Cancer Support thread #78 - 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

@JeanLannes That's great news, having a plan is always much easier to deal with mentally.

@JeanLannes that's great news about the CT.

@FizzyOrange hope you are doing ok and today went well.

My hair has started to come back, which i wasn't expecting before the end of chemo. I have just under a cm now. I can't stop stroking it!

On day five of my cycle and I feel like I have been hit by a train. Sooooo tired. V glad this is the last one.

Kentishmama have you come across the Curly girl method? Might be worth looking into if your new hair texture is taking some getting used to?

Chickandlamb my children are the same ages as yours and I have similar fears.

Jean I'm relieved for you that you now have a clearer idea and a plan. I hope it feels at least some of the weight is lifted.

Well I've had 24 hrs of stomach pains, which I'm presuming is just constipation augmented by bone pain from the injections. Bleugh. Did wonder if it was AF impending, as my period has gone AWOL. I've been terribly unproductive and just flopped about woefully today.

@Babamamananarama how do you cope with their fears? Putting eldest DS to bed tonight he was very worried about me and anxious something is wrong. Apparently I'm not as good an actress as I thought. But I didn't want to tell him anything yet because it's so new and I don't have any answers myself. Thankfully youngest DS is completely oblivious.

I'm sorry you've been feeling rubbish. Sometimes you just need a duvet day. I hope it eases for you soon.

[quote ChickandLamb]@KentishMama why do people even say you are too young as if it's some kind of comfort? I'm 28 and everyone I've told so far as had the same reaction. It's good to hear from people getting to the other side of all of this stuff. My children are very young (7 & 4) and I'm so worried about the treatment impacting on my ability to care for them and ability to enjoy them. I can't believe you sprinted through treatment so quickly!

@Vinorosso74 patience also not my strong point! They say the nodes long good on the scan but then also say they won't know until surgery. So do they look good or not? Waiting. Waiting. Waiting. My hair is very long too but full of split ends as it has been ignored all lock down.[/quote]
@ChickandLamb About the nodes: they can look clear on scans but still have cancer cells present which are too small to show up. When a node is taken out it will be examined under a microscope which will definitely see if any cancer cells are present. This is the same if you have had chemo beforehand - they will be able to see any remnants left.

@JeanLannes I'm pleased today went ok for you. I do think knowing the plan helps a lot.

I keep being told it's good the lymph nodes look clear but I know it's not a 100% guarantee they are. Time will tell.

@BadEyeBri I was reading your post elsewhere about a hospital gift and I am quite bemused at how antagonistic some posters can be on other threads! Thank goodness everyone here is so much kinder.

Anyway, it reminded me that when I had my last chemo on Friday, I took in a small homemade hamper with a note (not homemade cakes - just stuff I had bought like coffee, tea, chocs, etc). I arrived behind another lady who was also clearly there for her last visit. She had so many boxes of gifts for everyone that they had to call a porter to come and help move them! I felt mortified that my gift looked so small in comparison, but they were lovely about it.

All of which is a long-winded way of saying that I am sure whatever you get will be appreciated!

Thanks @AlbertCampion I was a bit bemused with that thread too. I've hidden it now because I don't have the energy for people like that. My own fault for posting in AIBU

Help I have been kidnapped by 87 year olds and can’t escape!
My DH left me at the Aged Parents house and went home in my car. I have cleaned as much of their house as my lack of lymph nodes will allow, and sorted out DFs medication and cooked washed up and generally been a saint! DF is home and very pleased to escape the hospital. He claims they just fed him jam sandwiches which is unlikely as he is diabetic. DM is losing her short term memory but we booked her a haircut, a hearing aid review and a new recycling bin! They are lovely but driving me bonkers. I shall find a way to get to the station tomorrow. Even if it’s hitchhiking.

@Bloodybridget I am delighted to be discharged. I intend to use relentless optimism and denial as my coping strategy now. It has worked for the last 60 years after all. What will be will be. I hope your shed is finished soon.
@Acinonyx2 I would love to sit and talk philosophy with you. You sound such an interesting and educated person. My brain is still a bit mushy and I keep forgetting things although I thrashed my DS at a board game last week to our mutual surprise. There is still hope for me!
Love to all and keep moving
Top

@FizzyOrange Good morning Fizzy.

@TopOfTheCliff ah how kind of you. On a boat perhaps ? My background crosses several disciplines and is a bit peculiar. I do think though, that my interest in philosophy has served me well with the Big Existential question (e.g. I'd spent so much time already contemplating death) - but it's not been so helpful, unfortunately, with physical suffering. I'm clearly not a true stoic in any case!

@ChickandLamb and @Vinorosso74, I've been wondering whether to share my lymph node experience as it's not a great one, and then decided I should so that you're both armed with as much knowledge as possible. Hope this won't drag you down.

My lymph nodes looked completely fine on ultrasound and MRI. My consultant still booked me in for a microbubbles guided sentinel node biopsy before the surgery (this is something that is only done by very few hospitals). The specialist who did that biopsy also said my nodes looked fine to him, too. However, that biopsy came back as cancerous, so we knew at least 1 node had been affected before the surgery. My consultant still felt it might just be the one node as they all looked so 'normal'. But I ended up with 5 out of 13 that were cancerous. It was a huge shock. My tumour was only 12 mm - tiny! - but one of the nodes came back as 15mm. Bigger than the original tumour.

The moral of this story is that you really don't know until the nodes are out and checked in a lab. You have got to think positively, but in the back of your mind, be armed with the knowledge that it can go either way.

I hope it was ok to share this. Sending you both much love!

@KentishMama appreciate you sharing your experience. It is the fear of the unknown that scares me. I know they will find out and that potentially it means further surgery, chemo (stuff I'd ideally prefer to not have). DP is trying to be so optimistic but until the results are in it's hard.
I did lose it slightly as he used a quote his sister had said to him about once this is over, I can carry on living my life. That really upset me as my life has changed.

@Vinorosso74 I understand just how scary this is, but I kept telling myself that each treatment gave me / us more knowledge about the illness, and knowledge is POWER. That approach really helped me.

And I want to say that you will carry on living your life, it'll just be slightly different from before. I'm three months on from final treatment now, and I don't think about cancer all day long. I am much too busy! I'm back to the normal school drop-off schedule and bickering with my 6-year old. I am back to working crazy hours (I don't recommend it, but I do love my job and my career matters to me). And I am currently living out of boxes because we're trying to move house, to an utterly dreamy Victorian that I am madly in love with, but the exchange date keeps getting pushed back, so that's taken over a lot of space in my brain! Life is not the same as before, but I appreciate all of these normal things a lot more!

Im a month on from surgery and had no follow up from the hospital yet, getting twitchy about this. Im supposed to start chem or a PARP inhibitor I think, but I dont even know the results of what they found after hoovering my insides out. Had no post op contact from GP (or pre op con tact come to that) thought surgery might at least have contacted me to see if I was dead or alive

@KentishMama thank you for sharing your experience with us. My tumour is also only 12mm. It is really hard not going to dark places. In my head I'm worrying that they're going to find it everywhere not just in my lymph nodes. I am finding it difficult when people (even Doctors) are telling me it's all positive signs so far. For me it's not positive until the surgery and we know exactly what is going on.

Hearing about your life post treatment made me tear up a little. It seems so normal. And I am thrilled for you that you have that back. Hope the house stuff is sorted soon!

I also feel like my life has changed forever @Vinorosso74. It feels like I will carry this with me now and I'm never going to be as free as I was before.

@thereisonlyoneofme that doesn't sound right at all. I would contact them and ask about results from the surgery - any pathology that was done. There surely should be some follow-up.

My GP practice have been great when I ask - but otherwise they have no contact with me. My actual GP retired last year - not sure if I belong to anyone now.

Thank you @KentishMama. I just find it hard to take when people who haven't been through it make comments like that when I feel like I do at present.
Yes, @ChickandLamb that's how I feel too.
@Acinonyx2 I hope everything goes well for you tomorrow.

@Vinorosso74 you too surgery-buddy I'm trying to keep busy. Following my robot vacuum around with the remote. Doing extra laundry (last time I was sick for a few days dd had no school uniform come Monday etc etc ). Watching chirpy music videos like Gangnam style. Taking herbal calms. Breathing exercises....

@TopOfTheCliff your post made me laugh! Hope you are rescued from your incarceration soon!

I found your comments about life after treatment really moving, @KentishMama. I am struggling a bit at the moment as so many people have congratulated me on my last chemo and talked about how I can start to move on (I haven't even done radiotherapy yet!). Obviously I am relieved that this stage is over but I am not feeling the joy people seem to think I should. I don't want to see anyone or be sociable - I am fat and bald and blotchy. I am exhausted. And I feel, frankly, traumatised by the last few months. It is very comforting to know that there will be a time when I don't think about cancer for even as much as an hour, and that I will be busy and fulfilled and happy again. So, thank you for giving me some hope!

@Acinonyx2 wishing you the very best of luck tomorrow. xx

I've also done some laundry and a quick go round with the hoover. Our cat is moulting big time!
Sort of hanging around before my radioactive jab this afternoon. I'll check my bag this evening but as I should be home the same day I don't need much. I have put some basic toiletries in just in case.

Chickandlamb re the kids I think I am probably in a very different place to you, because by the time I got home from my initial 10 day emergency hospital admission, we had a firm diagnosis, treatment plan and a lot of fairly certain information and so were able to talk to the kids with that all in mind. Like you, my oldest had a lot of worries, picked up on all the emotions going around and needed quite a lot of detailed information. My younger one really didn't - he could only engage with it all in small bitesize chunks and didn't really ask any questions so it was a case of finding opportunities to furnish him with the information he needed.

There's a lot of info on the Macmillan website about how to talk to kids, which one of my friends trawled through and extracted the headlines from, which was very useful when we were in the initial throes of overload.

It's a delicate balance of not overloading them with information which might be too much for them, vs making sure they are not feeling like things are being hidden from them (as they will pick up on something going on) which will leave them creating their own scary version of what's going on.

@KentishMama I found your detailed post about the lymph nodes helpful as I'm stewing about that at the moment in the run up to my matstectomy & sentinel lymph node removal. Mine are also showing as clear on scans at the moment. Can I ask you another question or two about it? You said that 5 out of 13 were found to be dodgy - was that determined after they were removed during surgery, and do you know how they decided to take out those 13?

Just to add to my earlier post, life after treatment isn't all joy and happiness. I mean, I look in the mirror and I don't recognise the fat woman with the horrid short curls. (Sorry, but it's true!) And I am frustrated when I go for a walk and my legs are shaking after half an hour. It sucks! But that is not all I can think about these days. There is also plenty of good, normal life stuff happening, and that good stuff is taking up a higher percentage of my time every week!

@HauntedDishcloth So, before the surgery, we knew that at least one node was evil. My surgeon wanted to do a full axillary clearance, which means levels 1 to 3 (Look it up - level 1 is basically under the arm, level 2 is a bit higher up, etc.). But I was very concerned about lymphoedema, so we discussed it and decided to do a level 1 clearance only. She basically cut out a big block of flesh under my arm, and some poor person in a lab had to dice that up and count how many nodes were in it. I happened to have 13. Some people have fewer, some have more.
Because so many nodes were positive, I also had extensive radiotherapy to the area afterwards - targeting levels 2 and 3, the area above the clavicle and the internal mammary chain (sternum area). Just in case we left anything behind.

Hope this helps!

@KentishMama Oh thanks, yes, that does help. I'm concerned about the lymphodema aspect. I didn't know anything about the nodes in that level of detail. I am now armed to grill my surgeon!

By the way, I'm sure others are not seeing you as fat with horrid hair! I have naturally curly hair which I've never been keen on, but whenever I wore it natural people would gush with comments how lovely it was even when to me it was a frightful mess! You probably know the chemo curls aren't supposed to last, only until the follicles are properly healed. At least you have hair now