Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

@LemonDrizzle10 your dog is gorgeous! 😍😍

@MyNamesGaryAndImAddictedToChips congrats on being home! Hope your recovery is smooth.

@EachandEveryone that must have been so annoying - did you get a new date for the actual results?

@lucysmam happy to hear your good news

@Crimsonbow i want to high five you for the "I bought big post-birth pants but now they're just my pants" comment 😁😁 that really tickled me. Can relate.

Day 8 post first EC chemo here and definitely seem to be feeling a little brighter. Might even attempt a little housework later after work. Oh the excitement!!

@AllotmentTime good to hear you’re feeling brighter. Take it easy easy today.

I feel like I’m on a downward slope with the radiotherapy. Feel more tired today. Really looking forward to the weekend off.
3 done 7 to go. It’s so hard to keep going sometimes isn’t it.

thanks @dotty2 and @TwigTheWonderKid relieved it’s not an accurate tool as was very depressing and didn’t match what the oncologist told me!!

Making the most of my last two day off work and sitting in the garden with the doggo

@Crimsonbow I really appreciate any shared tips. I need to buy some big pants! I thought the plan of shortish nighties was good.
Other tips I’ve read are some kind of abdominal binder to support the muscles - I was going to ask the surgeon about that. And a firmish cushion to protect you from the seatbelt on way home. I can’t remember where I got those from - could be here, could be Facebook groups.

Can I ask - what kind of cancer do you have? Mine is Primary Peritoneal - rare - but treated as ovarian. I think my op might be September sometime

Thank you to everyone who has wished me a smooth recovery.

@RedRosesPinkLilies Anything you want to know at all just ask. Or is it a case of you don't know what you need to ask about? I'm currently on day 8 and it's not really too bad, as long as I don't expect to do anything very much. I have so far got up, had a shower and got dressed and after that I needed a rest. There's no way in the world I could walk far, do housework, cook, shop or anything like that. I can get to the bathroom and get myself a drink, that's about it. I'm only on ibuprofen and paracetamol for pain relief though, so I think that's ok.

@Remaker I will be most glad to receive any pearls of wisdom you might offer. I am trying to go easy on it but I'm just buggering about not quite sure what I'm doing. The first day the cramps were bad so I took buscopan but I'm convinced that just prolonged, and intensified, the agony. Maybe simeticone would be better, I don't have a clue. Digestive enzymes perhaps?

My beautiful doggo basking in the sun this morning 😁

@MyNamesGaryAndImAddictedToChips it’s good to hear that you have surfaced and are pottering. That’s good progress at this stage. Have you thought of peppermint oil? It’s used a lot for colicky pain in adults and is gentle. Wishing you a smooth recovery.
I had a nice evening out with my SIL last night and drank a lot of wine ( for me!) I think my taste for alcohol has returned so will have to be more restrained. It was easy to avoid when it made me feel ill. Now I’m enjoying it will be harder.
Feet looking good and I’m feeling well half way through round five of Cape. Maybe the vitamin B5 is helping. Fingers crossed as I have a week till my French expedition.

@MyNamesGaryAndImAddictedToChips so the problem is mainly wind pain? Are you constipated? I was discharged from hospital on day 9 and had constipation from the opioids I’d had for pain relief in hospital. But I also had breakthrough diarrhoea- fun! I took Metamucil (psyllium husk) as my surgeon didn’t want me to take anything too drastic so soon after a bowel resection. Once that blockage was cleared everything was much better and no more cramping.

Are you following any particular diet? I am on a low fibre diet which has been helpful in reducing wind.

@Remaker Thanks for the advice. I don't want to jinx anything but it seems to have calmed down a little today. So at the risk of too much information, I was constipated for ages before, it was taking three different laxatives for anything to happen. Now suddenly the main problem has been cramping, painful, loud gurgling (my son thought it was someone walking around upstairs) and some wind, which followed a day of vomiting bile in hospital the day before I came home.

I haven't been eating that much really, pretty low residue. A few Rice Krispies, a piece of white toast. I didn't have an appetite before the op and it isn't back.

I am currently on my third course of coamoxiclav in four weeks and along with the bowel prep I don't think this has helped.

@TopOfTheCliff Peppermint oil is my go to for this kind of thing, it was great for the post op shoulder pain last time but not so effective for this, so far.

@Scandimandy Your doggo is adorable! Loving all the dog photos, I lost my boy four years ago and not felt like getting another since. :(

@RedRosesPinkLilies for the journey home, ask whomever is collecting you to bring a soft pillow to go under the seatbelt. That way you can mould it to your front which will stop the seatbelt rubbing. I did this and it was ok for a half hour journey.

@MyNamesGaryAndImAddictedToChips the wind pain I had was horrendous! I'm pleased it's calmed down a bit for you today. It sounds as though you're very empty which is probably compounding the issue but it's impossible to force food down with no appetite. Do you normally drink hot drinks? I found a really hot cup of tea would get the wind moving around a bit. It's totally miserable though.

@MyNamesGaryAndImAddictedToChips oh that sounds tough. I completely understand the difficulty with eating when you have no appetite. Do you feel nauseous at all? I was sent home with anti nausea medication and I found if I took that an hour before a meal it really helped with my appetite.

@Fantasea I am coming to the idea of eating very small amounts of whatever more often but it's a conscious effort.

Did I see you say somewhere that you were investigated first for a blood cancer? That's the exact same thing that happened to me. My CT came back initially with a query of lymphoma because it showed mesenteric panniculitis and one enlarged lymph node. The haematology consultant was sceptical so they looked at my scan in the MDT whereupon it was noticed that whoever had reported a 2cm lymph node hadn't commented at all on the 7cm pelvic mass. If I am diagnosed at the end of the month it will have taken 6 months from the first suggestion of cancer.

@Remaker I don't really feel nauseous, no. Just very poor appetite. Everything feels like wet cardboard in my mouth and I wouldn't be bothered not to bother, if you see what I mean.

@MyNamesGaryAndImAddictedToChips yes I get it. I had to take my Capecitabine tablets with food morning and evening. I was usually hungry in the morning but in the evening I would be frequently in tears at the effort to shove enough food into me so I could take the tablets. I didn’t feel sick, just had zero appetite. Since I finished chemo last week my greatest happiness has been not having to eat if I’m not hungry!

It’s so hard, I’m really sorry you’re experiencing this.

@Remaker Thank you. It's been going on so long it's just become normal.

Thanks @MyNamesGaryAndImAddictedToChips Little did we know when she came to us 9 years ago what a great therapy dog should would be for all of us. We are dreading the day she is no longer here :(.

This is my boy, Rusty.

He was the animal love of my life.

He looks majorly calm 😁

That's the St Bernard in him, but he was also half Rottweiler so 40mph zoomies right through the house and garden accompanied by mad barking were also the order of the day! 😆

Both of your dogs are gorgeous! I'd love one but we are a cat household. I'll share a picture when I can find one, all my photos are of my human children these days.

@RedRosesPinkLilies I have an ovarian tumour which is possibly malignant but they won't know for sure till it's out. Although my bloods are looking positive. Had a call today about booking a pre-op phone appointment for next Wednesday. So I think surgery will be soon for me. What will your surgery remove?

How is peppermint oil taken? Do you eat it? Sorry if that's naive!

@Crimsonbow I have peppermint oil in capsules from Holland and Barrett. You just swallow them.

Good afternoon all. I had a phone call from the nurse today saying my CT scan was inconclusive (biopsy showed recurrence of BC in same breast) and so I need a PET CT scan at a different hospital. Is this common? I'm not sure whether it's good or bad news. The wait for treatment of any kind to start seems interminable. It's now 7 weeks since GP referral and I'm worried that all the time they are doing nothing, the cancer is spreading further. I am taking high dose CBD oil and wearing CBD slow release patches in the hope they will slow it down. There is some evidence in animal trials that it does help and frankly I'll try anything that might offer a glimmer of hope. Hoping everyone else is having a good day.

@Crimsonbow
The tumour is widespread grains of rice in my abdomen (and groin lymph node/ right pleural cavity (lung lining))
They’ll just operate on my abdomen- but will remove all Gynae organs, the omentum, probably some bowel mesentery and some bowel with it. Bit daunting! But the surgeon seems really good. I know she’s trained and worked at the Tata memorial hospital in India - so hope she knows what she’s doing.

You may be similar to a friend of mine - she had an ovarian cyst removed over 5 years ago - turned out to be low grade ovarian ca. She had to go back to have the rest of the surgery, but she’s been fine since. No chemo, no radio. I hope you’re the same xx

I had my follow up telephone appointment to report back on my scan that I already knew about. She asked me if I had any side effects and I said yes, my iron levels and white blood cells were still low and it was affecting my ability to do things, and she then spent the rest of the time telling me that it wasn't a problem, but wasn't it great news that my scan was NED. Well yes, but I felt like they only want to hear some version of "Aren't I lucky not to have cancer, everything is great!" She then started to lecture me about turning down a physical examination so I went on a bit of a rant about how I'd said over and over again that I wanted a female doctor because of sexual assault, and she said "Do you mind if I flag that up on your records so that we know?" - why on earth didn't someone already think to do that?

I feel for all of you that are living with uncertainty. It's horrible. I listened to a psychology podcast earlier in the week about living with uncertainty, and the researcher had worked with women with breast cancer who emphasised the worst bit was the waiting for a plan. Nothing massively jumped out at me about what you can do in the meantime other than distract yourself!