Not realistic

Hello Crick55, hopefully someone with more experience will be along soon, but I just wanted to send a response and some hugs.

We are lucky that my husband's cancer is treatable so he was totally on-board with his options. Now that he has had surgery and there are lots of restrictions around food and drink, there is resistance and I'm struggling to get him to eat and drink - another form of denial I suppose.

New Year's Day is not the best day to reach out to the medics for help, but keep him talking in the meantime.

Big hugs, Tiny xxx

Thank you Tiny

So pleased that your husband has a good outlook and I'm sure that once he fully recovers from surgery his appetite will come back.

You are so right, today is not a good day to try for help. Anyway my partner just got up and seems to have forgotten about it for now. He is at Picc clinic on Tuesday and main hospital Friday for a transfusion. If we've not got anything sorted over the weekend we can ask then. Hopefully when we do get results of CT scan there will be alternative chemo treatment.

Happy 2022 to you and your husband.

Hugs back 

Crick

Hi ,

Pain control comes with quite a lot of options and sometimes raises concerns that it might mask issues that might be worth noting. Having said that living with pain is often not an appealing though but sometimes we get in our head the idea it is supposed to hurt. Sometimes if feels like if might be helpful to get something to take away the emotional pain too and for me perhaps I thing my biggest medicine there was the living with less stress course I did with Maggies.

My wife also was very clear she did not want to know "how long?" - though to be fair it can only ever be an educated guess for the average person - one day I might meet this average person but my wife does not fit that bill.

<<hugs>>

Steve 

Thank you Steve

What you've said gives me a fresh insight and totally makes sense.

Knowing how to support him is a finely balanced act and I'm not sure I always get it right. But then I'm sure that just makes me average! We initially had the mantra " one day at a time" and we do try.

I do think we both need some help with this minefield and I will look into the course you mention.

Thank you again and I wish you and your wife the best possible New Year.

Hugs back

Crick

my husband has just had his first round of chemo - 7 nights in hospital all over xmas. He is home now but in pain and i stuggle to get him to take his pain meds - he has tablets plus patches and i try to ensure he uses them both. A few days ago i suggested perhaps anti-depressants or valium might also help but today he has admitted he is struggling. Just keep gently mentioning it - and if not done already, you need to write a letter to your partner's GP that he signs saying they can talk to you about his medical condition and medication as i know my husband is not strong enough to deal with this and i need to do it for him. Letter will be written tomorrow and with the GP on Tuesday. 

I feel your pain aswell - its so hard and the other thing is dont be afraid to ask for help for you !!!!!

xxxx

Hi Crick 55,

Welcome to the forum - I'm also quite new here.

I'm sorry that you've had to write at 5am on New Years Day - not the best start to the New Year.

If he's admitted that he's in pain, then that's one big hurdle that you've got over. You say you're waiting for another CT scan - have you been told how long you'll have to wait for that?  If it's likely to be a long wait - you can always opt for a private CT scan, even if you don't have Private Health cover and it's not that expensive either. We did that with my Best Friend and were 9 months ahead of the NHS when they did finally wake up. What happened at the last hospital/telephone appointment - did they not ask if your partner had any pain? In my experience, the Oncologist will organise pain relief to be kept at home, just in case it might be needed. They would also have arranged that when he went for chemo too if they thought it necessary. He should have been given a Chemotherapy contact card and that will have details of who to contact 24/7 365 days a year, so today being New Year's Day, should not have been a problem. His GP will also have been informed so the District Nurse could be called to administer pain relief if necessary. He also will have been allocated a MacMillan Specialist Nurse and they are absolutely brilliant in getting anything organised where Cancer is involved. I believe there are also details of where to ask for help on a bank holiday on this website.

It doesn't matter that you didn't ask the million dollar question, we didn't either - doctors cannot accurately predict anyway, and they'd have told you that even if you did ask. They might start hinting about it later on, if he moves onto palliative care, but even then, will tell you they can't accurately predict.

As for being in denial, I think that most people are in denial, I know my Friend was. Nobody wants to believe that they have this horrible disease, believing that it only happens to other people, not to them,  and sometimes being in denial, is the way that they cope with it. That being said, try asking your partner "if you had a headache, would you not take a couple of paracetamol". "Forget that the pain may be caused by the Cancer, but if it was anything else, wouldn't you want the pain eased?".

Best of luck and I hope he listens to you, if he doesn't, I would ring the MacMillan Specialist Nurse and get her to come round and have a chat with him - she'll know how to approach him. She may also be able to sort out the problems with the hospital appointments too or anything else you might need.

Thinking of you and hoping that the New Year improves for both of you,

Hi Hermes

I am so sorry that your husband spent Christmas in hospital. Having to cope with cancer at any time is difficult but over Christmas and New Year, memories and thoughts of next year have made it doubly hard.for me but at least my partner was at home to share it with me.

I hope you have support yourself. I know I need to ask for help but I think writing my first post here is acknowledgement of the fact and has already helped.

I hope your husband is more comfortable soon and your letter and to the GP bears positive action and suggestions.

Big hug

Crick

Thank you Best Pal, I  think you are having a tough time too so I appreciate you responding to my post.

Yes it's not a good start to the year but sleep is often difficult at the moment and I find it easier to just get up. 

My partner has had 4 rounds of chemo, 2 weeks apart, the first seemed to have a good effect which lasted almost until the next. Subsequent rounds have been less effective and for fewer days. 12 rounds were planned but although the consultant said after 3 that it wasn't  being effective he was allowed the 4th before Christmas. The CT scan was on a 2 week wait. We've already passed that but I suspect covid and staffing may be an issue.

I don't think he was given any pain relief meds. We have many contact numbers and he is now starting to contact nurses to get appointments changed etc. He sees the nurses once a week either at clinic for the picc line to be cleaned or at home when the chemo pump is removed. he also has a transfusion planned for Friday.

I think a lot of the issues are that he has always been independent,  fit and active. He is understandably down that he can no longer do everything and if he needs to call the support number that is admitting defeat. He gets irritated if I even ask how he is.

Today though he has said that he'll chase the scan on Tuesday.. just praying that there is an alternative chemo for him.

Thinking of you too. Take care of you too.

Hugs

Crick