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!

We are quite fortunate in that there’s only me and my husband in the house so I’m not disturbing people with my nocturnal wanderings. Spare room husband sleeps in has a very comfortable king size bed so I don’t have to feel too guilty about the fact he’s banished there for the foreseeable future.

I haven’t been offered anything by district nurses but can’t really think of anything that would help right now in terms of aid type things.

Stationaryace - glad you are on track to get everyone’s flu jab done. I’ve asked my husband to have one this year but I have a feeling he won’t get round to it and I don’t have the energy to remind him. He gets invited for one every year because he’s a coeliac but never goes.

Total wobble yesterday on day 3. Joint pain, tired and flood of hormones alongside generally berating myself as there are folks a lot worse off.

That part is exhausting isn't it 

One of my best friends has been on holiday since all this kicked off. Finally announced coming to visit last night then changes mind as 'too tired from laundry'

I'm trying to be gracious and not reply with a big 'fuck you'. He is the most self absorbed person I've ever met and I no longer have the energy to ignore it.

Conversation with potential biological mother went reasonably well without her actually admitting it was her. This lady is going k contact genetics clinic to give date of birth to help with family medical history and it also allows her to ask if she or any of her blood relatives are at higher risk.

All aboard to roller coaster here.....

Haven't had a chance to catch up sorry and am at a meeting 10-4 so will try again tonight 

@WhatWouldLeslieKnopeDo I forgot about my crochet knickers, could have attempted a basque as well!

My husband ops to sleep on the sofa chemo week until I'm not rattling around as much! Start Docetaxel and the injections next week so we'll see how that goes.

To those that have mentioned the injections are you self injecting? I know in the grand scheme of things there aren't that many to do but I'm not sure if I can inject myself!

And whoever said peach juice, thank you!!!

Stationary stuff can wait, if you need to rest then rest while you can. You've just reminded me I have a bottle of baileys in the cupboard somewhere 😁 It's close enough to Christmas to crack it open I reckon, it may even help me actually sleep tonight. I've been awake most of the night thanks to the steroids

Keepcalm I'm glad it went well with your biological mother, I'm not surprised you're having a wobble with having to deal with her, your treatment and your self absorbed friend. I hope you're feeling a bit better today 💐

KeepCalm I take full credit for the peach juice . Sorry you're having a bad week. I too have a very self-absorbed friend and I've run out of graciousness with her. I do not want her coming round when she's only doing it to make herself feel better.

Ranout I couldn't do the self-injections. It wasn't a problem though. The District Nurses were so helpful and understanding. They came round on Sundays and for the other days I went to my local surgery, which fortunately is just over the road. I thought they might be a bit pee'd off with me about it but they weren't at all.

keep calm

Can't believe your friend couldn't come round because of his laundry. Some people just have no clue do they?

I was berating myself about lots of stuff but being on this forum has actually helped me a lot in accepting where I am with the cancer and although I still do it a bit I've stopped beating myself up quite so much. You are doing amazingly well to be able to go out to a meeting so soon after chemo.

Ranout - I think the general expectation from the chemo nurses in my hospital is that patients do the injections themselves but I was insistent that I at least wanted a District Nurse to come out the first few times to over see and check I was doing them right. In the end I just had a major wobble about the whole thing and said I don't want to do these myself and since then I've had the District Nurses come out for the 7 days I have the injections. As it's turned out they don't mind and one of them in particular is very nice and always has a bit of a chat too. I live in a fairly small town and quite a few of the nurses seem to live over my side of town so for them it's on their way home. I have the injection between 4-5pm so they just pop in, ask how I am, do the injection and go again. I think it's quite a nice appointment for them at the end of their day as it's quick and I generally try to appear reasonably cheery when they come in. I just feel that I have so much other shit to put up with going through this that if I need help with this aspect of the treatment I am going to insist I get it. I've got my last one of this cycle today. I guess the thing is because I did initially do them myself a few times, I know I could do them if I had to (bad weather etc.). They aren't actually that difficult in one sense and the needles are an enclosed unit so very safe but I think you at least need someone to show you the right technique if you have never done them before. You also have to remember to alternate sides so take a note of which side you have done each day. A friend of a friend who has breast cancer said she did them herself as she didn't want to be tied to being in the house but for me I have felt pretty rough for the first week after chemo anyway so don't go on any long trips and don't work so doesn't make much difference to me making sure I'm back in the house for 4pm.

Just a heads up for those about to have Docetaxel (with the caveat that we don't all get the same side effects), I think it has stripped my nose hair so I now have a more or less constantly dripping nose and the odd bit of blood (not a proper nosebleed). I called my hotline and they said it's normal as when you blow your nose if there's no hair there then any minor trauma in your nose will mean blood will come out. Just letting you know in case so you can have some boxes of tissues in stock!

Hello. I hope you don't mind me posting on here. I'm not getting much luck anywhere else and to be honest I don't really understand what is going on - whether I am being referred because the GP suspects cancer or what.

On Monday I had a routine smear test. While the nurse was ‘looking’ she noticed a rash on my vulva. She seemed concerned and said she wanted to get a female doctor to come in and have a look. While we were waiting I asked her what kind of rash and she said she had never seen anything like it blush.

The doctor came in and had a look and said to the nurse maybe it’s cysts. She asked me some questions and squeezed the area. There is no pain at all. I have felt these lumps but I am rather lumpy down there anyway ( I have had abscesses in pregnancy and during my period since I was a teenager - I just put it down to a surge in hormones). I can feel these lumps and they feel very fleshy and quite big but I believe I have had them for years - although maybe not as big - I just can’t remember of be sure. They are on the left side of my vulva and the flesh almost feels loose. I've had no pain, no discharge from the lumps or vaginally and no suspicious bleeding.

The doctor finished by saying that she was sending me to the gynecologist so that they can have a look.

Anyway as you can imagine I have massively built this up in my head and now I’m terrified I’ve got cancer. I’m trying to be rational and say to myself that they are only cysts and harmless but in reality I feel sick with worry and stressed that I can’t fine a rational explanation for them. I’m 38 and have got two young children.

Today I have received a text message from the surgery to say that my referral letter is ready to collect (I then have to make my own appointment online). Is this what is classed as an urgent referral? I'm so scared and just can't think straight. Can anyone offer any words of wisdom or advice?

In my experience, the 2 week wait (that’s the cancer referral system) doesn’t let you choose and book- you get the appointment you get and you have to turn up!

Can you get hold of anyone at the surgery on the phone to reassure you a big?

In my experience, the 2 week wait (that’s the cancer referral system) doesn’t let you choose and book- you get the appointment you get and you have to turn up!

Thank you, that is reassuring. The doctor just said to me "would it be ok if I refer you to see a gynecologist". Of course I said yes but am just shocked at how quickly the referral letter has come to the surgery.

User

I wouldn't read anything into that being so quick. Last month my Dr said she wanted me to have a bone density scan, to do with a family history of early osteoporosis, and she wrote the letter right there and then, on her computer. I then received the hospital app about 5 days later. I think because things are all computerised today, things don't take too long.

@Mrstraveller thanks for the info on the injections. The chemo nurses have said that the district nurse could come out. We're a strange bunch aren't we are we all seem to not want to bother anyone but we all need some help. I think I'll see when they can see me as i think I will only need one or two and like you said it's the week after chemo so I'm usually at home anyway.
Just got back from a trip to Harewood House today. Making the most of having some energy!
Hope everyone is having a nice day it's been sunny here

I think we are all competent women who are used to being independent and managing stuff ourselves. But in this situation I think it’s ok to ask for help!

Apologies for the intrusion, but, in case it is useful, reference the heated car seats mentioned a couple of days ago these type of heat pads can be useful for easing pain.

Also purple, it might be worth giving someone like Macmillan or even CAB a call about your employment situation to make sure resigning is the best thing to do/ finding out what benefits you may be entitled to. You might have already thought of this or got a plan in mind.

Sending all the lovely Lacies my very best wishes and special hello to Leslie

Hi 1234hello :) I have a heat pad like that and it's great.

ranout I am on blood thinning injections so I do those myself. The nurse in hospital showed me how to do it. It's quite easy really!

KeepCalm for you. I hope things work out as well as possible with your biological mother. And I hope the meeting wasn't too boring.

stationary I don't have any inflatables, but I have plenty of my own padding I did buy a new pillow recently. It's U shaped and about my body length so it makes a perfect nest for days when I feel like hibernating!

Userplus how worrying for you I wouldn't read much into the speed of the referral. The "choose and book" ones are usually very quick. Hopefully it'll be something harmless.

purple enjoy your Baileys.

I saw my oncologist today - all set for chemo tomorrow. He's recommended I get the pneumonia jab. That might be worth asking about for any of you with lung mets.

Ooh a U shaped pillow is a great idea. I’m so achy this time, which I wasn’t with last year’s chemo. It’s a bit of a fluey ache but also sort of sharp shooting pains in my neck, back and ribs. They don’t last long but they are sore. Hope it’s not a sign of something even more dire.

I am so hopeless I don’t even know if I had pneumonia jab in with the flu jab. Or is it totally separate?

I had a pneumonia jab at the start of this month. It’s normally for the over 60s but it will be given to those of other ages where there is medical need.

As my immune system would be utterly fucked were it not for the cancer drugs, they say ‘yes, good idea’ for every non-live vaccine for me. So as well as over 60s jabs, I’ve also reclaimed my youth and has a teenage meningitis jab

The pneumonia one is fine to have, btw, bit of a sore arm but not bad and not for long

And yes, pneumonia is a separate jab (I had it at same time as flu jab, and it was a second shot)

Hi Name Changed

I have shooting pains in my lower back too. I’m hoping it’s just the chemo and lack of exercise/ mobility. I’ve only left the house once since last Wednesday and that was to go to the GP (well apart from taking rubbish out!). I really should push myself to go for a walk tomorrow.

I've completed my radiotherapy now (rang the bell and everything!), and saw my lovely oncologist this afternoon...who has just announced that she is retiring and I won't see her any more ! I'm sure (well, I hope) that somebody great will take over her capable instructions, but MAN THAT SUCKS- I loved her!

She did say that I was an amazingly brave woman though

Ahh congratulations BitofFun on completing your radiotherapy. Your oncologist sounds lovely 😊

I had better news yesterday. I was in to find out the results of an MRI scan and find out what the plan of action would be. The cancer is only in the little lump that I found and there's none anywhere else in the breast so I'm provisionally booked in for a lumpectomy, followed by radiotherapy, and I won't need chemotherapy or anything.

The only other worry on my mind is the biopsy from the lymph nodes, but I'm thinking that if they can only find cancer in this tiny lump, it's unlikely it will have spread to my lymph nodes yet.

I'm so glad I showed the lump to my DH straight away and he told me to get it checked out, which I did straight away - it honestly looks like nothing, a tiny white spot on my nipple, so easy to ignore.

@Namechangeforthiscancershit I've been rocking the shooting pains/achey joints too. Mainly back/hips/knees and feet. It's not constant if that makes sense but it is sore when it's happening!

The stomach cramps and having to rush to the bathroom was something new yesterday. Can't really complain when my meeting/conference yesterday was all day in a 5* hotel which provided a lovely lunch and they had very nice loos 😳

@BitOfFun Huzzah for end of radiotherapy! I'm considering starting a petition for us all to get stickers when we're being brave. Like when kids go to the dentist. I think we'd all be covered 

Friend arrived last night so that was fine. I can't be arsed with wasting energy being annoyed. He doesn't know the full extent of this shite situation so I just smiled and absorbed ALL the platitudes about how this will be a walk in the park and if I need anything just to shout expect he's not free this date/that date/this date/that date etc DH and I just laughed.

It really is sometimes about making themselves feel better isn't it?!?

Also finally got the phone call from the estranged 'aunts'. My Mum (who's been away for >10yrs now) was the eldest of 4girls. All very close and we all grew up together. An argument approx 8yrs ago (very rare as we were all very close honestly) damaged the relationship and they've been estranged ever since. Well the weeping & wailing last night I could have done without.

I was kind, polite, courteous and consoling but I will never let these people break my heart again. So when the appointed aunt (al three were in same place but one was elected to make the call) told me I wouldn't have to do this alone, I very politely told her I knew that and that I was very lucky to have my wonderful DH and excellent support all round me since the diagnosis........

My mother brought me up well or I'd have been putting the sodding phone down.

Family politics are exhausting aren't they?!?

Flu jab booked for same time as pre chemo bloods and smear test. Irony of that hasn't escaped me!

@astuz yay for a plan and a tiny lump!! That is excellent news indeed!

@iVampire am only booked in for flu jab. Should I be lining up for more?!