Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@Serendipity09 no, nothing is easy and having to organise this whilst waiting for treatment is an additional stress. Just to warn you though, on all the occasions I've rung the DWP, I've been on hold for at least 45 minutes before someone will pick up!

Thank you. I might just fill out the form and then wait for them to contact me. Might as well get the ball rolling. I think it will definitely average out that I'm below the cut off income point over the course of a month. I need to drop hours anyway, I'm exhausted with everything that has been going on. I've only had 5 days off so far, including the day of surgery.
It's been hurting my head trying to work out if I can claim anything this afternoon!

@MissSmiley, thank you for your thoughtful reply.
I am going to keep on thinking and maybe speak to my cancer nurse on Wed. (FT is a great idea, but sadly the hospital he is in has THE worst internet access!)
I hope you are feeling not too bad at the moment.

I have just been reading lots of your posts. You are all amazing!

I was diagnosed with grade 3 triple negative IDC a few weeks ago. No palpable lump, I was just itchy! Even the surgeon couldn't feel it. I had wire guided wide local excision and sentinel node biopsy. Have just had results back, which showed '7 mm NST with some low grade DCIS, clear margins, negative lymph nodes and no vascular invasion'. Genetic testing is negative.

I'm trying to decipher this....so the whole tumour was 7 mm, and there was IDC grade 3 within it, but also low grade DCIS, so the IDC was less than 7 mm?

I am having chemo and radio due to it being grade 3 and triple negative.

Any tips on what I need to purchase to make life easier? My friend who went through the same last year has bought me Aveeno, false eyelashes, vaseline, fluffy socks, mouthwash, soft toothbrush and Sensodyne plus other bits. She has been totally amazing!

I’m claiming contribution based ESA as I’m self employed but I’m not working at all (and it’s only for 12 months). The helpline 08001690310 were very helpful -try ringing at 08.05am! Definitely fill in and return any and all forms asap just in case and don’t necessarily take the first “no” for an answer.
When I’m Queen, there will be one number to call to say “I’ve got this diagnosis, this is my NI number.” and it will all just happen. It is appalling that we are put through repeated hoops and tricks to get the support to which we’re entitled.

Macmillan are v good at sorting out benefits claims. You can ring them or your CNS will probably be able to put you in touch. Mine is actually a Macmillan nurse and there's another who is Macmillan-trained.

@Podgedodge that's bad about the internet, my hospital had fab free wifi but I have to say when I was in HDU I was too poorly for visitors let along FaceTime, I hope your dad is better than I was.

I can recommend Macmillan for anything financial, their advice is second to none.

I'm ten days without a bowel movement now, combination of surgery and painkillers so I took out of date senna last night, no action this morning. Took more this afternoon and I feel thoroughly dreadful now and still haven't been. I've been eating fairly normally until today, albeit small quantities but where is it all hiding considering I've lost weight since I came home last week. Absolutely dreading the moment when the floodgates open but know I can't avoid the inevitable 😱

@MissSmiley Supposedly you use up a lot of energy/calories in healing but you also wonder how many!

After my first hospital stay for mets I came home with THE worst constipation and the only thing that got stuff moving was some prune juice - not the constipation pills, not dates, not warm water, etc. But once it got moving it was going pretty quick, at least the bit around the firm blockage (sorry for so much info!).

Did they give you a stool softener at the hospital? Definitely get some - you don't want to be straining. I got some after my second hospital stay (different hospital) due to the stomach skin rearrangement post reconstruction. I was so worried about a repeat of the above, but the stool softeners certainly saved the day.

My GP suggested fybogel is that a softener or do I need lactulous?
I'm waiting for the surgical nurse specialist to call me back and suggest something, senna is just making me feel more ill

I have a friend visiting tomorrow morning, it'll be just my luck that the flood gates will open ten minutes before she gets here

@MissSmiley I have used laxido for constipation issues, it seems to work quite gently but I do make it up as a shot and then have a pint of water afterwards.
@Serendipity09 Welcome to the thread no one wants to join. I am claiming contribution based ESA as well as receiving an income protection benefit via my work. I get 80% of my wages, reduced for standard rate ESA. I do second a call to Macmillan financial helpline.

We’ve just had a wonderful weekend in Seville, the sun sort of shone, the architecture was amazing and we ate some fantastic food. I’m glad we went because last week I was dreading it a bit. I enjoy being away but the travelling is always a chore. I keep hoping that teleporting will become a thing in my lifetime.
I have my radiotherapy planning appointment in the morning and then into the office for a catch up before I return.

Glycerine suppositories are good when you feel bunged up. They just dissolve and lubricate the exit area without irritating the whole system. If you don’t hear from your CNS, I’d be ringing my consultant’s secretary and asking to speak to him/her. Or ring the ward.

I’m surprised they sent you home without advice on this. I’ve had a carrier bag of stool softener with both abdominal surgeries and the visiting surgical nurses always had stethoscopes at the ready. I’d be wary of taking laxatives in case they upset the top half of your digestive system which is still healing.

Don’t want to diss your GP, but the Whipple isn’t your bog-standard surgery. They may never have met it before. You need specialist advice.

@MissSmiley senna stimulates your bowel to push it all along but if you haven't been for so long it may be rather too firm for this. You would have been empty all the way through so even though you've been eating, your insides will take some time to 'fill up'. I had the worst constipation of my life after my first chemo and took Laxido, it softens the stool by drawing in water. It took 3 days of Laxido to have any effect for me but oh my word, that sorted it out! I find this so much more effective than Lactulose for the serious blockages.

@MrsPnut I remember laughing about your Laxido shots! I'm pleased your Seville trip was so nice, it sounds amazing.

@Thymeout I cross-posted. That's a good point about @MissSmiley's surgery, I hadn't factored that in.

@Serendipity09 just a thought, did you know you're entitled to free prescriptions with a cancer diagnosis? I found out by accident, it's just a simple form from the GP and it certainly saves a huge amount of money. Chemo can bring on loads of extra prescriptions my hospital expected me to source from my GP.

Hi everyone, I wonder if anyone has any advice for me? Following bc diagnosis and treatment in 2016 I finally decided to go ahead with breast reconstruction and had tissue expanders put in last Monday. I’m feeling terrible and so worried that I’ve made an awful mistake and I should have just been grateful to have my health and not jeopardise it with an unnecessary op just for vanity. I can’t seem to shake off the black feeling that something dreadful is going to happen like infection, skin necrosis, sepsis….. All the ops I had to have for the cancer (two mastectomies, ovary removal, port etc) didn’t leave me feeling like this. I just want to curl up in bed (which I can’t, because the tissue expanders and so flipping uncomfortable) and never come out. What’s wrong with me???

@Blowupboobies Nothing is wrong with you, the fear is entirely reasonable. Sometimes when things are going well you are just waiting for the worst.
I emailed my HR director the day before my first surgery to make sure they knew to pay my death in service benefit to DH, my HR Director replied that he was planning to dance the funky chicken at my 70th birthday party.

It made me laugh and made me think that it might all be ok.

@MrsPnut
That made me laugh too. Your HR director sounds awesome. Thank you for replying.

@Blowupboobies great user name by the way!
Do you feel worried or terrible as in poorly? I can't imagine it's very comfortable, do you have to go back regularly so they can expand the skin?

@MissSmiley
Mainly emotionally if I’m being honest. I’m usually good with pain but every little twinge is sending me over the edge today. So cross with myself for not only choosing this but also being pathetic about it. Yes, I have an appointment in a few weeks for the first blow up. Katie Price here I come! At the moment the little balloons are empty but they’re pretty thick and rigid and already really stressing the skin. The incisions are sore and whole area is a bit pink and feels like sunburn. Worried about infection kicking in as I’ve just taken my last post op antibiotic. Grrr.

But I’m sorry for moaning. I haven’t been able to see exactly what you’re all going through on this thread as I’ve only just joined. If I can be if any help (if I can remember anything of use from my treatment!) I’ll try!

Morning everyone, hope you’re all going ok?
I’m suffering from the EC chemo last Thursday, was back in hospital yesterday for bloods as I feel so rotten again. It’s so gruelling it’s unbelievable. So nauseous and my skin and bones ache 😞 feeling very low and tearful, I hate being poorly and I feel so miserable with it all…sorry to moan. Just so much to cope with and it’s so hard at times

Sending love to you all as usual xx

@TwoBigNoisyBoys it's horrible isn't it? I hated my EC chemo, for some reason the fact that the chemo nurse had to syringe in that horrible bright red chemical that I knew was going to make me feel awful made it all quite traumatic to me. I think that will be my lasting memory of chemo.

I got very dehydrated on my first EC and it made me feel very unwell. I ended up back on the chemo unit after 6 days with a saline drip that perked me right up (comparatively). Could you be similar? For the later two EC chemos they gave me a saline drip before the chemo drugs to get me more hydrated.

@fantasea yes, I know about the prescriptions, but thank you. When I was first told, they handed me a big pack and on the front on a big sticker was 'CANCER PATIENTS GET FREE PRESCRIPTIONS' . Nothing like spelling it all out to you when you've just been told!

@twonoisyboys I am sorry you not feeling well. I am yet to start chemo but my friend who had EC last year also told me 'stay hydrated' and she bought me a HUGE pink water bottle! I am so not looking forward to starting it.

Thank you @SewingBees and @Serendipity09 I’m drinking loads, that’s one thing I do remember to do, especially at the moment when I can’t really face food. Just so queasy, even with the anti sickness meds. It’s grim but I have to remember it passes…I’m three rounds down, last one to go in 16 days so I’m just clinging on to that! 😩

@TwoBigNoisyBoys you poor thing, that sounds really grim Xx. Have they tried any different anti-sickness meds for you? I remember a poster having a district nurse come round to administer an injection which really helped her.

@Serendipity09 you don't really need it that much 'in your face' when you've just got your diagnosis do you . I only found out about the free prescriptions by accident and had been using my pre-payment certificate for a couple of months before applying. Several posters, like me, haven't been told which I think is really poor. I remember in one calendar month, when on chemo, I had 12 items!

Re allowances. Macmillan applied for attendance allowance for me and a blue badge. I didnt have to do anything !