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New symptom

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Tomorrow we are meeting our Macmillan nurse for the first time, the district nurse came today and has decided we need to meet her. This is due to Jon's very low mood and he has had a new symptom of back pain, for several weeks now. This was just an ache up until a few days ago, when he had a bout of severe constipation. He decided to stop his Oramorph until we could get this constipation sorted with laxatives. It is now a lot better so the Oramorph is being started again tomorrow.

This is the long way round of saying that we think the Oramorph has been masking the full pain of his back. We need to know if it is just a "normal" pain or if the cancer is on the move... always the question, what is "normal" and what is not.

Jon is now not as good as he was a week or two ago, his weight is starting to go again, I can see it in his face and his arms. He is still a big chap round the middle, but that is also showing signs of getting smaller. He is still getting out in his car with the dogs to the park, but he only walks a few yards with them and then goes to the little cafe to watch the world go by. It's the only thing that keeps him going, sometimes I go with him, sometimes he likes a little space. That's fine as long as he has his phone with him. He is becoming so much more tired these days, it makes me so sad to see him like this. We both know what is happening and try hard to still have smiles and laughs, but it gets harder as time goes by. We had a big family meal last week including the grandchildren, Jon asked for this, he wanted to say thank you to everyone for all the support they have given him/us. We had a lovely time and got some lovely photos, but behind it was the fact he wanted to say it now while he still could.

There is just one thing left in Jon's mind at the moment, and that is his son is hopefully coming for a visit at the end of next month. Jon wants to be well enough to go out and about with him and his girlfriend for that weekend. After that I just hope he doesn't give up..... 

As regards the Macmillan nurse, I am pleased that she is now becoming involved, it will give me more confidence to know she is there when I need her and when Jon needs her. He is concerned about the back pain, and she will be able to advise us and consult with oncology if need be. I'm hoping she will be able to help with his mood swings and lethargy as well. So tomorrow, I hope, will be a good day :)

Thank you all so much for your continued support, you will never know how much I appreciate it.

Tina xxxx

Posted by

Hello Tina.

What a tough emotional road you are travelling with your darling Jon. I'm glad you now have a Macmillan nurse. We always put ourselves last on the list when it comes to support don't we, so this should be of some help to you as well as for Jon.

I know it's a frequently used term but being on a rollercoaster of emotions and problems describes  this journey so well.  Sometimes you must wonder what else will be thrown at you and Jon to have to cope with. I feel for you soooo very much dear lady.

I went to see John in intensive care yesterday for the first time since his operation. Tubes and monitors everywhere and quite upsetting especially with the tracheostomy and breathing machine. I stayed for 3 hours holding his hand and he occasionally opened his eyes and managed a smile. I asked if he was in any pain and he spelt out the words on my arm with his finger 'none at all'.   My brave, courageous wonderful man!

I wish you and Jon well with all of my heart Tina and send supportive hugs along with my love to you.

Zute xx 

Posted by

Dear Zute,

thank you soooo much for taking the time out to reply to my post, you are an inspiration! You and John are going through so much right now and I really feel for you both. I have been following your posts as you have gone through this awful time, but have not replied so far.....mainly because I guess I'm too wrapped up in what's going on here. I apologise for that Zute, you too need support! 

The Mac nurse has been and was very helpful to both of us, she has cleared up the vague areas in Jon's medication and has even got him to agree to take some mild painkillers along with his Oramorph. That is a minor miracle lol, I'll be convinced when I see him take them lol  She is also getting in touch with oncology to try to sort a scan/x-ray on his back to rule out cancer being there. Jon is very down at the moment, not like him at all....I hate seeing him tearful and at a loss at what to do. 

So things are a little more positive at least for me, because someone has taken the time to listen, and, managed to get Jon to open up a bit.

I wish you and John well and hope that this op will make him more comfortable in the future are a wonderful couple, fighting on with this horrible horrible disease. 

Big hugs to you both

Tina xxx

Posted by

That's great news Tina!! What is it with some men resisting medication....painkillers in particular? John is exactly the same. If it was me I'd be swallowing everything on offer!

None of us should ever feel the need to apologise for replying to every post. With our individual journeys it can be difficult and everyone understands that I'm sure. We somehow know others are reading updates and thinking of us.

I'm in a good place at the moment. Relieved that surgery is over and we're able to continue on the next stage of our journey. John spelt out on my arm that he feels more positive now. Our lovely, caring consultant who leads the team has been phoning me with updates and answering my questions. He  feels positive about the way surgery went and had conveyed this to John. I know it's not the end of our story but we're looking at it as new beginning for us. You have to grab at everything in this 'game' don't you.

My love and thoughts are with you.

Zute xx

Posted by

Dear Tina,

Like Zute I am so pleased that the macmillan nurse has been and that her visit was useful and positive.  We don't have one ourselves at the moment but when I read about them they do sound rather like mary poppins characters, sweeping in and solving problems and not leaving until everyone is feeling a little better!  I hope Jon does as agreed and take the medication and that the scan shows nothing new.

And dear Zute, it is great that you are able to spend time with John already and his consultant sounds really nice.  Six major operations and I have never had a phone call yet  - it is always up to me to phone and get updates.  It is such good news that the consultant feels positive about the surgery!

Both of you have quite amazing sounding Jo(h)ns.... 

Hiloa x

Posted by

Hello Tina,

I am so pleased you and Jon now have your Macmillan nurse, and I hope that they have already been of help.....Men, eh? What are they like, resisting meds that can help? 

Zute, I am pleased that your John is doing as well as possible too and has been able to spell out how he is feeling.

Sending you and your dear husbands big hugs