I am 5 months post chemo and am letrozole. I am in a lot of pain and am crawling up the stairs. I am a day patient in the hospice who wrote to the gp to say I needed pain meds. The gp wrote to the consultant to say they needed to deal with it. I saw the consultant just before lockdown who said it was down to the GP.
So I am on lockdown, not been out of the house for 8 weeks. I am trying to homeschool my 10 year old autistic son who is struggling to say the least.
My mum died 3 weeks ago also from Ovarian cancer and I couldn’t go to her funeral. I didn’t get to say goodbye. I don’t have anyone to talk to anymore.
I saw a post this morning that said someone is missing you more than ever during lockdown and I know that’s not true for me. No one is. No one would.
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CountryChick78
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I’m sorry to hear that you’re in so much pain and having such a difficult time at the moment. We’re here to support you, so please do call our Support Line on 07503 682 311 or 07493 703 967 if you’d like to talk things through. I'm sure our members will be along too with their kind words of support for you.
I’m not sure whether it’s the Consultant at the hospice or your oncologist who your GP contacted, but it’s important to manage your pain and I’d encourage you to get in touch with the hospice today and tell them what’s happening. As well as being specialists in pain management, they may be able to offer psychological and other holistic support to help you. You could also contact your CNS or key worker at the hospital, if you have one.
For support with your son and homeschooling, you could also contact the National Autistic Society (autism.org.uk/services/help... on 0808 800 4104 or Mencap on 0808 808 1111, both of which can offer advice and support about autism (mencap.org.uk/advice-and-su.... Both helplines close at 3pm and Mencap’s reopens at 9am and the National Autistic Society’s at 10am.
We can also look into local services in your area if this would be of help to you. If you would like us to do this, please get in touch and let us know which part of the country you live in and we will look for local services you could contact for additional support.
I'm so sorry to hear about your Mum. CRUSE offer bereavement support cruse.org.uk/ and their helpline is 0808 808 1677 available Monday-Friday 9.30-5pm (excluding bank holidays), with extended hours on Tuesday, Wednesday and Thursday evenings until 8pm. The hospice may be able to help with bereavement support too.
For support at any time, as well as this forum, the Samaritans offer a 24-hour listening service, and you can call them on 116 123 or you can email jo@samaritans.org.
I hope you get help with your pain and support soon. If there’s anything that we can help with, please get in touch with us.
So sorry to hear that you are having a hard time. I would go back to your GP. I don't understand why they seem to be passing the buck. You need help and support, especially with the lockdown, and grieving for your Mum, which is hard enough at the best of times. You have done so well to look after your son these past eight weeks, hopefully things will improve shortly. There is light at the end of the tunnel. Jan. x.
Oh CountryChick78 I was so sad to read your post! I think you need to tell your GP/ consultant how close to the edge you feel. It isn’t good enough to leave you caught between these buck passing teams. I felt like this 2 weeks ago and my CNS told me to go to A and E... finally I got some help! So if talking to the GP and oncology doesn’t work, call an ambulance! You need help and so does your son. Much love xx
Your post made me sad, you would be missed but not only are you in pain you are grieving the loss of your mum which in itself is painful. Im hoping by now you have spoken to your gp and/or Ovacome. Please stay in touch and let us know how you get on. xx Big hug Kathy xx
Please take ovacome advice and seek the help you need. Yours is the most heartbreaking post I’ve read since being on here the past 3 years your loved more than you know and you can get through this, I will be thinking and praying for you 🙏❤️
Yes please take the Ovacome advice - there are Agencies out there who can offer advice/help. Also you could go to A.& E. Yes, it's not good enough that you're caught between GP and Consultant. You're in a lot of pain both because of your cancer and because of losing your mum and you're obviously feeling very low. The ladies on this site, including myself, are here for you so please let us know how you go on. Thinking of you! Gwen x
Dearest CountryChick78, You are under an ENORMOUS amount of stress! The stress in your life is too much to bear alone, even for a healthy person! I am in US, otherwise I'd jump in my car and drive to your house, make you dinner and sit down while you just pour your heart out. PLEASE GET SOME PHONE HELP! There must be an Ovacome support person who can direct you to a counselor. YOU ARE IMPORTANT TO YOUR SON! Autism can be very exhausting to parent and you need a break! You are not wonder woman and you don't have to suffer this way. Please reach out and call whoever the admin suggests. I want to hug you and tell you everything will be OK. Also, hydration is vitally important. You might need electrolytes to help stop muscle pain. I use NUUN tablets that you put in water. You can buy them on the internet. Don't get the ones with caffeine, they'll keep you awake all night. Stress hormones magnify pain and so does sleep deprivation. Sending you a gentle hug across the ocean.
Oh what a very tough time you are having I really do feel for you. There’s is plenty of good advice on here for you about how to get some help and I don’t think I can add to it.
What I will say is I know how you feel about loosing your mum as my mum died whilst I was in hospital having my debulking op. Having looked after her for many years previously I found it heartbreaking not to be with her.
But I got through and so will you with help and support.
Today i start second line chemo for my reoccurred cancer after a delay caused by Covid. I’ve been quite ill this last week and at times felt pretty scared so know how that feels too.
So please ask for help, take care of yourself and remember the ladies on here are always with you. Sending love.
Good Morning CountryChick - just sounds like you are having a horrid time at the moment. Cancer is throwing its worst at you from all directions. The Ovacome advice sounds great. It doesn't feel like we can do much other than offer remote hugs and to send positive thoughts your way. Thinking of you, Wonnie xxx
I was both upset and disgusted by your post. Your GP should be a lot more sympathetic under the circumstances. There Is a lot of good advice in the post from Julia and I'm sure when you contact the Hospice they will help you. Take care and God Bless. Sue xx
I am so sorry you are going through this terrible time. I agree with everyone else. You need help and some decent pain meds. I am nearing the end of my journey with OC and am very fortunate to have a GP who is very supportive. It's on the days when the pain meds aren't working that I can feel like you, especially in the wee small hours!
Do you have a hospice nurse you can contact?
Make some fuss-make a lot of fuss! You deserve better than this.
The other replies have given you sound advice, please, please follow up on their suggestions. I just wanted to let you know you will be in my thoughts and prayers, I know that's not much and I wish I could offer practical support but I'm not able to at the moment but please know you are held in my mind and the other ladies on this site. Sara x
Many healthcare professionals are taught pain meds are addictive and to try to avoid them with their patients, period. I was guided by a healthcare provider who told me to be insistent about my pain and lack of relief and how hard it was to do "normal" things while in the kind of pain I was. When I did this, I was given appropriate medication, no question. I just think they really have to hear you and not follow "knee-jerk" responses. Ovarcome has the best advice and contacts and I hope you take advantage. Hospice of all contacts, should know how to make you more comfortable. So sorry you are feeling so poorly and know we are all here for you. Hugs, Judy
You are going through so many hard things. It’s enough to crush anyone’s spirit. The loss of your mum alone is huge and then being in lockdown with your son who needs his daily structure of school and extra support. Put on top of that the pain you are in which makes every little task a major obstacle. I don’t know why the doctors won’t help you. I’m guessing going to A and E would be very difficult with your son. I hope Ovacom can help you get the pain meds you need. Xx
Dear CountryChick, you must have be feeling terrible when you put pen to paper so maybe you feel a bit less burdened after reading the uplifting replies . Losing your mother to ovarian cancer so recently is in itself a very painful event and will take time to get over; homeschooling is a strain at the best of times as I know from my daughter with 3 little ones , but you might get meaningful help from the Autistic society while you are struggling ?
Pain relief is absolutely vital and as we all know stress and anxiety exacerbate pain and we are less able to cope but surely your GP, or Hospice head nurse , if you can’t get through to the consultant , will have some solutions to help you get through this struggle ? How do you contact your oncologist ? Which part of UK are you in? Not Dorset by any chance where I am living? The local council here referred a very nice woman who did a few small jobs for me but they offered a variety of help.
Are you able to sleep ? If someone could take your boy for a nice walk perhaps you could put your feet up for an hour?
You might find it useful to get a notebook or in your phone etc and make a list of every contact you have the number of , so you can go to it in this sort of situation . I find when feeling low I get unmotivated and it doesn’t help but it’s great that you are on this friendly group .. the girls here truly understand and care about each other.... you need a big hug which I’m sending you and love and best wishes! You are not alone !!!!
I hope you've found some help now. You cannot possibly cope with all these problems properly if you are in pain. It's unsurprising you feel you can't cope anymore. You need help, lock down or no lock down. I hope you're getting it now.
You are in a bad place right now. However please know that your family needs you and that they are batting for you. You are going through this treatment for them. Hang on as nothing lasts forever.
The advice given is exc ellent so please follow it. If you have any spiritual leanings you may feel a call to a priest, rabbi etc may help to face your fears. Its very poor that your GP and Onco are using you as a tennis ball. Tell them you do not like their approach and that you want a clear answer as to why they are doing this. They must speak to each other. It does not fit right with the Hippocratic Oath that doctors still do. Best wishes for your pain to go away and for strength to climb the stairs both physically and metaphorically.
I truly hope that by reading all the above comments from our lovely ladies and our superb Ovacome Support that you know we are all here for you and would so very much miss you if we couldn’t hear from you. You are having such a difficult time and shouldn’t be in intense pain. Speak to your hospice teams they have specialist pain management people who will help you. Love to you and your son, big hugs via the interweb ❤️Xx Jane
This post is so sad CountryChick and I wish with all my heart I could make all your pain go away. Not only are you dealing with such huge physical pain and worry you're having the greater pain of losing your mum. I honestly cannot imagine how you get through the day or sleep at night. Rest assured every lady reading your heart wrenching words will be thinking of you and would certainly miss you. Your little boy would definitely miss you. I feel sure he brings you some delight in his own little way. Your mum will be looking down on you saying "everything will turn out well and things will get better" She knows you would've wanted to say goodbye. You've probably said goodbye to her thousands of times during the last 3 weeks and she'll hear you.
Please keep sharing your pain with us and we'll keep trying our best to help you through it.
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