Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@Bloodybridget. Weird how surgeons see things differently from us mere mortals. Surgery date quite soon too

@LucyWarlowsRightHand Really good friends you have there. It will make a big difference.

@BitOfFun Good to hear you have start date for treatment. Positive thoughts for this for you!

My friend dropped a bottle of wine off this evening and I felt it was rude not to have a couple
Of glasses. After all I'm
Not going anywhere for the next week or so. Lol. Let's just say I'll definitely sleep tonight. It's been nice tonight to just not think!

Nite all. 💤

Thanks so much for kind comments. @LucyWarlowsRightHand that was so good of your friend, it's fantastic when someone thinks to do something that practical and helpful, and I hope your other friend the HCP can be useful too.
@BitOfFun enjoy your hairdresser session! Steel Magnolias, ha!
This does feel manageable for me, atm - for one thing, if all goes well, the op will only take up to an hour. Self isolation will be hard for me and DP, we have never done it before. I'm going to try and get more info on exactly what we can and can't do, e.g. maybe we can have a short walk in our nearest green space early morning.

@gillmoregirl I hope you did sleep - imagining you rolling out of bed bleary eyed and clutching your head this morning!
@balkanscot what will you do with the pumpkins?
@InOtterNews thinking of you and I hope you are now in a comfortable bed, in a quiet room with maybe a view? Are you allowed to walk around anywhere?
Looks like another beautiful day coming here in London. Onwards and upwards!

Lovely day in Amsterdam too and I’m on my way to my HCP friend. The day got off to a shocking start with me completely losing my shit with my poor kids. I’ve apologised and also told DD’s teacher as poor DD was naturally still very shaken and upset. Thank goodness I have my friend, who knows all the ins and outs of cancer support and will be able to help me.

Ironically I am truly not particularly stressed about the upcoming cancer treatment. These fucking idiots who can’t telephone each other (or me) on the other hand...

But yes onwards and upwards! Bit of work to do when I get home, which I shall do in my lovely tidy living room.

@Bloodybridget Yip I slept ok but wrecked this am. Not a good trade off lol

I can't see harm in taking a walk outside as long as you've no direct contact with others. I got phone call yesterday to say they want me to go to local hospital to get more bloods taken even though I'm currently in isolation, which you would think would be riskier! Enjoy your walk.

Morning all, I had my meeting with my surgeon yesterday. It's going to be a big ok and they want to do it at the larger general hospital as I will need HDU afterwards. This is mainly because they are anticipating potential problems due to previous bowel surgery. The top of my rectum has some disease on it so I will have temporary stoma. Even though it going to be tough I feel largely positive about being at this stage of treatment and my recent CT shows shrinkage to the tumour😀. No date for surgery yet but hopefully it will be in the next 3 weeks. So I will be joining the shielding club, however I don't feel like I've been out of it since March!
Enjoy the late summer 🌞 all x

Morning everyone

Lots of updates from you all so I'm hoping in the main it is progress (of some sorts) and positive news. @Bloodybridget if your Drs are like mine, they're pretty honest and I've learnt to take it when they are being positive.

I had my first chemo of BEAM last night whilst eating a very average carbonara. The 'B' is for BCNU. It took about an hour and made me really shit-faced and hungover at the same time, plus a 2-hour head-to-toe hot flush. Alas the hangover bit has stayed with me

They also moved to my own room immediately it had finished. It's in the older part of the hospital (the bay I was in, was in a nice shiny new wing). Check out my view

Today is sponsored by the letter E and A (etoposide and Ara-C - the latter I'm very familiar with. I've told them to have the sick bowls ready)

Sending you all hugs

That should say 'op' not 'ok' I hate autocorrect that thinks it knows what you want to say, better than you!.

@InOtterNews that really isn't a view, someone needs to paint a mural! Hope you can get today's meds without feeling too ghastly.

Whoops, sent too soon. @Lizdeflores we could have a bet on who gets a date first! Is the hospital anywhere near you?
@LucyWarlowsRightHand this is such a hard time for you, hope you don't beat yourself up too much about getting angry with your DCs, of course you don't want to but . . You will need support for them as well as yourself. Hope their dad steps up.

@gillmoregirl I did speak to one of the CNS, on balance I think it's best if I don't go out - people round here are very casual re social distancing, not many masks worn outdoors, lots of runners and cyclists huffing and puffing. I'll get exercise cleaning the house! Did some this morning!
Sending very good wishes to all and

Hi yes it's just the main hosp in Bristol.Sweep stake sounds good I'm also hanging out for the minibar!.

@InOtterNews - you should have held out for St Thomas'! I'm at the PRUH, the millstone round King's neck. When I told my surgeon I wasn't worried about surgery because I'd had a very positive experience at St T's, and mentioned the view, he said, 'Fantastic! but I'm afraid we can only offer a window overlooking the car-park here'. Doesn't look as if you've even got that. I don't suppose they let you have posters either.

@Bloodybridget Good that they're still referring to it as a nodule and it's so accessible. With any luck and current covid regs you'll be out in no time. I think the London hospitals are clearing the decks before the anticipated second spike. My colonoscopy was a short-notice phone-call. I wasn't expecting it till November. And it might have something to do with Otter's hokey-cokey experience in getting a bed.

@LucyWarlowsRightHand
Doesn't help you but it's reassuring for me that other countries are as bad as the NHS for providing a joined-up health service. I used to have Onc and Chemo appointments on the same day in the same annexe. Every time, I got weighed and measured twice, because the two depts are on different computer systems. V irritating. They were only a shout apart.

My GP dissuaded me from moving hospitals or from NHS to private for a scan. 'Things get lost', she said, with reason. Hope you hear soon. What a lovely friend!

@Thymeout ooh you're local to me!

I guess I didn't really think it through or think I had much choice. Though I have to say my experience over the years (with family) with King's has been amazing. ELF & Libra ward (where I was on the first night) had a great view. I also can't fault the service I've had at the PRUH in Chartwell - the window onto the car park is how my family & friends visited me.

I do get the shivers when they send me to Queen Mary's

Just popping in to say good morning to @InOtterNews, hope you felt ok some of the time yesterday and had a reasonable night's sleep. What delights does today hold?
And hello to everyone else, of course. By yesterday afternoon I was completely fed up with staying home; this does not bode well for the next couple of weeks, nor for my relationship with DP. And last night we had Facetime supper with her DSis, whom I am v fond of, but who said something completely stupid to me, something like didn't I feel lucky, looking back over the past year! I couldn't imagine what she meant, and I still don't understand really, anyway I said v crossly that actually I'd hoped for at least a year without any other issue developing and I didn't feel lucky. And there was a 'fucking' somewhere in there. So then she felt awful and I was upset and blah blah. We did save the situation but, oh god. She does have form for inappropriate Pollyanna comments.

I think I may be admitted for fluids etc,mas I can hardly walk and I'm getting my words mixed up.

@InOtterNews
Small world!
Glad to hear praise of the Chartwell. I haven't been an in-patient there yet, just for clinics and chemo. Was in a surgical ward. I think the PRUH has improved a lot since it became part of King's. There was a time when people asked the paramedics to take them to Lewisham instead. Massive PFI balls-up caused low staff morale and cutting corners. My only issue has been with Gynae. Colo-rectal have been brilliant.

Are you still feeling sick? Have the staff time to talk to you? What have you got to watch on your i-pad? Or aren't you up to that?

@Bloodybridget I think I know how you're feeling because, although my colonoscopy was clear, I'm afraid that a scan might tell a different story when it comes to 'other organs'. But it's ingrained in me to 'worry about that when I have to'. So I play everything down when it comes to dc and friends. (And then get irrationally irritated when they seem to have forgotten there's anything wrong with me. 'A mile isn't v far,' said ds the other day. Well, it is for me!! I/4 mile is about my limit before looking for a wall to sit on.) And v difficult for you because you're living with the person you most want to protect from bad news. What's your CNS like? You really need someone who you can vent to about the unfairness of it all without having to worry about making them feel worse.

Oh @BitofFun. So sorry, I didn't see your post. Thinking of you and hoping that they can sort the fluid retention asap.

@BitOfFun sorry you are struggling, hope you can get effective help v soon.
@Thymeout - that must be really annoying. Yes, I do often feel bad re DP, sometimes just for landing her with a sick partner. But I was so weepy this morning, unlike me, we talked about last night and she was great. Have spent an hour or so planting bulbs and moving plants around.

And it just occurred to me, why don't I try imagining a future for myself where treatment is totally successful and I have many years of good health? It's not impossible!

@Thymeout the food is my only issue at the PRUH. Chartwell has its own separate kitchen where they nuke everything to kill the germs. I'll never eat broccoli or cauliflower again. Food here is passable. And plentiful in that I can ask for something whenever I fancy.

@Bloodybridget I hope you find your rhythm in isolation. Try carving out space/times and get into a routine if you can so you're not with each other 24/7

Today I will have chemos 4 & 5. So far so ok. The first one B was god awful in that I was drunk and hungover at the same time.

I'm also sporting a rather fetching bum bag which carries my chemo pump. I have to sleep, shower and shit with it
Apparently in normal times I'd be in special apartment off hospital site to come and go hence portable pump

I met the rather dishy physio yesterday and I've had a session with psychologist this morning.

My entertainment is laptop (Netflix, prime etc), kindle, audiobook (though too much like a bedtime story) and Nintendo (I'm a big kid).

I also set up a playlist on Spotify where friends and family can add songs to bring me cheer.

Hello to everyone. Just been trying to catch up with posts......

@LucyWarlowsRightHand - what a carry on you've had. Hope chemo gets sorted soon. Capecitabine has certainly been kind to me so far, so hope it is the same for you.

@InOtterNews - a truly rubbish view! Write to Matt Hancock and ask for a mural to be painted there. He might be quicker to get that done then get Covid testing sorted!

@Bloodybridget - sorry that you're feeling low and for insensitive comments. Hugs from here.

@Lizdeflores - I have a temporary stoma too. It's not been anywhere near as bad as I would have envisaged. The stoma nurses have been pretty useless though, so am happy to hand on my top tips if you need them at all, either on here or PM me. I hope you get a date for your surgery soon.

News here is that DS1 and DH both had Covid tests yesterday (high temp and cough), but both negative. DH's job (hospital anaesthetist, and oncall this weekend, not that I'm being cynical!) meant that we got tests and results very quickly, so that was good. I'm doing fine. Sunny here in lockdown NE, and have had an illegal cup of tea with my mum and dad in the garden. Please don't report me! xx

have had an illegal cup of tea with my mum and dad in the garden

A sentence to sum up our times (It's impossible for me to break the law by having a cup of tea with my own mum and dad because they are in Australia and not allowed out!)

My saga continues. I haven't got the energy to summarise it right now, but it's become hilarious. I mean it, it's started to make me laugh. It's a beautiful day here today too.

Hi @ starmer Thanks for you offer the stoma nurses have offered me a pre op appt for next week, so i hope it will be positive. Glad to hear your experience has been more positive than you expected. I've spent time on IBD forums in the past and you fear the worst .
@Bloodybridget I hope you time in the garden has help lift your spirits today
@ bitoffun I'm sure being admitted is the last thing you want but I hope they can sort out your fluids etc.
@LucyWarlowsRightHand

Posted too soon @LucyWarlowsRightHand I hope your situation is sorted soon and you get the treatment you need

@BitOfFun

Was going to stop there, so you have no words to deal with, but as I guess there are further tests for you imminently, I wanted to wish you all the best, and I hope they have the fluids sorted out - are you peeing for England?

@InOtterNews - shame your holt is rather unlovely and hope it’s not too rough today

Hi Folks - sorry to interrupt your thread. I'm looking for chat for partners/family members of people with cancer. I know the description on this one mentions there's a thread like this somewhere on mumsnet but I've looked and can't find. My partner has lung cancer, currently in chemo. We have two little ones. Would love it if one of you guys could point me in the direction of somewhere I might find some supportive chat! x

@Jo7976 sorry for your situation. Look under the Life-limiting Illness topic in Health, the thread title is Still the storm. Wishing you and your family all the best.