Hello

Such a shame cancer is not more selective in who it effects (should be no one)

My way of coping is live for today try not to worry what tomorrow will bring.

The very best of luck for both your futures x

Plus a very BIG hug xxx

Hi

thank you so much for replying to me. That means a lot. 

I managed to get some sleep last night and this morning the sun is shining. I have woken up alive and still breathing and I must be thankful for that. 

And thank you for the hug. I’m sending a big one to you and hope all is well with you. 

Xxxxxx

I know how you feel, it’s very hard coping and as you say relentless it never goes away, I have liver cancer with an unknown primary, I’m trying to live for today. So far I have refused chemo, too afraid of side effects. Like you I don’t know why this happening to me!

its best to take each day as it comes especially as you feel pretty much ok. There are so many like us hoping for a miracle which does happen!

I hope your ct scan goes ok and best of luck.

Madrina x

Hi Hope

Thank you for informing me of the book Radical Remissions, I had not heard of it. 

I have just ordered it.

Hugs xx

Hi Hope,

This is certainly not the news that you wanted to hear. I am so sorry to hear this. Is there any chance that the 2 chemo options you haven't tried yet might help, or are there any new trials that might help to buy you more time?

My mum had secondary breast cancer after having had primary for 12 years. Sadly, we lost her. That was 21 years ago and things have come a long way since. I have had 2 bouts of breast cancer in the past 9 years and, there is just no comparison between the surgery, treatment and after care that I have received and that which she experienced.

Before you pull down your policy, have you looked at any benefits that you may be able to claim? Macmillan have advisors for this, if you contact them. They may even have a centre in the hospital you are attending. Ask your breast care nurse.

I can appreciate how difficult this must be for you, being on your own with a 14 year old daughter. My heart really goes out to you. How is your daughter coping with this, or is she unaware of what is happening?

Do please keep in touch and let us know how things go. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you so much for your message. 

Yes I have been in touch with Macmillan and they have been really helpful and we have an advisor in the Big C building at our local hospital so I’ve had loads of advice. Have put in for a benefit I can claim. Unfortunately the benefits won’t nearly cover everything so my policy will make it easier. 

My consultant didn’t look to hopeful that these other types of chemo will help but I need to try them. It seems I’ve now had too much treatment for the clinical trials. My hospital won’t take me but my consultant is looking elsewhere. 

My daughter knows I’m ill but not to the extent I am. I am due a scan in the next couple of weeks so I shall see how bad things have got and decide with her Dad (who is still one of my closest friends) how we approach this. She also has a counsellor so we shall involve her too. 

It all seems a bit surreal as we’ve just had a lovely day out today - lunch and shopping - and it doesn’t seem like this can be happening. I guess it must help to keep doing normal things. 

Thank you all so much for your support and I will keep you posted. 

Top of my list is getting my affairs in order as this seem to have taken a turn and it’s hard to even think about whether I’ll make it to Christmas let alone my birthday In May. I know I mustn’t think like that and positivity is so important but sometimes.......

Xxxx

Hi Hope,

Your surgeon sounds as if he is being pro-active and helpful in trying to get you into another hospital. Do I take it that this would be for further trials? I presume that you can still have chemo in your present hospital?

I'm glad to hear that you have already been in touch with Macmillan and have applied for some benefits. Are you aware that some of these can be paid out more quickly if your consultant thinks that you have less than 6 months to live (PIP for example)? I am not for one minute suggestting that this is the case, but it is worth bearing in mind. I agree that benefits will in no way match your salary, but every little helps.

Your daughter is at a difficult age to be told this news - so many changes in her own body, plus exams, etc. I can appreciate the difficulty in telling her any more until you know your position yourself. Hopefully, you will be in a better position to decide what to do after you have had your scan. I am glad to hear that you and her dad are still good friends and, can do this together. It is also good that she already has a counsellor that you can involve too.

You will have sunny days and dark times. This is perfectly normal. However, I hope that the good days outweigh the bad. We have recently lost both of my parents-in-law, who thought that they had their affairs in order. As executors, we have learnt from this experience. We realise that we need to make it easier for our family to trace all sorts of policies, so that they don't find themselves in the position that we have found ourselves in.

After you have got your affairs in order, I hope that you can make the most of each and every day with your daughter, don't leave anything left unsaid between you.

Have you thought of making a memory box for her? Perhaps pop something in for her birthdays/Christmasses,  a letter of hope and advice for her future life, marriage or even a wedding present, or something that she can wear on her wedding day to help her feel that you are still part of her wedding. You can take this right up to welcoming grandchildren into the world and even sending them a letter. Your daughter will also come to treasure a good photograph of you.

This may all seem so gloomy and, I apologise if I upset you by mentioning such things, but I suspect that the memory box is something that your daughter may treasure for the rest of her days.

I sincerely hope that your scan goes as well as it can.

Please keep us updated and, remember that we are always here for you.

Kind regards,

Jolamine xx