Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
Top

Thanks Top and TwoNoisyBoys. Hope your heart palpitations are nothing serious Top. I just got back from my second operation, was lucky got moved to a private hospital paid for by nhs so had own room and bathroom, originally said just day surgery but surgeon who works in both said fine to stay overnight so I did as very drowsy and in pain and lovely food there. DD was jealous when I told her my breakfast was a banana, mango and yoghurt smoothie and porridge with fresh fruit, had 2 other nice meals as well and got industrial quantities of free drugs. Results in 2 weeks or so and less drowsy now and pain improving, think some of it was muscle ache from first operation when pushed arm back. The surgeon was so kind he said I saw what you have been going through mentally and I will look after you going forwards and stroked my arm and came to make several visits as well as the regular doctors and nurses.

MissSmiley I am not sure as I have a DH at home who loves me being ill and playing nurse, but I would say asap to your medical team. It maybe you could stay in hospital longer, our hospital is rammed but I got shifted to private on nhs so may still be able to get that, it was also said if I had a drain in the district nursing team would visit every day if time, something like that might work, that wasvia hospital.

Macmillan also do a needs assessment thing at our hospital, again via hospital, think that may link into adult social services. Hope can get something sorted.

@MissSmiley have you told all this to your dr or specialist nurse? There may be some care available - I know of other patients who have daily carers visiting so I would ask. It might also mean you need a bit longer in hospital. Be really clear about your situation and ask exactly how you are expected to manage.

Thanks for your replies, I will make sure they know, my youngest 4 are all at secondary school but eldest son is 19 and works full time, I really don't want to ask him for help with anything personal.

My ex husband had originally said he would stay with them while I'm in hospital. I'm expecting it to be a couple of weeks. I am waiting for him to sign the financial consent order so we can get the decree absolute but he's now saying he won't do it unless I pay him more money, he's had a huge lump sum already and I've paid various debts off for him, that was the financial settlement. I can't believe given that I'm off work on SSP and might never work full time again that he's being such a dick. I'm not a high earner I'm still waiting to start my chartered accountancy exams. He thinks "babysitting" the kids while I'm in hospital will be doing me a favour so he's withdrawn that offer.

Hooray @Silkieschickens for the lovely surgeon and the delicious breakfast. That is my favourite start to the day, smoothie and porridge. I hope you doze through the painful bits and recover quickly.

@MissSmiley it seems to me you could use your cancer diagnosis to frighten your fuckwit ExH. Tell him you won’t be able to work again and he will have to support all the DC and pay you maintenance as you will be on benefits. Or sign the Financial agreement now while he is still ahead. What a knob and well done for getting rid of him!
Could you get the DC to discuss with him how they will cope while you are in hospital? They are old enough to talk to him directly. Presumably he doesn’t want social services to intervene just because he is being a dick. You really don’t need him making life even more difficult.
Sending hugs, you deserve them!

I’ve been okay since the weird palpitations. I don’t trust my body much any more but it seems to be creaking along. I started fancy turmeric capsules for my joints as I was scoffing about how ridiculous these complementary therapies are then realised I might be missing a chance to help myself. I will take 6 weeks worth and see if it helps at all.

Best wishes to all. Keep warm xx
Top

Hi everyone, hope you’ve all had a peaceful weekend?
I’ve just come on to say…isnt chemo bloody rubbish 😕 been wiped out, shaky and ‘spikey’ feeling all day. Literally can’t get off the sofa.
I know it’s a means to an end but I’m feeling very sorry for myself tonight.

Thanks Top. Hope the palpitations continue to calm down. Certainly keeping warm here, back in koala fleece onesie on pink recliner with pink fleece duvet, pillows and sheets looking over our thatched roof and birds are singing. Our cat though did not get the memo that cats are supposed to look after sick people and she is somewhat annoyed I am back and dh is doing things for me not just her. Fortunately the rabbit was very welcoming.

Sorry to hear you feel low TwoNoisyBoys, yes this cancer thing is rubbish and the treatment had better be working but one day we will reach the end, just wish was 2023 now and both cured.

So sorry to hear about your ex MissSmiley.

I hear you, Twobignoisyboys
On day 4 of cycle two and it’s awful. Been throwing up all morning -and the other end too- and horrible joint pain. Last time, day 5 was also rotten but then it steadily improved so just need to grind through this. Horrible.

MrsWooster I would phone your team or get someone to phone for you if not well enough and see if they can put you on a different anti sickness drug, they told me there are lots of different ones. If they can stop the sickness that may make the pain easier as the pain relief must just be going out of your system atm. Sorry its so rough.

@MrsWooster please contact your team. I was given drugs the district nurses could administer if I had bad sickness etc. and their 24 hour number.

@MrsWooster I hope you manage to feel a bit better soon

Hello to everyone

@TopOfTheCliff I dug deep and went to see my ex today, emailing isn't the way to get these things sorted, he had got muddled up about credit card that it turns out I had already paid off for him months ago. I've reassured him he can still see the kids whenever he wants and he already had the financial settle form on his desk but couldn't work out how to fill it in. He's nearly 62 and this isn't the first time he's been divorced but he's autistic and struggles. I think we're all good, and he's going to be there tomorrow when I tell the kids about the cancer. Just have to get through the meeting with the surgeon tomorrow at 9.30am, I'm really hoping they can do it soon, dragging it out for months would be much worse for me now that I've come to terms with it. Wish me luck everyone

Everything crossed@MissSmiley

@MissSmiley that sounds very positive and well done for grasping the nettle. It does sound as though you are very good at managing the ExH, but once your treatment gets under way you will have to hand over the reins and let him and the DC get on with it, which will be a worry! Good luck tomorrow I will be thinking of you xx

No more palpitations here, and I cycled 40 miles yesterday and 25 today. I think the turmeric has worked a miracle and I will have to eat my words
Best wishes to all and may your week be smooth and positive x

Good luck MissSmiley.

Impressive cycling again Top.

Just in recliner here taking 5 lots of meds with big bruise from injection nurse did to add to my scars but all in a good cause I guess.

@Silkieschickens thanks, I hope your bruise calms down, I got a blown vein when I had my contrast for the MRI, it was like an egg!

@TopOfTheCliff I was with him for 25 years, he's much older, I'm only (ha!) 49, he's great with the kids, I trust him completely, leaving him was one of the hardest things I've ever done, well maybe until now, we'll see how the next few months go. Well done with the cycling, that's impressive.

Thanks @thesandwich, I'll report back tomorrow after the appointment.

Good luck today @MissSmiley I hope your appointment goes well.

@MrsWooster definitely ask for more meds, I had emend as standard for all of my chemo and it really worked.

@TopOfTheCliff Hopefully normal service has resumed. You cycled 25 miles yesterday and I didn’t get dressed!

@Silkieschickens I hope you recover quickly, the full node clearance was the most painful part of both of my surgeries.

I have had a hole open up in the scar line from my port insertion.
My chest was very painful on Saturday but it’s often painful so didn’t really think much about it. On Sunday morning, I could feel a gap in the tissue but the skin was intact. Just raised with blood and fluid which burst over night.
I’ve got it dressed with aqua cell AG to soak up the fluid and have got some antibiotics. Message sent to my oncologist to arrange me an appointment with the plastic surgeon.

I’ve also got drama with my radiotherapy, I had my planning CT scan and asked them not to radiate the inter mammary chain lymph nodes because the tissue damage goes right over these. Now I find out that it’s all or none for lymph nodes so current plan is breast only but I had so much cancer outside of the lymph nodes in stage 4 of the axilla that I am worried about spread to cause secondaries. I’m due to speak to my oncologist in the morning and I am considering delaying radiotherapy for a few weeks to allow for a second opinion.

@MrsPnut hugs to you that sounds really tough

Thanks for the advice-I have contacted the hospital and got ondansotron from the GP and I’ve managed a piece of toast and mint tea.
I dodged a bullet at chemo on Friday-a tiny, tiny extravastion caught in time so it’s all good.

Delighted to hear about the turmeric Top -I take it too for inflammation and will up the dose to help the joint paint (though I think I’ll leave the cycling to you!)

Oh @MrsPnut that is so frustrating about the port hole. I had a leak from my axillary lymph node clearance that hung about for weeks dripping and I still have a weird little tunnel there. I tried honey on mine which seemed to prevent infection and helped it granulate but nurses always know best.
It must be hard knowing what to ask for. I think my priority was to get rid of the cancer and stay alive but now I am out the other end I am rueing the damage it has done me.
I’m sorry if I am rubbing salt in the wound bragging about my cycling. If it helps I woke up today so stiff I have had a morning off reading blogs about singlehanded sailing to inspire me. I seem to take two steps forward one back at the moment. But we all keep plodding onward!
Best wishes to all

So glad you are feeling a bit better@MrsWooster. Sending good wishes to everyone going through such tough times.@MissSmiley and @Silkieschickens special good wishes.
@TopOfTheCliff hearing about your adventures is v inspiring and shines a light down a very long tunnel of life beyond treatment, warts and all. Thank you.

Meeting went well, got to go in for an anaesthetic assessment, is that the same as a pre op? and then they’ll book me in, I’m expecting that to be quite soon. All the risks explained but I don’t have much choice really. I mentioned about going back to work in 6 months and he kind of laughed, I’m beginning to realise that won’t be possible, maybe after a years recovery who knows. X

Has anyone done the five day breast radiotherapy course rather than the 15 day? This has been presented as an option and is much more attractive from a multiple risk management perspective than the longer course (I have to come off treatment for this). I like the fact its much shorter but am worried about the skin changes and potential impact on the reconstruction as I finally have a breast I am happy with!

Hello there
So glad to find this group, you're all inspiring. I am at the early stages of diagnosis & have a biopsy result tomorrow which I'm very anxious about. I've been hoping to find a kind supportive group & think I've just done that.

@MissSmiley that’s good news. I know what you mean about them explaining the risks. They say “and there is a risk of paralysis or death” and you just nod sagely because you have no real choice. I bet it feels a bit real now. I’d be filling the freezer with a month of easy meals I think!

@HerbalRefreshment I had the FAST five and it was a doddle after chemotherapy. No redness or sore skin and minimal fatigue. About six months later my boob felt tender and it still hurts a bit and swells but that may be the axillary node clearance I can’t tell. I was glad I only had to go up there five times.

@emmielougriff welcome to the thread nobody wants to be on. You are safe here to rant and grumble. The rule is No Googling! Just stick to NHS or Macmillan sites or ask us. Once you have a plan you will feel much better. Have you got a nice OH at home to look after you? Are they allowed in with you tomorrow? Fingers crossed for good news or at least not too bad news…

Waves at @MrsWooster and @Silkieschickens and everybody else going through it
Top

@emmielougriff welcome, thinking about you while you wait for your biopsy results. They're a great bunch here.