CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

Thanks MrsT. The oncologist did say that with Perjeta they often find that the cells are tumour dead when they come to remove them so fingers crossed that happens with you and it's a lumpectomy. Mount Vernon did a trial 5 years ago on women who had breast and other cancers which were untreatable. The outcomes were really good and it apparently protects you going forward but they didn't explain how. I'm so glad I got this treatment as people just a few months ahead of me weren't given it.

My tumours are unusual in that the primary site is so small but the lymph node was a real cause of concern.

Hi Symphony

I’m a bit torn really as I think oncologist was indicating that she thinks a mastectomy would be better in my case. The Surgical Consultant has ordered another MRI to take place just before Christmas so will see where I am then and I will ask the oncologist to say clearly which will be best for me longer term.

Yes I think the oncologist did mention something about the perjeta being newly licensed (?) when I first saw but to be honest I was in such a panic it all went over my head!

Symphony that's great news good luck tomorrow.

purple argh. I hope you got through in the end. Thanks, I applied last week and I just used the first app that came up when I searched. It worked alright, but I look awful my hair has really suffered from me not being able to wash it properly!

freddie I'm overly cautious about toes now, so I'd definitely get it checked, but it may not be necessary

I hope everyone is having a nice enough day. I saw the oxygen nurse. I don't have to use the oxygen 24/7 - yippee! It's up to me how much I use it. So I'm going to cut down a bit. It makes my nose so dry. I have to moisturise it with KY jelly

Symphony that's brilliant that your tumours have shrank so much

I finally got through after being on hold for 40 minutes, they've emailed me some forms to fill in and I have an appointment on the 3rd December to go through it all with them. The woman on the phone didn't have a clue what she was doing and Macmillan have warned me a lot of them still need training on the new ESA when it comes to dealing with the DS1500 form so I'm not looking forward to it

That's ridiculous purple. They shouldn't be doing it until they've had the training good luck with the forms. Hopefully you'll get lucky and whoever reviews them will know what they're doing!

Thanks rhod and Freddie for your replies re tamoxifen. I am also 45 so I guess I'll wait and see how it all pans out! Work has been ok but I'm so tired. Heading home early today! Hospital again tomorrow, hopefully the histology results will finally be back.
TQ seriously you don't need this shit! Sincerely hope you have better luck tomorrow. Sending hugs 🤗

Good luck for tomorrow Knicker

I love the way that freddie just casually mentions the Moonwalk. That’s a sodding great overnight marathon!

(My weird fascination ruses again - someone only has to mention toenails and here I am!)

My next round of (routine) tests is due over the next few weeks. I have of course convinced myself that every single little twinge means it’s all going wrong.

Must remember to ask if my meds are Brexit-proof, if if I can have an extra month or so as a stockpile. They are however curiously unwilling to do that, having interrogated me in the past about how much I’m holding. Possibly because I googled it’s cost. Now I know what master criminals feel like, as I walk through a city with several thousand pounds worth of drugs in my bag.....

And all the best to others with tests! Hoping for the most optimistic results for everyone.

And several PIP heads on spikes

Purple bring plenty of ID with you, plus your Fit Note and your DS1500 if you have it. One of the purposes of the meeting is to confirm your ID, which isn’t made particularly apparent on the phone. I wasn’t put in the support group straight away and have been sent a long work Capability Assessment form. My benefits advisor has said I shouldn’t need to fill this in with a DS1500 so I’m currently waiting to find out if I can get put directly in the support group.

Morning all

Symphony. Hope chemo is ok today and fingers crossed that you won’t have the same side effects as last time. I didn’t have as many side effects the second time round (didn’t have nosebleeds for example).

I have been thinking not heard from Simm1 for a while. Hope you are ok Simm.

I’m having a quiet day today. I’ve got quite a busy weekend ahead with 3 friends coming to stay at different times, having another ECG at the hospital on Friday and chemo again next week.

Mrstraveller I hope you have a restful day today

Good luck Symphony :)

iVampire fingers crossed for the next round of tests

Thinking of everyone, especially those feeling rubbish

Feck. Results not quite what I was hoping for... looks like I'll be joining those of you on the chemo train. Best read back through now and take note of all the hints and tips you lovely lot have shared!

I'm going to have a portacath fitted apparently- anybody got one of those?

Best I cancel my hair appointment

Sorry to hear that KBG. When will you start? Leslie has a port and has sung its praises on hear a few times. How are you doing Leslie? Are you trying out the new chair?

Start December 12. Thankfully I can continue to be treated at my current hospital rather than making the trek to Guildford where there is never anywhere to park!
I've also been told to get a flu jab in before I start, and an echo, and bloods. No rest for the wicked eh?!

Hi KBG

Sorry to hear your update. There is lots of support and advice on here about chemo side effects etc. I have found it invaluable. It has really helped get me through

Sorry to hear that KBG
Reading back through the threads will provide you with all kinds of useful info, and not a little discussion about toenails and poo but mainly I just wanted to pop on and say - from the perspective of 6 weeks on from my last chemo - it wasn’t that bad... it’s not fun; there’s stuff I’d frankly rather be doing, but you do get into a routine, and for most people that means being able to predict when and how you will feel rough, and when you will feel good - even great! So you can plan your life around the chemo schedule!!

I’m doing well - day 8 after my mastectomy; one drain down and one likely to stay a few more days, but I’m up and about and trying to balance looking after myself with doing a bit of activity and getting some fresh air every day!! The reconstruction is - well - kind of weird ... but also not half as weird as I had thought it might be, so I’m cautiously optimistic that it’s something I’ll get used to in time! Playing the waiting game again to get the results of the pathology from the breast, and the lymph node biopsy - hopefully Tuesday next week. Hate the waiting!!!

Much love to everyone tonight.

Hello @KnickerBockerGlooooory welcome along but sorry you have to join us.

Hope everyone ok, sorry I haven't been keeping up. I rather overdid it at the wkend, not drinking or anything just doing too much, so been recovering!!

Felt better yesterday so hopefully that's me till next chemo next Friday.

Was in for a 'marker' insertion today and stupidly disappointed that apparently there is no change in the 'lump' since I started my chemo. Apparently that's not unusual and you tend not to see any change till after 3rd dose but still...... am not known for my patience

Am contemplating changing my name to 'titanium tits'

Hi fuzzy good to hear that you're heading in the right direction re recovery. I think they took my drain out too soon, hence the trouble with haematomas! Slow and steady is definitely the way to go. I bet the recon does feel a bit odd - did you get replacements the same size as your originals?? Don't answer that if you'd rather not! When I eventually get my second mx I'm after a neat little pair of B cup prosthetics

KBG I have a portacath. I just had it replaced as it became blocked after 2.5 years. The next one should see me out! :) if you get a choice, I'd recommend a chest port rather than an arm one. I have an arm one and it's wobbly. The surgeon who put my new one in agreed with me that chest ones are easier to use, but we decided to go for another arm one so he could use the same opening after removing the old one. You can have blood taken and IV meds given. It's great. And you can swim, shower etc. as normal.

KeepCalm sorry that progress is slow - I hope the marker insertion wasn't too uncomfortable.

Fuzzy it sounds like you're doing really well after your op :) I'm sure you'll get used to the reconstruction with time. It's a big change

TQ I used my chair for the first time today. Progress is slow. I saw my oncologist today. I'm trying the tablet chemo we discussed a while back, Lonsurf. This is my last chance saloon so fingers crossed it works :)

I'll be starting my tablets next week or the week after, depending how I feel. I'm also going to be having G-CSF injections.

It's been a tiring day with my first outing post-pneumonia and a rather frank discussion with my oncologist. So I'm under my blanket and choosing what takeaway to have for dinner! Hugs to all who need them.

Leslie I’ve been thinking of you. I don’t know much about Lonsurf but I hope you will have a good reaction to it. Sorry to hear about the frank discussions. Not my favourite kind.

Take away sounds like a plan

Takeaway ordered.

Meant to say KBG unless money is tight then get the haircut anyway. (Or was that post a joke?) I had mine cut before I started chemo. I thought I might as well enjoy it as much as I could before it fell out :) some people get it cut shorter in preparation, but I kept mine long.

Sorry, thank you Namechange

How are you?

Hello lovely. Poorly tummy here with loads of pain, plus coughing creeping back. It is so cold though which I’m sure doesn’t help, and I’m generally exhausted.

Have a scan next week which will take a couple of weeks to report so they’re likely to be ready to tell me about it in my last clinic before Christmas, and then another one 3-4 weeks after that. Am thinking of asking to put all the chat off until both scans are done and Christmas is over. I know it’s a bit ostrich but I’ll still be on the same chemo so I can’t think what I actually need to know. Might have a chat to the nurse about it all.