Cancer Support Thread #79 Newbies Welcome

[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

@Acinonyx2 that does sound tough. Surely someone must be able to help. I was also going to suggest talking to the nurses at your GP.

@JeanLannes you made me laugh with the gold earrings and crystal ball.

@Acinonyx2 are you on antibiotics or will that not help? Sounds really horrible.

@Rugbygirl1973 welcome and please don't feel a fraud. The anxiety of waiting is so hard and if we can help with that then that's good all round.

@JeanLannes I think people only truly realise how much some of us do to maintain the household when we have to stop doing it. A lot is invisible to them. My ex husband never got that concept.

@HumphreysCorner I'm back from a picc flush too. Also on EC next Friday. Feelings more human today and already dreading the bleurgh

Ive just been sent the next lot of appointments, for blood tests. covid swab and chemo. Despite me telling the consultant when would be away for a few days guess which days the appointments are for ?

Re wigs. I bought two the first time I had chemo, which matched the colour my hair was (dyed) then, now I am grey with it going again,Im wondering whether to get a new one. I am 73 and wonder if Im brave enough to get a totally different style and colour, something a bit out there !

Hi, been following the thread for a couple of months and wondered if I could re join (I did post at first but head wasn’t in the right place) ? You are all amazing and so supportive.

I was diagnosed at the beginning of December (on my 51st birthday) with terminal rectal cancer (secondaries in liver, spleen, lungs and lymphs. Largest tumour in liver is 20cms). I had very few symptoms, just constipation, tiredness and bright red blood/mucous which I assumed were due to piles from 3 large pregnancies!

I had a stoma fitted in January (to give my bowel a break) and a central line as they couldn’t site the PICC properly. I have been on fortnightly chemo (folfox), round 8 is next Friday. Side effects are mixed - major mouth problems, allergic reaction to chemo, tiredness & intermittent nausea are the main ones.

I had my 3 month review and have been told I’m too far gone for radiotherapy or surgery so it’s just chemo cycles until the end or when I say enough is enough. I’ve been given a prognosis of 2 years so, as a family, we’ve been pulling together a bucket list.

Any tips for dealing with the mental load? I keep being told by friends that I’m strong and brave and can fight this, I know they mean well but having to put a ‘brave’ face on this is hard.
Thanks

@ChocolateandCheese there doesn't seem to be any other illness that is so routinely greeted with 'you are brave -you can fight this'. Some people embrace this themselves - right to the end. I guess it's up to every individual to decide on that for themselves.

But I do think it has to be the choice of the person with cancer - not others. It's very wearing to be surrounded by what is basically an attitude of denial (I have seen this in action). It would not suit me at all.

What is your family situation? Do you have someone who you can be honest with irl? A couple of us here have counsellors, either private or via NHS. I find that as long as I have a (very) small number of people I can just speak frankly with - neither positive nor negative just as it is - I can be more superficial with others and let it go. It's as if you buy some people's continued companionship by not being negative - that admitting the possibility of death will bring down bad karma and make it real.

@ChocolateandCheese welcome back, I remember you from before as I was also diagnosed last December and am so sorry to hear your story .

As far as the mental load is concerned, I also find the need to be in permanent denial so exhausting. If you had been diagnosed with say MS no-one would dream of encouraging you to 'fight it', this seems to be exclusively reserved for cancer. I have found the same as @Acinonyx2:

It's as if you buy some people's continued companionship by not being negative

This sums it up for me. I have had to distance myself from 2 very old and previously close friends whom we have shared and weathered many of life's storms together. They don't seem able to listen to me in my current storm as they relentlessly insist that unless I am perpetually 'positive' I will have brought on my inevitable demise. This truly hurts as I feel abandoned in my darkest hour of need but I simply can't face another lecture. Cancer is lonely enough without having to deal with losing friends too.

A Macmillan nurse advised me to admit that friends would have to be sorted into definite 'categories' for now and that certain friends would be unable to offer support but perhaps to mix with them when you want some distraction rather than support. I find the support on the Macmillan helpline very variable but it is someone you can be yourself with who isn't going to judge or try to 'cheer you up'.

I have two lots of friends, ones that have been so supportive, offering shopping, hospital transport etc, and asking about treatment, and a couple who havent even mentioned cancer when I speak to them.
I assume they just cant deal with it rather than not caring.
I dont have any family so all my friends are important to me, even if they just chat on the phone. Its a hard and lonely journey and I dont have the energy to be positive so that Im not upsetting people

Hello @ChocolateandCheese

Toxic positivity seems to surround cancer diagnosis and treatment. And the people who say you're "brave, strong, beautiful even when bald" they mean well. It's so hard to know what the right thing to say is. Right now reading your post I want so much to offer you some magical words as comfort not knowing where to begin. I tell people that keeping it simple and just say they're thinking of me is best but it's so personal to each of us.

But being told to be strong or positive like it's somehow a character flaw if you're not or that it might somehow cure though is infuriating.

Hi @ChocolateandCheese I am so sorry to hear your story and that you find yourself here but hope we can provide support, friendship and some shoulders to lean on. Joining this thread has been invaluable for me over the past few weeks.

I hope you have good support irl. I have very quickly sorted out friends into those I can rely on and those I have just been able to block. I find WhatsApp very good for hiding behind and only actually have real conversations with a few close friends. I have however found some unlikely and unexpected support from people I didn’t know so well. In particular a neighbour who has been wonderful.

Hello and welcome back @ChocolateandCheese. Have been here since December and these lovely ladies are so supportive. I have a mixture of well meaning comments but I just nod in the right places. My DH and DC say get on with it, my mum is oh our brave girl. Then school friends are a bit in between. You're the same age as me .💐

HC x

So I’ve had to move my appointment from Monday to Tuesday the 18th as just got the news a child in my sons class has tested positive so now have to isolate. So upset x

That’s disappointing @MamaOl93.

Welcome back @ChocolateandCheese, I remember you from December too. I find the be positive stuff difficult and actively avoid people who spout it.

ChocolateandCheese welcome back and I am so sorry to hear of what you are dealing with. That is a huge amount to process and I'm not surprised you are feeling the weight of it.
Personally my only advice (and I'm not in your situation) would be to find a therapist so that you know you've got someone each week whose undivided and non-judgemental time and attention is given over to helping you process this new reality. I see a therapist privately and see it as an important investment in our family's health and well-being at this time.

I can only empathise with how fucking shit it is that people add to your load by not allowing you to feel your actual feelings and expecting some other version instead. It is because they are terrified - TERRIFIED - of what actually staring down the barrel of the gun would feel like for themselves, and so they do all sorts of mental and emotional gymnastics to avoid it. When what you really need around you is people who can sit with you in the thunderstorm and get soaking wet with you and alongside you rather than relentlessly insisting that the rain isn't that bad and it will clear up in a minute. Ok that's a crap metaphor but you know what I mean. You might find that the people who are able to do that with you right now aren't necessarily the ones you'd expect to lean on, and support might come from surprising places, I've found that it reveals a lot about people, positive and negative.

@Babamamananarama I'd never really considered that those reactions were because they were scared / terrified. It's given me a different perspective

@MamaOl93 I'm sorry that your appointment has been moved back.

@backformore I went through exactly what you are having back in December and it was all straightforward. The guide wire is to help them locate the marker in the tumour. I had to go to the Breast care unit for this at 9am as I had my surgery in a private hospital. The staff were very kind and explained it all. They did a mammogram to locate the marker and the doctor popped in local anaesthetic and put the wire in and taped it. It really wasn’t a big deal. I was surprised!
Surgery was later that day but I got home by 9pm with the drain after a lumpectomy and full axillary node clearance. They took out 29 nodes because the sentinel one had been bigger than my tumour. None were affected.
I overdid the exercises in my enthusiasm to get full movement but now four months on I am fully recovered after radiotherapy and my arm is strong and just a bit numb. I am lifting weights and cycling 30 miles and digging my allotment.
I have noticed my post op breast is slightly swollen and the skin is dimply sometimes. The BCN says this is a radiotherapy reaction not lymphoedema and will soon settle. I didn’t get any skin reaction at all.

I think the knack to getting through the surgical bit is to think of yourself as a parcel being shunted along a conveyor belt. Everybody knows what to do to you and you just let them get on with it. Sometimes they explain and sometimes they don’t. Most of the hospital nurses seemed very bored. Just one was engaged and funny and gave me a home made Christmas decoration.

It all seems very scary but you will be okay!

@BadEyeBri sorry to hear you are struggling. Hopefully the people you love understand how frightening and stressful all this is and will cut you some slack. You are the first priority right now!

@MrsPnut I have takeaway envy. Maybe we will copy you with a treat as the weather is going to be awful tomorrow so we can’t go out to play. I have been so enjoying my gradually improving fitness.

Regards to all.
Top

Oh and welcome back @ChocolateandCheese. You are among friends. No need for putting a brave face on here. I second the idea of a counsellor for you to download to. Do you have any religious beliefs? I was intrigued to find I have absolutely no wish to bargain with God, but I quite like being told when I am being prayed for.
I really wish religion had to provide an evidence base like medical interventions do. It would save a lot of unkind treatment, in many situations.
What’s on the bucket list so far? Are the family choosing some for you?

Thanks everyone, I’m glad it’s not just me that gets the ‘positive/brave/you can fight this’ responses. At the end of the day, cancer is going to be written on my death certificate and no matter how brave/positive I am, I won’t be able to change that.
I’ve had a couple of counseling sessions but they are not for me at the moment.
Re bucket list so far we got holidays as a family and with my brother and his crew (something we usually do each summer), climbing the O2, zip wire across the Eden project and a meal at the Fat Duck. Just hoping the pandemic will be more under control later this year/earlier next year.
My best friend (same age and children the same age) was also diagnosed with cancer (stage 2 brain with no spread) in March 2020. She’s had surgery and is now having radiotherapy with chemo to follow. I’m trying to support her as much as possible as her husband left her the day after she was diagnosed. He said it was that he couldn’t cope with the cancer but it turns out there was another woman waiting in the wings.
Hope everyone has a lovely weekend even though the forecast isn’t great!

ChocolateandCheese I live close to the Eden project - DM me when you are planning that trip if I can be of help with any of it. I might be able to help with accommodation etc as Cornwall will be super busy this year.

@ChocolateandCheese your poor friend. What a shock and what a shit her husband was.

Zip wiring across the eden project sounds amazing fun. I didn't even know you could.

I haven't posted or introduced myself on this post in a long while so I'm using a rainy Saturday to catch up.
I was diagnosed with stage 4 ovarian cancer in June 2020. I finished chemo in December and I had full hysterectomy in October. My last scans were NAD and my CA125 levels have returned to normal levels I'm on Bevacizumab for maintenance I'm 50 and have an eight year old son.

There have been so much action on this thread and as always I send a warm welcome to the newcomers I'm glad you found us. I wish different circumstances could of brought us together.
Fizzy and theresonlyoneofme I'm so glad you had successful surgeries an your home and recovering. Fizzy I'm I right in thinking that you also have IBD. I do and after years of living in fear of uncontrollable diarrhoea I found it very difficult to adapt to taking laxatives for constipation. I finally got my head around that and started to take the laxatives in preparation for chemo.It might of made the whole thing a lot more comfortable if I had made that adjustment earlier.

Bridget I was also really happy to read your latest scan results. I was listening to a programme about choirs and how people have been getting together via zoom for practice and how helpful this has been. Have you been able to do this? I bet your desperate to get back to real life practice and performance.

MrsPnut I was sorry to read that you will be needing more treatment I'm glad they have put together a treatment plan.

Bitoffun I hope the wet weather is not putting a dampner on any travel plans and I hope you have worked through that box of Crunchies.

There was some mention of nutrition a while back. I'm starting some work with Penny Brohn and they developed the Bristol whole life approach . Their website has a lot of information about nutrition. The centre is in Bristol but they are doing a lot on zoom at the moment and it's well worth a look. I made some avocado and beetroot brownies which were unexpectedly delicious and well received. Even by fussy eight year old and sugar addict ( my) mum.

I have also had mixed responses from friend's some have been amazing others not so.One friend did not contact me until I was four treatments in and preparing for surgery because she didn't know what to say. If I could give any message to people it would be 'I don't need you to say anything just ask how I feel' or at least say 'hello'. The same friend asked me if I had contact with others with Ovacancer because that's what I needed to speak to others like me. Oh I thought I'm not like YOU anymore, maybe I'm over sensitive.

Blimey this is an epic post .

I'm enjoying my new hair growth and after years of thinking that I looked awful with short hair I have found that I really don't.I have been experimenting with hats as well and I rock a beret and a trilby looks good aswell. For all those struggling with hair loss it is awful and makes you feel crap but you will come out the other side.
Love to you all xx

@HauntedDishcloth ahh calling mammograms X-rays makes more sense. Now if I just knew why the Radiologist looked so concerned and started making phone calls during my MRI my inner terrible Detective would be much happier.

@MamaOl93 I'm sorry your scan has been out back. Hang on in there and try and keep distracted. (Not at all easy I know).

@ChocolateandCheese I'm sorry for what your going through. Not helped I'm sure by the "be brave/positive" lot. This thread is full of brilliant, supportive and friendly people. No brave faces or pretending required.I think @Babamamananarama puts it rather beautifully with the thunder storm metaphor.

Hope everyone is having a nice weekend despite the awful weather.

@MamaOl93 oh no, that is disappointing for you. More waiting is horrible.

@ChocolateandCheese your poor friend, however no surprise there was someone waiting in the wings .

@Lizdeflores how lovely to hear from you! No I don't have IBD. The constipation has been an issue since I started on the chemo, before this I was the other way but I suspect that was due to my growths pressing on my bowel. I have recovered well from my surgery but I have had some issues with vaginal bleeding which the CNS reassures me is normal but has really freaked me out. I do feel rather let down by the lack of aftercare. I was discharged after 4 nights with no advice on what to expect at all and no communication at all from the hospital so far. The CNS said they will contact me once they have the histology results and have discussed me at the MDT but it all feels very casual.

I think I had a follow up appt 2 weeks after discharge I was able to phone the ward of I had concerns before that .I didn't have any bleeding afterwards but I m sure if they feel it's normal it's fine. I hope the constipation resolves it self. X

@TopOfTheCliff Thanks so much for that - it’s great to hear a positive experience. Everything I read online seems to suggest avoiding an axillary clearance if at all possible (and a nurse I saw last week kind of gave me the same impression, though she was assuming that I’d only need a sentinel biopsy)... so it’s become a big scary thing in my head now.

Your advice is spot on and very similar to what my husband says, which is that I just need to kind of dissociate for a bit, keep sticking one foot in front of the other and focus on ticking off one procedure at a time. Right now even having to go in a few days before for a Covid test is weighing on me, which I know is dumb - it just feels like yet one more thing!

Really glad I’m getting a second opinion on Monday so if I’m told an axillary is the only real option I can stop second guessing...