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

@haunteddishcloth and @babamamananarama - I’ve just caught up with the thread and seen your recommendation for the Seachange retreat. I’ll have a look now.

Hi I'm new. On June first my mum died from endometrial cancer. Her funeral was last Wednesday and this morning I collected her ashes. This afternoon I went for my biopsy results and was told I have stage 2 breast cancer, and need a mastectomy. I'm 53, and had breast cancer when I was thirty as well. I'm still in shock after losing my mum, so today's diagnosis is very inconvenient.

I'm a single mum to a grown up daughter who lives at the opposite end of the country to me, and two boys, 14 and 12. I can't tell them about this so soon after losing their granny.

I will be fighting this completely alone, no friends or family left.

I hope I can be as brave as the previous posters.

@Elle200 I’m so sorry to hear about your diagnosis hot on the heels of losing your mum - no wonder you’re in shock. Is there anyone around you that you can talk to and offer practical support - even parents of your boys’ friends? I hope that with a treatment plan you’ll get a clearer picture of what kind of help you’ll need and it will all seem a bit less overwhelming as you shift into coping mode. For what it’s worth, I know a lady who’s just come through bc treatment also as a single mum to two teen boys, and they rose to the challenge beyond her wildest dreams. It’s not what anyone wants, but you and they will get through this.

One other note of encouragement Id offer is that treatments have come a long way even in the last fifteen, twenty years - it stinks that you’re having to deal with a diagnosis again, but you may well have more or better options than the last time around, too. In the meantime, we’re here if ever you need to vent!

@Littlestelephant Any news on your pathology yet?

@Elle200 So sorry to hear you've not only lost your mother recently but had that diagnosis as well. We'll support you as much as possible on this thread so do please share whenever and whatever you'd like to.

Thank you both, @backformore and @HauntedDishcloth, I appreciate your kind words and information.

I need to find out much more about this cancer, I want to be informed.
Last time I just breezed through the surgeries, chemo and radiotherapy as if nothing was wrong with me, I just have a feeling this is going to be much much worse. My poor boys, their father is not involved, DV, so they are as much on their own as I am, they're not particularly close to each other.

Sorry I'm rambling now, will stop here.

@Elle200 welcome to the thread. Ramble away, you are among friends!

I lost my DF last month suddenly, and it just seems unfair that after going through cancer treatment the blows keep raining down. I am sorry for your loss, and sorry you feel so alone. Your life has been tough but recruiting support to help you get through treatment without compromising life for your DC too much is going to be a priority. I guess they are both at secondary school. Are you working currently? I wonder if Macmillan can help you look at what help is available locally, both financial and practical? Sending hugs x

Regards to all. Having an uncharacteristically quiet day today after yesterday’s hospital fun.
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Im in a bit of a rage today as turned up for chemo after a horrendous journey through traffic jams etc, only to be told it had been cancelled.
Consultant had cancelled it the afternoon before but not informed me.
Nearly 30 mile trip for nowt. Reason for cancelling was my neutrophils are slightly before the cut off point, .025 to be exact! Fair enough, but someone should have let me know. Now got to trudge all the way over for bloods and covid test next week and then chemo another day. Bloods at Hospital Covid test another couple of miles up the road at another venue.
I had plans for next week that didnt include hospital visits, b**ger !

below cut off point that should say

Thank you @TopOfTheCliff. I'm sorry to read of the loss of your DF, its a dreadful time isn't it?

I don't work I'm ashamed to say, we live on benefits and I already get DLA for other health problems. I'm having a bilateral mastectomy at the end of July/beginning of August.

@thereisonlyoneofme I would be totally fuming! Poor communication drives me crazy. So close - sounds almost like some kind of automated cut off by a robot

@Elle200 hope you find support here at least. This is a good time not to be working OTOH - but OTOH can be socially isolating.

@TopOfTheCliff let's hope you get a long hospital free stretch from here on and get back to the water.

I have been feeling a bit off after Tuesday's Kadcyla - not really ill but enough to be irritable and finding work challenging. Dh had the temerity to request my input on a couple of non-emergency issues an hour before today's deadline. Feel like I might bite the next person annoys me....

@Acinonyx2 I've been just a bit "off", too. Felt slightly woozy last night and have hit my afternoon slump harder than usual. But I'm wondering if that might be down to my period kind of sort of mildly reappearing yesterday for the first time since March?!

Just had my consult with radiation doc. She's not going to radiate my armpit as lymph nodes clearly don't need it, which is great. Still wants to do lumpectomy area, though, for fifteen zaps. Apparently there's a study to see if the same results can be achieved in five zaps, but you have to sign on to it for that option, and I figured at this stage I'd rather not be a guinea pig. So, that's my July planned...

@backformore I read the study and was all set to try the 5 only - but I need all the nodes - neck and chest so that's out.

Have you started Kadcyla already? I will have to stop for rads as they are going close to the heart and there is a combined heart risk with Kadcyla. So just had one to get started.

Just making dinner. Resentfully.

@Acinonyx2 Yes, I had the first Kadcyla on Tuesday (when I’d been expecting to have Herceptin as usual, but my onc brought it up at our meeting beforehand and we agreed to try switching). Funnily, my radiation doc said the main risk was to the lungs (though I do get heart monitoring already) and as far as I know it’s not going to change my radiation schedule. Interesting. Will ask about this when I go in for the mapping scan…

@backformore oh so we had it same time. You're not having that kind of radiation though as they are not doing the nodes. And I think I do mean lungs not heart, duh! There are nodes in the chest over the lung, that's the problem. I'm not really sure the risk justifies the delay but they seem adamant about it.

@Acinonyx2 I'm sure I've heard them mention protecting the heart, too (this is part of the controlled breathing that we'll have to do, apparently - to create space in the chest wall away from organs?). Just as well that they're not taking any risks!

I think my doc is still wanting to do nodes, but only a limited area on my chest, not into my armpit. Should have a clearer idea once I've been in for all the mapping, etc.

Hello everyone. So many new names since I last posted. Sorry I haven't been on much on the last thread but wanted to check in. During last 6 months of chemo I found it difficult to concentrate and by the time I read through a few posts had lost my train of thought and gave up. Total brain fog.

Quick intro. After months of tooing and frooing due to pandemic I finally had transanal op to remove suspected precancerous lesion in rectum. Pathology showed cancer within this so progressed to full anterior resection of bowel with emergency total hysterectomy due to endometriosis and given a illeostomy. Lymph node (stage 3 rectal cancer) involvement meant chemotherapy which I completed last week. Due scan next Tuesday and not sure what happens now. Feeling the cumulative effects of chemo. Totally exhausted most of the time but coping reasonably well and staying as positive as I can.

My DD only child has had few panic attacks since my diagnosis. She's about to turn 18. Thankfully as she sees me coping she has been better but I worry about her level of anxiety and feel incredibly guilty I've been the cause of this.

@Bloodybridget good to see you coping well with chemo. Have you made decision re moving

@Thymeout How are you. So grateful for your advice in my pre and post diagnosis.

Sending everyone the very best wishes on whatever stage of this bastard disease your at.

Just popping in to say hello to @gillmoregirl, it's good to hear from you. You'll be glad to have finished chemo, and I hope you start to recover from its horrors soon. Also that the scan brings good news - quite understand if you are feeling apprehensive. And I'm sorry your DD is struggling with anxiety. One of the really hard things about serious illness is its impact on people who love us, I have apologised to DP so many times.

I haven't been on here for a bit and am not feeling great atm (migraine as well as drug side effects) so will just say a general hello to all, and a warm welcome and sympathy to newbies.

@Elle200 I think you are amazing to manage raising your 2 DS on Benefits and DLA. To escape DV and deal with cancer as well is really tough. Don’t be ashamed, that’s what benefits are for. When life is easier again, as surely it must be eventually, you will be able to look at how you can contribute, but for now you need to concentrate on getting your little family through this.
When do you get your results? Have you met your Breast Care Nurse yet? Mine has become a real friend!

@gillmoregirl nice to hear from you again. It has taken me six months to recover from chemotherapy but it does happen! I graduate from SafeFit next month and will have to let go of my lovely Zoom trainer so she can take on @Acinonyx2

By the way I had the five days FAST forward radiotherapy course. It was published in the Lancet in April last year as just as effective as fifteen so my hospital adopted it during Covid to reduce visits.

It’s nearly time for a break from hospital for me, just Herceptin no 13 on Saturday then some time off. Hooray!

Best wishes to all, for tests results and treatments
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@TopOfTheCliff Thank you lovely. I'm sorry to read about your DF. Not sure what Safefit is. Is it an exercise programme. I'm afraid I was very lazy during treatment I couldn't find motivation to do much. I need to get back walking and try to regain my fitness and lose a few pounds which I've gained this past while. I hope you are keeping well xx

@starmer. Sending best wishes to you also. I hope you've kept well since end of treatment and going back to work.

@gillmoregirl
Lovely to hear from you! Hoping your scan brings good news for you and dd.

Funnily enough we're back in the same boat. I had my second routine monitoring scans this week,but no idea when I'll get the results. My next appointment isn't till the end of July, but I won't be able to wait that long. Might give it a fortnight and email my Macmillan nurse.

@Bloodybridget Sorry about the migraine. Hope it's not holding up the garden makeover too much.

Best wishes to everyone else.

Hi
I am new here just found this board.
I had a lumpectomy for breast cancer 8 weeks ago if anyone wants to ask me anything about that?
Radiotherapy in July and it is all condensed into 5 sessions!
I would be very interested to hear from anyone who has experience of this.
Thanks

@gillmoregirl the SafeFit trial was brought in to give NHS cancer patients 1 to 1 coaching in diet and exercise online during Covid. It is sponsored by Macmillan and run by the University of Southampton. Anybody treated on the NHS can apply during or after treatment.
I have had wonderful Zoom sessions with Mags from Scotland and will be sorry to part with her.

@Bin85 welcome to the thread, The radiotherapy is much less tricky than surgery. You have a planning session once your surgical wound has settled and they mark you with tiny tattoos to place the machine. For the five intense blasts you have to get into position with your arms above your head so it is worth doing the shoulder exercises diligently after surgery. You have to hold still for about ten minutes but it isn’t painful. I was lucky and had very few side effects although some people get sore skin or feel very tired. The week passed in a flash for me.
Did you have any nodes removed? This sometimes makes the shoulder a bit tighter after surgery.

All the best to everybody
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Hello all.

Not posted in while, I've found that whilst looking after DCs and dealing with the million appointments that turn up, and the fatigue from chemo I don't seem to have a lot of time left over!

Last week I had a clip placed in the tumor, and lymph node biopsy as something showed up a bit odd from the MRI. They scanned it again and biopsied it but he didn't think it like anything suspicious, although I've heard that before! But it's a 2 week wait to find out

I also had blood taken for BRCA gene testing before last chemo, and that has a 6-8 week wait for results.

They did pile on a load of extra anti sickness meds for this latest chemo, which so far has helped the sickness a lot. Didn't end up back in hospital this time a least, although other side effects have been worse. Swings and roundabout I suppose!