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

www.independent.co.uk/news/health/medical-cannabis-uk-prescription-legal-epilepsy-pain-relief-home-office-moj-nhs-a8464766.html

Addle look!

Morning everyone x

Leslie that is one VERY big bandage you have on your toe! Hope it's not too sore this morning. I didn't ask about the operation, they just said it would be a stoma. I was all geared up for having it there and then but I'm glad I can at least get another chemo in before it happens

Addle when I was having chemo I totally went off coffee and tea but couldn't face cold drinks, have you tried herbal/fruity teas? I used to drink them luke warm which was tolerable

That sounds a nightmare addle can you drink room temperature drinks or does that clash with your poxy oxi?
My nausea was awful after Friday's chemo. I couldn't drink a hot drink at all (the thought of tea or coffee wasn't good & I normally love an Americano) I did try a couple of fruit teas which I am not normally keen on and peppermint. None made me feel less nauseous or particularly hit the spot. Ribena seems to be working best for me now and fizzy water feels quite refreshing.
I can see why you drink so much chocolate milk now Leslie and am def putting some on my next food order as am fancying that now too

I love Nicola Walker too Leslie Unforgotten was brilliant last night, I watched the first 2 series as box sets over a couple of days each, so it is killing me to wait weekly for the episodes. At least I only have until Sunday for the 3rd episode. All series are available on the ITV hub if anyone is looking for a good watch.

I didn't go camping in the end this week as my insides were not playing ball and it just felt too hot to move from the sofa & I felt too sick. My friends are still there today, so am going to attempt to be sociable for a while taking a picnic and hopefully the girls will still feel like they have had some outdoor time with their friends after all.

I hope everyone has a good day. waves & hello to everyone

Yes I did try cooker drinks today and was much better thanks! Just drink slowly and warm in mouth and so much nicer than tea!

Hope everyone surviving in the muggy bleurgh! Was so stormy this morning and now muggy again. come back cool grey days - all is forgiven!!!

Cooler!! Not cooker, that would be

Glad the cooler drinks were a success addle

How was your daughters birthday dulce? Not sure exactly when it was/is, but hope she enjoyed it all.

How is your toe today leslie? I hope not too painful. My PICC was aching again last night, not sure if I slept on it a bit oddly or if it just does take a while to get used to it & for it to calm down. I have wadding and a tubi grip on it at the moment. I have bought a sleeve type cover too in advance as I saw someone's at the cancer centre which was not strapped down etc and it made me cringe.

I hope everyone is alright in the heat. It has rained this evening briefly by me, so am hoping for a cooler night as a result.

Morning 🙂

I’m finding it quite difficult reading about people’s treatment symptoms so I apologise if I skim them a bit and don’t mention it. It’s going to take me an age to remember names etc too but I hope you all managed some sleep in the cooler weather, it was bliss actually getting under my duvet last night. I had a good day yesterday and was actually really hungry! That hasn’t happened for a while.

MDT meeting was yesterday, I got a call in the afternoon to put it out of my mind for the weekend (eh? 😂) and that they’d call again on Monday with an appointment for Tuesday so things are moving along quickly.

It’s a bit weird knowing that there’s a whole team of medics who know what’s going on in my body whilst I don’t but I do feel more relaxed now I know I’m being seen quickly.

Hope you all have a good day x

Morning @tsonlyme my first meeting is on Tuesday too! Let me know how you get on x

Will do ranout and you too x

Good luck both of you for Tuesday :)

noodles toe is fine thanks, just can't get any shoes on! I hope your PICC calms down soon

I'm camping this weekend. We had a lovely storm last night and it's a bit cooler today. I hope it's cooler for all of you too :)

Have a good weekend!

I'm another Tuesday person- I chased up my lumpectomy date yesterday and got told I should hear then.

Best of luck tsonlyme and ranout.

I walked home with DS yesterday during the thunder. It felt like an adventure

Good luck everyone with your Tuesday appointments

Leslie I hope the rain eases off for camping, I haven't done that in years!

I've been in touch with my consultant and he says I can't have any more chemo until I've had a stoma fitted. The surgeons said it wasn't urgent so it could be 4-6 weeks before I even get an appointment so my consultant is going to chase them up to get me in quicker
As rubbish as the chemo makes me feel I hate the thought of just waiting around and having no treatment. I'm keeps everything crossed I get my stoma soon. Never thought I'd end up saying that

We had an amazing storm last night so much cooler here today, typical when I have 3 loads of washing to do

Getting a bit teary (disclaimer I’ve had wine) reading all you guys stories and how brave you all are.

I saw the GP 16 days ago and still no appointment through. I was away this past week though which GP noted down so not sure if that’s extended the wait by a week? I called my surgery and they’ve said the hospital had confirmed that they’ve taken me on as urgent, so hopefully I hear something soon. I’ll be going to the appointment alone as will have to get someone to watch the dc, so hoping they tell me it’s nothing like last time. The longer I’m waiting the more convinced I am that it’s nothing at all, so I guess that’s good!

Purple I know what you mean about wanting the chemo! I had a break last year for a hysterectomy and debulking but - very long story cut short - the hospital was absolute crap, refused to answer calls, wouldn't give me a date, and I knew the timescales were important: chemo, op, finish chemo. I don't really understand why you are not 'urgent' though. I would have thought you were? Keep on at them.

No storm here , though it was flipping windy and I ended up running round bedrooms and batrhroom shutting windows at 5am because things were falling off windowsills. Of course the DDs remained asleep throughout.

PenApple clearly I've had more wine than you. Have you posted previously? Apologies if I've missed your previous posts. What cancer are you being tested for?

Ah now see the wine caused a name change fail 😂, I posted previously under LAAA. It’s lumps in the breasts I’ve found.

When GP gave me exam she didn’t say a word about if she thought it was nothing, which when I had a previous fibroadenoma they said immediately that’s what it felt like but referral just incase. So I’ve not idea at all what GP thought, and I was too scared to ask.

I’m in Scotland and we’ve not had it too hot but stormy up here too just now. Love a good storm though!

Hi Lacies - I had lost my account on my phone, have just sorted it out. Hope everyone is doing ok and enjoying the respite in the heat!
And OMG on my IPad I can scroll back!!!! I honestly thought I was going to have to start making notes on everyone to refer to (really bad memory) and that would just be really wierd!!!!!!!

Just a quickie Lacies to say that I got travel insurance cover with Insurancewith - annual Europe policy for less than £200! They are thorough with their questions but much better than £2.5k I was quoted by other company!!

Addle is that cover when they know you have cancer? I’m supposed to be going to Europe at the end of August. Obviously it’ll depend on when surgery is etc but I did think it would be important to have insurance. Partner works in insurance so hopefully we can get a discount through his firm.

I’ve had an awful weekend. Came away for a family party, felt ok driving 2.5hrs to get here (except from having to drag my brain back from scenario playing several times) but after I ate at lunchtime I started to get increasingly uncomfortable. Because me and my dd are staying in a B&B I tried to eat something again before we left the party but could only manage a few mouthfuls before giving up and then I started to panic about the pain. Awful awful awful.

Came back to the B&B and threw up 😳 uncomfortable all night and wondering if I should find the nearest hospital but managed to drop off eventually.

I’ve woken up this morning and things have passed through to some degree so I’m calmer as I’m obviously not completely blocked but omg. Grim.

I’m going to head home fairly early missing out on a massive brunch with family but I think I need to ring 111 or at least be within spitting distance of the hospital that has my notes.

I hope everyone is having a more comfortable weekend.

@tsonlyme hope your feeling better. We went out with some good friends last night and had too good a time! They know my news but we didn't talk about it and it was lovely, lots of prosecco and homemade curry!

Prosecco & homemade curry sound a great way to spend your evening quinoa

That sounds an awful night tsonlyme, have you managed to eat anything today at all? Are you doing the 2.5hr drive back on your own? I hope you feel comfortable once back at home and close to your hospital.

Fatty how are you doing? I have been thinking of you this week & hope you are alright.

My friend came for the day/night yesterday. She took the girls out for the afternoon and I went to bed. Bliss! I managed to jog my PICC line though when napping so some blood oozed out, I rang the on call oncologist yesterday and they have advised me to go to hospital today to get the dressing changed incase of infection, so will be off there shortly. I am still not getting along with this PICC line. My upper arm really aches and I can feel it if I lift my arm too high and my lower arm aches a bit too. It is a really odd feeling & I hope it settles soon. I guess the body tries to reject a foreign body hanging out in its veins!

I think the inside of my lips are thinning too, they feel a bit like I have knocked them and are really tender & sore on the inside. My nausea has calmed down yest/today massively though, so am really pleased about that.

I hope you weren't rained off from your camping trip Leslie and had fun.

purple 4/6 weeks sounds a long wait for the stoma. Esp if they are pausing chemo until it is done. Hopefully they may manage to slot you in for a cancellation if you call & chase it up. Will they do anything to see how effective the last chemo was in the meantime? Not sure if it is something they do or not, but if you know it has massively shrunk already it would put your mind at rest maybe?

Good luck to everyone for Tues. I am getting my bloods checked on Mon to see if I am fit for chemo again on Thurs. I also have a consultant appt 2mo. I think I get my MRI results and they may organise for my heart ultrasound too as the consultant wanted it done before my 2nd chemo.

I am quite enjoying having the house to myself for a few days more before Mum & Dad come back to look after the girls again.

tsonlyme how are you feeling? If you have any more tummy pain I would definitely get someone to see you. I had pain when I ate food - it was an area which was narrower in the bowel and I had to have surgery to remove the almost-blockage. Not necessarily what you’ve got but similar symptoms which didn’t get better so I would always be cautious... make sure you have plenty of fluids today and rest

Yes the travel insurance was specifically for people with health problems so they ask what surgery/chemo/radio you’ve had etc before they decide and then you are covered for that condition and just have to inform them if there are changes in that condition. Give them a call and see what they say, or do the online quotation. I got a quote for a single trip (about £50) and then phoned to discuss annual too and was surprised! They are nice and helpful too unlike the other company whose name i forget (like everything else!)...

Glad to hear the toe is ok Leslie and hope everyone else doing ok

Noodles I'm going to ring them Tuesday to chase them up, only problem is I have no idea who to call I have that many phone numbers. My consultants away for the week so I can't ring him. No scan before the next chemo unfortunately, I think I have one after every 3 chemos. I don't know if I'm getting more symptomatic or I'm just imagining things and thinking the worst so I'm keeping everything crossed I'll be seen really quickly

My mouth feels really dry and weird too and my gums have been bleeding, but that's quite common after chemo. Your chemo nurse can get you some special mouthwash to use if you mention it to her

Hope you're feeling as well as possible TQ, glad you have your DDs at home with you. I love having a houseful of people

Pen I'm not sure if it's the same in Scotland but in England if they suspect cancer they have to see you within 2 weeks, give them a ring tomorrow. Is there anybody at all you can take to your appointment with you?

How are you doing Mrsp? I love my iPad for that very reason

Tsonly hope you're feeling a bit better now

Hi everyone and good luck for positive and progressive appointments.

Yesterday dh took me out for the afternoon without the kids. Just what we needed. I had my nails done while he went to boys shops then he took me to a jewellers and bought me a diamond eternity ring . It was lovely to have time together as we've had very little lately and we've had some recent difficult times.

Crashing down to Earth this morning though as I've been bleeding all day and have horrible stomach cramps while feeling sick, faint, out of it.

Oh Year that sounds miserable, sorry I don’t know your backstory.

I managed the drive home ok (with my 18yr old dd) but I’m very tired. I bought a protein shake drink on the way back and managed to eat a chocolate croissant so yes I’ve eaten but not a lot.

Thank you for advice addle if I end up feeling like I did yesterday I’ll get myself to A&E I think. Hopefully not, fingers crossed.

Yeah was told 2 weeks here too, but the 2 weeks would have been Thursday past, which we were away for so hoping I hear on Monday, if not I’ll phone - but not sure who to phone? I phoned GP last week just to check it had gone through as urgent, and receptionist just said hospital had written on the 13th saying they’d accepted my urgent referral. So I’m on their books so to speak.

The only person I could get to come with me would be my Mum, but I haven’t told her about the lumps as she is such a worrier and has enough stress going on. DH won’t be able to get time off work as he was off last week, and SIL will be watching dc for me (hopefully!).

Can they tell if it’s likely cancerous from scans? Would they say he chances are high before biospsy is back? Would they do the biopsy on the same day?

Sorry lots of questions!