Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Thanks so much. The oncologist is on holiday this week but I'll see if I can ask for a prescription or other help from someone else when I go to radiotherapy tomorrow. The constipation and the diarrhoea are just so painful, and exhausting.

The oncologist still hasn't prescribed anything for the vaginal dryness and the pharmacist said I would need a prescription for anything that will actually be effective. At the moment I wipe it with a baby wipe to temporarily alleviate the dry feeling.

@Runningwithoutstopping I understand what you mean about outrunning cancer. I am trying to eat more healthily with that in mind too. Thank you for your kind wishes and to everyone else too xxx

@Happy36 yes, @Running is right, you ideally get ahead of the chemo with the laxatives but if you have missed the boat, then you can start now. Are you having diarrhoea and constipation on the same day? That might be that watery faecal matter is seeping around the blockage. I have had appalling constipation with chemo and also since my surgery, you have my full sympathy. I find Laxido sachets really effective, you mix them with water and if you can, slug them down in one go or do the 'shot' method suggested by @MrsPnut, make them up in a small amount of water and have a water chaser to hand. For less severe blockages and for maintenance, Lactulose syrup is good, this tastes sweet and you take it like medicine. Both this products are available over the counter but I get them on prescription as they're free to a cancer patient. Hope you get some relief soon, it truly is awful.

@Happy36 Just wanted to add in case you didn't realise: make sure any wipes you're using don't have alcohol in them as that will ultimately cause more drying. If the wipes are for babies then hopefully they shouldn't have alcohol in them anyway.

MrsPnut mentioned psyllium husks for constipation - I used them for constipation in pregnancy. I bought them loose & added them copiously to porridge & smoothies.

@user6659004 It is perfectly natural to be anxious in this situation. Get outside in nature if possible and walk/do other exercise to burn off some nervous energy. Try to fill downtime with doing stuff so there's less time to ruminate. I often listen to podcasts, especially comedic ones, to occupy my mind if I'm on my own. Some people use apps: Headspace and Calm are two I've heard of.

@Happy36 I use cavalon wipes. They have moisturiser and a barrier cream in them and are suitable for radiotherapy. They are huge, I cut them into 8 smaller wipes and use morning and evening.

Thanks KitBot, I'll look for those when I can get out. For now I'm just using the alcohol free baby wipes I had already. Vagina is sore but getting used to it.

Constipation is the main problem at the moment; I'm scared to go to the toilet as it hurts so much. I'm also having daily anti-coagulant injections so when my bum bleeds, it really bleeds. Quite shocking to see the toilet bowl full of blood.

Feeling a bit nauseous today (despite the 2 sets of pills for this) and also a headache, which is really rare for me. A bit sorry for myself, overall.

Gearing up to drink the alcaline water tonight before tomorrow's chemotherapy.

P.S. Hope everyone is well. Have a good afternoon.

Off to see my consultant on Wednesday afternoon to find out my treatment plan.

Don't know what to feel. Hoping it's just a lumpectomy but will do whatever they tell me to do.

Finish on Friday for the summer hols and looks like I'm going to spend most of it in hospital and recovering.

@PaddingtonStareBare I think our timelines for the 2 week referral are pretty similar, will keep my fingers crossed for you. Hopefully you are slightly calmer than me

I am not sure how to respond on the thread tbh, it feels like you all know each other so well that it would almost be rude if I replied to posters individually, kind of like butting in. That's not to say I don't appreciate the kind welcome when everyone has their own battles

I have collected my instructions and moviprep for the weekend, and the nurse from the unit is ringing me on Wednesday to go through it all. My DDs are both away for the next three weeks now, so I am on my own with my worries Although I may be glad I have two toilets to myself come the weekend

@NoOneWillReply I had the bowel prep prior to my OC surgery. It was not as bad as I had imagined it to be, my worst problem with it was being starving, I could only eat a 'low residue' breakfast and then nothing at all. I would put some sudocrem on your bottom before you start as you do get very sore with all the wiping. You're not butting in at all, please join in, we all share and support each other here xxx

@BG2015 hoping for just (just) a lumpectomy for you. Once you have the treatment plan in place, you will feel a lot better. It is all the waiting and worrying which is the worst part.

@NoOneWillReply I found when I started posting I couldn't keep track of everybody and their treatment so I just chatted to a couple of people on the thread. You quickly pick up who has what going on. @BloodyBridget has been amazing, I think she keeps a spreadsheet to keep up to date with us all! @HumphreysCorner and @MrsPnut are also very good at keeping track.
I had a hilariously bad weekend on my boat. The weather was appalling and it rained almost the whole time. DH was horribly sick so we had to abort our voyage and return early, and I fell overboard!! This wasn't as bad as it sounds, I just swam round to the back of the boat and climbed up the ladder, but it gave DH a bad fright. I think he may never come with me again
Strangely it made me very happy to deal with real world problems and I was extremely cheerful, on the grounds that nothing could be as bad as cancer, chemotherapy and a broken leg. I think the rest of my life will seem like a walk in the park now!
I am packing for a mini bike tour which is DH's thing, and annoyingly the weather is going to be lovely for it. I shall grumble along wishing I was sailing instead.
Fingers crossed for everybody waiting for results and treatment plans, and hugs to those going through hard times.
Top

Hi all

@Lunificent - I am edging towards a DIEP reconstruction. I know it’s a long op and a long recovery but I like the fact that they will change with me. My surgeon said he would put me in touch with some of his previous patients. I am seeing the breast surgeon and plastic surgeon this week so hope to be more informed.

@PaddingtonStareBare - welcome and hello.

@Bloodybridget - I wish my neutrophils to do well on a daily basis so have included yours with them. Can they now give you Filigrastim?

@FizzyOrange - sorry to hear your latest news. Wishing you well for your further appointments.

Big wave to everyone else particularly those waiting for results and appointments this week x

Also meant to add I’ve used Sylk (bought in boots) on the recommendation of my BCN. My doctor has now prescribed it. It has helped.

So I phoned my hospital as the referral letter said after it ringing for nearly 10 mins someone did answer and I was told they would aim to see me within a fortnight but not to call again as 'they are very busy and we promise we will get to you eventually.'
I keep thinking the worst and I just hate waiting. I've had moments of feeling anxious before but I'm getting worse by the day, would I be allowed to call one of the Macmillan helplines even though I don't have a diagnosis?

@jeanlannes thanks for your reply re: DIEP. I’m about to see nurse about possible operations. I’m trying to decide between DIEP and implant. I think I don’t want to use my back muscle. I really don’t know what to do.
I know someone with an implant in one breast and LD- back flap in the other. She’s thinking of having implants removed from both.

@PaddingtonStareBare oh dear, you sound upset. It really is unacceptable to be told not to ring as they are very busy. And? That's what they are there for - to deal with enquiries such as yours, it makes me furious. I have had a basinful of mostly admin and sometimes nursing staff being rude to me and also have been 'told off'. Yes, you can call the Macmillan helpline, I phoned prior to my diagnosis. Hope you can get to speak to someone soon.

Morning, I am having fun and games with my port again and the disorganisation of the healthcare at home nursing team (actually my consultant's link nurse in particular).

The nurse this morning has gone to the chemo ward at the hospital to collect some more 32mm gripper needles because despite two nurses ordering them three weeks ago there was 1 at the base station this morning and the one the nurse tried and failed to access my port for bloods yesterday.

If chemo doesn't happen today then I am going back to the previous place I had chemo because I could cry with frustration with the situation.

I'll come back later and post something more coherent but right now I am having a toddler style tantrum.

Thank you @FizzyOrange it's helpful to have a place to vent and people understand.

@MrsPnut I hope you've been sorted out.

Today hasn't been a productive work day 🙄. I haven't called again but I did hear back from hospital, my ultrasound says suspect XYZ and it was a consultant who performed it - went private - but my GP referral to one clinic as requested by private consultant has now been downgraded by hospital team and referred to another clinic and the new clinic I've been referred to is proper scary territory 😬, not that there is any 'good cancer'.
But at least I have an appointment now and I'll be asking for a biopsy, although I'll be surprised if the doctor doesn't request one.

@MrsPnut ahhh if I could come round to yours and sort this out for you I would. Massive hugs, some  and I really, really hope they get this sorted for you.

Top you sound like you are enjoying retirement in a most toppish manner

Acinonyx2 I hope gluegate is wrapped up soon. I hear you re the music choices. Leonard Cohen is as cheerful as I get.

Bridget I am cheer leading for your bone marrow! Come on granulocytes do your thing!

Good luck to everyone else for treatment and diagnosis. It's very odd being on the other side. I'm back at work nearly full time now. My post treatment scan isn't until August so I feel like I have Schrödinger's cancer. Who knows?

MT (who was BadEyeBri)

Just wondering, is it possible I’ll go through the whole chemo process and not see my oncologist?
I’m on chemo cycle 5 tomorrow (cycle 2 of Docetaxel and Phesgo) and not seem the oncologist yet. I’ve seen a registrar and today, an honorary fellow!
Would it matter if I don’t? I do sometimes have some questions for them, but I presume the registrar can answer them all.

@Paddingtonstarebear I know how you feel. Had similar when I rang my hospital helpline about my ears drumming and bright red face. The nurse made ,e feel,such a time waster, it’s definitely put me off ringing. I would ring Macmillan and others if you want e.g. Breast Cancer Now. Even if they don’t know your case, they will be familiar with similar and will be able to help you through how you’re feeling.

@Runningwithoutstopping thanks for the thought

@Happy36 the bleeding bot situation sounds mightily unpleasant.

Alternating constipation and diarrhoea is very tricky to manage successfully. I took orange laxido and prune juice for constipation (senna sent me disastrously too far the other way ) - I was warned too late that the lime flavour laxido is a lot better than the orange.

@BG2015 interested to hear the plan. Always better to have a plan.

@NoOneWillReply jump onto the thread as if it's a moving train. We've all joined different times and posters tend to come and go but overlap with some in particular.

@TopOfTheCliff you are not selling the sailing experience to me! Me and your dh will meet you afterwards at the pub.

@MrsPnut I am outraged on your behalf. You know port and venous issues are one of my top bug bears. How to make an unpleasant process unnecessarily more unpleasant and stressful.

@KitBot first radiotherapy today. I can tell they don't really know how this is going to go and my skin is not as tip top as they'd like. Ah well, my misery-music and poetry will get me through Anyone remember those Hamlet cigar adverts?

@Lunificent oh the lesser spotted oncologist? I didn't actually see mine until after I'd finished chemo - I didn't know who I was talking to a lot of the time. I don't like the constant shifting cast of characters and I do feel it's led to some lack of joined up thinking when things haven't gone so well. Another bug bear of mine. Perhaps our oncologists are twins.

It's bloody difficult fitting work around all these blasted radiotherapy appts They both keep shifting about. And it was 1.5 hours late today - hope that's not going to be a regular thing.

@TopOfTheCliff yes, yes I know - should be your dh and I......

@Acinonyx2 brilliant, must be a relief to get out of the holding pattern. Does your radiotherapy unit have specialist radiotherapy nurses? They are the folks to get on to if you are worried about your skin. They were amazing to me re burnt fooff.

@KitBot yes I saw the nurse and she gave me a potion to test out. I must say, the thought of radiotherapy to my nether regions does make my eyes water