Feeling absolutely exhausted today. Hubby is really going through the mill at the moment. The methatrexate is making his mouth really sore , not like with other chemos, this drug crystalises in the body and makes the inside of the throat feel like it is closing over, the cheeks and gums become swollen and then start to fall apart. All the food I have tried to tempt him with has ended up in the bin. This happened last month and even the district nurse was worried but the consultant said that it was due to the Methatrexate and that we just had to get on with it as there is nothing that will make it better other than time. I have just given him some oramorph just to see if he can get some sleep away from the pain, cleaned his line, changed his clothes and I feel so sorry for him as there is nothing more I can do to make it better for him.
I have spent the last two days feeling very guilty as other than see to him I have done nothing, I have my own health issues and my body is feeling the strain at the mo, but it does not stop the feeling of guilt if I am not doing everything.
The nurse at the hospital asked why we did not ask our mac nurse to come out and give hubby something when he was so bad. I just laughed at this, we had one of the best Macmillan Nurses for about 8 yrs but she went on to bigger things. The one we have now does not even pick up the phone. A district nurse called back in March at our home just on the basis that we were OK, I explained about the Mac nurse and the next day she called, what did we want her to do for us, she asked. Hubby said maybe some support with her speaking to our docs when we were worried, her reply was that this was not her job. That said it all to us and since March we have not heard from her at all, I know the hospital send info to her because hubby was under palliative care at our local hospital, where she is part of the team, although I must say that since the palliative consultant left last November we have not heard from that team at all.
People tell me how they are getting alsorts of support and why aren't we. The only thing I can assume is that because this is nos 7 in 14 years, the support teams think we can just cope with it. Even our GP does not come out to check hubby - the new nurse at the surgery sent a letter last week because she had seen some blood results in hubbys notes, she wanted hubby to call in to see her to discuss these results. I called the surgery in total suprise and said that obviously hubby would have abnormal bloods due to the fact that he is undergoing high dose chemo, the answer came back that she did not know!!
Well I suppose I am just letting off some steam, it is the only way to stop myself from having a breakdown, so forgive me for moaning.
Ray xxx
