Struggling

  • 8 replies
  • 3 subscribers
  • 896 views

My best friend is going through chemo at the moment but she is really struggling. She is having really bad side effects and has said she wants to give up with chemo, this is her 2nd dose, she ended up in hospital after the first dose as she is neutropenic and suffered with paralisation, it was awful, anyway MRI scans later and she has tumours on her spine, fast worward to last week the results from another scan and these tumours are renigh, thank god.

This time she is so poorly again, feeling sick, dizzy and just exhausted with it all, she has said she wants to give up on the chemo totally and take her fate. I have basically tried to be as optimistic as I can however I dont want her to give up. I get that she is hurting but surely its for the best and the outcome should outweigh the feelings now. I just dont know what to say to her at all. She has a scan tomorrow to determine whether this drug is working or whether they are going to change the drug, this in itself is worrying her too. I know its the unknowing and I really do think she will give up if its not working, this is what I am dreading. 

She has so many allegies to everthing it seem she is getting everu side effect going, which is scary in itself, every time she has to have a scan, she has to have the crash team on standby!

She is on EX at the moment, if this proves not to be working then its DP? I may have got them wrong, I am sure thats what she said.

Have you had patients wanting to give up or have given up? What can we do for the best, she hasnt even told her mum yeat, just myself and her partner, he isnt taking it very well, but likeme has said we will support her decision even though it is breaking us

I am sorry if this sounds garbled I just dont know how to come across without it sounding selfish, I dont want to lose her and I kow her other half doesnt 

The cancer is IBC in lymphs and into the 2nd breast. Like I said we dont know if the chemo is working yet, I think if the scans tomorrow prove it is then I may have her back but at the moment its not looking good and like I say she is ready to throw in the towel.

  • I am really sorry to hear about your friend. I ended up with neutropenic sepsis when  I caughtca cold during chemo and I can empathise with her as you do feel absolutely dreadful, I also used to get really bad side effects however the consultant decided to reduce my dosage of chemo which did help a lot. I was still fatigued etc but it was mmanageable. Personally I think my decision to continue would be based on my prognosis. If the treatment is regarding palliative care then I can understand her feelings a bit. However my mother in law is terminal and she was only given to January and is still going with chemo. She needs to be really honest with her consultant as sometimes there are other options, I am obviously no expert but can only go by my experiences what is harder is that she was neutropenic after the first cycle so she won't really have a clear indication of what all the side effects are truly like normally. I was on a 3 weekly rota and found the 1st week and half really bad but then started improving so I could get my strength up a bit before the next cycle began which helped to make me believe I could do this. As a friend unfortunately you just need to be there, as you obviously are, listen and help to highlight some of her options available. It will be tough but make sure you have a support network around you aswell. I have made friends with a woman whose partner is going g through treatment at the moment where I am and it helps us both as we can look at things from both perspectives, patient and supporter. We now message each other if we need to a chat, or a cry etc without necessarily having to involve our partners. Sometimes you need to talk to someone who isn't emotionally involved so you can have th Ercall honest conversations without hurting anyone. I wish your friend all the luck in the world that she can find a way to stay positive and beat this and you remember to take care of yourself aawell x

  • Thank you so much for your reply, I really do appreciate it.

    They arent talking paliative, they are talking surgery around Dec and then radiotherapy. There is hope but at the moment she doesnt feel like she has much. She is absolutely worn out and it doesnt matter what we say to her. She lives in the here and now, and whats happening to her is affecting her now. She like you has her bad weeks, she is also in 3 weekly cycle and like you exactly the same bad days, its when she is in isolation and has too much time to think. She also tries to do too much when she is feeling slightly better then wears herself out and makes herself poorly. I guess its finding the balance. But she is very head strong. I dont think her partner helps her a lot, he is all gung ho then all woe is me. We are all trying to be as positive as we can be and strong for her, we shed our tears when she isnt about. I cook for her and try to do what I can without being too intrusive.

    She is worried about her weight gain, I said to her, its ok she will lose it soon enough, steroids are the worse for weight gain. So I believe its an amalgamation of things. I just dont want her to give up, but also know that when she gets something in her head she is very stubborn and will see it through.

    She was speaking with a lasy in chemo the other week, who had a wig (she was adamand she didnt want a wig), but the lady she spoke to looked ace in hers, so she went along with it. I think it is getting her to speak with others, but there isnt really anyone in the chemo room she goes in that is her age (35), she says they are all a lot older and have different type of breast cancer, so again its difficult for her.

    Thank you for letting me garble on and I hope you are doing ok. Can I ask how far into your chemo you are and what stage your BC was? I dont mind also if you dont weant to tell me.

    x

  • Hi 

    I don't have been mine was in my cervix, ovaries and vulva. I had surgery to remove the latter 2 which was successful. There was a 15cm mass on my ovaries, so they removed both plus my omentum and did a radical vulvavectomy. I also had to go back in to hospital to have stents placed in my ureters as the cancer was crushing my kidney.My cervical cancer was classed as stage 4 and was a 9 cm mass with some lympnoid involvement. The initial 6 round of chemo shrunk this to 3.5 cms. I am now currently having chemo and radiotherapy combined for 5 weeks and then brachytherapy, which is internal radiotherapy. I am only on the 2nd week, it is very tiring g as I have an hours travel for the treatment and the radiotherapy only takes about 20 minutes in total. 

    In regards to a wig, I thought that I would want one as I have always had long hair and the macmillan team even arranged the voucher for £120 towards one but once I shaved my hair off I found i looked ok without it. Dont get me wrong I cried and it took me about 15mins before I could look in the mirror but now its fine. My sister did hers aswell for brave the shave and my son and mate did it. I told my sister not to but it was something she felt strong about as a way of support. I have attached a photo of me and my sister. I am the really bald one.

    Through treatment I have made friends and it helps sharing experiences. I have become really close with a couple where he has tongue cancer and she goes to all of his sessions. We have swapped numbers and talk outside of the sessions to support. She was struggling of how to support him and we talk through things from both of our perspectives which is good. I talk to people of all ages and different types of cancer. No case is the same and everyone responds differently but you just have to have hope. 

    Take care. Always happy to talk x

  • Oh wow, you are really going through it, I honestly have huge admiration for your positive outlook, I think that helps because as you say the NHS really do need to get their act together with the wait times, the follow ups etc etc. It is so disheartening.

    My friend took a turn for the worse yeaterday, she collapsed at work with chest pains, after numerous tests they actually think that because they stopped her blood thinners her circulation isnt very good, we thought this on Sunday when she was getting pins and needles, but of course thought it was just another side effect, but nope. Anyway long story short (my friend works in the hospital). So in with the consultant after tests and x-rays etc, she point blank refuned a CT scan with contrast as she crashed last time, she has an allergy to the dye. So back to the consultant. The consultant said I see you had a scan for the tumours on your spine and they were benign, my friend said yes, the only positive ive had up to yet, consultant said and yesterdays MRI, my friend said are the results back then, the NHS told her they wouldnt be back for 2 weeks, anyway they were so she asked for the results. After some iffing and arring about whether or not she could rerad the results, she in the end did. In her left breast the lymphs have significantly shrunk, and in the right side (the bad side) they have also shrunk and the tumour, so what a relief. Now my friend does feel a lot more positive, I think if they hadnt shown any change she would have stopped with chemo altogether. But now she can see improvement its good news. She does think she will have to have the one breast off because the size of the tumour is quite big and they may not be able to do the lumpectomy, but hey ho, she will be ok with that.

    This is a major step in the right direction and we are over the moon, as you can imagine. Its still a horrid rest of the journey for her, we are hoping that she will get less and less side effects and have more better days than bad days, but its working and that was the news she needed, well we all did. 

    My father in law had jaw and tongue cancer, he did amazingly, he had a feed tube, which he actually hated and refused, he taught himself to eat again, softs like mashed potato and soups etc, but in the end he was eating pork pies etc. He dies a few years ago now, but it wasnt the cancer that killed him, he had major heart problems and needed another heart bypass but wasnt strong enough, in the end it gave up on him and he had a massive heart attack. 

    I thank you so much for your messages, it has lifted me no end and I can go back to my friend with more positives.

    We have a meeting with the cancer consultant on 4th Sept, I asked my friend to write down questions etc, and I am going to also 

    I wish I was brave enough to shave my hair to help her but I definitely have a face for radio me haha.

    You take care of yourself, huge hugs to you xx

  • So happy to hear the positive news about shrinkage. I remember waiting for scan results to come back and it was a nightmare but when you hear the treatment is working, it definitely helps the mind cope with the side effects. Maybe she needs to think aboutcwork aswell as thatcis potentially tiring her out and you have to take the rest when you need it. I appreciate sitting around at home gives you more time to think but you have to weigh up all the options. You do need to get out of the house whether that is a short walk or maybe out for lunch when you are up for it but she shouldn't try to over do it. You really need to listen to what your body is telling you. 

    Sending hugs and positive thoughts to both of you. Xx

  • Hiya, I am so sorry I haven't checked in sooner. I really hope you are ok 

    My best friend had her last chemo on Friday, she has a scan a week today 21st Nov. But doesn't have an appt with plastics in Leeds until 6th Dec. Now to me that sounds like an awful long time. 

    I am guessing you don't have any answers but like I say I am just checking in 

    She is having quite bad reactions to this last chemo but, it's her last so hopefully, there's light at the end of the tunnel. 

    Xx

  • Hi,

    I have finished my treatment now thankfully. It was hard going as I was admitted i to hospital again on the 5th week with an infection in my kidneys. I had surgery to replace the ztents and had to have calcium, magnesium and potassium infusions. I came out one day and the radiotherapy continued the next. I was too unwell for my last chemo session though. I really struggled with the brachytherapy as I had to lay flat for 48 hours, it was so painful as I suffer with my back any way. I now am in the process of the 3 month wait to see if it has been successful. I find out on the 16th January. I am still really tired and have pain but I am trying to get out a bit more. The waiting is terrible so I feel for you all going through this but we just have to live in hope that it has worked, and if more treatment is required we pull on our big girl pants a d work through it. I am sure your friend really appreciates everything you do for her. I ha e a friend who has been my rock and I don't know how I would have got through this journey without her. I plan on treating her lots next year once I am feeling better xx

  • I am so crap at the replying lark and I do apologise, I have horses so we are really busy with them being winter and all that.

    My friend has been given a date so the surgery will take place on 13th Dec. Next week we are going away for the weekend, just to relax a little, recharge some batteries for the next chapter. We should get the last MRI results either today or early next week. Last MRI shown benign tumours on her spine :( I am praying there is nothing else. If there is we face it head on but I know she hasnt an awful lot of fight left. Personally, mentally and physically she is close to breaking point. But like you say big girl pants and tackle it. I am there every step of the way with her, along with her mum. 


    She seems to be out the other side of that last horrid chemo & the side effects getting her every which way. She had her first counselling session yesterday too, I hope this will help her. She is such a strong person but I know this is close to breaking her. One final push now to get her through the surgery and then radiotherapy etc. She has opted for removal, and will face reconstruction at a later date, which to be fair I have read up on and it seems the best way to go about things. They ar ereally worried about her and the anasthetic as she is allergic to so much, anyway 2 specialists are going to be performing the surgery to cut the operation time down by half (hopefully with no complications)... 

    Wow you have had an awful journey too, I really feel for you, I dont think anyone has a real understanding of just how awful this can be for people going through it, I for one never did. Yes I have known people with BC and other types, my father in law had throat cancer. But to actually see this first hand is absolutely heartbreaking for all concerned. 

    I have everything crossed for you for the 16th Jan. Bracytherapy sound horrendous, you really have been through the wringer, and I send you a huge huge hug.

    I am hoping she just gets the *zapper*. I know she has to go every day for 4 weeks, but saying that, we can see the end and thats all that we are aiming for now. At least we have a plan and can get her through the other side now.

    I will try and keep up with messages, but like I said I am crap lately.

    My best friend and I, she is closest to the camera, I am the football hooligan Joy lol 

    Sending love xx