Bowel cancer CARERS, FAMILY & FRIENDS chat

Oh Jkee!

Don't know what to say. I am so sorry. You will both have been so psyched up for this only to be let down at the last minute. Some of these specialist sometimes don't realise they are playing with people's lives. Cancer is definitely not something that can `wait` I used to tear my hair out with them if Jay ever got delayed for anything and used to think to myself how can they be so lax about this. I would have thought that for someone at Simon's stage they would be trying to do something ASAP. I can only imagine what you are both going through. Please look after yourself praying you will eventually get somewhere. Sending hugs and strength.

Vicky xx

 Jkee 

Sending you lots of love . It’s a tough situation . Mum always had to be off chemo for six weeks before surgery . With it being a surgical decision it is not the first time the oncologist thought something was not technically feasible but the surgeon thought there was a window of opportunity. The scans will go to another Specialist MDT meeting so you might want to ask who you can contact for a decisions there . If rejected quickly then at least chemo would be restarted quickly . 
Remember your GP should also be kept informed through the clinical portal if they share it so might be able to let you know if information is not coming through quickly .

I feel for you . These decisions are harsh but at least he has recent scans they can work from .  Keep pushing if you have the strength as they might get onto the next  mdt and lessen the wait . 
Did you say he was going to be using immunotherapy ? Still a lot of hope with that too .

But it’s exhausting and depletes you .

Hope you get to spend some time with your family as you wait .

Much love 

Court 

Hello Everyone!

Happy New year to you all. I hope this year will be good for us all. My year hasn't got off to a good start unfortunately. I was at the hospital with my sister Margaret yesterday she was getting her echocardiogram scan and it turns out she has a leaking heart valve. I just went into shock. I know its not all about me its her but just hit me for 6 when the specialist told her. She was quite amazed that she had gone through two cancer operations already. This she said is something that can't be fixed with a tablet and another operation of some sort will have to happen either to repair or replace the valve. They don't know when yet as she will need to go through some tests before it I think to make sure that she is fit and able to go through it but it's not something that can just be left it needs to get seen to. I honestly thought that this year I would not see another hospital other than outpatient appointments for Margaret. I got a bit overwhelmed by it all last night and just broke down in tears. I think because of everyone I have lost recently this triggered it all again. There's nothing that needs changing at the moment and it's `business as usual` as they say until we hear anything. Never rains but it pours. Take Care Everyone. 

Vicky xx

Oh Vicky I am so sorry about Margaret. It is amazing that she has had operations as well.. I am just taking it day by day at the moment. You are right it never rains but it pours.   Personally I would feel the same as you.  Each hospital appointment I can’t bear and it would trigger everything off again.  You are strong and can do this and I think we surprise ourselves at times how strong we are even when we are scared for them.  I do feel for you.  Margaret will be good and she will get through this.  Keep being positive for you and her. I must say that was not a good start to a new year. As you know we are all here for you. 

Jkee how are you and Simon coping?

sending strength and love to you all xxx

Morning so sorry Vicky I was sad to read this today but you know your sister is really strong and I am sure again she will be it's not so much the person going through it as us that are having to care and watch and chased and book appointments and hospital visit life used to be so easy if only we could go back and slow it down and enjoy the days rather then rush through them especially where the children were little. Our  story has changed again I had a letter on Monday for Simon to have palliative chemo today but in the same post a letter from Christie's at Manchester giving us a out patient on the 24th as you can imagine my head was in a spin do we go to chemo they cancelled last week in case Christie's offered him a operation. Tried all day to speak to oncology no luck left messages rang Christie's managed after many call to speak to the secretary explained Simon's Cancers have grown a lot and he is in pain so the pet scan you are looking at  is not up to date and that I don't even know if he can wait to see you at the end of the month as he is deteriorating left her to get in touch with surgeon must just say also Manchester is 2 and half hours from here. Next day our oncologist rang and said he was shocked they are going to see him but 100% worth going in case they can take everything away and get us back to where we were whatever that means not even touching the lung cancer massive operation. I told the oncologist he is in pain now and growing but apparently MANCHESTER wants a mri done at the Christie before we see them no appointment yet no doubt will have to chase. So basically still left with no treatment until Christie and Simon say yes or no to a operation to remove th cancers in the small and large bowel stomach and artery very small life line. I did ask if they say no bearing in mind no treatment since October what else can we still have palliative chemo he say it is read for day after if no and also immunotherapy. SORRY for the long essay but that is what is spinning in my head not sure  how to think just wish they were around corner my family wouldn't be able to drive on the motorways but Simon is happy to be on his own with his tablet and phone let's wait and see just hope Simon is strong enough even for outpatient hospice team have been arranged a doctor to set up morphine for him but needs a home visit first. Sending love to everyone hoe Les is coping with chemo xx

Gosh jkee how can you take all that in. I did watch a programme last night called surgeons something and they gave this lady the chance and took all the tumours away from bowel, stomach and perrineum and liver to give her a chance and it was a success.  Keep pushing as I know it is hard but keep going for Simon. Two and a half hours away is miles.  At least we only had an hour and I stayed 2 nights at Newcastle and daughter took me every day. I certainly would not like to be in your situation as I said les had to be off chemo for 6 weeks before they would operate and a fit test for the anaesthetic. I hope Simon is still walking etc as that will help.  I just don’t know what to say to you as it seems you are getting no answers.  One step forward and ten back for you and Simon. I do wish you all lived closer as we know what it is like on the other side with worry, anxiety, mentally draining. Keep going jkee you are strong.  I will send you a big hug .  Thinking of you all.  Lots of love Maggie xxxx

Thank you Ladies!

I have managed to calm down a bit. I phoned William the other night in floods of tears just got so overwhelmed as I said. Allow William though `Mr voice of reason`. Definitely a young head on old shoulders that boy. He said to me `mum calm down she's not going anywhere she's been walking about with this for how long and you have been none the wiser so if they didn't tell you this today you still wouldn't know. This was discovered apparently when Margaret was taken in for her breast cancer operation 6 years ago but at the time it was something seemingly that was not urgent and concerning and so was left and they wanted to concentrate more on the cancer but just over those years it is something that has got steadily worse. She's been staying with me the rest of this week and she's going back home tonight. I say going home but she's only along the road from me. She's neither up nor down about it but  she said to me earlier today it has just `sunk in` about her heart problem.

William phoned me today they were away arranging their marriage licence and asked me how his auntie was doing. He said he thinks it's not as serious as they think otherwise if it was they would be trying to get her in asap if they thought so. I've been `Dr Googling` which I shouldn't and looked at the different ways they can do this valve surgery. I'm hoping they opt to do keyhole surgery with her as with that she just gets a local anaesthetic so can remain conscious but that will be up to them and then she needs to get tests beforehand as I said before they decide what route to take and what would be safest for her I suppose. I'll keep you all posted. Jkee your head must be all over the place just now. What a dilemma you have and as Maggie says how you could take it all in god only knows. Thinking of you all and sending hugs and strength as usual. Take Care.

Vicky xx

Vicky, William is right and never Google as that usually gives you the worst. Les has never googled and won’t. I don’t google as it gives you the worst case scenario which makes anxiety worst. Mind I do watch the tv on certain programmes which I shouldn’t as that makes it really bad. As William said they would not hesitate to have her straight in. The consultant I work for and very fit had a quadruple heart bypass just before Christmas and because we did not know even his wife and children, one a GP were shocked as he told no one.  They said they could operate in 3 months but went private and had it done the next week. He is 78 and again as fit as a fiddle and works 7 days a week.  Please try and keep calm and think positive for Margaret. Sending you and all a huge hug xxxx

morning ladies. How are we all coping. I have had a terrible few days with anxiety etc. les goes for a scan today and sees oncologist on Thursday. Our lives and yours seem to be appointments and never get a break.

jkee and Vicky how are you coping with all the traumatic stress. Just thinking about you all. Sending all my love Maggie xx

Morning Maggie to be honest it's be hell still waiting for a Mri scan at the Christie Manchester rang the MRI department a rude lady said nothing until at least end of feb explained Simon is terminal no treatment need the scan urgent before his appointment 24 January she just said this is a Cancer hospital we have a backlog.Tried all week to speak to surgeon to explain this no reply tried to speak to oncologist to tell them no appointment what do we do no one rang us back.We have just been left my daughter left messages begging them to help eventually a colorectal nurse from Manchester rang said she tried as well but no appointments and to give us till tomorrow we have decided to pay them private if no  appointment someone at the Mri department is playing god with our lives it feels.What a nightmare just leaves you angry the hospice have been amazing keeping the pain away and the end of the day if no operation offered all that time the Cancers are growing sending hugs your way xx