer/about/pancreatic-cancer-symptoms#rare).

Whilst staff are scarcer in hospitals at weekends, that shouldn't be allowed to have an impact on Trevor. This is where you come in! I found that if I insisted (politely but regularly) that we got results from tests, more information, answers etc then eventually it worked. It's frustrating and long-winded but keep going!

Finally, no, you are not being over-critical. Whilst the doctors see this every day, it's a crucial and worrying time for patients and their families. This is understood by the medical staff and all of us on here and we all have experiences of mix-ups on appointments, scans etc. The frustration, worry, panic and shock is bound to make you angry. There's nothing I can say to reduce that - the only thing that will help is answers - but if you need an ear (or shoulder) we're all here for you.

Sending positive thoughts your way.

Nicki x

[LilyG]

Thank you very much for your considered and speedy replies.

Believe it or not, I feel like that most times just every now and again when I am alone, the tension and worry gets the better of me.

The really scary thing now is that without radio and with the concern over the kidney, this maybe the end of any treatment. I know I am jumping ahead of myself, but sometimes it's very difficult not too.

But thank you once again...a good dose of sanity always helps.

X

[Nardobd]

Hi Lily

We all get scared once in a while and you're right, we do feel afterwards that we've over-reacted a bit. However, it's how you feel at the time that matters and if anyone helped in any way then that's great.

Ted's not on any treatment at all right now and, so far as we know, the cancer is still stable, so even if this is the end of Trevor's treatment (for the timebeing) it's not automatically bad news.

You're not 'jumping ahead of yourself', you're very sensibly trying to prepare yourself for what might come next. It's a human trait (wait...*checks herself*...yes, am human!) and I do it all the time. It's by doing this that we ensure we can cope - or at least cope better than we would have without that preparation. Well, that's my excuse, and I'm sticking to it!

Let us know how Trevor gets on.

Love

Nicki

[LilyG]

Unfortunately Trevor is still in hospital. Having spent a few days at the xx , they sent him to XX Renal Unit. They are pretty flummoxed: BP has come down to 150/80ish whilst he is on his medication and his Creatinine was stable (+/-5%) at around 200 and low Platelets of around 100...remembering no chemo since mid-Feb so a bit scary. His ultrasound shows no swelling to the kidney and his other bloods are unremarkable. He was given weekend leave and we went back today and were told that he may be discharged later but his bloods came back with Creatinine of 220 so he is being kept in. They are reluctant to do a biopsy of his kidney so I have no idea how we move forward.

Kids have been extremely understanding throughout all of this especially considering Easter holidays.

If anybody has any bright ideas, I'd be really grateful...PC treatment takes a back foot whilst all this is going on which is just as / even more scarier.

x

[Nardobd]

Hi Lily and I was so sorry to read your post. It's typical that it should happen over Easter and whilst the children are off school but kudos to them for being so understanding.

Not being a medic, I have no bright ideas on that front. I would, however, say that whilst I understand why the doctors are reluctant to do a biopsy of the kidney, I'd be pushing them to do 'something' (not exactly sure what 'something' is, but that's why they have so much training!). After all you and Trevor have been through, you need some certainty - I always find the 'not knowing' bit terrifying and that doesn't do anyone's blood pressure much good!

My thoughts are with you all and if you need a shoulder (or just to vent) don't forget we're here.

Nicki x