Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

I am currently in work and firing on about 75%, but better than being at home.

Two more of these injections, Wednesday for it to leave my body and then I am hoping for some normality for a week or two.

Glorious here too. I was mulling over whether it's better to be ill, as in feeling ill because of chemo, during winter or summer. I could have spent summer days laid on the swing bench instead of wrapped up on the sofa.

Brassica how's the armpit? I presume you need to be all healed up before radiotherapy. As to Christmas shopping I need to make a list and just hit Amazon. We live rurally so most of my shopping is done online anyway. My immediate family and a couple of friends are very supportive. My mother is elderly and frail and Dsis is shouldering the burden there which is a lot.

wtf two hospitals in one day, it's lucky the appointments give you time to get between them and park! I will have the same thing when I get to radiotherapy.
I am normally a list maker and very organised. Tomorrow is actually the half way point of my chemotherapy six weeks completed and six more to go so Ishould be pleased according to everyone. The effects of 12 weekly paclitaxel are said to be cumulative (some hospitals give a week off in the middle). The thought fills me with horror because my energy levels are getting lower by the week and I dont quite know how I'm going to get through six more weeks. Not that I'm feeling ill like naomi, just everything is such an effort.

Skap the effects of paclitaxel were definitely cumulative for me. In the end I only had to have 9 weekly sessions and fir the last 2 I was really exhausted and the neuropathology on my fingers and toes was getting worse.

WTF Having to go between two hospitals in one day is tough.

Trumpton sounds like you have a full on week too!

WTF you sound perky and the rads seem to be going smoothly, which is great to hear. For me, the thing I don’t like about others ticking off treatment is that it usually fails to take notice of what I’ve already been through and feels like being rushed to get it over with. For example, upon having surgery the next day I had people going “great, only rads to go now! When do you start, will you be finished by Christmas?” and for me it would have been more sensitive to acknowledge that surgery is a step in itself, there’s recovery time involved and let’s just ‘celebrate’ that step before mentally rushing ahead and treating it all as practically done.

For me, I take it a day at a time on all this stuff and I don’t want to talk about finishing rads when I haven’t started nor even know when I will start! Plus expecting and stating that it’ll be finished by x date might not be helpful if not true. Initially in all this I thought the whole thing would be done by now, and in fact I think it’ll be January. I’m not sure I’m really being very articulate here but I guess I want to be supported as it goes along and not have everyone assume last rads = everything resumes as it was before and we’re already there to all intents and purposes. I don’t think I’m milking it (maybe I am) but I don’t want to be rushed.

Skap, thanks for asking - on Friday I thought the seroma was refilling and thought it was going to be quite a painful weekend waiting for the clinic to reopen but in fact it hasn’t significantly refilled and so isn’t too bad. Touch wood all seems to be healing well and settling down.

Brassica I completely agree about those people who seem to be anxious for treatment to be over as quickly as possible, I am sure that for most of them it is coming from a good place and they just want it to be all over for us but I do have at least one 'friend' who seems to be a bit irritated that it is all still going on. "Surely it must be all finished by now" (But she is the one who told me not to think I was special, I was just one in three people who had experienced cancer and anyway she had it first"!

The count down is for you to do in the way that suits you best and you need the time to come to terms with each stage of treatment and cope with it in your own way. That isn't milking it, it is just coping with it step by step.

Ive got stage 4 cancer. Its in my spine and god knows where else..in hospital for scans and will find out Friday the plan..Obvs im in a state. Is there any stage 4 ladies or men who can give me some hope that i can live with it.? Xx

Clogs sorry to see you here but you are welcome.

I am sure someone will be along who may have some insight.

brassica meetcat I do get what you're saying, although I haven't had that sense of others trying to rush me, but i do wonder if I am in fact rushing myself! Chemo was so horrible in parts that there were times when the only way I could get through it was to anticipate the day or week to come when I knew I'd feel a bit better.
And now rads is speeding along...I'm on session 12 today which is incredible....I feel like I've only just started.
My main concern now is the next stage where most of the boxes are ticked, apart from the herceptin, and the task is to live with what has happened and the unknown future. My rushing through probably doesn't help with this. I'm in the process of organising some counselling sessions for myself which will hopefully help me make some sense of it all and put away some of the fear that pops up at random quiet moments.
No suggestion from me that anyone is milking it by the way.

clogs so sorry to see ykur post and im afraid ive no real knowledge of your situation.
I would imag8ne that knowing what's what will help, although no doubt very difficult.
Do.you have real life support?

Clogs I'm so sorry, mine was only stage 2 and I'm not sure there's anyone who posts here regularly who is stage 4. You might get responses if you start a thread yourself, but please do stay on here too as you will get lots of friendly support.

Clogs I am afraid I don't have any relevant experience or advice to offer except that you are very welcome here even though I wish you didn't need to be here.

WTF I think the counselling is a very god idea. I thought I had sailed through everything without problems and now all the heavy stuff is done I find myself frequently tearful for no obvious reason. I have been thinking that some counselling might be a good idea too. It is all a lot to deal with even if, as for me, it has all been as easy as it possibly could be.

wtf, I'm considering counselling too. I seem to be finding it hard to move past the post op haemorrhage, it also bought up lots of worries about my mum who passed away this year.

clogs sorry to see you here. If you don't mind me asking is this recent news? Hope you have a good team around you.

I had a consultant appointment today. I don't need radiotherapy as it appears there has been no spread. Next appointment is March. I had a vault smear which I wasn't expecting. I had so many layers of clothing on. My internal stitches are still in place!
Feeling very relieved.

Best wishes to everyone. I'm so grateful for all the support I've had here. Will keep dropping into The Patience as want to know how you all getting on.

Having spent all day in bed sleeping,

I went to wallk in clinic to get the last Nivestim, injection with a temperature of 37.5, (even with paracetamol)they sent me away without the injection and AB's which I never take (so they should work quickly ) and some Nystatin.

The temperature is down to 35 and I have a tub Haggen Daas ice cream.

The on call GP at the walk in said you don't want to know what your throat looks like, I replied a road map of Beirut and she said not that good.

I cried in front of them.

I had a lovely phone call from breast nurse in Manchester about deferred mastectomy .
She said that 6 weeks after last Paciltaxel would be optimum for operation .
I think that takes us to beginning of April for first op and middle May for second .
That will nearly a year from first mammogram !
Sorry @Clogsaregreat I have no knowledge of your condition but stay... we are great at handholding and support .

Bless you naomi, I hope you are feeling ok. Sometimes people being kind sets us off. You obviously feel rotten and I hope you get a good night’s rest.

@Clogsaregreat I'm very sorry that you have been given such frightening news. What is your primary cancer? Unfortunately there are/have been a few ladies on here who have mets so I'll put a shout out in case any are passing and can give you their experience:
@keepcalm
@londonhuffypuffy
@BitOfFun

Congratulations @catnidge! I hope you continue going from strength to strength and do come and see us sometimes.

Counselling sounds like a good thing to do, @WTF99. You have had a lot to deal with over a few years. I'm not ruling it out for me either, although at the moment I feel alright - I suspect that when the dust settles at the end of treatment I will have thoughts and emotions coming in that have been locked out while I have been getting through what needed to be done.

I saw the radio oncologist yesterday and he's happy to go ahead in a couple of weeks. I need a planning appointment first before I'll know the start date but it's confirmed as 4.5 weeks of rads going on into January.

@Trumpton good luck with the PICC line today. I've tried all sorts of things to cover it but not found anything better than the tubifast they give on the ward. They don't like you to use anything tight. For chemo day I wear short sleeves and take a warm wrap. I'm not cold capping but find the ward is a bit cold.
@NaomiFromMilkShake I don't blame you for crying. I find that in dealing with difficult things I can hold on until someone is very kind and that opens the floodgates. What kind of work do you do? Are you trying to manage without going off sick? I have developed an addiction to carte dor chocolate ice cream, even though I can't taste it, and eat rather a lot

Skap

I am trying to manage not being off for all of it, but if it continues like this, I am looking at the next three months in bed. Thankfully money is not the issue, but my own self worth and mental health is.

I have just finished a fifteen minute nosebleed, I may refuse the last injection when the DN comes.

I can't even get ice cream down, it is like swallowing razor blades. I bought Haagen Daas, there is no real taste, but I am aware of a lot of sugar.

Naomi, the injections don’t cause the nosebleeds, that’s the chemo. You need the injections to get your blood cell production up, which is for energy and fighting infection.

Brasicca

The injection is Nivestim and nosebleeds are cited as a side effect but either way the DN came with instructions not to administer, so decision made for me.

I feel marginally better, but the downside of that is I am not sleeping therefore I am fully aware of the pain from my throat.

Never mind, forwards, forwards, always forwards.

Naomi your neutrophils will be up in response to your infection I would imagine so may be another reason they don't want you to have the injection?
Hope you feel better soon. I had a night in hospital with tonsilitis during my 6th cycle. Not an experience I'd recommend but the iv antibiotics did knock it on the head pretty quickly.
Are you using difflam? I found that useful to numb the pain from my throat and from mouth ulcers, even if only a bit if temporary relief.

WTF

Due to the Head and Neck four years ago I can't tolerate much in my mouth.

I am using something called Genigel, both as a mouthwash and a mouth-gel. It has hyaluronic acid in it which seems to work well.

I am somewhere between feeling grim and hoping that when I wake up in the morning, I will be able to manage without DH staying at home. His work are very understanding, so either way it doesn't matter, but I really didn't want to start trading on their goodwill just yet.

Naomi if you can describe yourself as feeling grim, it sounds as if you need the support. I'd be taking it, but I'm a selfish bint!

Naomi that sounds truly rotten. I hope the meds get on top of it quickly.

Hi i'm new here, i had breast cancer and surgery followed by treatment in June 2017 and now i'm pregnant.

Im having a really 'wobbly' day and am anxiety ridden, could really do with hearing some positive stories from people who had children after cancer treatment or know someone who did.

Good luck to everyone and thank you X