Overwhelmed!

Hi TraceyT 

Welcome to our community, I hope you find it both informative and supportive.

Since you say you spend 30 years in the caring profession I would guess you are familiar with needs assessments and also carers assessmnents. As carers we are essential to support our loved ones and it is important to try to make sure we don't break - that can be a hard lesson to learn one one I did not get to until I almost broke. 

Of course one of the typical things with becomming a carer is that one day we are not and then we are.

<<hugs>>

Steve

Thank you Steve, to be honest all my knowledge seems to have evaded me, but as my husband is ex military, we have now got a RBL case worker who has guided and helped, I’ve also reached out today to an old friend who has been through the same situation. Many thanks for replying 

Hi Tracey 

Aside from the type of cancer, reading your post, I could well be reading the exact same post, that I just came on here to write with the exact same feelings.

It's so hard isn't it? I too feel utterly bereft and overwhelmed.

My 53 year old husband was diagnosed in Nov 2023 with T4 malignant tumour at the G junction between his oesophagus and stomach.

Pre-op chemo wasn't effective. May 2024 he had his stomach removed and part of his oesophagus. Prior to diagnosis, like your husband, he was so healthy. I could count on one hand how many times he had needed a Drs appointment during the 17 years we'd been together at that point - he'd never had an operation or overnight hospital stay. He's never smoked, drank alcohol in moderation on holidays or special occasions only, ate well, exercised regularly and was the right height and weight.

He wasn't even ill when diagnosed - he was still working in his job as a senior, offender manager prison officer which he'd done for 26 years. He just felt uncomfortable when swallowing food. When it hadn't eased after a week or so, he had an appointment with his GP and was referred for a endoscopy. We were completely blindsided when they told him he had the largest malignant tumour.

Still he was otherwise in the best physical condition for the major surgery and apart from some issues with the incision reopening at both sides needing packing and daily dressings that twice became infected, his recovery went well and we thought we were over the worst.  By September 2024 he was discussing returning to work after Xmas after rebuilding his strength and putting some of the weight he'd lost back on.

But towards the end of October he started finding lumps around different areas of his body. CT scan and ultrasound were inconclusive but after a PET scan he was phoned and asked to go in to see the consultant the next day and to bring a family member.

We knew it was bad news but still didn't imagine it to be as bad as it was. On Nov 22nd 2024 he was told the cancer had escaped from the primary site prior to the operation but had been too small to detect, and had since grown and spread throughout his lymphatic system, muscles and organs - that they could only do palliative chemo to try to give him longer but he was looking at months rather than years.

Between Dec 2024 - March 2025 he was quite ill though managed our wedding day on 4th Jan 2025 - which I organised over 6 weeks - wed spoke about getting married over the years but had never got around to it - we wanted something positive to focus on and to have a happy, memorable day - we had a full, proper wedding but with just 22 guests family only.

He was admitted into hospital various times (including 2 days before the wedding) - feeding tubes, different medication and radiotherapy on a growth in his cheek affecting him opening his mouth to eat all were sorted and between March - Sept 2025 he was very well - he was decorating, helping out in the garden, driving, the chemo they switched him to in March 2025 was helping without any side effects.

We even managed to go to Spain for 2 weeks in August 2025 - after thinking we'd never go abroad together again. I was optimistic that he'd defy medical predictions and get better.

Sadly towards the end of Sept he became unwell again and since then it's been one thing after another.  Now he's extremely unwell - he's lost even more weight and his legs look like they're going to snap. He's stopped eating much, stopped drinking much, he's on lots of strong medication that leave him sleeping or out of it most of the time. He's now struggling to get up and down stairs, in and out of the bath or shower and on and off the downstairs toilet. He's been admitted into hospital twice since mid November and there have been mess ups in hospital that have increased the stress.

The GP practice never amend his prescriptions when the hospital staff change dosages so I'm forever having to get it sorted, our allocated pharmacy never have the meds he's been on for some time now in stock when I go for his prescription despite ordering it it advance of needing it - so I have to drive around different chemists trying to find one that has the required medication in, despite low hemoglobin levels twice now needing blood transfusions, he hadn't had his iron levels checked on blood tests until I raised it upon which the Dr agreed it would be a good idea to check them (! so why they hadn't I'll never know) - upon checking them they were very low so he's now had an iron on transfusion and due another on Thurs. He has a chest infection, got a 1 week course of antibiotics which haven't done anything so I need to phone his GP tomorrow to get that looked at again. He's lost his voice now and can only hoarsely whisper (nothing to do with the chest infection - his voice has been like this for a few months now) - so communication is harder and harder.

The pcommunity palliative care team are involved, but didn't come to see him for weeks (for various reasons) - but finally saw them at the weekend and they're arranging a physical therapist assessment for equipment in the house to make it easier for him to go things.

Like you, we don't have any family or friends who are able to help out practically and it's all down to me - I don't mind caring for him but it's all the additional stessors that are grinding me down (like the mix up with the iron testing, like the GP and pharmacy problems, like the fact that nobody pre-empted getting equipment for the house ready so we're now left struggling whilst awaiting the assessment etc - but they were super quick to sort out the DNR form). My youngest son (just 18) is also adding to the worries, obviously it's a lot for him, he was sitting his GCSEs when this started, he did ok but isn't doing well on his college course and is failing to attend a lot, disappearing with mates instead and smoking too much weed.

I'm crying everyday, I'm overwhelmed everyday, I'm worried everyday - today my husband didn't get up until almost 5:30pm - I was going a 40 min drive to pick up his 20 year old daughter whose birthday it was a few days ago to bring her to ours so we could give her presents and get a takeaway - I wanted to ensure my husband was downstairs on the sofa with everything he needed before setting off so I wasn't worried about him falling downstairs etc - but he didn't get up when I'd told him I was setting off in 15 mins and wanted to know he was ok before going. I asked him (when I found him still in bed) if he wasn't feeling up to it and wanted to rearrange, but he said he wanted his daughter to come - I was upset leaving him - stressed driving 40 mins there, 40 mins back then both journeys again taking her home a few hours later. I got back home at 10:30pm and my husband went straight back to bed saying he was tired and cold - it feels like I've already lost him and it's heartbreaking watching him get weaker and weaker.

The community Macmillan nurse tried phoning him last week, he didn't hear one call and didn't answer the 2 calls the next day as I was out of the room and when anyone phoned him, they can't hear him when he answers.  So I sent her a text (last Tuesday) explaining why he hadn't answered, telling her he has deteriorated a lot and that we need more support now and asking her to phone me.

I haven't heard anything back from her. I feel like all the posters, the TV ads and programmes you see portray that people who have cancer (especially terminal) and their families get a lot of support - I don't feel like that's been our experience - I'm really struggling and I keep telling professionals that we need more support but I don't feel we're getting it. My GP has referred me to social prescribing - not sure what if any help they'll be able to give, my friend who works for our local council put in a referral to adult social care when I spoke to her about how difficult it all was - I got 3 phone calls the same day from them and was told they'd phone me back later that day with information about how they could help - they didn't phone back and I haven't yet heard from them since.

Maybe the support will materialise - but right now, every day is harder and harder - and when I feel overwhelmed by it all, I then feel guilty as I don't want to make it about me - it's just so horrible.

I hope you get some support - I have family who check in over the phone, but none truly understand and most are unable to offer any practical help (my mum is 96 and housebound; my brother has 3 autistic children plus physical and mental health problems of his own that his wife is supporting; my husband's mum is caring for her husband who has lots of complex health issues and other family just don't consider supporting us).

AnIts difficult I suppose, for anyone who hasn't lived with this, to truly understand - if you want to message me at all, just if you have a bad day and feel like off loading to someone who is going through the same, please feel free xx

I just wrote out a reply explaining that I am in a very similar situation (I could have written the exact same post just changing the type of mestastistic cancer my husband has - but everything else - how healthy he was prior to this, how blindsided we feel, the lack of support from family and friends for various reasons, the feelings of being overwhelmed etc).  I explained my husband's situation, how weak he now is and, how much I'm struggling. 

I also said if you ever wanted to send me a message, if you have a bad day and feel like off loading to someone who is going through the same, to feel free to.

I'm not sure if it takes a while for a reply to appear, but my reply hasn't been added to the thread, so I'm not sure if it's disappeared (apologies if it takes a while and there ends up being my original longer response and this one) x

Thank you so much, I really appreciate your reply and offer of support. And likewise, please reach out to me too.. our feelings are valid and as much as people say they would like to help, they don’t know how it feels until it’s experienced first hand . X

Wow, i just received your original version and yes, i can relate to it all , although our back story and cancer is different, i can relate to all of the above . Including our surgery not being as officiant as the hospital re meds or the chemist not having the stock. It’s a constant battle!

I'm just constantly crying - my husband is so poorly and I just don't feel we're getting any support - I've just contacted his GP practice to book an appointment as a chest infection he's just finished a week's course of antibiotics has just got worse - they've said we'll get a phone call from the GP this morning - I've had to give my phone number as my husband can't talk anymore so I have to talk for him - I had a dentist appointment booked for 9:20 as been having toothache for some time - but I'll have to cancel it as I won't be able to answer the phone if the Dr phones whilst I'm having treatment - it's a mess - he struggles and takes ages to get to the toilet so I just had to bring him a glass to pee in - he's only 53 - I'm utterly heartbroken - I'd been waiting for a response from the Macmillan nurse - I've just realised I sent the text to a landline not a mobile - so that's why I haven't had a reply - so will phone her at 9am - see if they can provide more help x

I read your messages with such sadness. We are perhaps not quite at the same stage but my husband has advanced prostate cancer diagnosed less than a year ago. It has progressed to thoracic spine, pelvis, hip, ribs, lumbar and sacrum. He has had HT, chemonand RT in the last 10 months and just had RT to ribs to try and manage pain. 

Every day is a another day of managing pain relief. Its really only been in last couple of months I've had  more contact from local hospice team, one visit and several phone calls. They are good for advice. However I feel I've had to fight hard to bring oncology reviews forward, get a GP home visit etc and as others say chase updated prescriptions. 

But no one really understands the day to day and even hourly living with this either as the patient or the carer. People think you take a handful of pain killers and that's you sorted. I've been frustrated at professionals whonsaybdo your normal things. There is nothing normal in our life now. Night times can be exhausting for us both as you never know how it will go.

I see these comments about specialist nurses etc which we've never had assigned. I know for some prostate cancer is slow moving but I feel my husband has had and complied with all the treatment and his PSA continues to rise. He's been unlucky in his response and recovery I feel and its quite aggressive. 

It's a hard journey and I think pushing through day by day and making noise for the help you need at least gives you focus. 

Take care. Sending you love and hugs xx

Hey lovely, my hubby was rushed into hospital last night with complications but they are being really thorough, more so than oncology who as far as I’m concerned just left us to go home and die. This team at Warwick in generaL Ward seem to be determined to get him mobile and have a better quality of life.. I’m using the time to sleep and process. You take care and let’s keep

in touch 

Thank you for replying, my hubby was rushed to hospital

last night with complications but so far so good.. the medical team are doing more than oncology. I’m using the free time now to sleep and process things quietly. Let’s keep

in touch and we can help each other through. Take care Tracey x