Not good news : Hi ladies , I have not been on... - My Ovacome

My Ovacome
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Not good news

Juliette35
Juliette35

Hi ladies , I have not been on for a while . I am feeling really depressed, saw my oncologist last Monday. He said it's gone to my lymph nodes in upper chest . He also said that he can't give me anymore chemo , so I have BT given a machine with oxygen which I use sometime. I can't get my breath back even if it's just a few steps. The thing is apart from all that I always get a letter sent from my oncologist and one also goes to my GP.When I read my letter he is saying that my health is deteriating fast. And is talking about a hospital or being at home. I don't want to die yet ,I know you ladies will understand . My hubby as been fantastic about it , but he is worried so I don't like saying too much to him . All this with my breathing came after my lungs had filled with fluid ,I have had them drained but still having breathing problems. What also upset me was the fact that my health is deteriating fast . I never asked him about that as I don't want to know . Will be seeing him next Monday ,so will say I don't want to know about the future I am just living for today . I don't know if I will have my post removed, I don't want to upset anyone . Sending prayers to everyone . Julie xxx

16 Replies
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Dear Julie, all of us will feel for you. It sounds as if you are really appreciative of the good things in your life and living the best you can in each day sounds seems so gentle and kind to all those involved with you.

For your husband and his worry/anxiety, if he has no-one to share this with, would he talk to Anna, the Ovacome support manager? 0800 008 7054

Warmest wishes for lots and lots more happy and gentle days. Lesley

Hi Juliette,

Sorry to hear your news and I hope you get some news next week at your appointment that may help you over the coming weeks. I understand completely about living for today, and hope you feel

more comfortable soon. Glad you have the love and support of your family and im sending huge healing hugs to you at this time,

Liz 💖 Xx

Dear Julie, so sad to hear your news. I have had growing lymph nodes on my lungs for four years now but luckily they are being kept under control. I wonder if there are any treatment options for you? Have you considered a second opinion?Remember we are all here for you and can understand what you must be going through, wonderful that you gave the support of your husband.

Thinking of you and sending much love JackieO xx

Hi Juliette

Sending you a hug 🤗 ..... I would agree about getting your husband some support so that he is in a better place for himself but also to be with you. I too have a real worrier at home so know what it’s like xx

Julie, I'm so sorry to read this. I hope you can be made to feel more comfortable with your breathing and I know your hubby's strength will help bolster you when you're feeling low. You're in my thoughts and prayers and I hope you get some of the answers you need next week. Until then, living each and every moment is the best way (for everyone) xxx

Hi Juliette- sorry to hear your sadness. It is good that your family are with you and that you are making the most of the day.

Best wishes

Fay

Have you thought about going to a hospice for some you time. When I went at Easter I was worried I’d been taken in because it was all over. In fact it’s how I’d imagine rehab to be. They picked me up, patched me up, turned me round and sent me home. My health was awful and I needed it without knowing. They have experts on hand along with all the meds you need to be comfortable. Your GP can refer you.

They also gave me an NHS booklet to record all of my wishes in. Including medical intervention when and when not.

Please don’t give in to their insensitive terminology. The doctors become institutionalised but we don’t have to.

The fight is on, sleeves rolled up, for me too. We can do this. Time is there for the taking.

It’s easy to fall into the downside of living which is why we need both hands for the upside of living too. Breathing is a real bug bear with OC. It seems the less I do the less I’m able to do but it can’t win. Not yet. I need to tell everyone I got to see Sarah Millican and sadly I need to bore you with the details too!

Please give the hospice route a try. I told my GP not to let me go to hospital under any circumstances. If you’re really worried make sure you’ve written down what care you want.

Much love

LA xx

Hi Julie. Like the other girls, I'm really sorry that you had to read such a letter. Lesley is right. Get someone each to talk to. Hubby and I both have cancer support counsellors who are our emotional sponges. By off loading to them we don't end up arguing or fighting with each other. So easy to do when there's a lot of stress and anxiety going on. I have the feelings of "why me" and "it's not fair" etc etc whilst hubby feels helpless as he can't put me right again. Our counsellors help us to understand that neither of us are responsible for the now in our lives and they are worth their weight in gold. Thinking of you. xxxx

I, too, seem to learn new things from copies of letters written to my GP. Get a second opinion if possible- I paid for mine as I didn't want to wait ans it was well worth it.

That's some hard hitting wording in that letter. I'm not surprised it upsets you, Julie. That would upset me too. I'm sorry. Hugs!

Agree with seeking a second opinion, if you haven't already done so. There might be more treatments available.

In any case, you might have to face the draining every now and then in order to ease the breathing. But hopefully a hospice can make you more comfortable in the meantime, and you still have a good amount of a life worth living ahead of you. Sending you hope. Maus

Thanks everyone for advice and kind words . Could you tell me how to go about a second opinion. TIA.love to you all and prayers .Julie xx

Sometimes you go through your GP, other times you ask whoever is treating you now. Hugs. XXOO

Not sure where you’re based but you can also contact the Christie in Manchester and ask to speak to Prof Jayson secretary explaining you would like a second opinion from him ASAP she will let you know what they need. She is lovely and very helpful x

Juliette35
Juliette35
in reply to BeeWild

Thankyou , we are about an hour and quarter away . That's going by bus . Xx

BeeWild
BeeWild
in reply to Juliette35

They have hospital transport you could use if you need it too!

Which hospital are you at now?

Hi beewild, I go to airdale hospital which is between Skipton and Keighley. I had a little walk to the end of of our avenue , I went on the oxygenfirst and that helped a little bit. . My youngest son is coming to clean for me this morning, I get so frustrated at not being able to do things myself . I know people on here have it much harder than myself,and I feel such a wimp . Thankyou for your helpful reply , sending hugs . Love Julie xx

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