Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

Hi Resting sorry to hear about your sister. There is a thread for those supporting loved ones with cancer here which you might find more useful.

All of us on this thread have cancer ourselves so we look at things from a different perspective. It's impossible to generalise about chemo - everyone has differing experiences depending on general health, chemo drugs, whether radiotherapy is required etc. Many people work through chemo.

I recommend you let your sister make the decisions about what and when to tell people, and talk to your GP about mammograms etc.

Purple I do hope the sickness has eased off now. You must be exhausted.
Leslie fab news about the shower!
Aimlessly and Pandora I hope you're warm and comfortable and resting.
Namechange Yum to MaccyD breakfast.

Resting forgot to say that there is a lot of great advice on the Macmillan website

Me again!
Just got great news from the hospital! I'm in the trial group that includes both olaparib and niraparib - these are the two new drugs that are in tablet form. I'm obviously delighted about this though a little confused because she said I wouldn't be having taxol (by iv). My understanding was that each of the groups would include taxol, with nothing extra (group A), taxol + olaparib on top (group B) or taxol + olaparib + niraparib (group c). I asked her twice and she confirmed no taxol. I'm not going to get worked up about it - I'll find out on the 27th either way.

Assuming the nurse is right, it means no PICC line, no drip, no beeping machines, no hair loss... there are side effects of course and I can read up them now. I didn't want to before in case I didn't get into the 'added extra' group. Yay

Yippee! I'm so pleased for you TQ

RestingBitchFaced sorry to hear about your sister. Hopefully TQ's links will be helpful

I have good news too - I've just got my PIP. With the backdated payment it's well over £1000 so that'll come in handy.

My friend stayed for a lot longer than I had expected so I'm quite tired now. I tried to hint, but I felt too awkward to actually ask her to leave.

TQ that’s great. So great not to have all the stuff that goes with IV chemo

Leslie also great news about your PIP. About time too!

I’m knackered post chemo and not looking forward to the injections and aches and pains over the weekend. Leslie I bought some of that neck and shoulder rub you suggested from Amazon so will no doubt give that a try soon.

Xx

I hope it helps Mrstraveller I've been quite lucky with the injections. Apart from that one day with my knees I haven't had too many aches really. Just a bit in my lower back, which my heat pad is helping with. I hope you are on the sofa with your feet up now

Great news TQ and also Leslie 🎉

I had Herceptin jab at the oncology unit yesterday, swiftly followed by a clinic appointment with the oncologist - came away clutching my first box of tamoxifen, but with instructions to take them when I feel ready... So I think I’ll start in the new year! They can sit in my bedside table til then...

Anyway better fly - we are off to the panto tonight (oh yes we are!! )

Resting sorry to hear about your sister. I'm 45 and been diagnosed with breast cancer on both sides this year. I also lost my mum to BC at 46 and my dad to bowel cancer at 54. I've been in the screening program since age 35 and a routine mammogram picked up my first cancer in April (luckily). I would start with your GP and ask about genetic testing too (although amazingly to me, mine came back negative). I had my first chemo last Wednesday. I felt pretty ropey immediately (nausea) and that has come and gone over the last week. I haven't lost any hair yet but it has gone dry and weird. As TQ said though, everyone reacts so differently there is no way of telling how she'll get on. Best of luck though xxx

Noodles was it you worrying about your drain being in still? I had mine removed at 6 days when I still had nearly 100ml a day. All that happened was the fluid collected behind my scar and I had to have it drained every 3-4 days so don't panic! A lady I know had her drain for nearly 3 weeks.

Mrs I didn't get a drain bag so bought one from Drain Dollies - however it was £10 for a scrap of fabric! If you know anyone who could vaguely sew you a small, deep bag with a really long strap do ask. I'd send you mine but I need it for the second mastectomy...

Ok will catch up properly with the last week now!
Question re chemo: does the nausea eventually abate during each cycle or is it here to stay??? It's not bad enough to take the medication but it's not very nice

Just a quick flying visit as I'm a bit under the weather.

Hope all are doing well.

I've finally got a date for my mastectomy and node clearance 17th January. They are booking a bed in itu, a senior consultant anaesthestist and a senior theatre team because I'm such high risk. the surgeon has closed the rest of that day as he thinks my surgery could be that long/difficult.

So now I'm scared. I've been alright up until now.

Pandora that must be very worrying for you. But it's better they have everything in place and hopefully it won't be needed.

KBG it really does depend on the chemo drug and the individual. One regime I had permanent nausea and the other it was just for a few days each cycle, if that. I hope it eases up soon.

Fuzzy good that you can wait a bit to start the tablets. I hope you enjoyed the panto

Oh @Pandoraslastchance I completely understand. But how about we spin it as they're making you their sole focus for the day and concentrating on nothing else

Hey everyone

Leslie and TQ so pleased you both got a bit of good news re the trial and pip! Can't believe pip took so long!

Keepcalm Sorry to hear your news about your chemo, waiting and being in limbo must be so hard right now. I really hope you get a new plan of action soon! I'm absolutely loving the puppies on insta btw! How do you have such gorgeous, sleepy babies? My cocker cross is an absolute maniac!

Purple I hope the throwing up has eased off. Sorry to hear you're so ill.

Pandora I imagine you're v worried, but you'll wake up and it will be all done and behind you. Surgery is scary stuff, but it sounds like they're preparing well by not having other distractions patients.

Knicker chemo is different for everyone. My nausea is getting worse each cycle, but it's especially bad the first three days. My advice is, take the anti sickness meds! Make sure you take laxitives too, cos they grind your intestines to a halt!

I have one more chemo on Friday before an interim pet scan on 2nd Jan to see if it's actually working. I was in hospital at the end of last week with severe pain. It's a rare side effect of my chemo, so I've got oxycodone for this cycle. I really hope it works. If not, my consultant is going to look at options, including changing chemo regimes.

I do read this thread every day, I'm crap at posting, especially when I feel shitty!

Hello wise ladies (I have so much faith in you guys!)

I have an opportunity to cut back on work, or stop entirely. Finances would be ok. The thing is I can’t get my head around what I would actually do all day. No kids, and the mental puppy and angry cat only need me so much! My chemo is only every 3 weeks at the moment and I only take off the afternoon of the treatment, so I don’t spend much time on my own at home during the day.

Does anyone have any advice. Did anyone find that stopping work gave them too much time to think? What do people who don’t work and don’t have kids/small kids find themselves doing during the day?

I’m so sorry if this is really patronising or intrusive (I’m still feeling all emotional and exhausted so let’s blame that!). I’m just struggling to get my head around it having never not worked, probably since the age of 14. My friends all work full time and my parents live about 3 hours away so I worry that I would end up alone a lot of the time.

Any wisdom gratefully received!

PS I have the option potentially to do some contract locum work which maybe would be a good half way house? Oh I hate making decisions!

Letter arrived today for 28th Dec at the hospital about an hour away.

It’s a Friday and will be closed 1st & 2nd so the results will take ages. I don’t get it 😞

Have phoned the oncologist to make her aware that’s when the ‘urgent’ referral has come through for......

I just can’t quite get over the urgency of her call on Friday. Saying I’d be scanned Mon/Tue That I was now an urgent case/priority.

And the 28th Dec turns up...... 🤷🏼‍♀️

@Namechangeforthiscancershit I'd be sorely tempted to cut it down but not stop but I'm not very good at doing nothing

Hi namechange I stopped work at the end of January, for good. I have worked all my life (59 now, so a lot older than you), taking only brief maternity leave (exDH was in and out of work...). I worried about what I would do, how I would feel. In fact, I've adjusted very well though I had wfh for the previous six years so got used to being pretty isolated. I like my own company and I do enjoy being by myself. One DD has moved away, one is at uni, the other one graduated at the end of June and is now living here with me permanently so I'm not entirely on my own - she's out at work all day.

Tbh I've found it very relaxing - I wasn't enjoying my job though. I get up when I wake up (about 7.30-8), wander downstairs, watch tv for a couple of hours, go for a walk and/or shop, browse rubbish on my PC, watch Countdown etc. I crochet a lot of blanket squares for Woolly Hugs. It sounds very dull but for me, this is all very soothing. I actually have time to stop and enjoy the little things - watching the squirrel in the garden, the birds on the feeder, the weather etc.

Do you like your own company?

Keepcalm that’s not very bloody urgent is it! Definitely call the oncologist.

Thank you TQ that is so helpful. I thinj I enjoy my own company. I guess I spend maybe half of my evenings on my own (well with the animals) though always reading/Netflix/MN, not much time for introspection.

So I think it’s more the loss of routine that scares me. And maybe the loss of identity. I’m not a mum, and if I’m not a lawyer any more then I’m not sure what I say if people ask what I do. I can’t mumble something about being at home with the family. No one wants to hear that you sit at home with your cancer. But then how often do people really ask what you do.

I don’t know. It’s so hard!

Learning to crochet is very attractive. As is finally finishing a few of my cross stitch projects.

I was worried about the loss of identity too. I've worked for the 2 largest tech companies in the world and I've been proud to do so. But my time is limited so I'm not going to spend it working.

purple sorry you are back in a&e again, I hope the I/v antibiotics work quickly.

Great news re your trial TQ

pandora it is good that you have a surgery date (& also that you have the full attention if the team and that they are well prepared) Hopefully they are erring on the side of caution, but can totally understand why you are nervous.

knicker yes it was me wondering about my drain. It is staying put until I drain less than 50ml in 24hrs is the current plan. It started at 300ml and the last 2 days have been 200ml, so it could be with me for 3 weeks! I checked about the stringy stuff and it is just congealed blood. The nurse did say it was one of the more impressive ones she had seen though!

Re chemo, I did EC and then docetaxel. I was nauseous for the full 6weeks of EC (my first lot was more immediate with the side effects too) docetaxel I did 4 X 3 weekly rounds. The first & last I was the worst with, but the 2nd & 3rd I was much more normal throughout. Apart from my very first one, the worst of the side effects usually started on day 4 for me for a few days. I would take the meds of you feel nauseous as it can be very debilitating. Good luck though & I hope you stay fairly side effect free.

leslie that is tiring when visitors stay that bit too long. I have had to be blunt when on chemo and just say I was flagging and needed a lie down. I hope you've had a good catch up.

namechange that is a nice dilemma. I am part time (but with small kids) and currently signed off work. I have kept myself busy decorating and dog walks mainly but have managed to see a few friends a fair bit. I have a really good cancer centre attached to the main hospital by me which has lots of stuff on, that if I had more time I would go to. Also, I am intending to join a gym too in the new year. It was on my list of things to do after moving (I moved in May) but I found my lump, so it got put on the back burner...
If. You are unsure about totally stopping, doing contract work sounds like a good middle ground to start at. You will probably naturally meet people and then you can decide if you feel you would rather cut your hours further, or increase them.

I hope you had fun at the panto fuzzy

Night everyone

Thanks noodles yes mine is EC for 3 and then Docetaxal for 3. I felt rubbish by the time I got home on the first day 😬 I really don't like being dependent on pills so I only took them as prescribed til day 3 and none on the 'As and when' basis as yes, they do cause problems! I can't even drink my beloved 🍷 as it tastes funny. Worst diet in the world eh

cross posted there namechange* I see what you mean about routine and that potential lack of identity/sense of self. I think you would slip into a natural routine (having a dog makes that happen fairly well as you can head to the park at similar times each day etc.) if you are unsure, I would be tempted to cut back your hours and decide from there. That is probably what I would do.