Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Welcome @OrdinaryLife, I’m sorry you find yourself here. I know a few members have used Maggies Centres and also other counsellors. It’s such a shitty time when you have cancer and being able to talk to others makes a big difference.

I had my second FEC today, but there was a drama about my bloods and then a drama about my heart rate. My cannula wasn’t sited very well so it was a little painful but I just wanted it over and done with. I also had the dexamethasone at 3pm so I will be awake all bloody night. Grrrr

@OrdinaryLife welcome to our lovely friendly thread with the kindest ladies on MN. I have OC stage 3c diagnosed in December 2020. I do feel for you back on the rollercoaster just when you thought you could have a bit of time for yourself, it is very hard. I crave being able to feel normal and not like a cancer patient. I have to go into hospital on Thursday to have my vena cava filter removed, it is only a day thing but I am so done with hospitals and treatment I am dreading it. I haven't used Maggies but have phoned Macmillan when I've needed someone to listen to me, it does depend on who picks up the phone and some people are loads better than others but overall I have found them helpful.

@MrsPnut poor you, what a dreadful day. I can never sleep after the steroids either. I have to take them for 2 days after my chemo and set my alarm for 7am to get them in good and early, this is usually after about 2 hours sleep but I have found through experience this helps to reset me much faster.

@OrdinaryLife hello and welcome to the kindest thread on Mumsnet. I'm so sorry you're waiting for news which may well be bad. I had a lung metastasis of my ovarian tumour six months after I finished chemo, so I can imagine what a blow this is for you. I hope you get a definite diagnosis and a treatment plan very soon.
I am having private counselling sessions to help me cope with the illness, even though I have a very supportive DP and friends. There are a couple of women on the thread who are getting counselling at Maggie's centres, I hope one of them will respond to you.

Hi all. I’m having my 3rd EC tomorrow. I’ve been really happy as my 2nd MR scan has shown a reduction in all dimensions measured in the tumour. However, my nipple which had popped out has inverted again.
Just wondering, does the tumour grow again as you near the end of each cycle? Had to wait 2 extra day for cycle 3 because of the bank holiday and now panicking it’s growing each day.

@Bloodybridget - happy with no current evidence of a recurrence and hope you get a lovely country retreat. Fancy the Gower myself but would need to sell up in London, which I definitely won’t do.

@Acinonyx2 - thank you and re the RT tattoos by the time you feel a tiny sharp pain it’s over! I also used aquaphor on my skin (messy - cover after with old tops only!) as well as pure aloe vera and Alfacort during the last few ‘itchy’ weeks. The RTs also recommended an antihistamine tablet taken with ibuprofen to help sleep - worked a treat and great dreams! I hope you’re pleased to hear I also take a daily walk!

Wishing good vibes to everyone 💐

Thanks @TopOfTheCliff and @ElaineMarieBenes

Hope you get some support with the mum-minding, Top, and back out on the water!

I'm already creamed up and on antihistamines - so I guess it will be more of the same. Indeed - everyone should be walking - but you're doing better than me if you manage it daily

@OrdinaryLife I can see how you would be royally fed up to be back in treatment so soon. Like Bridget, I have a private counsellor but only a couple more sessions due to the cost. My dh sounds similar - doesn't really do emotions, especially difficult ones!

@MrsPnut always some unexpected drama about something - gets so tiring! I do hate taking steroids - hard enough to get a sleep routine as it is.

Getting my scan and tattoos on Monday but don't start rads until 28th! So I have an enforced treatment holiday. Hope the weather stays nice.

Popping into oncology for a port flush and lock later - I'm trying to 'reframe' my general dread of going into the chemo suite in preparation for the next series.

Thanks for the welcome and kind thoughts. I know i will feel better once I've spoken to the onc and there is a plan... my worry is that there are no options as I have a rare type. But that is a worry for another day.

Sending sleep vibes and good wishes to those having procedures or a tough time today x

Shout out to everyone & generally sending out good vibes to all on the thread ...but....

I'm going to have to write this down in a post in the hope it might stop going round and round in my head for a bit! In a week I shall be sans left boob and I'm feeling rather angsty, not about the op itself but the aftermath of there being nothing on one side, compounded by my giant right boob being left intact. I know all the logical arguments for having mastectcomy etc etc but the anticipation of how it will feel and look is unnerving, to say the least. I've been treating left boob (or "biggie" as it has been known after being named by DS1 because it is slightly bigger than the other) as persona non grata after finding the lump 6mths ago but now it's demise is looming, I'm feeling sorry for it, and myself. I'm going through all the woe-is-me, self-pitying wallowing of "why", "it's so unfair" and how will I cope managing with no hair and no boob. I'm sure it'll be better once it's done as then I'll just have to get on with it! I keep imagining going alone into the hospital & it feeling like I did when I walked down the corridor in the examination halls for my finals...

Anway, I do have some hair growth, 5wks after last chemo. My scalp feels like what I imagine the coat of a sleek, soft mole to feel like (as in a mole the mammal, not the other kind). Also getting eyebrow and eyelash stubble. And stubble in one armpit only I hope it's not growing back on only one side in other places - doesn't feel like it but no way am I looking to check!

@HauntedDishcloth Sympathies! You're allowed to feel all the angst. What is the plan, post-surgery - will you have reconstruction? I know what you mean about reaching a decision in your mind but then having to grapple with the feelings around it (I used to be very pro "whip 'em both off", in the early days after my diagnosis, but I'm currently waiting for pathology reports after lumpectomy and facing the real possibility of needing a mastectomy is putting me through all the angst, too).

I know what you mean about the going alone into hospital bit. Once you're actually there, it will be ok. And by this time next week, you'll be done!

Love that "Biggie" has a name. My affected boob was also my son's "favourite" when nursing (we called it "Comforty Boob" - those hormones sure have a lot of kooky stuff to account for!)

Hooray for hair and eyelashes! These are things to celebrate in the meantime :)

Still waiting for pathology over here and going slowly a bit bonkers. And now pretty sure I've got cording in my surgery arm. Sigh...

@HauntedDishcloth I'm with you on writing things down to get them out of your head, and I hope it helped somewhat. All of it is unfair. Leading up to my op I tried to focus on the day after, when it would be all done and the cancer hopefully all gone. Sometimes that worked.

@backformore the wait for results is maddening isn't it? I just can't face more surgery and I can't face more uncertainty overy treatment. I just want to get back to my life. I'm sorry your arm is causing you trouble. Massage is supposed to help I think. My arm still feels swollen and stiff. I think that is because I needed 3 surgeries in the end because of the blood loss. Whatever it is its infuriating. I just want to be and feel back to normal.

@OrdinaryLife Hi, I'm using Magies because there is a centre a 5 minute walk from my house. Everything is done virtually at the moment but they have a lot of really good services and the hope is they will be back in person soon.

@Lunificent I have a slightly different treatment regimen, but I also started with an inverted nipple. As the tumor has shrunk, the nipple has retracted even further to the point where you could probably sew it over and no one would know the difference! I recently had scans and was able to see what was up and there is a long bit of cancer growth directly behind the nipple and towards the central tumor. So however those two bits are shrinking is pulling the nipple in further - kind of like a taunt string. Depending on where/how your tumor is situated in the breast, and how the cancer is dying, it could be something similar.

You may want to flag with your MO, though, just to be on the safe side. I report any breast changes to mine so she can have a look if needed.

People that had a port fitted, was it done under local or a general anaesthetic? I had my PICC under local and drove myself home but I am having a port this time because of a 3 weekly chemo cycle.

@MrsPnut mine was local (and I also had some sedation which was great - don't remember a thing!). I think it's usually local.

PS if you having chemo that day or next day - they should leave the needle in.

I've just had chemo, there was a mix up in which hospital to refer me to for it doing. My oncologist tried to send me to the NHS hospital 34 miles away and I wanted the BMI hospital 33 miles the opposite direction.

I had expected it being done last week but I've now got secretaries and oncologists on holiday this week.

Hi - I had a port under local and partial sedation. I had failed to turn over the appointment letter and hadn’t seen the section about not drinking for 6 hours or whatever it was and had had half a cup of tea a few hours earlier . Mine was quite sore for a few weeks however very grateful to have it now.

Hope everyone is doing well this week.

Hello all. I'm returning to this thread but I know how lovely and supportive you are are.

I'm 44, married without children and was diagnosed with stage 3 triple negative breast cancer in November 2019. I had 4 x paclitaxel and carboplatin and appeared to have a complete response so my planned FEC was cancelled and I was sent for surgery. I had a mastectomy and lymph node clearance followed by radiotherapy. My treatment ended in July 2020.

In December 2020 I was rushed to hospital after feeling very ill and told my BC had returned and I was now stage 4. Since then I've had surgery and 2 lots of radiotherapy. I'm now on chemo therapy and immuno therapy. Who knows what the future brings but I'm not going to let cancer get in the way of living life.

@Bloodybridget I hope you're doing ok. I would definitely follow your heart.

To anyone struggling to deal with their diagnosis it's definitely worth checking out what mental health support there is. I'm lucky enough to be receiving treatment from a specialist cancer hospital with a Maggies next door but I'm also able to access a psychotherapist, funding by McMillan, through the hospital. I've been able to access her from my initial diagnosis, through the end of treatment and through to today. It's been a huge help throughout.

@barberousbarbara I'm very sorry to hear your news, but glad that you have come back to the thread. I'd like to adopt your resolution "not to let cancer get in the way of living life" - it seems like the only way not to waste whatever good time we have left. Not always easy to put into practice, but like you I'm having counselling, which does help. Wishing you lots of fun and joy

@Bloodybridget it certainly make you stop and access your life. I've also found out who my true friends are and I've cut out anyone negative. I have bad days but on the whole my attitude is fuck cancer.

Sending you a big hug

@haunteddishcloth I love your description of your soft sleek mole head do others keep trying to stroke you though?

So I went into town today to buy some work trousers while my car was being serviced. Ended up in tears in John Lewis at the pointlessness of spending money on clothes so I decided to walk to the maggies centre (its about 2miles). I'm so glad I did, the nurse support specialist was lovely and listened as I turned into a snotty mess and she liaised with oncology cns who is arranging for me to have another ct to see what the nodule is all about . She was reassuring that even if it is a tumour, there are options and she also put me on the wait list to talk to the psychologist which should be a couple of weeks. Thanks for all your advice - it was time I got help from someone rather than trying to carry this on my own and support everyone around me.

@barberousbarbara excellent advice - wishing you time and joy x

Hi can I join too please. I’ve been diagnosed with ER and PR positive,HR negative breast cancer after a routine mammogram. I’m due to have the lump removed and a sentinel node biopsy at the end of next week. I’ve still not taken it in properly but I’m trying hard not to think beyond the operation, one step at a time. I seem to have had more medical appointments in the last few weeks than I’ve had since I had my children over 20 years ago!

Half term had meant I haven't been on here for a few days - this thread does move quickly!

@PhannyPharts thanks so much for the offer of asking questions! I'd really just like to know if a genetic predisposition increases the likelihood of recurrence, but I can always ask my oncologist when I see him in July.

I am increasingly feeling my lack of hair - my face feels so much fatter without it! I bought a pink wavy wig and tried wearing it out today, but I felt a bit silly and got very, very hot. I thought everyone was staring at me but I am not sure if that was just my paranoia.

@Acinonyx2 how is the fasting going? I hit half a stone weight loss and then half term happened and I have put on two pounds. A bit gutted but hoping I can claw it all back next week.

I had radiotherapy session 11 today - only four more to go!

Waving to everyone. x

I've been lurking, as I don't really have anything useful to say. I'm amazed by how you all reel off all the details of your tumours, but I suppose that those details determine how your treatment goes, so it's important stuff.

I'm swinging from 'GP said the lump is irregular and clinic have told me that I have to have a mammogram on arrival....it's cancer' to 'what a waste of time, it's going to be just a fatty 'you've turned 40' lump'. Appointment is on Monday, so not long to wait now.

@MrsPnut

People that had a port fitted, was it done under local or a general anaesthetic? I had my PICC under local and drove myself home but I am having a port this time because of a 3 weekly chemo cycle.

I had my port fitted with a local and was offered sedation as an option but didn’t take it. I found it fine and would have been OK to drive home, although I didn’t. It was slightly uncomfortable the first night and I didn’t sleep particularly well, although the fact that I was starting chemo the next day probably didn’t help.

Waiting for the post-surgery pathology is one of the more stressful waits. I was just thinking it's also invisible - people irl have no idea about it - they just think you had your surgery and that's it.

@barkydog and @lougle welcome. 2 major milestones coming for both of you - surgery/biopsy and initial diagnosis.

@AlbertCampion the fasting is NOT going too well. I'm overall - exactly nowhere and I think the problem is trying and failing to be separate wrt family meals. I wish I could make half term an excuse but dd being year 11 has just left school for 3 months now so I'd better get used to it.

How is radiotherapy going? Is the planning meeting long? Mine is on Monday. Still (after 6 weeks ) seeping brown fluid from some incisions due to glue-gate so a bit anxious about getting through rads.