Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

I'm so sorry that you're having such trouble with the online shopping - it is rubbish. I was actually feeling annoyed about this two weeks or so ago, when a work colleague was telling me about a friend with MS who is reliant on online deliveries and couldn't get a slot for over a month! It isn't fair that people use them up when there is no need for them to.

I am lucky because DH has been able to pick all the food up on the way home from work this week. I think he had to do a drop in each evening because many things weren't on the shelves! But we haven't gone short. You're right, it is nice to be able to pick out what you feel like (even if for me this week, it's been by proxy!).

I had my appointment today, bone marrow aspiration, lymph node biopsy, bloods done, etc. etc. Too right it was hard to get in, I was expecting to be asked for a visa!

Provisional diagnosis is AML, but it isn't definite of course until the bone marrow test comes back.

I'm trying not to jump ahead too much... better to wait and find out facts. I made the mistake of reading all about the treatment and it sounds intense.

For a little bit of background: I'm in London, work in mental health (although mainly research rather than front line, so not a key worker...), husband is a teacher, 3 kids (7, 6 and 4).

And, since I'm feeling a bit calmer today (and in a "prepare for the worst and you can only be pleasantly surprised" mood), is anyone able to share with me how chemo really is? The leaflet I have makes it sound awful and I really regretted reading it last night...! But I do want to plan stuff, and want to get some idea of what is and isn't manageable.

We decided not to speak to the kids until knowing anything for definite, so still playing the holding line. I'm not sure how much the younger two will be able to understand of it anyway, but supersleuth DD7 will be on the case if she thinks she's not getting the truth (and she already is suspicious - we had 100 questions this morning!).

Given your likely age, and guessing you had normal health before this, you are likely to be offered the ‘intensive’ treatment with aim of curing. This involves a few rounds of inpatient chemo, and then some consolidation treatments. I don’t know if management would change in the time of plague

(I heard something on the news about the Marsden getting some sort of coordination role for all London cancer patients, and was wondering if they might be seeking to get some cleaner places to put the extremely vulnerable - which you will be whilst having chemo targeted at your immune system)

As DC won’t be at school for a while anyhow, you might want to think about sending them to stay with family. I think this would definitely count as exceptional circumstances and essential need

Macmillan have good resources about talking to children. Mine were older, and I found the single thing that helped most was waiting until I had definite treatment plan (took about a week to confirm from bone marrow, so not too long a delay), because then you have a second part to the message ‘and this is what’s going to be done about it’ and that’s way less worrying than dealing with uncertainty

The consultant who I saw said something that they are looking to "centralise" cancer treatment centres, but that more would have been decided in about a week's time. Royal Marsden wasn't mentioned, but it is not too far from us (probably 20 min by public transport, a bit longer driving).

I'm definitely in agreement about not telling anything until something definite is known and planned. So we're still using the holding line for now. I feel like it would be a lot easier to keep some sort of normality if it wasn't this Covid-19 situation and the kids had more distractions and normal routine.

And yes, I had normal health before this! And I am 33. The intensive treatment + consolidation was what was briefly mentioned and it sounds full-on! If this does end up being what it is, and if the treatment does go ahead (still a lot of ifs) I really feel like it would be better for DC to go to family for a bit. DH's parents are late 50s and generally in good health (his dad works on the railway, so is still at work, but mother is working from home). So I feel like it wouldn't be too selfish and stupid, but I know many people would say, what are you thinking?

You say:

‘Stop being an insensitive tosser. These are exceptional and medically justified arrangements’

I might not use that exact phrasing, but DH probably would!

I'm getting ahead of myself, but I'm keen to have some kind of plan. Husband is going to chat to his mum tonight. I haven't spoken to my mother about the week's happenings yet (in France, so there nothing she can do from there except worry, perhaps unnecessarily!). Although she did video call me this morning and said "you look terrible, why are you still in bed, have you been drinking last night?" 😂 This from the woman whose first act when lockdown was declared was to rush to the shops to stockpiles bottles of ...

Hold up what's this about private hospitals for London patients? I'm at Guys and haven't been told anything like that. I'm still expected to go to Guys. They wouldn't close the cancer centre would they?

I'm going to give my cousin a little list ti get me stuff now. I wont starve, but I'd like a bit Of chicken or a scrambled egg! My new steam mop arrived today and I did Gen Flores they look so clean and lovely. Also sorted out broadband so I've stuff to do now. How's everyone else doing?

@Jourdain11 I've just had my second round of chemo. I've actually been ok. Face fevers cold hands an the odd nausea. Today however my face is blotchy and spotty like I've a bad reaction. And my nose hairs are going. I'm also not sleeping well. Maybe 4-5 hours? I'm expecting the hair on my head to start falling out any day now x

Sorry autocorrect but I meant to say I did the floors!

Coming out of lurking on this thread (breast cancer 2018) to say that our local hospital has moved all cancer care to the local Three Shires private hospital. It’s a good move I think, but not sure if it’s a national initiative.

Hello everyone. I got told Thursday I have cervical cancer.

I'm awaiting an MRI and CT scan now to determine what stage and check if it's spread or not.

The waiting is the worst part. At the minute I feel numb about it. Like it's happening to someone else.

Hello @Chesneyhawkes1, and welcome.
Many of us have found that the very worst time is where you are right now - waiting for scans, results and a treatment plan.
I was diagnosed with cervical and endometrial cancer in May last year. I am now seven months post treatment and although I don't have the all clear yet, I am doing fine.
I still often feel like it happened to someone else.
Try to keep busy, don't google, take one day at a time and you will soon know what's happening x

@redspook thanks for the reply. I do hope you will have the all clear soon.

Normally I'm such a busy person. Work, running, walking my dogs, shopping etc but this corona virus has put paid to most of that. I'm just sitting around at home, dwelling.

Tomorrow I'm going to go out for a run - I wasn't allowed after my lletz procedure, but I think it will do me good.

My husband has cried, my friend cried, my poor Mum cried lots on the phone - but I can't summon up any emotion over it

Sorry haven’t read for a while but shall go back and catch up.

Got a call from hospital today and she said there is absolutely no surgery going on at my hospital but the colorectal surgeons are staying clean and having nothing to do with covid patients and will be going to different hospitals that aren’t so effected.
I will most likely be done at guys hospital but failing that she mentioned two other hospitals one I can’t remember and the marsden that it could be done at. Would prefer the marsden but I will take what I’m given and like it!
Still won’t be before 24april as they like to wait 6 weeks after last chemo for body to recover but at least they are planning.
Has made me feel a lot better about it.

I'm 43 years old. 2 weeks ago I was diagnosed with Stage 4 mantle cell lymphoma. I've been on steroids ever since in preparation for treatment (2 x types of chemo and stem cell transplant) - and my moods are big!

It's been a whirlwind couple of weeks and emotions. I start my first cycle of chemo next Tuesday. The hospital said in normal times I would go in early for an information session about how it all works, get my PICC line put in readiness for Day 1. Because of coronavirus/short-staff, they want to do everything on Day 1 of chemo.

So now I'm reeling all over again. I guess I'm here for a handhold and maybe someone can just talk me through loosely what to expect from the day (and or cycle).

Cycle 1 is R-CHOP, followed by cytarabine alternately (6 cycles in total).

I understand a cycle is 21 days, but only get chemo for 5 days of that - but then only one day at the hospital. I'm not sure I really understand how it works.

Hi otter sorry to see you here but welcome to the best club no one ever wants to join.

I am a fellow denizen of haematology, but as my blood cancer is leukaemia I don’t really know so much about lymphoma.

Do you have a Macmillan nurse (or some other staff member) who you can email enquiries to? Knowing what to expect on the day strikes me as really quite important. As well as how many days each round are likely to require admission (just so you know what to pack!)

How is everyone doing? I had my lumpectomy on Friday. Still a bit sore and seem to have retained some fluid around the incision. I'm now really struggling mentally. Wishing I had opted for chemo first so the oncologist could see the tumour's response plus it would be killing off any rogue cells. I keep waking in the night thinking everything is ok but then try to turnover on sore boob side and it all comes back to me. I just keep saying I don't want to die. I'm shutting myself off from DD. I don't want to be with her. Just want to see her grow up and beyond but feel its hopeless. Sorry, very much miserable here

@citybumpkin sorry you are struggling so much with this. Try not to cut yourself off from DD too much. I find my DS the best medcine and distraction at the moment.
I know you won’t SEE the response having chemo after surgery but it will still kill off rogue cells.

@InOtterNews welcome and sorry you find yourself here. It is such a supportive place.

@Chesneyhawkes1 welcome and sorry you also find yourself here. As you are probably finding out the waiting is the worst part, not having any plan or knowing what is going to happen. Do you have any dates for your scans?
I still find myself numb like it isn’t happening to me most of the time, and then when I really can’t avoid the fact that it is happening to me I generally cry and cry.

I had my pre op appointment yesterday. They are still aiming to operate at the end of April. I was so anxious being in the hospital and being exposed to CV.
I hope everyone is doing ok in this scary time.

@Squiffy01 Its hard not to cut myself off. Its heartbreaking to look at her and think I might not be around much longer. I'm triple negative which means some chemo drugs might not work. The usual treatment is chemo first to see response. Obviously having surgery first means the docs have no idea which chemo works best.

@Squiffy01 I had my MRI yesterday at Bedford hospital. And my PET scan is at Addenbrooks tomorrow. So things are moving really quickly. Which is reassuring.

I wish I could have a good cry. Something will set me off. I'll watch Marley & me and that will get it all out.

Hi everyone, sorry for being rubbish at checking in. Hello to everyone who has had to join this thread. It's definitely a source of support and comfort.

So finally I've had some good news. After 4 out of 7 cycles of chemotherapy my triple negative breast cancer has had a total response and they can't detect it on my MRI scan. Due to coronavirus, they're stopping my chemo early and proceeding straight to surgery, followed by radiotherapy. I'm seeing my surgeon next week. Fingers crossed my mastectomy can go ahead sooner rather than later.

Fantastic news @barberousbarbara ! Any idea when surgery will be? I had my lumpectomy results back today. 1.8cm tumour removed with clear margins. No LVI and no lymph node involvement. I was fearing the worst but now, after a few days of severe depression, feel slightly better. Next its rads and then chemo. Wish none of us were treading this path especially in these strange times.

@barberousbarbara yay for a total response. Fingers crossed your surgery comes around very fast.

@citybumpkin Thank you. Not sure yet when my surgery will be. Apparently the local health board have stopped all elective orthopedics so the breast team have taken over their theatres. I have to have a blood transfusion tomorrow. The chemo has left me very anaemic so they'll wait on surgery for my bloods to level out.

Fantastic news on the clear margins. TNBC is scary but responds well to treatment.

@Squiffy01 Thank you. I'm nine weeks ahead of where I expected to be so I need to start mentally preparing. I'm not complaining though.

I hope everything is on track for you. It is nerve wracking going to hospital. My trips over the last week haven't been too bad. I'm in the shielded group and they've been taking extra precautions around me.

@barberousbarbara Hope the bloods are back on track soon!

My results were good but its not the end of treatment. Chemo first would have shown my response so going forward I will have no real idea of response. Not looking forward to the rest of treatment at all.

@citybumpkin do you know what chemo they're suggesting? TNBC does get hit hard by chemo. I've had carboplatin and Paclitaxel, and was due to have FEC (now cancelled). My cancer was throughout the breast plus a 5cm tumour so I was surprised it was hit so hard and quickly. I'm still going to have to have a mastectomy, due to my starting point, and I was told straight away I couldn't have a reconstruction until all active treatment has finished. I've still a long way to go but I'm getting there. You are too