Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

@thereisonlyoneofme could you ask Hospital Transport to take you for your scan? I have always driven or got taxis (which get expensive) to appointments but I was sitting next to a lady in the chemo unit who said that she just rings and says she's a cancer patient going for treatment and that gets her booked in! Who knew it! It might be worth a try and it's one less thing for you to worry about. I'm hoping the ENT appointment was helpful and reassuring.

Im sorry to jump on here

Im so scared. I've had a raft of symptoms, pain under right right, Gas, wind.

I've just had an abnormal FIT test of 10, they said it's borderline but with the symptoms it's very worrying.

Im completely freaking out, I have 2 small kids

Welcome @ilkleymoorbartat to the thread nobody wants to join. May your stay be short! The first rule here is DONT GOOGLE! And don’t borrow tomorrow’s sorrow as somebody said the other day. That result is just at the upper end of normal* and everything may well be fine so try not to run ahead of yourself. You will probably get an appointment for a colonoscopy with a rather drastic bowel prep regime that will tie you to the bathroom the day before the test. That will likely show the cause of your symptoms. We have all been in the state of limbo not knowing what is going on and it’s horrible. Feel free to rant and moan here, while knowing it’s highly likely you will get the all clear and slink away in a week or two.

*I used to be a GP before everything happened…

Sending lots of calming waves
Top

Thank you so much for replying @TopOfTheCliff

I don't know how I'm going to get through the next two weeks. Some off bloods were also raised some im feeling pretty resigned to it be cancer.

I have been having investigations for a year. They originally thought gallbladder because of the site of the pain, and I had a fit test in April last year which was normal at 5. But now this. I

@ilkleymoorbartat I'll tell you what to not do, that is drink through it. Makes the anxiety worse. Honestly you are at the worst part now, the not knowing what your dealing with is a horrible place to be, once there is a plan it's easier, it really is.

Ive had nine weeks of everything being up inthe air. Hopefully ypu will know much quicker than that. It really is horrible that feeling. Fingers crossed for you.

my good news is at long last I have a plan! Ive signed the consent for Paclitaxel and carboplatin once a week for three weeks well, the pac is once a week, and the fourth week is off. This goes on for three months. Has anyone had this regime?

@EachandEveryone so glad you have a plan!!

The consent form for treatment always made me laugh a bit, they always say are you happy. And I was very much, no I am not happy but I am consenting to it, I guess they have a script.

*Fantasea * I went for private ENT consult yesterday and had a MRI as well. but call back today saying they want a rescan!Im going off the private route fast, Ive got to go in for a blood test beforehand so that will be 4 times Ive done the trip.
So Ive go to there twice and then twice to my oncology dept for blood test and scan! The hospital transport means you have to be there hours as they take other people and actually Im not sure I would be eligible as I dont live in their catchment area. I know their ambulances dont come to my area I have to get taken to my local Trust. I had a friend take me yesterday but thats not really an option. I shall have to work something out. It all gets so complicated doesnt it
its bad enough what we are dealing with.

Iv e just had a very upsetting phone call from ENT consultant I saw yesterday, (private) for balance problems the MRI scan shows lesions on my brain. Im totally devastated, I dont know what to do now.I was prepared for the OC to come back, but thought it would be in my body when it did .

@thereisonlyoneofme - I'm really sorry to hear that. Did they say any more about what the next steps might be? You must be beside yourself while you wait to find out more. Presumably 'lesion' can mean a range of different things? Not all cancer related? (Not my area at all, but my DH has Parkinson's so I have some idea of how scary things feel when your brain is involved.) Sending a very tight hand hold.

@EachandEveryone - I'm so glad you finally have a plan. If obviously not 'happy', you are at least on a forward path now.

@ilkleymoorbartat - welcome, and may your stay here be short. But if not we will be happy to hand hold, swear and chat. (I grew up in West Yorkshire and now live somewhere very flat and your name has made me think that I would quite like to be somewhere high up, bleak and blustery today. It would suit my middle of chemo mood.)

@thereisonlyoneofme
Oh that's rubbish news. So sorry. Just wanted to say that there are now 2 centres in the UK which do the v. high-tech treatment - @TopOfTheCliff will know the name - that patients used to go abroad for. New one at UCLH. Something to raise with consultant?

Are you in touch with Macmilllan? They can be genius when things get complicated. I'd advise switching back to NHS sharpish.

(I'm just a lurker now. Hemicolectomy for colon cancer 3 years ago. Top end Stage 2. Plus previous major abdominal surgery for a 2 kilo plus ovarian tumour which turned out to be non-malignant - 8 yrs ago. I'm the Pollyanna to Top's Tigger. i.e. looking on the bright side with less bouncing.)

@ilkleymoorbartat

Try not to get ahead of yourself. Lots of other things could be causing symptoms.

I've had 3 colonoscopies now. The worst part for me is the low-fibre diet in days beforehand and the enormous amounts of fluid they expect you to drink. I'd also opt for the sedative. Didn't make me dopey. Just relaxed and happy - think that might be the ketamine. I was sitting up in bed afterwards, gushing about custard creams as if I was at a rather posh tea party. And the best thing is you probably won't have to wait ages to get your results, because they (and you, if you're watching the screen) can get a close-up view in real time if there is anything amiss and doc will tell you then and there before you leave.

But waiting and not knowing is hideous, so lots of comforting vibes coming your way.

@Thymeout Happy New Year! I’m glad you are able to be just an occasional visitor to Cancerland now. Do you mean photon beam therapy? I had a patient once went to Liverpool for that. It’s very precise so does less damage to the surrounding areas I think.

@thereisonlyoneofme I am sorry to hear your news. I wonder what the oncologist will say. What would you hope for? If this affects your living independently I guess you might need some help at home, or check into somewhere nice to be looked after. Sending hugs x

I tried out a new thing yesterday challenged by my trainer. I joined an Aquacise class which was brilliant with a fit young instructor, funky music and lovely warm water. The class was friendly but kindly ignored me thrashing about in the water. I even got a swimming cap to hide my bald head. I think I shall go back again but it put me to sleep for the afternoon! Energy levels are still down by Tigger standards.

My op is in two weeks but annoyingly MIL is hellbent on getting FIL home that week. Poor DH is going to be run off his feet if that happens. I have been doing tha laundry and shopping for MIL and I’ll be out of action for at least two weeks. I darent plan too much ahead in case I need more surgery or Chemo afterwards.

Top x

Thank you @dotty2 and @Thymeout

Really nice to know there's somewhere to get support.

@thereisonlyoneofme sorry to read your update. Sending hugs, I hope you can get some clarity on a plan soon.
@EachandEveryone I'm pleased things are happening at long last. I had paclitaxel as one of my chemos and didn't find it too bad, I avoided neuropathy bit I did get aches 2 or 3 days after each treating which lasted a day or two.

Not so bad in the grand scheme of cancer but another issue. I saw one of the CNSs yesterday as I'm sometimes sore to the touch around my foob. It's the areas which were zapped with radiotherapy. Anyway, after a dr had a feel too they think it's nerve pain and I may have a capsule forming around the implant. This means another op and the doc said perhaps a DIEP this time. I go back in 3 months and if I go ahead it's likely a 2 year wait. It seems quite a big surgery and lengthy recovery. New implant would be 50/50 risk of failure.

Couldn’t read & run, as they annoyingly say, @thereisonlyoneofme I’m so sorry to hear that update. That really is the shitty icing on a shit cake.

I hope you will know more soon about type of lesion etc and way forward. As someone
upthread said it may not be as bad as you fear. But I know saying that is ridiculous as we will always jump to the worst possible mountain lion conclusion.

big handhold.

@thereisonlyoneofme I'm so sorry to read your update and also hoping it's not as bad as you fear. When do you get to speak to your onc? I'm hoping you'll be able to get some answers and reassurance soon. Just want you to know that I'm thinking of you Xxx.

@thereisonlyoneofme im here too hoping your Oncologist can clarify the results soon and they are reassuring. I had my first appointment at Christie’s yesterday, my Onc recommends herceptin + paclitaxel for 12 weeks, starting end of Jan. The Nurses were lovely and the chemo ward had the same calm vibe as a hotel spa … just without the music & candles…Like @Vinorosso74 has said, Onc also mentioned that the nausea isn’t as bad with paclitaxel as with other drugs. Manchester is quite a trek for us weekly though so let’s see what my highly recommended NHS Onc says (once I finally get to see them). My local hospital is just 10 mins away so would be much easier.

@incognitodorrito that sounds positive. I found Herceptin easy to tolerate with just a dripping nose and slightly sore bottom from it. Paclitaxel was easier on the guts but as always I got horrendous joint pains. I think that is just me though. Everybody else seems to tolerate it much better than me. My nails are a bit dry and scraggy now I have finished it too. Would that be a weekly visit?

All well at Tops Towers. Feeling slow old and fat but I’m still here! Love to all
Top x

Well Ive been chasing an urgent prescription for half of yesterday and all today so far. No one ever gets back to you from the NHS. Of course its the weekend tomorrow

and its not good news, two at least big lesions, so I think it will be Goodnight Vienna soon

Wise words elude me, I’m sure someone else will have some good advice for you, this thread seems to have the best people on it. Sending all the positivity I can muster x

@thereisonlyoneofme Im hoping you’ve received those prescriptions. It’s an absolutely maddening and frustrating system at times. When are you due to see your Oncologist again ? You & your Dog are very much in my thoughts xx

@thereisonlyoneofme I'm so very sorry to read your update and am thinking of you and your little dog Xxx.

@thereisonlyoneofme I am so sorry to hear your troubles. You have been so brave battling through all this on your own. Can you get any of your family to help you with this next stage? I imagine it will become increasingly difficult for you to do all the running around. There ought to be a luxury hotel you can check into to be looked after, with staff to fetch things for you. I’m tempted to do that after my operation to spare DH having to look after me yet again.
Sending love
Top