CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

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've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

KeepCalm you’ll need to ask your team about what jabs you should have and when.

I can never have a live vaccine again, but have been advised it would be good for me to have all the safe (ie dead) ones available. I have incurable but treatable leukaemia, and am in good nick and functionally ‘normal’ (subject to one more hurdle) at the moment. But the drug I am on is potentially hostile, and any illness could rapidly spiral into extremely serious. The level of precaution for me - who will be like this for life - may well not be the same for those with other regimes and timelines.

My cohabitants qualify for NHS flu jabs to protect me, but not the others. The reason I started asking about the other hand was because a teen DC was called for routine meningitis jab, and I thought to ask my specialist nurse about more jabs for me. I am hoping to stay stable on treatment for years to come, but the bottom line for me is that my immune response can never be totally relied on.

I knew they meant it when they gave me a card to carry with a list of symptoms (some quite minor) which I have to ring in about immediately, with 24/7 contact numbers

Hey all. Today is 4/6 of chemo. I'm just starting the new drugs. My mind is awful I just cannot retain any information. I've done 3 rounds of fec. Herceptin and perjecta and docetaxol according to my book so I've got two very long days at the chemo unit this week.

I need to pull my finger out and get things done as ive still got to send my pip form off( it's beyond the date on the front so will they accept it? It was filled in by a professional and then I misplaced it and then I found it) also need to claim back the money for the travelling to and from hospital appointments.

Hello everyone,

I'm just delurking! I've been reading all your posts and sorry about everything you're all going through. I was posting here back in July 2017 when I was diagnosed with metaplastic breast cancer (aged 38). I had a WLE for a 2cm tumour, no node involvement, but because it was grade 3 triple negative (and metaplastic) I then had 6 rounds of chemo (FEC-T) and then 23 rads. Finished in February this year.

I have pain in my ribs that won't go away, so I went to my GP, and now am having a PET scan on Monday. I've become very negative about everything during the wait. I'm just so tired! I work full time and there's so much to do, my kids (5 and 7) are on half term and the childcare takes a lot of organising, my friend gets married tomorrow and I kind of don't want to go because my short just growing back hair makes me look a bit 'butch' and nothing fits me anymore.

Sorry that was all just a massive moan, I just wanted to ask really if I could hang out here until Monday, or whenever I get the results. I hope you guys are all doing ok today xxx

Oh yes definitely hang out here lovely. I bet your hair actually looks bloody brilliant but it is no fun at all having decisions about your appearance made for you by stupid cancer.

Is it too late to get something gorgeous to wear for the wedding so you feel better?

Hi @Overeggedit, yes like @Namechangeforthiscancershit says would anything else to wear make you feel better?
I've got a random hairdo at the moment as I went really short, cold capped and have a lot of hair sides and back but very thin on top and in one strip in particular! I've been wearing some bandana like hair bands. Anthropologie make some fantastic ones that would good on really short hair, would one of those make you feel better? Or fantastic, shoes, bag any other accessory?

Or get the kids to paint your nails? At least you’ll laugh when you see your hands!

It is really tricky being at a happy celebratory occasion when the weight of all of this is on your mind. Will you have supportive people around?

I'm having really weird psychological feelings since I found out that the cancer hadn't spread (or unlikely to have anyway).

I feel 100% fine in myself, I'm still going into work, I don't notice the lump at all, so I keep thinking that I'm just a fraud and I haven't really got cancer and it's just some big mistake, and maybe I should just pull out of all the treatment because I'm a fake and it's not real???

Obviously my rational brain tells my irrational brain to shut the fuck up, because obviously I very definitely have got cancer and now is the time to do something about it.

Has anyone else felt like this?

Hi @astuz I can't talk for anyone else but I know the first two weeks were hard then after diagnosis and getting a plan together it's been easier.

Sometimes it's great as you forget about the cancer and life is normal, well what I've named the new normal. I've had a good half term with the kids and am not thinking about chemo next week (well only a little bit)!

I still go into work when I can - I'm self employed so can pick and chose.

Just remember though to get some rest when you can physically and mentally. Because I look really well and I'm still doing everything I did before (apart from the gym) people forget you may need some downtime. I've learn to start giving myself that time. Us lot on here have taken up lots of craft to pass some of that time away and it's quite therapeutic - needle felting is my new favourite!

I don’t think any emotional reaction is unexpected! I felt very detached in the first few weeks. I have times of feeling so positive and have so much energy to do everything the doctors want and keep going with everything and then a minute later I feel utterly hopeless.

I find I just don’t know what is coming next with my emotions at any time- and all complicated by needing to reassure everyone around me that everything is SO FINE (ha!).

Relief can be really difficult to process as well as less good news, so I think it’s totally understandable how you’re feeling. You still have stressful times to get though, but you’re aware it could be a lot worse (it always can!), you would expect I think to feel a big old mixture of guilt, relief, numbness, worry, and general mental exhaustion.

Medics in my family have said that it’s quite usual to find outlandish ways in which this is all a mistake. I’m not sure I have felt that exactly but apparently it’s a really common conversation.

So I’m not sure I have helped, and in fact all that waffle could be said as when it comes to emotions and cancer, expect the unexpected. But be kind to yourself. You’re on the proverbial rollercoaster (and to think I used to LOVE rollercoasters!)

HI All, hope you are all managing ok. Weather has turned cold and today I had my nest fitted to the boiler while it was being serviced. Laughing at myself being so happy to be able to switch the heating on and up from my phone.
My wife had a hospital appointment today about her eyes (we are a right pair of crocks). It’s official now, no treatment available to halt the progression of macular degeneration in one eye and not a clue if it will spread to the other.
The silver lining is that it’s stopped us phone and post watching for my biopsy results. Still no news there, but that might be a positive.
I’ve stopped trying to eat the foods that get stuck and am just focusing on eating lots of soft meals with sauces. I love casserole and now it’s chilly enough to not look weird eating it.
Does anyone know roughly how long it takes to hear back on biopsy results?

Hi astuz. Yes, definitely.

I had breast cancer. It was only right after my lumpectomy and now during my radiotherapy that it all feels real and the fuss "justified".

Up until rads starting I had moments of thinking it was a mistake. It's all rather surreal isn't it?

astuz I presume they scanned your lymph nodes when checking your lump? I was told that mine looked the same both sides, so unlikely to be affected and so it was.

Ladies with breast cancer if you had chemo first when did they start talking to you about surgery? I'm about to undergo round 4 of 6 next week and feel as if I want to know about my options. I know they want my lump to go as small as possible but I've a feeling it won't! I want to be able to do my research, speak to others before I decide about surgery. I think I may see if my cancer nurse is available on Tuesday before chemo. I'm a planner, that's how I cope!

Hi Ranout, I saw my surgeon between chemo 5 and 6 and the date for surgery was booked then. My last chemo was 22 Aug 17 and surgery around a month/5 weeks later. My lump reduced in size but didn’t disappear completely, however the biopsy showed no evidence of disease in the remaining lump or surrounding tissue, so try not to worry too much if possible.

Hi Ranout

I’m having 7 rounds of chemo but I know I’m having a mastectomy anyway. I was told that at the start so I’m ok with that really. No decisions for me to make. Although I think I will be put on the list for delayed reconstruction so when the time comes I will want to know what’s involved in that but it’s going to be so far in the future not much point thinking about it now.

My lump hasn’t reduced either but I was told that this is not uncommon and sometimes the lump can still be there but it’s all just “dead” tissue.

Do you have a breast care nurse? I’ve found They are very good on the treatment process and what happens when.

Morning lacies, just had round 2 of chemo. Still using the cold cap although I’ve had lots of hair loss now so feeling quite down. Looks like my surgery will be after radiotherapy so last in the treatment sequence- this is so I can have an immediate reconstruction without risk of the radiotherapy damaging the new breast. I have a large tumour but good news is it does seem to be responding to chemo and shrinking down.

Can I join you? I'm just waiting for a biopsy on my endometrial lining as I've been bleeding since August. Hysteroscopy showed an enlarged uterus and thickened lining.

minniemountain I'm finding it all very surreal. I was on half-term when I got the diagnosis last week (which seems about a year ago) and was in a complete state mentally, so it didn't feel surreal then, but I went back to work on Tuesday and after half an hour of blubbing on my boss in his office, it was back to work as normal.

It's the boring, normality of work that makes it so surreal. On the other hand, even though I hate my job (school is in special measures, kids are a nightmare, buildings falling down), I'm glad I've gone in because it has taken my mind off it.

They did an ultrasound of my lymph nodes, said it was "borderline" so decided to remove some cells with a needle biopsy, and I'm awaiting those results. I think it will be OK, but there's still that uncertainty.

astuz - I was also borderline with lymph nodes as mine didn’t feel inflamed. One was biopsied and with me it did unfortunately come back positive. Sounds like your lump is a lot smaller though so less likely to have spread. So now I know I have at least one lymph node affected but I won’t know the full picture until surgery which is ages away so a bit annoying.

That's interesting that they did a needle biopsy of your lymph nodes astuz. I was told the only way they could biopsy was by removing a node during my lumpectomy.

minnie the doctor who biopsied my breast said that one of my glands were up and whereas there can be a million reasons he was going to needle biopsy it. It hurt! And came back positive .

Hi Always 😊 have they given you a date for your biopsy? Honestly the waiting around for tests and results really is the hardest part

ranout I met my surgeon yesterday and my op was booked in (11th Dec, was set to be 27th Nov, but it is my daughters 8th birthday on 30th, so I successfully postponed the op so I can do something special for her without a drain hanging out of my arm!)

I am between 6/7 of my chemo's. My last chemo is next Thursday all being well. I think I have had a mild infection as have had conjunctivitis and have a sore throat, so it could be delayed I guess. Bloods will be done Monday so watch this space...

My surgery will be breast conserving surgery, apparently it has the same success rate as a mastectomy for recurrence on my size of tumour as long as I do radiotherapy afterwards. The BCN said that is why they had thrown the kitchen sink at me treatment wise, even the fortnightly accelerated EC that I started on was not a treatment option last year.
I am not to lift (actually the list of stuff I cannot do is massive as am having my lymph nodes all out from one side) or drive for at least 2 weeks. The surgery has to be at least 3 weeks after the last chemo and radiotherapy is a minimum of 6 weeks after surgery (it depends on recovery)
In 6 months approx they will also do lipo to fill my boob with fat they remove from elsewhere. I think I may get rid of the wobbly bit over my C section scar which persistently hangs about! The silver lining to the big dark cloud of all this treatment I guess. My friend came with me to the appt & offered some of her wobbly bits, but the surgeon said he can only do lipo if you have cancer first and everyone was in consensus that it wasn't worth it! I feel a lot less nervous now, I will be a day patient with potentially a lot of hanging around as they need to put wires in under US to guide towards my markers first.

I hope everyone has a good day, I have been running around between half term activities and appointments and have had an old friend staying too. Now I know when my op is, I am going to book a Christmas panto & try to plan in a few fun things for the kids.

noodles ask where you are on the list at your pre-surgery check.

They did my marker wire in the breast clinic before it got going for the day, so your wait might not be too bad.

@purpleunicorns I had it done on Tuesday. Before I went in she suggested that I should stop taking my medication to have a break and that I'd get my results at GP. Once the camera was in she said I'd get an appointment with her for my smear and results and said I needed to continue taking medication until then. I think she said around 4 weeks.

I'm so sorry for everything you're all going through 😣