Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

I was all psyched up to ring today as I'd had a lovely morning walking DDog and gardening then DS1 rang to ask me to pick him up from school so I'm waiting again. I'm still confused. I was told to see GP for results. I don't really like the receptionists giving me results but if they do and all is fine, no taking an appointment someone else could have but then I can't discuss what we should so with the doctor. If I ring and ask if my results are in at 8 they will tell me to ring back after 2pm then I'll have to say I need an appointment to discuss results. Argh

They probably do all results via an appointment, otherwise if you knew you had to make an appointment you would know it was bad news. They may want to discuss something minor related to your test.

My GP has not given me any appointments since my initial one as I was then referred to the main hospital. My biopsy results appointment has been at the hospital with a consultant, so maybe the fact it is a GP one is a good sign?

The quicker you call up, the quicker you can put your mind at rest.
X

Normally its results on the phone then they tell you if the GP wants to see you.

I decided to be brave and stop fanning about like an idiot.

I rang. They are in. Doctor wants to see me. She's back Wednesday so I'll ring then and hope I can get an appointment. Thanks for the nudge.

Well done for ringing year All the times I've had bad news it's been through the hospital and never the doctors so I hope yours is good news

I've never had results from the hospital so it's not telling me anything that I have to see the GP. Just a couple more days. Thank you.

year I am so glad you found the courage to call. I have no words to offer, but surely if the results have been back for a while and things were bad the doctors would have called you with an appointment?

Noodles do you have other family to help out with the kids? Your ex sounds useless Hope you enjoy your day out at the weekend, I didn't peppa pig world was a thing

Mrspotter12 - I don't know how long they have been back but they don't look and comment necessarily on the day they come in. I'm trying not to second guess as I'm either okay or I'm not or I've got something unexpected but not too serious. I'll be ready with my phone at 7:59am!

year - big hug xx

Well done year glad the gentle nudges worked

My ex is useless tbh purple & I think it has contributed to my worrying at this stage too. I have lots of really good friends who I can call on, plus my parents are retired and frequently visit as not local. I am not sure how I would have managed this last year without them, they have been nothing short of fantastic.

I have so far avoided Peppa Pig World. It is in the New Forest down in the South, so miles away from you in the NE. I think there are lots of age appropriate rides and masses to do. You can get 2 day tickets for the price of a 1 day ticket, but I will need to be back for my dog and I don't live that close to it to go back again the next day. It is called Paultons Park if you get a mad urge to visit

The CT scan was possibly one of the most relaxing things ever. Not sure if it is because I woke up just after 4am today & have scratchy eyes, but I could have nodded off in there. That warm sensation is quite nice in a weird way. I could feel it all up my back and in my throat too! I think I am just shattered! Results in 5-10 days, but am hoping my Oncologist can get them for my appt on Thursday.
One step closer to my treatment tho

How are you feeling today purple? Any better?

Hello to everyone

I enjoy the CT scans too, luckily I'm not claustrophobic in the slightest. I think my 16 year old has thankfully passed the Peppa Pig stage

I still feel a bit meh but my lovely DH has booked us into a local B&B for the night which has a hot tub and room service. I'm currently crashed out on the super king size bed. Heaven! 😊

Good luck for the results, and good to know at least you have good friends

purple that sounds blissful :)

Year well done for phoning I hope you can get an appointment on Wednesday. I imagine they'd want to see you whatever the results are because either they've worked out what's causing your symptoms, or they haven't so you'll need to discuss what's next.

noodles I'm glad the CT scan went smoothly. I'd forgotten about the throat feeling! Weird stuff. Your ex sounds awful. I'm glad you've got other support

I cannot sleep as I have ridiculously restless legs. I've never had it this extremely before. It's like someone else is controlling them very annoying. Distracting myself with my iPad seems to be helping. Otherwise might have to tie myself to the bed

Hey leslie I hope your legs have gone to rest now? Restless legs is so annoying!
I have had capecitabine gripes all night as I accidentally started my loperamide too soon and have ended up a bit blocked up - left off the loperamide last night and have been gurgling all night - so tired!!!

How are you doing purple? And good luck year - I am sure you will feel less helpless when you know what you’re dealing with?

Hope everyone else is managing in the heat? I’m desperate for a cold drink/ice lolly but of course poxy oxi prohibits it

Morning!

That sounds lovely and very thoughtful purple and just what the doctor ordered.

Leslie I hope your legs have calmed down and you managed to get some sleep.

Addle is there a reason why you cannot have cold drinks/ice lollies etc? Is it too uncomfortable or are there things you cannot eat when doing chemo? God I have all of this to look forward to don't I?!

Good morning

I finally went to sleep around 4. I'm going to try and catch up this morning!

addle you poor thing I hope it calms down soon and that you can rest today. How many days do you reckon until the oxi wears off?

noodles the oxaliplatin, which is used for bowel cancer, causes extreme cold sensitivity so you cannot eat or drink anything cold (or be exposed to cold air - not really an issue in this weather!). So it won't be an issue with your chemo, though you might find your tastebuds go a bit haywire, which might affect your diet :)

Some HCPs advise to avoid some foods (e.g. blue cheese, live yoghurt) while on chemo due to infection risk. But my oncologist said it's absolute bollocks for outpatient chemo (unless you're hospitalised with neutropenia, in which case they'd advise what to eat).

Morning!

I’ve realised, reading your post addle that I’m coping just fine in the heat. This is quite a revelation, as having a deranged bodily thermostat was a feature of the early months of treatment.

Answering a question from ages ago, no-one knows when I’ll get the results from the detailed test, as it’s had to be sent to a different hospital’s labs (not everywhere does it) and they have to grow it. So it’ll turn up when it turns up. I’m on a ‘no news is good news’ basis - they’ll only call before my September appointment if there is anything unexpected.

I’m seeing an osteopath to sort out my hip. I had all sorts of aches and cramps, and he has pronounced me very unlevel. I’ve had three sessions, and it seems to be improving. So plan to be MsAnnoying continues, even in this heat.

Hope it’s bearable for everyone else. I do feel for in-patients, as hospitals are so often too hot

Hi I am new to this thread and have tried filtering to see if I can find the information I need without success so thought I would ask. I am waiting for the dreaded aspiration biopsy result but have had CT Scan, blood tests, x-ray and ultrasound. My consultant has arranged a core biopsy (for non Hodgkinson or Hodgkinson confirmation) for next Monday and I wondered if anyone could tell me how bad it is? My diagnosis looks like Lymphoma in my neck but it hasn't shown anywhere else on the CT scan. I will also be having a PET scan when I receive the appointment. After reading up on it I can't see no difference to the CT scan? Both have dye flushed through your system. It looks like the same procedure. Anyone who has been receiving treatment for this and has any further information for me would be gratefully received. I have been told once these tests are out of the way I will be referred to a Haemotology specialist for a treatment plan. Seems to take forever to get test results anyone else finding that?

year you inspired me, I've called about my initial oncology appointment - and it's this Friday lunchtime!!!! Thank you xx

Welcome mymar but sorry you need to be here sorry I don't know about biopsies as I've never had one. Hopefully someone else can help.

A PET scan is very similar to CT, but they don't use a dye. It's a radioactive glucose solution. Cancer cells use it more than normal cells so the scan measures levels of radioactivity and builds an image, which they can use to identify cancer and how active it is.

iVampire fingers crossed for no news until September then :) I'm glad the osteopath is helping.

I've recently woken up feeling much more refreshed.

Mrspotter well done for phoning and good that you don't have too long to wait :)

How are the legs Leslie? under control today? I have workmen transforming my front garden and because of the heat they are turning up early - 7.30 today. So I haven't had my usual 8am lie-ins this week.

I'm feeling well otherwise and I have to keep reminding myself it's a very false 'well'.... this heat is awful though. I can't do anything other than a short walk.

Hi mymar sorry you’re here, but welcome.

I am a fellow denizen of haematology, but I don’t know that much about lymphoma. I have leukaemia, and had bone marrow aspirations and a bone biopsy, both under local as your biopsy probably will be. I was advised not to get the biopsy site wet (even a shower) for 24 hours, so in this weather, have one just before you go as it may well be the same.

It can take a while to get results if they need to grow the cells of the sample in order to test accurately. My tests took about 10 days to results (except this latest blood test which is taking forever).

I had a CT scan, because I had unusual presenting symptoms, which led to incidental finding of a benign liver cyst which is still being monitored. I didn’t need a PET scan as leukaemia is all about the blood and marrow, not the lymph system.

Some form of lymphoma respond extremely well to treatment. I have my fingers firmly crossed for you that it is one of those types.

Just had a phone call from the consultant who has had the results of the needle biopsy which shows suspicious cells but not a confirmed definite cancer cells. He says he was expecting the needle biopsy not to be a definitive answer but that the core biopsy should be more accurate. He has sent a letter to the Haematology for further investigations. Not sure how long this will take to get an appointment, he also thinks it will take 7 - 10 days for the results of the core biopsy. These are all time that seems to take forever to wait for. Doesn't help the mental wellbeing of us and our families.

WhatWouldLeslieKnopeDo- thanks for the info on PET scan and the welcome. We have a family holiday booked in the middle of August. Not sure how long it will take between now and then to get a treatment plan started? Anyone any ideas or is it a case of it depends on the individual hospital? Think I will just have to hope that a week away won't interfere too much with that.

iVampire - thanks for the info regarding biopsy and shower will definitely have one prior to going.