Feeling isolated and down:( 2x chemo session to... - My Ovacome

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Feeling isolated and down:( 2x chemo session to go..

MartaCiom profile image
11 Replies

I must admit that I feel like I am breaking down lately. I am early stage mixed origin but as its a serrous component I am freaking out with every symptom being 'secondary cancer'. Spoke to my CNS and will be referred for cpuncelling. So far my husband is incredible supportive and attends every chemo session every 3 weeks with me. I was hoping for younger women from my husband's family side (my family lives abroad) to initiate and at least ask if I would like to have their company whilst receiving treatment (I would love that!) but I feel that every time the subject comes up their work appears to be more relevant or they have arranged their holidays and no one ever mentions it. I dont want to ask as I feel like I am begging for attention. I am angry! Really angry!! As I feel I need to go through this crapp almost by myself. It reminds me about the time my children were born having visitors at initial weeks but being placed on the side afterwards. So I am sad and angry - Friday blues I guess....sorry about the rant😉

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MartaCiom
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Caroles1 profile image
Caroles1

Hi love,

So sorry you are angry and not getting the support you need.

I am afraid when this happens to you you realise who your friends and supportive family are.

I don’t have a huge amount of family, but my close family were extremely supportive, perifery family not so. But also good friends that helped no end.

I lost friends who made it all about them and made false promises, (long story).

I think your best way forward is to get councelling or any support from the experts or groups that offer, sometimes they are of more help than family that should be there, but aren’t, which causes upset that you don’t need.

Don’t beat yourself up and don’t get yourself angry, the only one that is to the detriment is you, deep breaths and rise above it.

We are here,

Carole xx

Nancy222 profile image
Nancy222

Sorry you're feeling isolated, Marta. And this is just the place to rant.

In so many ways, life will never be the same. Sometimes we just have to ask for help. People really don't get it. Can you call one of your husband's relatives and just ask if they can come with you in three week's time? It's not begging for attention. And if that's what they think, maybe you're better off without them there.

For what it's worth, I've always told my husband that we need to pace ourselves. I want him at the oncolgist appointments, but I'm fine to go to chemo on my own. I actually like it because I don't have to make chitchat if I don't want to. I have my snacks at hand, lots of ice water, and I read, or have short chats with the other patients.

It's good that you're going for counselling. It'll help.

Edit: just read your first post. Young mother with two young children. My heart always twists for all that that moms go through. You're dealing with your own issues about cancer, AND holding a family together. Big big hug.

XXOO

Maus123 profile image
Maus123

Hi Marta. Chemo gets us down, so being angry is definitely allowed. Especially if you are young, with lots of demands pulling you every which direction besides having to deal with the illness, and trying a radical diet as you do/did.

Here's my silly question: Have you asked any of those girls outright if they would be willing to join you for a chemo session.. or visit you while you're there, maybe during lunch break?

My experience is that colleagues and family don't necessarily know how to help you, and they often have no idea what a chemo session looks like.

One of mine (in her mid thirties) is just not comfortable with the cancer topic at all. I sometimes think she is close to getting up from the table and walking away, when we happen to have a meal together and the subject comes up. However, she still wants to help, so she does that in other ways, which is quite sweet. E.g. she's offered to do my nails for me (and does them 10 times neater than I could myself) and keeps in touch through Whatsapp and phone.

My impression is, that especially the younger folks have often not been exposed to the realities of cancer and they just don't know what's actually involved. They might have seen horrendous pictures on tv though, of bald folks vomiting all over the bed during a chemo session, and find it very scary.

If you just tell them that the actual chemo is quite boring, that nothing much drastic happens , that you just sit there in a chair, nibbling on a biscuit while counting down the hours, and would love to have some familiar company to chat away an hour or two, they might be happy to visit you.

If they can't be bothered anyway, just stick with your trusted husband. Mine has accompanied me to every session so far (which is very comforting and also necessary, as I couldn't keep track of the timing for all the hands/feet cooling pack changes on my own, during the Paclitaxel infusion :) ). I'm sure it is dead boring for him too, especially when I dose some of the hours away. Actually, that's why we've discussed that I'd be fine without him there, if not for the cooling packs. A short visit would be just as helpful than spending the full 10 hrs with me. Bless him.

All the best with your last 2 sessions (and that the nausea stays under control)!

I've just done carb/tax (plus avastin) chemo #3 myself, so a bit behind you. Keep going.

Xx. Maus

MartaCiom profile image
MartaCiom in reply to Maus123

Thanks Maus. Well done with your treatment. I guess I had few days of attention seeking😉 but feel better now. In this new situation I just know who i can rely on. X

27-359 profile image
27-359

People are frightened by cancer and also, have no idea how debilitating and draining chemo is. At least you have your husband to accompany you. I attended all my sessions alone, but asked a different friend each time if they would call in for a chat and a coffee on treatment day.This was usually only for about an hour but it broke the day up. I have to say, I don't think it would have occurred to them if I hadn't asked, so perhaps you could do the same.

Jenny

Seasun36-uk profile image
Seasun36-uk

Hi Marta. How about asking some friends - straight out. You may be surprised at how many people do want to help. Some are scared & need a picture to be painted ie. it’s not that bad!

Sending you love & support. Try to enjoy today. Linda 🔆🌸🌺🔆

Yoshbosh profile image
Yoshbosh

I’m really sorry you are struggling, Marta. I definitely agree with asking directly if one of them could come, even for part of the session. I think people like the idea of being helpful/useful, but don’t necessarily understand or know what to do and need direction. I find being explicit in my requests gets me more help that dropping hints or hoping. Also ask if they will help by having the children for a couple of hours or cooking you a meal. I loved getting my meals delivered to me by friends and family as it made life much easier.

Vicki x

MartaCiom profile image
MartaCiom

Hi thanks all for your support and responses. Yes I have asked them directly roght at the begining of chemo sessions but clearly annual leave is too precious to wasye it on chemo. Sorry dont want to soundlike a baby as I obviously dont expect anyone staying with me for whole sessions. I had bad reactions to paclitaxel so prefer to have someone at intial 30min. My sister in law is a neuropsychologist so you would expect more empathy support and understanding. Prior to cancer i thought we were close but I feel as if i had a leprosy as its all over the phone and sometime I just need a hug. So I give lost of hugs instead! 😉

Nancy222 profile image
Nancy222 in reply to MartaCiom

It always seems to hurt more when family disappoints us, doesn't it?

Hugs.

CynD profile image
CynD

Thank you for being so open and honest about a subject I continue to revisit. What ARE the obligations of the people in our lives and do I really want anyone feeling “obliged” to be there for me? What expectations am I allowed to have of the people in my life and do they change depending on WHO I have expectations of? Is it possible I could really matter so little so many? Is that what’s even in question here?! WHERE IS EVERYONE? WHAT ARE THE RULES?!

Not long after June 2017, and for the first time in my life, I started to envy women that had husbands, children, and extended family to support them through the challenging journey into Cancerland. But then I remembered there is no worse “alone” then having people in your life that run the other way when it turns out you’re actually going to need them. I wonder how much harder it is for women with families to face the possibility of having to leave them behind? What must it be like to leave a husband you’d planned to grow old with, children you were supposed to see grow up, and friendships you’d thought would last a lifetime?

My own path has been decidedly non-traditional. Single with no kids, I was a musician/singer/songwriter/actress that had a great paying (soul-stealing) day job that kept me depressed enough to inspire some of my creativity. By my 30’s I was independent to a fault, and the envy of most of my friends, acquaintances, and co-workers. By taking the road less traveled I’d embraced my womanhood while forgoing the usual trappings of it. I’d forged my own path in a world of conformity – a modern day suffragette! By 40 all those feathers in my cap became proof of some defect. I was being evaluated not envied and the scrutiny was intensifying. Why WASN’T I married with kids? Either I was that ex-girlfriend every guy has dated at least once in his life – the one he refers to as “the psycho,” or I was gay. The truth is I had made CHOICES… on purpose. Being single and childless were intentional, not the result of missed opportunities or psychosis! At 50 I decided to go to college… for the 1st time… ever. It was when I realized just how far away I’d drifted from fitting into any of the demographics I might’ve once been relegated to. All the women my age in TV commercials wore neutral shades of cashmere whilst walking hand-in-hand with their silver-haired husbands on the beaches of Nantucket - this after a day of financial planning and discussing retirement as they navigate the purchase of a vacation home where the grandkids will come visit for the summer! I, on the other hand, was spending most days with a diverse bunch of 18-25 year olds who, like me, donned the duds of most backpack-toting college students: shorts, a t-shirt, and sneakers! Graduation was spent in the hospital where I moved abruptly from all things school to all things cancer. The revelation that 2 primary cancers would place my new and unused degree into a permanent state of “wait ‘n see,” showed up like a giant hole in the center of my world – one that I knew it was probably too late to fill with what I was gonna need to get me through this. I’d lost my parents when I was young, had no other family members in or out of town, no significant other, and no long-term friends. I think I was well-liked by my college chums, but they were just that – classmates. And the more peer appropriate women I’d met as professors and mentors, or through school and interning, represented new and untested relationships in my life – the nature of which required that certain boundaries remain in place until I was officially deemed a “colleague.” Suddenly I knew just how alone I really was and it was grim.

I was surprised who showed up for me. Different people came together at different times to support me in different ways, then, one-by-one, disappeared. Where did everyone go, and why? On with their lives, I guess, because life dictates that we continue to move forward lest we die too. Like them, I’m still moving forward, in increments of 3 months at a time, for as long as I possibly can, inching my way toward 5 years out with just about 4 ½ to go. But we’re on different tracks now, and the gap between me and them seems harder to bridge the further along we go. I’ve tried to put myself in the shoes of my friends and ask myself what I would do if the situation were reversed. What if I was as many years younger than me as most of my friends, with that much life ahead of me, and that much responsibility in my day-to-day? How connected would I stay to someone I’d only known briefly – however fondly I thought of them – and even though I knew they had cancer? Mayra was someone I’d met in grad school. We had a lot of classes together, worked on a lot of group projects together, and even interned at the same place. We grew a friendship even though she was 33 years my junior. When I got sick she took a powder and it really hurt and angered me to have to come up with my own answers about why that was. I had enough on plate. A mutual friend said she thought Mayra just needed some time to come to terms with everything. Time? How ironic. One night at about 10:00 p.m., Mayra showed up at my door, unannounced, with 2 bags of groceries in each hand and it was awkward with a capital “A.” I was hurt and angry and she was ignoring the 800 lb. gorilla in the room that was her absence. Then I had to square those feelings with the knowledge that all these ready-made healthy foods must’ve cost her a lot of money – money I knew she didn’t have – and how could she be so thoughtless and thoughtful all in the same breath? It didn’t take long for Mayra to break down in tears. I remembered how I’d clung to my mom after finding out she had pancreatic cancer. I loved her so much it hurt, but I was a teenager, and I was scared and I was angry with her because she was going to die and leave me behind and there was nothing I could do about it. So, sometimes, instead of being a loving and doting daughter, I was a selfish and angry child. The last time I heard from Mayra (the better part of a year ago) she had just started a new job. I haven’t seen or heard from her since. As much as I HATE that… I get it. I don’t WANT to get it because the part of me that feels isolated, alone, forgotten and ignored resents feeling like I have to give a pass to everyone that didn’t stick around because cancer is hard on people. But there is another part of me that knows there is a lot of complexity here and I’ve got to try and be my higher self in all of it. I don’t think a day goes by where I’m not grappling with where to go from here concerning the “friends” who have come and gone with my diagnosis, the people that didn’t show up at all, and well, it’s complicated. Another friend, a former professor of mine, has been there from the beginning. Her discomfort about my cancer shows up as an emotional disappearance rather than a physical one, but it makes me feel every bit as shitty. Now that my weight is back up and my hair is growing back, she’d like me to believe cancer is behind me. I wish this was just her thinking positive, but in fact it a very convenient kind of denial that shuts me down and robs me of my right to grieve the fact that I DO have cancer, and there is a lot of loss connected to that. We’re all grieving – or at least we SHOULD be. The loss of the lives we had before cancer, futures we were headed toward, the function of the bodies we once knew, our energy and stamina, even the hair that covered our heads, or gave expression to our faces. And what about the loss of the women that are no longer with us? But what is perhaps the most difficult, what I think you are posting about here, is the loss of our relationships as they existed before cancer, and what we perceived them to be. So please, don’t ever feel like you have to apologize for “breaking down” along the way. How could you NOT? There aren’t a lot of places to go with all that we carry, and I’ve come to realize that unless someone is living with or has survived their own battle with cancer, NO ONE, no matter how loving and well-intentioned, can know or understand what we face on a daily basis, the realities of this diagnosis within the uncertainties of life, or how to be in this impossible place we are all forced to inhabit. That’s where Ovacome comes in and shines! Still, it can be SO hard to come here because HERE is where the unvarnished truth of our plight resides as expressed by women I hold to be poets, heroes, philosophers, and even ANGELS. I happened onto this place with a question about my omentum, what it was, and would I miss it when it’s gone. I thank God for his hand in that little bit of synchronicity! Whoever YOU hold God to be, take comfort in knowing that therein lays a constant source of love and understanding amidst the chaos cancer brings into our lives. A long time ago I was given a book called “God Calling.” These lines (supposedly spoken by God Himself) have always stayed with me… “Do not need feeling too much. Feelings change. I don’t.”

Wishing you love!

…Cyndie

Harrygirl profile image
Harrygirl

Hi Marta,

I can so relate to what you and everyone else here has expressed. While the OC diagnosis is difficult enough, not having family and friends offer help can make it that much more so. What I have come to realize is that people give what they can, how they can and I have had to let go of a lot of expectations. Also, as many here have pointed out, often people are happy to help after I specifically asked for help with certain issues. It is tough-asking for help-I’m used to being the one who helps others, and am learning to leave my pride out of the equation. It’s interesting that people I didn’t know that well before all this have stepped up in ways I couldn’t imagine while some family members have kept their distance. It hit me really hard several weeks ago as I am nearing the end of my first treatment cycle, so I made an appointment to speak with the social worker. Talking to her helped validate what I was going through and gave me a safe space to express my grief over hopes lost and how to proceed. I appreciate it’s hard, but accessing support from different places would help you not feel so alone. Your clinical team should be able to suggest how to access local support people. This whole journey brings everything in life into sharp focus, relationships included. I hope you find the support you need; I know I have found this group great for helping me not feel so isolated. Big hugs, Christine xx

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