Progress following food tube fitting

Topsymum said:

I’m distraught to experience the sad state of the NHS first hand. Heaven help us all.

Heavens. That’s awful. I hope it gets sorted out. Keep on at his MacMillan nurse and raise the issue with PALS. 

Thanks Dani, I am so tired and shocked by what is occurring. Will contact PALS when I get myself together.

Have you got anywhere with this, Lynda?
Have you somebody who can help both with your husband and to help look after you? 

Hi Dani, no, got no where. As of 3.30 today he was still in A&E. Dr saw him about mid day and said the food pipe is leaking he is being kept in the hospital they took him to last night so his cancer treatment is suspended until they sort this out. They will either operate to remove it and replace it or just remove it and stitch him up. This after he was subjected to Dr and his posse attempting to just pull it out, which because it is infected, was very painful for him. A burly male nurse made an attempt with a pair of pliers and Dr told him to leave it alone. Nurse returned when Dr left and said he would have another try! My husband told him no and so he left it alone. A&E sounds like a circus, screaming, crying, singing. It’s driving my husband crazy, he is so tired and just wants a bed. MacMillan Nurse at Cancer Centre says the hospital he is in doesn’t come under their jurisdiction so all decisions will be made by the A&E Drs there. I told Nurse I would prefer him to be at the Cancer Treatment Centre, where the rig was fitted. That won’t be happening apparently. I await to see what ward he will be admitted to so that I can keep our family informed. We want to visit but I don’t think A&E have visiting hours. My Brother, Sister and Sister in Law are supporting me, as well as our lovely sons. It just feels surreal and I am praying for just one thing to go right for my poor husband. Thank you for your interest.

Hi Lynda. What an awful experience for both of you, what a nightmare. Just what you both don't need on top of having treatment for HNC. I do hope that things settle down over the next few days and you can both have a bit of well earned peace. It is certainly an indictment on the health system highlighting their weaknesses at the moment. Sending you both positive thoughts and best wishes for the future.

Lyn

Thanks Lyn, it’s hard to remain calm when there is chaos during one of the most vulnerable times of a loved one’s life. We have got to keep positive because the alternative is too grim to consider. Thank you for your kind words.

Hello fellow wife  I just came across your posting and shocked that this is happened,so sorry about what your husband is going through.Where is he getting treated?  It's just awful. How long is his  treatment plan scheduled for? It's going to be a long journey as it is, he certainly doesn't need this. I hope you are all sorted now and can concentrate on the rest of the treatment and then recovery. My heart goes out to you. Lots if hugs, Mel x

Hi Mel, his Cancer Care is being dealt with in Hull and his current situation is Scarborough. His treatment schedule was six weeks, started 8 April. He is still in the  Hospital awaiting a decision about whether they will operate or not. He has been nil by mouth since his arrival and says he has not been given any of his prescribed medications since his arrival there. I am exhausted and despairing with what is happening. So, unfortunately we are far from sorted yet. I don’t drive so am reliant on my family making a virtual 90 miles round trip to get me to the hospital to see him. The posts I put on here are the very basic details, actual events have been far more badly handled by those looking after him but too numerous to list. I am waiting to see what today brings.Thank you so very much for your message to me. It is so useful to get input from people who have first hand experience of the journey we are on. Dani has also been supportive and both of you ladies give me hope of a good outcome when all this has ended and for that I will be eternally grateful.

Lynda

Hello Lynda, not sure how much my story will give you comfort, but I will try. My husbands situation might be lightly different. He's now 16wks post treatment. But anyway,from when we first got the diagnosis about his throat cancer( funny enough we first got told 'it might be nothing', ) it went rather quick, endless MRIs, PET scans, even a colonoscopy,eventual a mask fitting,he coped with that rather well,some find this uncomfortable, 30 rounds RT and 2 rounds CT,half way ,the treatments side effects started to kick in, tiredness and fatigue,sore throat ,big loss of weight,he's still using his PEG, (which has been replaced since,as the old one was put in before treatment,as a precaution.) Also, he's finally starting to eat food, but finding food that he can swallow and has some taste is tricky. Having said all this, not sure if you actually mentioned your husbands prognosis,is he home by now,has he got his medications sorted?You said he needed to stay in hospital? That is not helping with his anxiety. My husband's emotions at some point were allover the place. So I had to be strong enough for the both of us.We had to take one day at the time,like so many others. I guess my husbands motivation to pull through was me being there, my strength and positivity helped him on his darkest days. I won't lie, I found myself at times crying myself to sleep. But you come to realise it won't get better that way. At some point we both needed our space,and that was fine too. As for transport, most of the hospitals provide transport for patients and their +1, not sure if this helps,but   0800 0323240, this is a transport number ,(i believe is nation wide,) we have been given, after dialing you will get asked to choose the area you live in,ie. we live north west,so had to pick Merseyside. Have your husbands NHSnumber to hand. They will ask you some personal questions,husband's condition,hospital and nature of appointment  etc. It's worth a try.( fingers crossed they can provide the transport for you too).Hope your husband is feeling better by now and is strong enough for his treatment. All our love  Mel +Keith x

Struth, Lynda. I can’t believe what I’m reading. 
I would kidnap him and get him to Hull and that’s not a frivolous comment. 
Was his chest and stomach pain PEG related rather than cardiac? Post insertion pain is really common. Lots of people take pretty strong painkillers and antispasmodics in the early days.