Hi Ronnie 

Im glad your husband has had his blood transfusion. It sounds like you both enjoyed meeting up with friends. It’s nice to get out on a sunny day. Things always seem better in the sun. 

My husband is still able to drive but he only does this if he’s certain the drugs he’s on arent affecting him. Our hospital is only 10-15 mins drive. We are very fortunate.

On his good days you wouldn’t think there was anything wrong with him. Today he was a bit “off” but as the day went in he cheered up a bit

He looks as if he’s lost weight but until he’s weighed next week we won’t know. He’s got a sniffle but no temperature. That maybe why he feels a bit off  

We are seeing a dietician tomorrow at the Oncology unit. His Marie Curie nurse is coming the next day. I’ll have a word with her when she comes 

Hes ok with his cancer meds he still gets a bit nauseous but not as much since he increased his anti sickness pills

All our children have left home. Our two daughters are on sick leave from work and are here every day. They drive us to appointments etc they are a godsend

Ronnie it’s lovely to chat with you  

Best wishes 

Kuiper 

Hello there

It is some time since we communicated and I am wondering how things are going for you?

My husband's chemo was postponed again last week due to low white cell count. So  his chemo tomorrow will be after four weeks. He has enjoyed the break and has got some taste back but I am anxious as he is supposed to have two week cycles.  This chemo will be the fourth but he has only managed one two week cycle, all the others were delayed.

best wishes

Ronnie

Hi Ronnie 

Im sorry to hear your husbands chemo was cancelled. I’m relieved to hear it’s restarting. I can relate to what you are saying about the taste changes. My husbands has changed considerably  he can’t eat any kind of spice any more. He hates the smell of cooking it makes him nauseous. So he eats a lot of cold food and puddings/shakes  

Next week my husband has his first blood test since he started this palliative chemo. I’m praying he can keep taking it. He saw the consultant who’s referred him for palliative radiotherapy and we go late tomorrow afternoon for scanning etc. He will start his radiotherapy after we come back off holiday March 7th. I’ll know more tomorrow after the appointment 

Ronnie, how are you getting along in yourself? 

Ann 

Hello Ann

So how did your appointment today go? Is the treatment continuing? Lovely that you are able to go on holiday. How is your husband?

My husband did gave his chemo infusion today and that was fine but now he has to inject himself with Filgrastim on three days next week. This is to avoid chemo being delayed due to low white cell count. However I have looked up this drug on google and the effects sound awful so I am quite anxious. It seems just when we think we are on top of things something else comes along.

Ronnie

Hi Ronnie

Thank you for getting in touch. He went and had his “tattoos” done for his radiotherapy. They are going to zap the main tumour and smaller ones on L1 vertebrae to try to ease his pelvic pain. He starts it for five days commencing 9th March

I think he’s being incredibly brave about this whole situation. The Radiotherapist was impressed with something he’d said about his prognosis. She said he had the right attitude and strength to try and extend his time with us

Ronnie I’m glad your husband is getting his treatment. He sounds like a strong willed man too. The sheer fact he’s self injecting takes courage, the fact he’s havibg treatment is so brave too because none of this can be easy for him

I hate that mine looks into my eyes and if I’m off guard sees the sorrow. I make jokes and try to be cheerful but it’s so emotionally painful that inwardly it physically hurts. He’s always been so strong but I think the treatment is making him look a bit frail and drawn

This is an evil, cruel disease and I keep praying something will come up to help our men

My heart goes out to you Ronnie. Please try to take care of you. Hope to chat again soon.Sending you a big hug

Ann 

[@Ronnie46]‍ 

Stupid question but how are you getting along? I hope things are as ok as can be in this horrible situation

We went to the chemo unit today to get his chemo tablets. He’s not been right for the last couple of days. Anyway his blood pressure was really high. It remained quite high even after an hours rest where he dropped off to sleep. They suspect it’s a side effect from this chemo. He’s disappointed but it’s for the best. The good thing in all his bloods have remained stable. 

He will be seen in clinic after our holiday. He was a bit snappy this afternoon and now he’s asleep. I’ll see if he wants to talk later 

To be honest Ronnie I was surprised too. The reason being that when I was with him on receiving these tablets the only thing we were warned about was like you said about low blood pressure etc. So we were taken aback. I checked his bp last night it was very high again. He rested and it came down. He’s asleep still  but illche k it when he wakes up 

Ronnie I hope things work out ok for your husband and you as best as this situation allows. I do think about you and how you might be

i had a bit of a meltdown yesterday. We got back with our daughter. I went into the living room and sat there. The next thing I knew he said oh it’s you. I was stabbing my phone case with the sharp end of a biro and not realising. I was so angry and frustrated with this situation. He said what’s up and I burst into tears. I never ever do that in front of him. Never. I told him how frustrated I was about him even being in this situation and it wasnt fair. He hugged me and told me to go with him into the kitchen. I had a cup of tea by which time I’d calmed down. I apologised to him and he said please don’t. He said I’m so strong so one meltdown was ok. If only he knew Ronnie...I’d my bathroom could talk...x

love Kuiper 

Hi there

You poor thing - that must have been exhausting. The silver lining is that your husband showed you affection and appreciation for your support. You said he was a bit snappy earlier on so he is struggling with the anxiety and it is good that he realises how hard you too are finding his illness and treatment. Most of the time I am in denial and fine but now and then the situation overwhelms me and like you, I have a private cry. Thinking about the future is very scary.

My husband is having a scan tomorrow, the first since his diagnosis. I assume that this will show if the cancer has spread and how the chemo is working. Our next appointment is Wednesday 4 March when I suppose we will hear the results. He is feeling fragile after this last infusion and is fed up that his taste has gone again.

Does your daughter come to your husband's appointments with you? Do you talk to her about your feelings as I expect she is anxious too? Are you all going on holiday together? I feel sorry for these people on holiday abroad who are confined to their rooms because of this new virus. Our husbands are just the people who will be worst affected by this virus with their low immune systems. One more worry.

Try to have a cancer free week on holiday and reminisce about happy memories of when you met, when the children were young etc. We find that enjoyable especially when our children visit. Fingers crossed that your husband will feel well enough to enjoy it.

Best wishes

Ronnie

Hi all, this is my first post on here. i hope you are all ok and having reasonable weekends. My husband (62) was diagnosed with stage 4 oesophageal cancer in August 2019. Completed his 6 rounds of palliative chemotherapy and since the last one has been really unwell - seems to be the pattern for all of us. He has been put forward for radiotherapy to stop the tumour bleeding, all seems very strange as they say its asleep and yet since last chemo hes been hospitalised twice with anaemia and is so tired all the time. Sending everyone much love and hope for some peaceful restful weeks for all of us and the time to give our husbands some quality of life after the harsh treatment they've been and are still going through  x