well we have a huge issue we go to Preston hospital every 2-3 weeks to see doctor but its same each time oh your hands shake yes we say all the time he in a great amount of pain 6 months after op failed found a lump in lower bowl removed it but meant can not the op because of it he had a huge rash got meds for that every thing possible he had with it we had first lot of chemo before op then when that failed he got offered autoimmune treatment with 6 chemo's then auto treatment for 2 years only thing is he had the pickle line removed because we told it be by tabs but just found out its by drip so we going to have put back in asp as his veins cannot take anymore takes weeks before he can use his arms after treatment and blood tests ,
now he been told to eat less as he really in pain eating was really good as such but he has a block somewhere so been given meds to make him go softer yea right spends most of the time either on loo dumping or wind and pain he only got 1 more chemo then its autoimmune treatment starts , he had a mri scan as we kept asking about this rash they think its because either the chemo or autoimmune in his system that he became with this rash all over him its gone now was stopped and given steroids to help kill it ,
the thing is why hell does it take over 5 weeks for results of scan because if tumour spread he will not have any more treatment its his choice and i have go with it he been in a lot pain lately with eating he does eat smaller amount ie tonight was 1 burger no bun with 2 hash browns and beans but he in pain till it passes through that's was at 530pm now 1130 and pain still here .we have tried ringing to talk with her but same each time how your hands but yet no one does anything about it ,we cancelled last chemo until we get the results as he just peeved at the treatment or lack of it , the thing is this chemo was worst than the other chemo by side effects the other treatment he could eat really about the same but he lost weight quickly this chemo and autoimmune he eats but pain worse huge wind and gas most of time but he does put weight back on slowly so worried he lose it as they said to eat less but smaller amounts i.e. snacks 1breakfast cereal child's size /10am KitKat /1130 bar of small choc/ lunch i burger with bun or 1 small pie / 3pm KitKat slice of cake/ tea 2 hashbrowns small amount peas with 2 slice of very thin beef gravy / 11pm KitKat , he drinks coffee fizz that's on a good day sometimes its just breakfast KitKat snack apple crumble with custard small amount more custard then crumble ,just lack of results as him worried as if he knew its was working then he carryon but getting the results is a never ending call 5 weeks now still no results ,
i have to say McMillion staff there poor first time we went just after been told about cancer just got phone number that's all next time we tried lady helped get sr1 form so beyond that not really helping when you need them Chorley one lot better , my husband dont like meeting with people so huge problem i have as help with expenses that's a laugh , i given up work to help him cope but its money worries really as government seem to think we have enough he retired age im not so money does not help attall when your retirement age , sorry just needed let off steam .
My name is Steph and I’m part of the Online Community Team here at Macmillan. I hope you don’t mind me responding to your post here today.
I was sorry to read of everything that you're going through with your husband. It sounds like such a difficult time for you both and I hope I can help you access some better ongoing support.
You have mentioned phoning the hospital and the feeling of not getting the support you need. The team at the hospital and your husband's GP will be the best people to assess and provide any medication or other practical support you might both benefit from. If you're not feeling supported and have lots of worries that are not being addressed, it's important that you tell them.
You may have been given a 24 hour hospital telephone number or you could contact your GP, or NHS on 111 to be assessed (24 hours a day). Please do keep them informed about any new or worsening symptoms and how it’s really impacting you and your husband’s quality of life.
I’d also really encourage you to contact the Macmillan Support Line so we can support you with this. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
In case you have some time to have a read, this information from Macmillan may help with identifying who is there to help when a patient is sent home from hospital. There should have been a holistic needs assessment before your husband was discharged. There's some more information here, aimed at carers like yourself.
In addition to talking through your situation and advising on practical support that may be available to you, we also have a special team who can help with your money worries. We know that lots of people are struggling with the cost of living and we're here to help.
Some forums can be a little quiet, so please don’t worry that you haven’t had a reply here from members. You might also want to join our family and friends forum and our carers only forum for support. They're both safe spaces for anyone supporting a loved one with cancer to share experiences and support one another.
I hope you find the support you’re looking for. Please do let us know if you have any questions or need further support with anything at all. If you would like to contact us privately, please send an email to email@example.com
I hope the Community helps to show you that you don’t have to go through this alone.