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

@peaceanddove that is fantastic. So pleased for you xxx

Hello everyone,

I had my first chemo today. I was at Guys yesterday it's on lock down. No visitors allowed in with you. Saw the chemo unit and felt horrified nearly started crying. Anyway went back today and had pacli and tras. That needed in my thigh omg so much going in!

Hairs was chopped and donated it's strange having short hair. My wig appointment got pushed out as chemo brought forward so I'm seeing them next week. I feel tired, but I'm ok. Pretty sure it'll hit me tomorrow. I'm wearing gloves and a face mask on all travels now. Hand washing etc. Yesterday though I broke down. I wanted to not start chemo. This is a horrid time, but need to get on with it.

So much more has happened mainly positive, but will go into it another time. Love to all those who need it xxx

@peaceanddove that’s absolutely wonderful!
@nonotmenori good for you. You’ve faced down Day 1. Mine’s about to start in 4 hours. I’m taking courage from you.

@crabb you can do it. If I can, you can. Bring snacks, stuff to do,bring it all. I brought a travel next pillow that worked well fir me, but I didn't bring enough snacks and I haven't stopped all day! Xx

Thank you ❤️

Thank you everyone.

@Nonotmenori, today was the hardest day psychologically, it will get easier. Well done for getting through it. Thinking of you x

I woke up this morning and changed my mind. Now having surgery first. This also seems to be the stance of UK hospitals too. The pros/cons are 50/50 for chemo or surgery first. If I have chemo first, what if I get the virus? Will I cope with low immune system? Will there be treatment/a bed available for me next week, week after, next month? Will the hospital stop my chemo due to staff shortages?

Without chemo first the docs will not know how the tumour responds to the chemo. I will be having chemo after surgery then rads. It will be a cocktail of drugs to mop up any cells. The chemo would have hopefully shrunk the tumour meaning less tissue removed.

With surgery first, the tumour has less chance of spreading (aggressive type).

I would have preferred chemo first as I've a fear of this thing spreading but the risk of catching the virus and potential collapse of health care systems is more pressing right now. I choose chemo first I live in fear for the next several months. I choose surgery first, I have no idea how I respond to chemo and delay the "mop up".

Squiffy

I think surgery varies a lot for colon cancer patients. My tumour was in the transverse colon, the bit that goes across, at the top of the abdomen. I was told early on that I probably wouldn't need a stoma. It seems more likely if the tumour is low down on the left.

It's easier, too, if they can do it with keyhole surgery. But I'd had a long vertical incision 5 years previously for a radical hysterectomy and removal of a 22cm tumour, so they had to do open surgery because of possible adhesions. This meant I needed drains etc. and took longer to recover.

In my case, they noticed a nodule at the opening of the small bowel, which they felt they had to remove with clear margins, just in case, so my surgery took longer than planned.

I think I might have been discharged earlier without that. I was in for 8 days. Didn't need looking after when I got home. Had 3 visits from surgical nurses to check on wounds and take out clips. Didn't need any painkillers at home and think they went a bit mad with the morphine in hospital. I hate it, makes me disorientated and doolally, but they're limited with painkillers because anything codeine related sends the colon to sleep.

But that's just me, and I'm 78. There's a good chance yours won't be such a big deal. Honestly, the worst thing was that it gave me a sort of preview of very old age and being confined to a bed. Before I started chemo, I'd recovered well enough to be able to travel up to town and meet friends for lunch - admittedly on Victoria station - but it was just a question of building up stamina to get back to where I was.

I've only got half a colon now, but am back to eating normally. But I did follow their instructions to the letter about adding new foods to my low-residue diet.

P.M. me if you've got any more queries. Happy to help.

citybumpkin
I do sympathise. They left the decision up to me about whether to have chemo or not, and now I wish I hadn't started it. Corona has changed a lot of things. It's really not a good time to be immuno-suppressed. Even if I picked up an ordinary infection, I have a feeling that they'd be making different decisions about admitting me to hospital. At least, if you have surgery now, there'll be a gap for you to recover before starting chemo so, hopefully, you'll miss the spike.

Well, like @citybumpkin, my plans changed this morning. I turned up at the Cancer Centre this morning ready to start chemo but hoping to speak to the oncologist first, as I had been trying to do for the previous two days.
When we arrived we were told we had an appointment with him first - surprised by this as we’d been told he was fully booked. We spent 15 minutes with him, and it became clear that the situation re Coronavirus had definitely changed in his mind since the previous appointment. He’d been to meetings where planning for an increase in the outbreak has been discussed, pulling retirees in to form an emergency workforce etc. He’d also been researching the CV mortality stats for cancer patients (as had we). The end result was he was leaning towards saying no to me having chemo. I was not expecting that!
For me chemo was “the icing on the cake”, whereas hormone blocker and radiation were the key treatments. He felt the risk of being immunosuppressed was too great for the small benefit. As long as I did the radiation and took the hormone blocker for 5 years (and he explained the side-effects fully), then he was happy for me to drop chemo. So was I! So relieved!😅

Husband and I now having a small break (CV permitting) with the time he had booked off. And I can see and hug my grandchildren 😊. It’s been a good day.

Will be starting radiation on 15 April, and the Letrozole very soon. Will be interesting to see the side effects

I do very much sympathise with all of you trying to make decisions about, or doing chemo, with Coronavirus looming. These are horrible decisions and I was so glad to get good guidance today,

Thank you for letting me ramble on!

@Thymeout I know but as I have TNBC I feel that chemo is the only real way to ensure any micro cells disappear. Hormone therapy won't work on my type of BC. Either way I feel I'm living with the wrong decision.

@citybumpkin that's good news. When are you booked in? In hindsight I was annoyed I didn't have chemo first. I was in grey area for her2 and they decided in mdm 2 weeks after surgery I'd have to have chemo.

@crabb Good news for you too. Xx

I've hardly slept all night. I've got indigestion and I'm tired 😭 but other than that, I'm ok xx

@Nonotmenori Surgery will phone me today to discuss timings. Its not good news. I would have liked chemo first to ensure shrinkage of tumour, see what the response is and get rid of any micro stuff. When you ask your oncologist about metasteses and she says if you have them you will die...

I am in wheelchair at airport . Through security no problems, complete with drain bottle and electric pump. Sat sitting at the gate . Home soon .
You guys have been brilliant supporting me through this .
Drains etc out on island next week . In a bit of pain but manageable, my bowels feel full of concrete , a combination of GA and codiene!

@citybumpkin I'm saying it's good news because people are having their surgeries cancelled left, right and centre. It's good news yours is going ahead. I meant no offence.

@Trumpton Good luck. I remember to codeine pain and wouldn't wish that on anyone. Hoping you get home soon and recover as soon as you can x

@Nonotmenori No offence taken. Just very scared about the whole thing.

I hear you @citybumpkin it's a terrible time for us lot right now. There's never a great time to get cancer, but this just feels like we're all getting shafted even more than usual. Xx

@Nonotmenori not kidding...definitely feel shafted at the moment!

@Trumpton take it easy. Thinking of you

Trumpton glad to hear that you are on your way home. I hope your journey is comfortable.

I really feel for all who are waiting to find out how their treatment will be changed or affected by the virus. The extra anxiety is the last thing anyone needs

@Hippiechick162

Thank you for the welcome. :) My friends are being so amazing. I don’t know what I’ve done to deserve them all!

Hi @LemonsNVod sorry you find yourself here. How are you feeling? Do you know when they'll tell you re surgery etc?

How so everyone doing?

I'm doing ok. I've found a new place to move into with the help of my family. I've flat shared for years and years and this will be my first own place to myself. Just awaiting the checks to come back and fingers crossed I could be moved in by the end of next week. So that's going to be a massive help!

Still feeling okish. Had a slight headache and sore theist earlier, but seems to have gone now. Temperature seems to be normal so that's good so far. I'm starving all the time though. Is this normal?

@Nonotmenori Congratulations on your new place!

The steroids they give you with chemo are notorious for causing the munchies. Drinking more water than usual helped me with not snacking too much, and I was advised to drink lots anyway, as it helps your body process everything and can also help with some of the tummy woes that tend to come with chemo

4 days post op and I am doing all right !
Drain still draining well and I am still a bit shouty when I move but dozing a lot and managing exercises .
DH is feeding me well but it’s hard trying to stay 6ft apart although he is putting my tray of food at the doorway and I am precariously lifting it .
First full day of isolation done . It’s the law here to isolate ( not self distance) for 14 days . But I will need to go to hospital for dressing and drain removal and Herceptin injection next week . Hopefully all on the same day !
I don’t know if I posted here that I had to learn to self-inject blood thinners to do in my hotel room . I was given a sharps box from the hospital so explained at reception .
That was weird .

Good to hear that you are doing well Trumpton Having to isolate on top of everything else is the last thing you needed.

Just a thought but is there a little table or something that could stay outside your door? Easier than lifting the tray from the floor.