Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I feel like I'm on a rollercoaster and I can't get off! So many appointments and phone calls and letters coming in. I'm going to see someone about a wig this afternoon, which is possibly a bit premature but I need to see what I might look like with one, and then I can tick that off my never ending list of things to do/be done.

I'm a bit of a prepper in that respect, trying to get so much stuff sorted before the chemo starts and I possibly don't need to but I'm finding it difficult to settle unless I do.

No one has mentioned to me about the flu jab, whether or when I should have it - do you have any advice? Chemo starts in 10 days so presumably it's best to have it beforehand?

@tothelefttotheleft - thank you, I've been told grade three but not yet been given a stage and will start with chemo. Did the cold capping help at all?

I'm feeling very frustrated and concerned today.

Was diagnosed six weeks ago and still undergoing testing.

I have an MRI led biopsy on the other breast tomorrow and still waiting for results to come back from my oncotype test.

My next appointment with my consultant is on the 4th October when hopefully all my results will be in.

Has anyone else had such a lag between original diagnosis and treatment beginning?

I feel that everyone else's treatment began quite soon after diagnosis 😞

@drivinmecrazy
I've just checked... I had my first hospital visit where they basically told me it was cancer 6 weeks ago today.
I had the standalone sentinel node biopsy operation 2 days ago - and I don't think this counts as treatment as it's still just part of information gathering. So if that is right then yes similar timeline. I've had no active treatment yet.
I also have felt very stressed when I have been worrying that I needed to do something to hurry things along. What has helped me is knowing that things are going on behind the scenes (one time when I thought nothing was happening, they turned out to be discussing my case in a multiple-disciplinary meeting), and that they do know what they are doing.
I'm sure others with more experience will be along to answer your questions, but I reckon that for you it is just taking a while for them to gather all the information they need to give you the right treatment, and that it is best for them to know everything before they start.
Someone else on here told me that once treatment starts, things move quickly, and that helped me too.

Also @drivinmecrazy just want to send you lots of solidarity. I don't really know anything about this - am feeling my way like you are, and (as you can tell from my username) very far from knowing how to handle it.
Some days waiting for results just feels completely awful. I do think it's worse when you're worrying that something should be happening more quickly, and easier when you think you're in good hands. And I don't know how long things should be taking, but your timeline does make sense to me. It was also suggested that I could have an MRI guided biopsy (to biopsy some other things that the surgeon could see on my mammogram that the ultrasound could not), and this would have taken a bit longer to arrange. (The only reason we didn't do that is because even just with the already-biopsied tumours it would have been tricky to do a lumpectomy rather than mastectomy). So I think that the timings for your tests sound sensible, and good to have all these tests so you/they can make the best decisions.

breastcancerpanic it's so frustrating isn't it!
I feel as if I'm in a race and am being held at the start line whilst everyone has already sped off.

It does help to know that I'm not the only one.

Getting a little fed up of people wanting updates constantly !

@drivinmecrazy just looked back at my dates. It was about 12 weeks from diagnosis until my mastectomy (which was my first treatment). The MRI I had showed a couple of areas of concern else where (lymph nodes and right breast) which then had to be biopsied, so more waiting. I remember it felt like it was taking forever! My chemotherapy (which was only decided on when the pathology from my op came back) started 8 weeks post op. I’m about to have my 5th infusion.
The waiting is so hard, but, in my case, once they decided on a treatment plan everything moved quite quickly.

I don't know whether to be alarmed or reassured that it's moved so quickly for me - although it is good not to be waiting endlessly, obviously and I'm sorry for those of you that are. From when it showed on the CT scan (which was done for something else) to the date I've been given for my first treatment will be 6.5 weeks which includes a 10 day wait for the initial appointment and another 2 weeks for the biopsy results to come through.

This last 10 days since they confirmed it was cancer has been a blur of appointments, paperwork and information.

got my wig today! Feel 100x better as I picked a wig which basically looks like my own hair when I’ve made an effort and straightened it so it’s like me but improved!

I’ve been clinging on to a small amount of hair having lost 80% of it despite cold capping but I’m just going to buzz it off tonight I think as I’m fedup of miserably brushing out another hairbrush full.

im having to wear hats to bed though as it feels freezing!

I also have a wig! And it's also like my hair at its very, very best. Makes me feel better knowing I have it ready.

Me too with the wig purchase. Very like my style but on a good day too! A (very small) part of me wonders if I'll get so used to it not frizzing in the rain or needing my roots doing I might not want to give it up. I didn't cold cap and I'm 2 weeks out from first EC and frankly every time I touch my hair there is a small avalanche. I am even giving our hairy dog a run for his money with who can loose the most! 🤨
To all those worrying about time scales and tests mine was many weeks waiting and many tests. Horrible. But looking back I'd much rather they do them upfront than lob a curved ball in once you get going with treatment or recovering from an operation. And they are working in the background even if you don't hear from them every week.

Great news on the wigs, really heartened to hear such positivity about them. I was joking that I’ll be joining the ranks of the Cheshire Housewives with my partially revamped bust, tattooed brows and wig. Cannot wait until all this is behind us all.

My first op was two weeks after my diagnosis altho it took a couple of weeks to get my biopsy info back. As you know, I’ve had op three last Friday, which was 11 weeks after my first op. It has delayed ongoing treatment but I guess they can only act on the info they have in hand. waiting on the histology from my op in a couple of weeks to determine next steps. It’s all a waiting game.

Waiting Is awful. I found the lump on the 18th May, breast centre appointment and “we are looking at cancer” conversation 5th June, formal diagnosis and treatment plan 30th June, oncology appointment 15th July start chemo 30th July. Lots of tests, scans, biopsies in between. Now 3 cycles through TCHP. 3 more to go then surgery - MacMillan nurse said “before Christmas” - I’m holding her to that!

Scanxiety is a real thing. Go easy on yourselves.

I went from initial go appointment to treatment within 10 days. Which has been a whirlwind and an absolute shocker. But this is down to my work providing me with fab medical insurance so I know I’m in a very lucky position.

I know that here (jersey) it’s an 8-10 week wait for a gp referral to a consultant without having private insurance. Which is shit. after having my ct scan the radiologist said that I’d have the results within 3 weeks. Then realised I was a private patient. And I had the results back within the hour. Which is again amazing. But I can’t imagine waiting those three weeks.

I have an apt with a wig lady today. Hoorah.

second round of chemo done and I’ve had my immune booster jab yesterday. I’m day 3 now. Day one being chemo. Feeling tired and achey today. But that’s expected. Doing as little as poss.

dm is coming over this morning to help around the house. Because she’s a legend.

DH has done everything for me and the kids the last couple of days. I honestly don’t know how I’d have got this far without him and my wider family. They’ve been so amazing.

I had a wig appointment yesterday, and it wasn't quite as traumatic as I thought, but it's still a very odd experience. There are three possibles on order in my preferred colour and I'll go back for the final choice and fitting.

I now also have the worry of having had a gynae referral following a smear test - the result was clear but there is a growth that the doctor isn't happy about - ffs, what have I done to deserve all this? The doctor did say that if I hadn't had the cancer diagnosis he would probably watch and wait but since I have he wants anything that's not 100% perfect to be investigated, which is mildly reassuring but not great for my peace of mind. Having said that the appointment has come through for next week which makes 3 visits to the hospital in one week 😔.

Today I was waiting for my x Ray Post PICC line insertion - in the waiting room (NHS hospital) the radio was on. Jeremy Vine - the topic - is the NHS broken? Highlights “cancer is a death sentence on the NHS” FFS 😩

Oh bloody hell @Littlecaf I hope all is sorted linewise and you’re comfortable.

in a similar moment this week, post mastectomy I’m resting and dh put the tv on, thinking it was “saving lives at sea”. Nope, it was a saving lives in hospital programme and on screen was a woman about to be given a double mastectomy. To make it worse we have a new remote control and DH is a fumbler. I couldn’t get off the sofa unaided so had to stick my fingers in my ears until he had sorted it.

@Littlecaf and@dancingwhilstfacingthemusic

Coming in with another ‘mistiming’ tale.

Quite a long wait for first radiotherapy treatment. Pretty anxious, talking myself down. I can do this. Pulled out my new book of short stories. Started the first one. Quickly realised it was a cancer story. A breast cancer story. A story about terminal breast cancer and death planning

I was clearly feeling more resilient than I would have anticipated. Decided to 🤣 rather than 😢

Hear you Dancing about fumbling with the remote. Just switch it off!

These stories of cancer creeping into books and tv… my partner picked what he thought was a light hearted kids film to watch while I was recovering from masectomy. Film starts with montage of mother and child playing together with a nostalgic tone. I straight away I said “she better not have bloody cancer” next scene mum is sad and bald and I was just “no thank you turn this shit off” 😂. Partner was mortified and we could both see funny side but it is everywhere sometimes. My bloody crumpets came in pink packaging today because it’s breast cancer awareness month. Definitely don’t need more awareness in my house!

So bit the bullet today and went and got my head shaved. It was just too distressing watching clumps fall out. Feel like I've taken back some control. 5 of us in the salon were all in tears, but we did manage to laugh about it as well. Wig actually looks fine, very close to my normal style and colour. Taking some getting used to tho when I catch myself in the mirror so wearing a bandana in the house. Altho being in Scotland think the woolly hats will be out soon cos it's COLD!! Other major issue I have this week is sore throat and mouth ulcers so I'm struggling to eat properly, gonna phone the helpline to see what they can suggest over and above paracetamol. Does anyone have any other tips that help? And yes bloody cancer ALL over the tv etc, seems like every program has someone with cancer!

@Lainybird sending warm vibes - and well done! Such a tough decision.

@aodirjjd @GrannyGoggles @dancingwhilstfacingthemusic weve also managed to get away for a night without the kids - posh hotel etc - bloody Sue Ryder shop opposite the hotel. I’m taking it as a reflection that it’s part of society and something we have to get on with. Humph!

@frostyfingers

I kept my hair.

@Lainybird Well done,💕, sorry about hair. Yes to woolly hats, extraordinary how cold you feel.

I had such a sore mouth and throat. Prescribed mouthwash, took paracetamol both of which helped a bit. Quickly got used to eating just enough to stop feeling hungry and not a mouthful more. Greek yogurt was my friend. And, yes, I know that some advise no live yogurt.

@aodirjjd yep, laugh at the crappy films and pink crumpets

If my mother tells me one more time how well Amy is coping back on Strictly I’ll bloody scream!!

Oh lord yes. Cancer is everywhere. Seemingly everywhere I look there’s another reminder!

I had a wig apt yesterday. Chose 3. Will see how we get on with them.

today I have an online meeting with clinical genetics at guys and st Thomas hospital. Because I’m still classed as young for breast cancer. (39 for a few more days. My 40th is Wednesday….)

Yes, totally, cancer keeps coming up! I find it jarring because I haven't in my mind drawn together the sort of cancer people have in books/films etc (horrifying tragic death sentence... other people stuff) and the cancer that is happening to me (series of medical appointments etc, surgeries, treatments, followed by (please please please God) good odds for a long life). I'm only just getting used to describing what I have as 'cancer' at all. It's a horrible word...

Today in fact dd is supposed to take in cakes to school for a Macmillan bake sale (I bought some - thank you Aldi). Fine... but had such a weird moment realising that I'm now a recipient of the charity - just too weird.