Hi just read your post my thoughts go out to you both, my partner and soul mate was diagnosed on the 14th of May 2019 with kidney cancer that had spread to the lungs, in August we found out it was also in the tissue where the kidney had been sitting, he is now on immunotherapy to try and slow down the cancer spreading, cancer takes over every waking moment, and we both try not to upset the other, but this actually didn't help as we both felt isolated so now we try and talk,hold hands and try to enjoy each day as it comes, bad days we just get through them, good days i take him out for a drive and maybe have a ice cream in the car (as he doesn't like seeing people and is afraid of catching some bug or other) have you got support, we had a occupational therapists that called and made a huge difference to us, getting  a  riser recliner chair, sorting mobility badge  (blue badge ) so i can park near the sea and he can watch what is going on. Have you asked if there are any trials that may help your  partners? hope some of this makes sense, this forum was a major help to me, please take care of yourself

Thank you for reply.  We are trying to get out and about on those good days. Her breathlessness is a problem but am hoping to get a wheelchair organised. She is due to have chemo this week to try and stop it progressing but I worry it will make her feel worse. Trials are consided out of our time scale apparently.  Best wishes to you and your soulmate xx

Hello everone,

I have read all of the posts and am so sorry for all of you who are presently going through this nightmare, it's exceptionally difficult to come to terms with as we've recently found out.

My husband just had terrible pain at the end of August in his right side and the ambulance medics said it looks like an Acute Kidney Infection. However, after having both CT and MRI scans, followed by colonoscopy biopsy the doctor simply told us it was bad news. He went on to say they had found tumours in his bowel, liver, appendix and gallbladder/ To be perfectly honest it's all gone completely over my husbands head and he thinks the chemotherapy tablets that he's on (that is two weeks on the tablets and 1 week off for 4-8 cycles) is going to cure everything. The chemo doctor asked us how long we'd been married and I wondered what that had to do with anything. My husband in his usual joking manner said 44 years, happy for 3.

He's now on his second cycle and goes back to the hospital next week for blood tests and to see the doctor but the side effects are many, and he doesn't feel as though he can eat due to the sickness and lethargy he's experiencing. He has in the last few weeks lost over a stone and a half in weight and is beginning to look very gaunt. The Macmillon centre that he attends at the hospital are very kind, and arranged a blood transfusion that took place only last week. 

I'm terrified to ask anything while he's there in the room because obviously he's in complete denial still and I'm expecting the worst. They've offered relaxation classes and things like acupuncture but we're just too afraid to even think about it. He honestly expects the tumours to disappear after the medication cycles are complete.

The words palliative care keep ringing out in my head and I'm too afraid to go to sleep at night.

I don't even know what I expect you lovely people who are in the same boat to say, but I truly hope that you're able to try and make some sense of your terrible situations because I feel for you all.

Thank you for listening.

O that word "pallative "just absolutely floored me, like you i felt that i must stay awake incase of what i dont know!! but you have to try and sleep because this is a nightmare and it drains your energy and sadly we have to be strong for them,but please get support from this forum who have been great to me, but practical things occupational therapists has been a great help talking to my husband and suggesting things that may help when he has bad days, and even made an appointment for him to speak to a therapists  (this Wednesday I'll update when we get back) if I would have suggested it dont think he would have gone, he has been told that they cant cure him, but he still says when he gets the all clear we can do this or that, I  know people say its good he has got a positive attitude,  but he has a ct scan in December to see if the immunotherapy has slowed down the spread of cancer and he keeps saying that it might have got rid of all the cancer!!!! so like you i'm struggling (have seen the gp for mild antidepressant tablets 4 weeks ago) at least I can talk to people without breaking down in tears, I am fine if my husband is with me no tears but if I was on my own I was failing to keep my emotions in check, sorry if my rambling is of no help, but I really do know how you feel, please feel free to say what ever you want, take care of yourself 

 Hi,

Many thanks for your quick response to my post. I am quite overwhelmed that there are so many kind people prepared to share their feelings about loved ones in this way. I am so pleased that your husband is prepared to listen and able to discuss his situation with the therapists and I sincerely hope that Wednesday goes well for you both.

I'll watch for your post and I'll post back after my husband sees the chemotherapy doctor again next Friday.

Thank you again and good luck.

Hi 'gutted'

Apologies for not replying sooner, but I have been going through a rough patch myself as I am haveing a steroid slow release pellet inserted into my eye on Monday to try and help with with retinopathy caused with having diabetes for almost 40 years. Anyhow I wasn't able to see clearly to reply when you kindly posted your response t my email.

Hopefully your husband has been feeling a little better since you posted, although I do know how difficult it is for you.

My husband is due to see the Consultant on Thursday after having a CT san to assess whether the chemotherapy tablets have actually improved matters. I have to say that my thoughts are really negative, but people have said that sometimes the scan will have improved, however I do have my doubts. He has now lost 2 stone in weight and is now only 9 and a half stone which is really worrying him. He is now only eating selective foods and has gone off all the foods that he used to enjoy. I don't know any more what I can give him to eat or drink as he wont even have smoothies or anything along that line.

I want to be positive, but it's so difficult. We were going on holiday at Christmas for 6 days, but today he said that he wouldn't be able to eat any of the food. so we might as well stay home, he never even asked my opinion on the matter. I know it's not his fault, but I feel as though Im banging my head against a brick wall.

I do hope that your situation isn't as negative as I'm feeling.. Wishing you much love and strength.

jayseddon

Hi well things have been going along in what seems the new normal, though husband has had terrible pain in his big toe,  GP thought it was gout, and compared to what he has been through this pain is getting him down, he is eating fine but he has noticed that his face has gone puffy and wants to cut down on the steroids told him he cant just stop as we have an appointment with the professor who deals with the immunotherapy on Tuesdays we can ask him about reducing the steroids, my worry is that my husband will stop eating again if he comes off the steroids, and I felt so useless when I kept trying to encourage him to eat and drink (he says nagging) hope you and husband have some (or at least stable news)positive news, I know its so  hard seeing them losing weight but you are doing the best that you can.

 We are off to see our consult Tuesday then treatment Thursday and 13th of December ct scan to see if the treatment had slowed the cancer down, I hope you are looking after yourself, through nhs i went to see a therapists i cried solid for an hour and to my suprise felt a lot better, maybe it was talking to a stranger who wouldn't judge me who would allow me to be weak, frightened and yes angry that my love,rock soul mate had to have this rotten disease, so please look after yourself and I am mostly here if you need me,I'm sure others will be along soon

Hi there 'gutted'

So nice of you to respond. May I first apologise for not getting back sooner, but with all that's going on I just couldn't get around to it, and then I was having trouble remembering what I should do to respond to your post, silly I know but that's the truth.

Hope that your husband is as well as he can be at this terrible time, and I wanted to get back to wish you both all the luck in the world for 13 December.

My husband was seen by the Consultant on Thursday and he dealt us yet another blow and said that the courses of chemotherapy medication hadn't been effective as the tumours in both his bowel and liver had increased in size. To say I was stunned and disappointed is a complete understatement. I asked about what I would call conventional treatment, i.e. receiving the chemotherapy via a drip, but he said that my husband is not fit enough right now having lost 2 stones in weight now, However, he went on to say that he wanted him to try steroids for a fortnight and that he would assess him again with a view to maybe reconsidering the chemotherapy if he's put on enough weight in that time.

I don't know quite what to expect as underneath it all I feel that the Consultant thinks it's futile. I wasn't about to let him just cast my husband off though (as I'm sure none of us in this position would), I just wanted him to offer something else to try and keep my husband fighting. All through the consultation I still felt that my husband wasn't even listening to what he said. Like others, we have been offered things such as relaxation classes and acupuncture etc. at our loval hospice and even that hasn't made my husband query anything. I have emailed the hospice anyway, so I'll have to break the news as soon as I recive a responce.

I feel especially miserable now and virtually unable to focus on anything else. My husband is eating a little better now and when I can I try to encourage him to do a bit of cycling on the exercise bike which appears to be keeping his spirits up. Obviously I'm dreading the thought of the next appointment in a fortnight, but hopefully by that time he'll have gained some weight.

I hope that your husband has managed to continue eating and that he hasn't given up hope. Do explain to him that unfortunately others are suffering in the same way, and that we appreciate just how difficult it is for sufferers.

I wish you both all the best for the 13 December. Oh by the way my husband had me cancel our Christmas holiday due to the fact he wouldn't be able to enjoy the food and he's so self conscious about the way he now looks.

With much love

Hi again

My husband was dealt another blow last Thursday from the Consultant who says that looking at the CT scan the chemotherapy medication hasn't helped as the tumours have grown in size, which as you can imagine floored both of us. He has now prescribed steroids in the hope that he gains some weight.

Today the dietition called and told us that he has actually lost even more weight even though he's now been on the steroids for a week and is eating a little better, although selective foods, She left some of those vitamin shakes that I sincerely hope actually makes a difference.

He is due to see the Consultant again next week, although he did say that conventional chemo is out of the question right now as he is too weak to endure that. So, I honestly don't know what the next step will be. I fear that he's trying to tell us that he's run out of ideas for him. I just feel so angry with the disease destroying our lives in this way, and I don't know how to deal with it.

My husband is pretty upbeat but is really worried about the weight loss, but now he's going to try the shakes as well as the Altrapen vitamin drinks to see if that helps at all.

All the very best for the 13 December.

With much love