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

@MrsPnut I am normally an FF but otherwise quite a small frame and yes - they are certainly not pert! I have been told previously to having cancer that I would qualify for an NHS reduction. I can see the benefits - I'm just so hesitant to have extra surgery. I'm also having complete node clearance in any case.

I've just talked to one of the nurses and she's asked the surgeon to call me so we can talk more about it.

@Acinonyx2 Mine was done simultaneously so no extra length to the operation but also just so potentially, I don’t need further surgery later to match them up.
I’m glad I had both done at the same time.

I can join the surgery club now too: 8 June for full mastectomy on the left side. I was fannying about trying to see if the nipple could be retained then I had an epiphany, realising that I'd rather take all measures to reduce the risk of recurrence so want to get rid of it all. Hopefully the sentinel lymph will be clear, then radiotherapy & reconstruction/evening up months later. Disappointing as I had thought most of it would be done by the end of the year, but now it adds up to another year.

Kadcyla was also mentioned for me. I'm not thinking about that now, as right in the thick of the post-steroid onslaught of docetaxel side effects

@MrsPnut did you stay overnight in the hospital?

One night, the woman in the next bed was before me on the list and she had a mastectomy, implant and node clearance and she was also in over night.

I was discharged and home by 1:30 the next day, I didn’t sleep much but the morphine helps and there were 3 of us in our bay and we all had cancer. Two breast and one bowel. The lady with bowel cancer was in for 5 days which is tough.
I came round from the operation at about 6pm, I was in recovery for a while waiting for some day cases to be discharged that were delayed but I had 1-2-1 nursing in recovery. I got on the ward at 9pm and straight into the tea round and meds.

Hi Fizzy I don't remember much pain in fact the painkillers I brought home are still in their packet. I was moving around slowly and a bit stooped for a while but I was able to get up and down stairs alone. Good news about the ESA it's great to be put in the support group I was always worried that I would miss sending in a sick note.Have you seen the stoma nurses?I met with them before my op and found them very reassuring.

I am also struggling with the thought of going back into my previous life. Before cancer I was about to start a new job in a&e working in mental health liason. It would of been a demanding and challenging role. Now I don't feel capable of giving others a paracetamol and I barely cope with my mental health so how could I be of help to others?
I found even the thought of looking for a new job made me anxious so I have decided to try to fill my day with other things I have registered with Penny Brohn who are still only offering zoom and telephone support . I ' m starting couch to 5k next week. I garden a lot I have so many young plants I don't think I will have space for them
Yesterday we went out for our first day out in a year and it was lovely.
Love to all x

@Liz, that is very reassuring, thank you. So for the ESA support group, are you no longer expected to send in sick notes? No, I haven't seen the stoma nurses - I am currently waiting for my telephone appointment with the colorectal surgeon and have some questions for him. This appointment wasn't scheduled in for my previous operation date so I am wondering why it got missed. I know what you mean about going back to your old life - I can barely remember mine and find the thought of being a 'normal person' very strange. I think that everyone expects us to bounce right back once the treatment is over but it really isn't that simple.

@Acinonyx2 I had a normal breast reduction surgery years ago and it was one of the best things I've ever done. While I haven't had a mastectomy, based on what I know about that operation, a normal reduction is far less invasive - they just do a little cut under the breast and remove some tissue, hike it up, sew it back together, maybe a day or two of a drain. You may also risk some new back problems if you aren't a bit more balanced "up front".

Starting two week quarantine tomorrow in advance of ooph (BSO) surgery on 30 April. Truly excellent timing to be under strict household lockdown while everything else is opening up. Surgery is dependent on high enough neutrophil counts on the 27th, though, so I will be majorly pissed off if it is called off after a week and a half of isolation.

I had my surgery on Monday lumpectomy with reconstruction and sentinel node biopsy. Everything went well more discomfort than pain. They gave me co-codamol and ibuprofen as pain killlers to bring home but haven't taken any since Tuesday. I was due to have my drain out tomorrow but the breast care nurse saw me today and wants to leave it until Monday she had a look under my dressing and says its looks good. I'm feeling really lazy just sitting around but I had a lovely walk yesterday with DH (and coffee and a cake in the sunshine) and I might walk along the seafront later when he comes home from work.

Hi Fizzy I was told no more sick notes were needed (don't just take my word). I went to get my eyes tested today when I said I was on ESA I got a free eyetest and a good discount on my glasses. Not sure if you wear specs but if you do need new ones do it now.

@HerbalRefreshment I've only to isolate for 3 days here, fortunately.

Thanks for all the advice. I've got a phone consult in the morning to talk again about the surgery options. I know it would be for the best I'm just so squeamish about the whole deal.

@Lizdeflores I sat down and told myself I just had to get on with my chapter today. I got it out and opened up the word files. But I was like a horse that won't jump a fence. And I had to admit defeat - my mind was spinning and bouncing about and I suspect I'm not going to be able to look at anything like that before surgery at least.

@Liz you were right, I rang the DWP and no more sick notes are needed, it is a relief to have one less thing to remember. Thank you for the tip about eye tests too!

CT this afternoon. Followed by echo and MRI on Tuesday morning and meeting with Oncologist again too. I am a bag of mixed emotions. Hoping desperately for stage 3 but preparing for stage 4. Then hoping if I am at stage 4 that I respond to treatment.

The BCN did request to the GP that I have my second vaccine and it is booked for Monday. I’m also having my coil removed and have been taken off HRT. I’m not looking forward to heavy periods again. The GP queried my need for sleeping tablets - so tell me what’s going on with your sleep then? ‘I have to be careful not to use them everyday because they can be addictive’. It took me all my time to not to tell her of F off. So patronising.

In other news, I tore a strip off Barclays for their continuing appalling customer service and received a round of applause from the queue and had a mini melt down in H & M at the thought of not seeing the girls choose their wedding dresses. I’ve told DH he as to go and make it special. I’ll admit that I would be jealous of the thought of anyone else doing that. Cancer is already making me see life (and death) very differently.

Good luck with your surgery options @Acinonyx2 and anyone else waiting. In surgery I’ve had in the past it’s been discomfort rather than pain I’ve experienced but like all things it’s the thought that is possibly hardest!

@JeanLannes hoping for good news from your CT - I was in your place last year. The most nervous I've ever been about results was going for the CT results - and it did make my stage 3 seem like a much better outcome when it was clear. I was so anxious coming downstairs that morning I felt I might pass out. Of course we have lots of posters managing at stage 4 but let's put that aside for now as odds are you are stage 3 at most.

Try not to catastrophise too much thinking about your kids - I know that's my Achilles heal - will I be here for this - for that etc?

Just spoke to my surgeon. He's got to check whether he can do both breasts next Thursday given it's only a week away and he may not be able to book the extra time/help. He asked me what I would do if they had to do it in 2 ops and I just don't know especially as I will be on another chemo drug for 10 months which can affect blood clotting and healing. If I'm really going to do this - I just want it all done and dusted. So does he - but it's not entirely up to him.

Waiting for a call back this afternoon from the booking lady....

@JeanLannes keeping everything crossed for your CT this afternoon. 🤞I am regularly having mini meltdowns if I start thinking too much into the future. I never had this emotional concrete block pressing down on my chest all the time when I was initially diagnosed. And I never understood how people can get so profoundly changed by the experience. It was very much business as usual for me. But this reoccurrence has completely changed my outlook on everything. It HAS changed me profoundly. Absolutely. Completely turned me inside out. It has disembowelled me emotionally so much.

Spoke to my BCN yesterday, she was so reassuring and told me the “old injury” is nothing to worry about. That the bone scan is for extra reassurance because I had reoccurrence. That calmed me down a bit. 12 days to go...

@Acinonyx2 I hope your surgery is in one go, done and dusted, as you say. I am sure they have taken your 10 months of chemo (drugs) into consideration and will do everything they can to do it in one fell swoop. Sometimes things come together at a very short notice. 🤞

Was thinking of not dyeing my hair again now that it has grown into a messy pixie cut. But then, this grey hair that has grown in place of my usual colour reminds me too much of the bastard cancer, so I will probably start dyeing it again. Leaving it short & cropped as this was how it was before I had started chemo.

And another thing... I have become so laissez-faire with money! I buy anything without any regret. While before I would always dither, umm and ahh, do I need it, etc. But now, to hell with it, I am buying it. Same with home improvements. My DH is so cautious, not now, later, etc. Whereas now I am f* it, I am going to get that floor replaced in the main bedroom (ancient sanded floorboards which are damaged in places so that they give you splinters if you walk over them).

Same with eating - I eat cake when I want to! Life is too short to keep saying no to nice things most of the time.

@balkanscot we actually have some money issues this year and boy I really need to reign in the retail therapy!

My girls were taking full advantage of my ‘yes you can’ to every request yesterday. Not my normal stance!

@Acinonyx2 I hope the fates align and you get both done at once.

@balkanscot I’m the same, think nothing of buying stuff just because. I think I’ve spent about £300 in the last week alone. Some stuff because all my tops now drown me, some just because it looked pretty.
In fact we are having KFC for lunch delivered by just eat as a treat for DD2 because she has washed my hair this morning and walked the dogs.

I had my drains out yesterday and dressings changed but the shower I am craving has had to be postponed because these dressings aren’t waterproof. It is a relief not to have to gather up my drain bag to move but I still feel grotty just having a strip wash.

@JeanLannes Good luck for your CT this afternoon.

@JeanLannes thinking of you this afternoon and hoping it is the outcome you want. A round of applause in Barclays - you go girl! Cancer has given me the voice I wish I had had years ago. DD listened to me leave yet another message on the chemo line the other day and commented, 'you even sound pissed off on an answer phone', well that's because I am! I am with you on worrying what I am going to miss but mixed in with that is the thought of my DD being without me and that is the most painful thing of all.

@Acinonyx2 I would want it all done in one go too, I do understand that. I would want to feel it was something ticked off, not still a part of it to come. Is the booking lady ringing you to see if it can be done in one go?

@balkanscot I too am the same with money! I used to be quite careful but now if I see it, I'll buy it. I have several pairs of lovely pyjamas ready for when I feel better, still in their packaging. I don't want nice stuff contaminated with any association. Last night I was browsing (it is all I can concentrate on at the moment) and another 2 pairs fell into my basket. Hardly a massive extravagance but in my old life I wouldn't even have been browsing.

@MrsPnut the strip washes are grim. When I had ascitic drains I had to keep a non-waterproof dressing on for several days so was told to wash like this. Do you have a hand held shower? I washed my top half at the basin and then held the shower on my lower half just to wet it quickly, steady it between my knees pointing backwards, soap then rinse off. It is a bit of a fiddle but worth it if you can. I felt very paranoid, so held a towel over my dressing so any stray drips didn't land on it.

Hello everyone I hope it's OK to post here. I have just been diagnosed with breast cancer. It's Grade 2. We don't know the stage yet. I have had a scan of my lymph nodes and they seem clear. I just don't know if I can do this. I also have calcification in my other breast that I'm concerned could also be cancer. I don't know how to get through the next stage between diagnosis and having a treatment plan.

Thinking of you* today jeanLannes*. I am only a few weeks in to this and was all over the place waiting to see if I was stage 3 or 4. It was an experience that has changed me forever. Propanol from the GP helped, the sleeping tablets less so but meditation has been my saviour.

I have found some positives from all of this in that it has given me a sense of freedom. I no longer give two fucks about loads of stuff that used to bother me. I'm decorating my very neglected home, spending money on stuff I like and enjoying being off work hanging out with the DC's. I also feel so loved by so many people, it has really changed how I see myself.

I still woke this morning in disbelief I have cancer though. Still seems so surreal.

Sending good vibes to those recovering or about to have surgery

ChickenandLamb sorry you have found yourself here. It's such a shocking time. My GP's were really great for extra support whilst I was waiting.

@ChickandLamb this is the toughest part - waiting for the plan and to get started on treatment. What/when is your next appointment? Have you had a biopsy? Good that the nodes look clear (always handy to keep the better news in sight).

Seems incredible but you will get through simply by putting one foot in front of the other and getting through the minutes, hours and days one at a time. Try and do some useful busy work if you can.

@FizzyOrange yes the booking lady will ring. So of course I am just floating about basically listening for the phone....

@quinin what's happening with you - what's your next step? (I can't keep up....). Definitely some worries seem rather pointless now.

Thank you @quinin and @Acinonyx2 I know that the only way out of this is through. Reading about other women who have gone through similar and are still going is inspiring. I want to go and bury under the duvet and cry but I won't. (Yet).

Next appointment is a week today. They have told me it's small (about 1cm) and oestrogen positive which is supposed to be good news. I will have surgery which will give more answers in May.