Just when I get my head around what is happening everything changes

Hello Jkg

It is certainly turning out to be a crazy cancer journey for you. I am so sorry that you are going through all of this. 

It must be tough that just as you are getting your head around things the goal posts have again seemed to have been moved again.

I can understand it must have been worrying to have been told the changes to the chemo and having to go to the main centre in Leeds but I suppose that if they are the experts, then they will be able to ensure that you get the best treatments possible. I am sorry that you will have to stay in for 5 days each cycle but I am sure you will be looked after very well and will be in the best place to have any side effects monitored and treated. 

I hope that your CT scan on Sunday is as positive as it can be. I hope that it does not show any spread but it is perhaps somewhat reassuring that the type of tumour they have found, although very rare, is known to respond to chemo.

All of this must have been an awful shock for you and please remember that the Support Line is there if you feel you need it. It is very natural to feel down and have all these thoughts. My advice is to talk about them if you can and express how you feel. Keeping the worries inside does not help. 

Jane

Hi Jane

I had a talk and a cry with my CNS on the phone the other day and have talked with my husband and daughter who have been with me to all my appointments. We have shed many tears but talking is good. My son is the opposite, he tries to avoid the subject at all costs. Ended up just sending him a message with all the information and telling him how serious it was and that he needs to let his brain process the fact that I might lose this battle so it doesn't hit him like a ton of bricks if it does happen. I just have to accept he has his own way of dealing with things.  

I am glad that your CNS is being supportive and that you are getting support from your son and daughter. I think you are right re your son needing to process it all. Everyone is different and his avoidance may just be his way of coping at the moment. 

There is a Maggie's centre in your area and I wonder if it might be worth getting in touch at some point.

Maggie's Yorkshire | Maggie's (maggies.org)

Jane

Sorry to hear you're having such a stressful and difficult time. It does sound that they are organising the scans as a matter of urgency and, as Jane pointed out, Leeds will have the expertise to deal with your care and treatment. It's also good that the tumour should respond well to the treatment. Nevertheless it's still a lot for you to take in; support is important so keep talking to those who you feel able to engage with and nothing wrong with crying, it's a natural instinct in these circumstances. ×

Hi Jkg 

I'm very sorry to hear all that is going on for you. Reading your post reminded me so much of my own situation last year. It was the year that just kept giving, bad news mostly.  Every time I had surgery or tests, there was more developments. This carried on until the stage and grade were the highest they go. It was unbelievable and shocking and has totally changed my life but there was also some relief that the news could get no worse. I struggled with groin pain, difficult to climb stairs and walk. I bought a walking stick and shower stool from Amazon. Now I'm not saying that the situation is the same, it's just that there are similarities. Have a look at my profile if you want to.

It's awful to comprehend all that is going on for you right now. However, although I am stage 4 and probably won't have a long life, I did get to the end of my treatment and my cancer has been stable for 1 year. My CNS also told me that aggressive cancers usually respond well to chemo but they still weren't sure in my case as my cancer was just doing its own thing and had surprised the team all the way through. I always say it went a bit Pepperami, if you remember the advert. I didn't like the thought of losing my hair and mine was also shoulder length. I had it cut short prior to chemo and when my hair started to hurt during chemo, my husband buzzed it off for me. I took control, if you like. I've got used to it short and won't grow it again. 

I hope you don't mind me responding. My cancer journey has been unusual and is not really happy ever after but I'm still here and my treatment was successful. I am hoping for the same for you.

A x

Hi Sistermoon

A year later and you are still here. That does give me some comfort. Just have to take whatever is thrown at me and somehow get through it.

Hi Jkg 

It's all you can do but you will because you have to. When I was having chemo and radio, people said I was brave and tough etc etc. No, I didn't have any choice, it was onwards and hopefully upwards and I hope it's the same for you, that the treatment works, helps your mobility and gets rid of your pain. Keep us informed of any developments. We are here to support you.

A x

So sorry to hear how complicated things have become with your cancer. Given that it is an extremely rare cancer it looks as though your oncology team want to keep a close eye on you hence being an inpatient. It will allow for them to address any issues that come up during the treatment.

Is the plan that radiotherapy will follow or will it depend on your response to chemotherapy?