Mixed emotions

my mum has advanced lung cancer and has just started chemo. She’s tired all the time and I find it hard to concentrate on anything I have to do for me. And with covid you can’t even meet with friends to have a bit of downtime. It’s heartbreaking 

I'm so sorry for your mum also for yourself 

It is really hard to get the balance right looking after loved ones and yourself all we can do is try our best sending hugs M x

Hi Kikidotty - sorry to hear about your husband’s illness and I send my very best wishes to you both.

i know exactly what you mean, I feel like I’m on a rollercoaster with very big highs and lows. My husband has advanced bowel/liver cancer and we too have been together for 25 years.  I can be going along ok and a tv programme or advert comes on with something about cancer, or even just a song, or I see somewhere we’ve been in the world, and the reality of everything hits me like a train. Or as you say some days I just wake up positive (maybe too positive, almost like nothing is wrong) and other times I lie awake all night thinking about all the possibilities and outcomes and feel completely desolate.

I suppose we just have to be kind to ourselves, and take each day as it comes. The enormity of what’s happening is sometimes too much to take in, so we could just try to deal with what’s in front of us right now, and deal with bite-sized chunks. Our husbands are still sitting next to us, they are still the same people, and we can still enjoy the same laughs and memories together that we always did. That’s precious time..

Sending good vibes to you, take care of yourself x

Hi Catherine I'm also very sorry about your husband's illness and your struggle. You have described exactly how I'm feeling. I really thought it was just me feeling like this. Sometimes I feel like I have already lost him which I know that's very negative thoughts. Our lives have changed so quick it's really hard to come to terms with. I know what you mean about adverts and songs it feels like you can't escape it. To me the cancer seems like a big monster just wondering around in our home.I wish I could open the door and say get out !! It's the feeling of the unknown that scares me. My husband will be starting he's chemo in a couple of weeks I'm hoping he will beable to cope with that. The ongulist is giving him a cancer inhibitor chemo which sounds really postive. I hope you don't mind me asking what stage is your hubby at .? Also what treatment has he already had ? Sending hugs once again thankyou for taking the time to reply x

My husband was recently diagnosed with secondary cancer of unknown primary. The secondary cancer is in his abdominal wall. He started treatment on Tuesday. 6 cycles of drip then 2 weeks tablets followed by 1 week nothing. They are treating him with bowel cancer drugs but they don’t know if this will do anything. The aim is to try & shrink the tumors. 

It really is an emotional rollercoaster. We’ve gone from not thinking anything serious was wrong at the beginning of Jan 21 because all blood tests & scans were clear to being told his cancer is incurable within 6 weeks. After diagnosis I felt like I’d never feel ‘normal’ or happy again. After telling family it felt like a weight was lifted & I did manage to feel more normal. I felt like once we got the start date for chemo I’d feel better again but then it started me worrying about the chemo not working. 

I was nervous in the run up to chemo starting & then when they talk about all the possibly side affects it just seems horrific! His first chemo was difficult as oral drugs they gave  him made him sick but they managed to finish the drip. He’s not been sick again but his appetite is completely gone & he’s loosing more weight. He lost about 8kgs before diagnosis & has lost 2kg just this week. He’s worried about having to be taken into hospital & he is finding all the medication hard. 

I feel helpless as there’s nothing I can do except trying to make him whatever he wants to eat. We have 2 young children who keep me busy. I think without them I’d have too much time in my hands to think. 

I never understood when people said ‘it gets easier with time’ but I’ve found it’s true. We just have to adjust to a new normal & live with cancer. 

sorry to read about everyone else’s troubles. Sometimes it helps just to write it down & realise others are in a similar situation. 

Hi Lorraine

Sending a big virtual hug to you. It’s definitely not just you feeling like this. Since all this began for us back in June/July last year, I didn’t get in touch with Macmillan services because I thought it should be for the people with cancer, and that I should just get on with things by myself, because ‘I’m OK’. I realise now that I was very wrong because as carers (who never in a million years expected to have to be that!) we really need support and friendship and to hear we’re not alone. Just to have other people reach out to you and tell you you’re feeling the same way as they are is a bit of a comfort.

you’ll get into a routine with the chemo. We kept a diary - the after effects, how my husband feels from day to day. It really helps after a couple of sessions to look back at the diary and go ‘ok, that’s what usually happens - on day 2 you feel exhausted and sleep a lot; on day 3 the hiccups start and they’re gone by day 5’ and so on. NB the hiccups aren’t for everyone, it depends on the drugs, they all have quite different effects. 

we found having a good stock of ice lollies in is really good - helps with dry mouth eh I chemo sometimes causes. Also special dry mouth toothpaste from Boots and mouthwash. And we also bought a softer toothbrush to be more gentle for a sore mouth. 

My husband is Stage 4 and has had 12 rounds of chemo. In a couple of weeks we will start a different drug because the first lot seem to have stopped working on his secondary cancer in his liver. 

if I can tell you anything else to try and help please let me know. I found at first I didn’t want to ask questions - partly because I didn’t want to know the answer - or partly because I didn’t want to upset my husband.  I had to turn off the Cancer Research ads on Facebook because the stories were scaring me and upsetting me. The practical information I can deal with and I find a bit more comforting - because they are things I can deal with and control!

So, ice lollies, soft toothbrush, treat foods (as his appetite might change when on the chemo) and things that make you both happy! We got a new telly and blanket for the bedroom and we watch telly together in bed in the evenings and at weekends when he’s feeling cold or tired. 

Take care and be kind to yourself xx

I know exactly what you mean, my mum was diagnosed with likely spinal mets a week before Christmas (actually turned out to be myeloma) and my brother with oesophageal cancer the week before this. So dealing with the emotional fallout of my mum coping both with her diagnosis and my brothers, aswell as her changing mobility has been a rollercoaster. From feeling like we’ve been slapped in the face (twice in a week) to coping with Christmas, the difficulties covid has brought (brother hospitalised emwith covid in the new year and so surgery not an option as chest is shot), to actually feeling relieved that mum was diagnosed with myeloma instead of mets, we have been all over the place. Trying to keep sane and positive, whilst keeping it real, working full time and keep everything going in my family is a job but I suppose work at least gives me a distraction. The finding out is definitely tge worst but then the regular test results and waiting fir treatment is torture. Diagnosed with neoplasm the week before xmas, and waiting gor full redults on 23rd March re. type of myeloma and treatment options seems far too long. So frustrating.

1. Hi Catherine hope you are feeling ok tday ? I have to apologise I'm not very good trying to make my way around this site lol . It may just be my phone. Anyway I would like to Thank you for your message you have have me really good advice and tips. I will definitely try everything you said. I really want to be prepared as much as I can so I can make my husband as comfortable as I can . Sounds like you are doing an amazing job well done. This is all very new out has happened so quick. It has had a knock on effect to all the family. My family say I'm been strong but I don't feel it when I can't stop crying when I'm out the way of my husband. Things are really difficult I got diagnosed with bipolar 15 years ago. I really struggle with that frim time to time but in the light of things that's nothing to what husband is going through. I am really nervous about chemo but in the same way I really want this to get started. January 2nd he got diagnosed he has had 4 doses of radiotherapy few weeks ago now it feels like he's just been left till end of the month. I feel like the longer he is left without he's chemotherapy it may by growing more. I know this is not true but it's difficult not thinking that. I try to rest but it's really difficult my mind never switches off. It's the unknown what is scary . We can only stay postive. I am trying to learn not to take to much on. Anyway want to thankyou again for your great advice and kind words sending hugs I did send a request I hope it worked. Please try to keep in touch x