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Hi Jane, sending you love and hugs too. My worst problem is that I don't know if he is in the active stage of dying or will be with us for a few more weeks or months. He is so confused and his breathing is so poor and when he is lucid he is so sad and depressed. The Consultant said he might go in days but that was a week ago. The Hospice Nurse suggests weeks to months. I just don't want him to suffer. I have taken on board what you say about not getting ill too as I have lost a lot of weight and just realised how gaunt I look. I cannot afford to be ill when I am his primary carer. I am gload that you are on the mend and trying to stay strong. It really is hard.
I see that your strong man has been trying to protect you as he cares for you so very much. It is hard from them to see the pain that we are suffering and it adds to their pain. Now he has a prognosis and is hoping to be able to spend that time with you as he loves you and would prefer to face this with you. It seems that he has accepted the situation but as we know this "acceptance" comes and goes as dealing with the constant unfairness and cruelness of the illness as it progresses and limits what you can do makes for a mine field of emotions. I guess he is still quite active and able to get out and do things or am I wrong? Of course you will want to have him back in your life as you love him and you understand why he ran back to Mum though it hurt at the time and still does. Of course he is a gentle caring man and in his way he was caring about you when he did what he did but just went about it in a way that devestated you. I think you do understand what you will be accepting if you are back together as you will be caring for him throughout the progress of the illness no matter what twists or turns it takes and as you say will be facing a tough journey, but you could still have some wonderful time together. So difficult for you to make this decision but you do also have to think of you and how you will be able to manage emotionally. Have you been to see him in Ireland to chat this through?
Our days are so up and down at present. From me thinking it was the end to now wondering how long I will have with him. Will I get that light at the end of the tunnel and he will be well enough to do a few things together? If he can eat and builld up his strength who knows. I am learing to take every hour rather than every day as each is different.
I hope you make a decision that is good for you hun. This time of year is not the best as we get sentimental and emotional. We've never been mad on celebrating Christmas but Im now looking at practicalities of what shopping to get, what might he eat, how will he feel, what do I do about any well wishers. Want to crawl into a cave with him and hibernate until Spring.
Take care of you and your family and let me know how you are doing when you can. Email me to vent or cry or laught. You have good friends on this site who do care. Jill xxxx
How have you been today and your husband?
I hope he can get the treatment tomorrow I think I seen the Doctor said if he’s well enough he can have the immune Friday?
I was out having lunch with 2 of my cousins today Steve and James I was telling them about your man both said from hearing you have Cancer to the scans and test to seeing if you can get treatment and starting the treatment was the worst time for them both, but once the treatment started to kick in yes they got side effects but the pain eased and they started to feel they were getting their life back not feeling so weak
My heart went out to you when I read your post earlier no one should go through that pain not your Husband and not You
I know when I thought my partner only had a couple of months how painful and soul destroying it is
I’m glad your going to start looking after yourself Please Please make sure you do
I have always thought I was a strong person and look we’re I ended up so Please take care of yourself
I got an unexpected phone call today from my Partners Mum
She was really lovely on the phone apologising on how she treated me by ignoring me for no reason and explained when she lost her husband that her son became the man of the house and had to grow up very quickly he was only 13 when Dad passed (heart attack) she depended on him far to much her words and when I came on the seen years later she knew instantly I was the woman she was going to lose him too
I cried listening, she adores her one and only son so much she’s also got 3 younger daughters
I told her she hasn’t lost him to me and that he’s got a massive heart and there is room for 2 main woman in there and she will always be number 1
We have sorted things out
That if he moves back over here when he’s well enough, we will travel to Ireland and she will stay with us also
My heart breaks for her it really does knowing her sons ill and he’s moving back over here
She said since He’s been back home, he’s been in a lot of pain, but she feels it’s more emotional pain being away from me he told her he was trying to protect me and didn’t want me seeing him dealing with Chemo and he couldn’t deal with the pain he seen in my eyes
it was she who told him to ring me saying what he’s told her about me she could tell I loved him very much and willing to look after him and that she knows he will come back over here and she won’t get to see him everyday, but she also knew where his heart was and didn’t want to see him broken while fighting this disease
She feels a lot more settled talking to me today knowing she can stay with us anytime bless her
sending you a massive hug Jane X
Hi Jane, I'm so pleased to hear that you have come to a lovely understandig, love and respect with your partner's Mum. Do you have everything in place for him to come home to you and will it be this year or will you go over to see them and bring him home? I guess there are a few things to sort out at home depending on how mobile he is but I am so pleased for you and hope that having him close to you will be such a boost for you both.
Hubby rallied on Friday and Consultant pleased with him so had the second treatment. Potassium levels low so has some more tablets for that and hoping it will give him some energy but I cannot help feeling that he is just doing this for me and his heart is not in it. He's trying, but not trying, to eat if you know what I mean and I feel so bad tring to encourage him, then he gets quite angry with me and I feel very upset so juggling my own emotions here as I can't begin to know how he feels but am feeling a little resentful - can't believe I am even writing this - as I am trying my very best to do what I can for him and nothing that I do is right. Well, that's enought of feeling sorry for myself! I know how sad he is that he has no energy to get out of bed or onto a chair, wash or go to the loo by himself and me trying to get him to eat or drink nutritious drinks so he can have that energy to him is just nagging. He has to have a blood test Tuesday for potassium levels and has only had 2 shots so far when should have had 6 so that is worrying me. Low potassium can affect the heart and he already has the clots and SVCO. Was feeling so good this morning too as his swollen hands and arms are down and he didn't leak out of his skin yesterday but now feel rather deflated. Guess that's the ups and downs of it all. My friend's Mum is 87 and she has throat cancer and she says she feels exhausted looking after her but has carers in 4 times a day to get her out of bed, wash and feed her. My hubby is so private he won't let any carers in as he wants me to look after him 24/7. Thankfully my work have been very understanding so far and letting me work from home but not sure how long that will be possible. I really do not mind doing everything as I love him so very very much but I am now feeling tired and emotional. Big deep breathes and on we go. It will be fine. Enough of me.
Expect you have lots to do in the next few days to bring your man home. Be strong and enjoy the time with him. Massive hugs back and let me know how things go. Routing for you both. Lots of love, Jill
Oh I am so pleased for you both your man was well enough for the treatment Friday you are bound to worry with everything at the moment it’s only natural. It’s been a whirlwind for you both the last few weeks even the word whirlwind is an understatement what you have both been through
There is a true saying you always take it out on the one you love and this is what your man is probably doing especially because he’s so private and bless him his heads is that mashed with everything he probably doesn’t realise he’s doing it. When my man was first diagnosed it was like being with a complete different person then basically left me swinging after saying some horrible things to me and not even a Goodbye
His Mums said he’s been very different also over there very snappy and sharp and that’s not him at all he’s a gentle giant really
I can’t tell you how happy I am to hear your man was well to have the treatment Friday please don’t say (enough about yourself) you must take care of yourself first if you go under who will he have to look after him so please look after yourself and has for the resentment last weekend I told him I didn’t love him anymore and for the lie he told me about his prognosis but I knew I was kidding myself and understand his reasons now and I haven’t even begun this journey off caring for him yet so we all feel resentful at times just make sure you take care of you first and I hope his blood gets sorted out
On a different note Last night we had a family gathering for my cousins 50th it was a bit emotional because he did a speech saying 3 years ago he didn’t think he’d make his 50th but it was a great night with love and laughter also just what our family needed
I am flying over to Ireland this week my partner is going to come back with me after Christmas and stay with me at Dads till we can get a place in the new year Dads happy for his family to stay when ever they want to also (hopefully we will have our own place again soon) I am unsure if he will continue treatment over there and we stay at his Mums till he’s able to fly back again or if he will transfer over here by the looks of things they have been nothing but great over there so we will see what is best for him
tbh I’ve not really spoke about where he will continue the treatment I feel we are just relieved we are back in touch know doubt when I’m there this week it will all be discussed
my work have been great to I can work from home also so hopefully if we stay over in Ireland when he’s having treatment il be able to work there if not Il use holidays ect but il cross that bridge when we come to it if he wishes to Carry treatment on there
I hope your Husbands potassium level is back up soon lots of love Jane xxx
Hi Jane, thank you for message, kind words and for generally keeping me sane!
So pleased its working out for you and you will be with him this week to bring him home. You will sort out the right place for his treatment and all the logistics of everything, just lovely for you to be together with your Dad before you can get set up in your own place. I do so hope you have a lovely time in Ireland and your travels are safe and uneventful.
Today I feel like hitting him over the head and force feeding him LOL as if I would do that! He's smiling at me cheekily as he knows I'm due a little prompt, coax, nag and he's going to give the little boy face to show he really is trying! I know its hard for him so I'm keeping sctum today and see if that makes him eat of his own accord! The games we play....
Have a safe flight hun. Bet you can't wait to see him and give him a cuddle. Big hugs from me and speak to you soon xxx
hows your day been ? Did your man eat anything or did you hit him over the head lol do you think if you started to say you are bringing careers in to help he might try and eat a bit so that doesn’t happen or would he know you was just saying that I just feel for you watching your man suffer like this and your doing it on your own I do hope he starts to eat bless him
I fly out Thursday can’t wait Skyped him today he’s been telling me he’s lost a bit of weight and I didn’t want to look shocked when I see him so Skyped today he’s lost some weight bless him and I could see he was in a bit of pain I was kissing my IPad screen when I was talking to him like a giddy teenager but then told him I was going to hit him when I was face to face with him because I have missed him so much he asked when did I become violent lol
Love Jane xxx
Hi Jane, I'm so excited for you flying over on Thursday - wow that so brings out the romantic in me!! So lovely to hear you both have been able to laugh and have some fun on skype but you can't beat the real thing. I'm so made up for you and hope the flight is quick and uneventful and you will soon be cuddling your man for real.
Just cannot get mine to eat anything at present and am desparately trying not to be the nagging wife lol. Half a piece of toast yesterday and half an energy / nutrition drink. Blood test today for potassium levels but pretty sure it will still be low as he's not been taking the supplements. Oh well, it's so easy for me to sit here and preach but I'm not the one (as he so eloquently says) "on death row, so leave me alone woman!!!!" He's also so very confused about things and I'm not sure if that is the treatment or the lack of food? Today is another day so let's face it with a smile. He's sitting up sipping tea at present then hopefully I can wash and shave him and we'll go off to the hospital. I've a cunning plan with my neighbour who is giving us a lift to try to get him to have lunch out on the way home; he might not say no to him! It would be better if if was Spring and there was some sun out and warmth in the air. Bad planning having this in Winter !
Only 2 days to go Jane, I bet you have already thrown your things in your bag and are half way to the airport. Let me know how things go hun. So routing for you and your man. Take care, loads of love. Jill and Carl xxx
how did yesterday go ? Was the bloods any better and did your plan happen
I hope he’s managing to eat a bit more
love Jane xxx
Hi Jane, great to hear from you - how many hours to go until you are on your flight? So exciting for you but expect you are just a little nervous too. It will be fine hun.
Long day at hospital just to get blood but what do you know? Got a call from the consultant's registrar late pm - put the willies up me to be fair but it was a lovely call just to say that Carl's blood test results had come back and his potassium levels were perfect. How nice and what a change to get a call with some good news. I was positively skipping in the kitchen. And my brave soldier ate some chicken and veg soup (home made lol just call me Dhelia - no, make that Nigella!) so he had a good day all round. Real tired but to be expected. And he tried beans on toast this morning, So very proud of him. Macmillan dietician also came back to me and reassured me that even sips of water, milk or juice will help so not to panic and not to beat myself up about it. Kind and sensible words.
What time are you off tomorrow? Will you get picked up from the airport? I so hope that you have a good flight and just think he'll be waiting for you and you can have all those cuddles and hugs you've been missing.
Lots of love to you and your man and his Mum. Hope all goes well, I'm sure it will. Be in touch again soon hun xxx
Oh that made me cry I am so happy for you both with the bloods and the eating I’m so happy a bit of good news for once for you both
I’m terrible at cooking I was always told that I’d have to learnt to cook like his Mother from scratch I’m your ready made meal type of woman lol anything I can just put in the oven or Microwave
il definitely have to learn now if I need to get him strong I’m sure his Mum will be showing me a few dishes while over there
My Flights at 8.45 it’s only a 1hr and 5 mins so shouldn’t be to bad hopefully the weather is ok his Mum and sisters are getting me from the Airport he said he will be an emotional mess
I have mixed emotions to be honest obviously I cannot wait to see him and give him a big hug but I so long for someone to wake me up from this nightmare I still feel like I’m in a bubble I don’t want to see him in any pain because he’s such a beautiful Man no one should ever have to go through this people getting told what life expectancy they have left it’s so wrong this day in age I’m going to have a big massive cry tonight get it all out my system so I’m all his from tomorrow and be strong for him
I think this is what I cannot deal with the most if we their partners are in so much pain what on Earth do they go through because it’s them it’s physically happing to
His Mum sounds like she’s got a great sense of humour on the phone she said oh it’s a miracle Jane the last few weeks he’s harldy eaten been in pain not got out of bed now he’s up eating better but still some pain but nothing like he was isn’t that strange lol she said I knew he was missing you terrible there’s nothing like headache bless her
I hope Carl carry’s on eating and he finds his strength again I’m so willing him on for you both
lots of love Jane xxx
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