Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@mowly77 you’re right. It’s a dose of horrible reality after being in my own little cocoon since finishing chemo, and now I have to face up to more treatment when I just want to not have cancer, and not have to go to hospitals and not have to live with this horrendous underlying anxiety that’s just constantly bubbling away under the surface. God it’s so shit. And I feel awful saying that considering I got relatively ‘good’ news, I’m the grand scheme of things. The positivity thing does my head in. The amount of times people have said it to me…one said ‘Well TwoBigNoisyBoys, if anyone can get beat this, you can, you’re the most positive person I know…’ I felt like saying ‘Well bloody hell, if I’d only realised it was the positivity that would treat me, for some reason I thought it would be the 24 weeks of chemo, surgery, radiotherapy and oral chemo…I must have got it wrong!’ (Yes, I know I’m being unreasonable (and horrible)…).

So sorry to hear about your picc line. I dreaded the nurses changing the dressing, it set it off almost every single time. Hope it settles down for you soon xx

Not unreasonable or remotely horrible at all! Christ the amount of inane shit like that people have said to me too. Someone recently said I was a strong & determined woman and I’d get through it. Uh yeah my determination sadly has no bearing on the bastard metastatising cancer cells in my body. The first time around some alternative therapist (free thing on nhs) told me if I thought positive thoughts I could change my DNA (BRCA2 … don’t think so love) and “make it sparkly”. It’s actually funny now, it’s so incredibly stupid. I never went back to that place, oddly enough (although the acupuncturist was quite good, he did acupuncture on horses).

@TwoBigNoisyBoys @mowly77 I too hate the positivity, eat clean, you’re so strong bollocks.
I know teetotal vegans that have cancer and I know chain smoking alcoholics that don’t. There is some purity spiral that occasionally people fall
into after having cancer with being obsessed with no sugar, no soy, no fun and no joy.

it’s nothing more than luck, and don’t give
me the fucking head tilt and tell
me that I look well. I’ve been up since 3am, been on the loo for most of that time and I just want to taste something. I look like I’ve been on a bender to Ibiza for a week and had an accident that involved my hair.

In better news, I am now more than halfway through radiotherapy and no one has died yet.

I feel your pain and irritation with the PICC line @mowly77 . I had my first home visit from the district nurse today (bloody hell, an actual home visit!) to have my P line flushed and dressed. With it being me, it has not ended well and my line is blocked (and unflushable) and she has managed to pull the line out of my arm by nearly two cms! So I'm off to hospital tomorrow to have it looked at but it's been bleeding so I think that it will need redoing. The nurse has redressed my arm but stuck the dressing on awkwardly so my skin is stinging and the dressing is pulling at the skin - luckily I no longer have any hair so that's one mercy because they'd be none left now! Chemo last Friday was so much easier with the line in but the trade off does indeed chaff a bit to put it mildly. Not to mention the doctor's surgery has taken over a week to give my pharmacy a prescription for my waterproof cover for my arm so despite strip washing, I'm probably a bit 'ripe' and I feel grubby.I

@mowly77 words fail me….😳😳😳

Oh Christ @MothralovesGojira that sounds like a painful catalogue of disasters — a bit like a Benny Hill sketch but extremely horrible. Hope it gets sorted tomorrow. As for washing I keep forgetting to call my GP / pharmacy & get my sleeve thing but the chemo nurses told me to use cling film anyway and that it was better. It actually is & especially if you get someone else to do it for you if possible. Wrap your arm up tightly and thoroughly with a good four or five layers like a leg of ham. Not now obviously as sounds like it would hurt. But you can shower and it stays as dry as is possible. Neck some painkillers? If you can bear it, redo or reposition dressing? But appreciate may irritate your arm more. My eyes are turning to the morphine bottle which I’ve hardly touched recently which is a result, but then again if I keep arm extremely still the pain is receding …

@MrsPnut aghh the head tilt & the dreaded “you look well”!! It keeps happening to me … it makes me rageful. My hair hasn’t fallen out yet because I’ve only had one chemo but after the next one it’s all to play for. I don’t look well anyway even with hair. I look pale as fuck & definitely not right. Good news about halfway through radio though; halfway through anything is always v good.

@MrsPnut The purity spiral comment made me laugh - I remember at my breast clinic appointment saying "but how did this happen? I eat blueberries and salmon and exercise daily and no one in my family has ever had cancer!" while this older medical type person was more or less pushing me out of his office so he could finish his lunch. Now every time I see an article online about how "eating X or Y" can keep breast cancer away or some half-assed study showing daily 15 minutes of meditation can "help possibly reduce cancer" I want to rage. Yeah it... doesn't.

But people don't want to hear how its really, truly luck of the draw. That science, for all its advances, really isnt THAT close to unlocking all the secrets in cancer's box. That if it can happen to the "most positive, strongest person they know" well hell, it could happen to them. So out comes a platitude and they edge away from you lest you infect them with Bad Luck.

Also, is sugar REALLY the worst thing Im putting in my body at this moment? I take pills that require only I handle them and wash hands immediately afterwards, that alter my sense of taste, that make me want to heave. That slice of carrot cake I just had for breakfast is NOT the enemy here.

Im off to scan this morning with standard CT and my favorite - the full spine MRI. LOVE that one, I get music and a little nap. Go for lunch, maybe pop by the V&A and then lymph PT session which will hopefully help sort out whatever weird muscle thing is going on with my right side.

Hello everyone :)
@MrsPnut I have had a LOT of that this week. Told my GP I was struggling to go out and was feeling anxious. He told me not to go down the western 'Freudian' route and look to blame but do meditation. Keep everything within my boundaries and gardens :/ My MacMillan nurse is queen of the head tilt too.....
I get it I do but I wasn't telling him so he could fix it- why do men do that? I just wanted to say..... I feel low. And every time I go to the hospital it gets worse. Another blast of info- we are concerned about your lungs, it's more widespread than we thought, you will need three lots of treatment....
And then my bowel surgeon called yesterday and told me they want me in before I have iodine radiation treatment. But I need prehab and my vocal chord is still frozen. I suppose I am frightened to be intubated again for yet another long operation. On the other hand it gets it all out of the way I suppose....
And my partner is lovely (we have been together 12 years but Don't live together) but he takes everything so personally- why us? It's been years since you have been well. Why do you look so sad?
And in reality I just want to sit on the chair with the pug and watch judge Judy in silence......
sorry for ranting. Love to you all and thank you for all your support....

@Stomacharmeleon You have a pug? then you are never alone - ever. We have two of the barky dickheads. One of them barks when people come in and when they leave and in between he tries to sit on their lap (even if they don't sit down).
The other is quite nervy, everything does her a frighten and she howls when she is anxious.

I have had my stitches out today, it appears the junior surgeon was doing his knots badge for scouts when he put them in. One of them had 23 knots according to the nurse at the GP.

Just when the weather has turned warm and sunny, ideal for sitting in the garden with a G&T, I have to go to radiotherapy. It'll be just my luck that it's raining by the time I get home.

Finally got to speak to oncologist today, was 1.5 hours late as delays there but managed to establish that if you get blood clots with a PICC you can go on tablets rather than injections and they last duration of treatment then I think she said 12 to 18 weeks depending on severity of clot and then you don't get tamoxifen you get something else. She wants me to try and do all 12 unless neuropathy too bad though I asked when would maximum benefit come would it be before 12 and she replied 12 is full course but we can negotiate on that next time. She offered to change regime to EC or dox and let me cold cap as she thought I was cold capping but I am not as she banned it for the weekly. I am just using frozen peas but they have worked but only where they covered. But I am continuing with Pax.

She did not offer a port and said it may not be possible to cannulate more though she said its unusual to be fine for 3 then can't do 4th unless I have especially bad veins which she said was possible esp as had lymph nodes out so they are down to one side. Plan is now to do chemo with cannula for 5th one on Monday, really hoping I don't get grumpy nurse who will be cross I have not done PICC and may inflict pain to ensure I do. Or the new untrained nurses who am lovely but have no clue what they are doing as most of the trained ones left.

Been really depressed with it and the EHCP, council took away the support they had promised and still have not done change of school. DD is home revising for GCSEs. We are getting Mr Floof, on 14 May so hopefully he will cheer things up though he may also jump on a PICC. Last counselling tomorrow.

Love to everyone and sorry its all so difficult. Glad can be honest about it here and not fake positive. I hate the forced positivity.

Barky dickhead number 3 @MrsPnut

@Stomacharmeleon Bless his little barky dickhead face.

@Silkierabbit A port is a major procedure to insert and remove it. A PICC line is a much easier prospect and there is just as much chance of a clot with a port. I also ended up with 6 of my 8 chemos done peripherally by cannula on the same side due to full lymph node clearance.

@MothralovesGojira I hope they can just wiggle your line back into place. I got very fussy about what dressings I could use when I had mine. I could only tolerate an IV3000 dressing with hypafix tape to hold down the line. I also bought my limbo from Amazon because there was no one to prescribe it.

@MrsWoostermy CA125 went up whilst on infusion chemo. I was told that it is due to the chemo breaking down the cancer cells, hence giving a higher reading. Well done on e-mailing the Prof and hoping you get a prompt reply Xx.

@TwoBigNoisyBoys I so hear you on feeling battered and shell-shocked even when it's the news you were expecting. The mental load of cancer is enormous, not only the treatments but the relentless nature of it. Add in having to be your own secretary organising and chasing nearly every appointment, it's no wonder we are all so exhausted by it. Unless you've been there, you can't understand it.

Don't get me started on the Positivity Police . I had to distance myself from one friend in particular in the early days of my cancer diagnosis as I just couldn't cope with her relentless insistence that I be 'positive'. It's a type of shaming, unless my chin was consistently 'up' and I was smiling away, I would be to blame for bringing on my own demise.

There are plenty of other stupid things people say which are just so ridiculous. Whilst on infusion chemo and weighing 8 stone, one friend said, 'Oh Fanta, you're so slim, what's your secret?' I wanted to say, 'Ovarian cancer!' but that seemed churlish yet it upset me terribly at the time. Another time, soon after my diagnosis, I cried all over a nurse in the day unit whilst having a pint of blood drawn off and he was trying to be kind but said, 'well, you've caught it early, so it's small and that's good'. Just because I've only just found out didn't automatically mean it was caught early, in fact I was stage 3c.

As Herbal says, it's just bad luck who's dealt the C card and no amount of leafy greens is going to keep it away. I felt ashamed that I'd 'let myself' get into this dreadful state of health without knowing and then to have all the things pointed out that I should have done/been doing just made it worse. For me I have no risk factors for OC, I've never smoked, I have no family history of any cancer, I'm negative for BRCA1 and 2, I've always eaten fairly well and the vast majority are diagnosed in their 70s and I was 20 years younger, plus OC only accounts for 1-2% of all female cancers, so I'm just unlucky.

@MrsPnut your pugs are hilarious! I remember your DH 'wearing' one of them as a hat and you said they had no concept of personal space, so funny!

Gently checking in. I am not diagnosed yet, have a biopsy on Wednesday. I am terrified. Cant sleep or eat. I am laying here next to my 3 year old and I am in bits. I am so sorry this is so self indulgent. So sorry. I tried ti tell a friend in RL today and she pissed me off with her "you got this my lovey". Noooo I haven't. I am terrified.

@Lndnmummy We shall hold your hand whilst you wait, the waiting is the very worst part of the journey.
If you look up thread, you will see how we feel about the positivity police. It’s really scary waiting when you have no idea what is coming, it puts you in a stasis where you are frightened to look forward in case it’s bad news.
Do tell us how you feel, we understand and we care.

@Lndnmummy of course you're terrified, feel free to unload as much as you like here. We've all been there or are going through it and understand how you feel. Have you had any information on your biopsy and what to expect? Xx

@MrsPnut thank you so much for your kid words. Thank you so much. I am numb, in shock I think. Thank you for being so kind.❤️

Thank you @Fantasea , thank you. It was all abit of a blur. I went in for a mammogram, it was all very relaxed and low key then I was asked to do an ultrasound, all still relaxed. Then it all kind of changed and I was asked to do another mammogram. Then I was told radiologist wanted to wait for a second opinion before deciding on biopsy. I was shell shocked because his tone just changed. He was talking about my birthday on Monday and what plans do we have (none I am not fussy on my birthdays. Card and a cake is plenty). Then it was all "we are going to do another mammogram, just to he sure. And that mammogram is going to be all fine ok". Then he brought me in front of a screen and said he wanted a second opinion before ordering a biopsy. It went from cake to biopsy very fast. He said he had done this for "20 years" and "wasnt too worried". Then they called today to say the second opinion and radiologist both agreed they wanted a biopsy. So I am going back on the 11th. The fear is crippling. I am trying to remember what was on the screen, what it looked like, what he said. But I cant. It was weird. During the ultrasound when I asked what the next stage was he said "there isnt one for you. You are going to get fitted for a new bra and then you are going to enjoy your birthday (he wouldn't shut up about the damn birthday). Then clearly that wasnt right as he said "just want a mammogram, but that is going to come back fine". Then I had the mammogram and he wants a biopsy. I am sorry I am all over the place.

Lndnmummy Sorry you are waiting. I think of the biopsies 3 out of 4 come back clear so the odds are still on your side especially if they are saying they expect it clear. I have breast cancer and after 1 minute the words treatment plan were mentioned and it did not get better and end of it they said they were certain it was cancer. Its good they are being thorough. I have heard of a few cases where they were not and they missed the cancer and then picked up at quite a late stage. But its very stressful waiting and your mind goes to dark places. I hope its all clear for you and if the worst happens we will be here with you to go through it.

@Lndnmummy sending love & sympathy. I have a 3 year old too and it’s awful. But you just don’t know what you’re dealing with so try and stay calm as useless as that advice may be. I do find DD a great distraction as 3 year olds really force you to live in the moment & they won’t have a clue what’s going on if that’s worrying you.

As everyone has said the waiting is one of the hardest most stressful parts. But yes they are being thorough & that’s good.

@Lndnmummy a big hello and I have honestly found this thread invaluable. It's ok to be annoyed.... not feel that positive.... not buy into the 'battle'. And to say it.
You have lots of love and support here xx

You are an amazing group of women. I read through the thread in the small hours and my heart just burst with kindness, support and compassion for each other. Including to me, the newbie. Thank you so much for all of your kind words.
I am panicking also because of my work situation. I am currently working my notice and start a new job shortly. I am worried they would pull the offer and even if they don't I don't think I'd entitled to sick pay. I am sure I wouldn't be covered for life assurance of I get diagnosed before my start date which is end of May. I was saying to my husband that maybe I should park it all for a couple of months to make sure I can get the house in order for them should the worst happen. He hit the roof and said absolutely not. Money is just money and we will manage. Which I know comes from a good and well meaning place. But I cope by being practical (recognised with a smile those saying they clean and declutter when waiting for any type of results. I am rambling.

@Lndnmummy in my limited experience I would say hold fire until you have the full picture and a plan. Then you can make decisions with regard to work.

Ldn I would say definitely don't delay checks - my GP took 4.5 months to refer me and in that time it spread to a lymph node which meant chemotherapy was needed. The longer you leave it with cancer the more chance it spreads and the more treatment needed.

It is very difficult with work and money but you have to prioritise health with cancer.

I am very depressed and on the phone a lot to crisis lines, the LA are not helping with my son and it finished me off but am now trying social services in desperation.

Thank you both for your replies. Yes that
makes sense. I am normally a very logic person but I can't seem to think straight at the moment. I am so genuinely sorry for what you are all going through. What is really comforting for me to read is the way you comfort and just be there for eachother (must admit I haven't seen many threads on MN like that). I should have name changed but I couldn't work out how to do it.

I spoke to a woman on my team today who has just finished her radiotherapy. I was in two minds really if I should. I am effectively her line manager (she is a contractor) so felt I over stepped boundaries. She was wonderful. Just wonderful.

@Silkierabbit I am so sorry to hear things are so hard for you and your son. So sorry.❤️ @Stomacharmeleon you are so right. I think the money bit is what I can manage to think about if that
makes sense. I cant think even think the thought of telling my boys etc. So I get hung up on the silly things.