Brain tumour support

Hi, hope things have settled a little with your husband and he is as fatigued. 
We had an appointment with Consultant last week and they are really pleased, the tumour has shrunk even further which they say is not common. Clearly we had lots of tears in the appointment, this time happy tears. We are now on 3 monthly MRI scans then review. 
sending love to you xx

Hi, so sorry to be slow in replying, for some reason you had landed in my spam email folder so I only just spotted you!  What lovely news to hear, I am so chuffed for you both.  I hope you can enjoy a bit of normal life in this new phase and I hope you continue to amaze the consultants and have lots more happy tears.  We should start Cycle 4 next Monday 29th.  His last scan they said they couldnt see any tumour growth so were pleased with him and the extreme exhaustion he had with Cycle 2 they thought was a hangover from the radiotherapy (they called it somnolence) and they must have been right as Cycle 3 was thankfully nowhere near as bad.  He goes through his phases with his moods and still isnt keen on going out much, apart from local walks, or mixing with too many people, but is able to enjoy most food now which is a great improvement.  I am seriously so pleased to get your good news so thanks so much for sharing and please keep doing so.  much love to you both xx

Hi, so glad you also got positive news with no growth on the tumour. Hopefully it was just somnolence and hubby starts to feel like socialising again. Glad he can enjoy food again, it must have been awful.
We are trying to have some normality again and have just booked a holiday for our Ann in September. Travel insurance quotes while still in chemo treatment were up to £4,800 for a single trip. Latest quote with Total Travel Protection £105. 
Sending much love back to you. Xx

Thrilled to hear you are getting a holiday together, that is really exciting.  Hope you are going somewhere lovely and relaxing.  Excellent news about the travel insurance coming back down to a normal level.  Really hope your hubby continues to surprise your consultants.  much love xx

Hi, have been putting off writing this as writing it down makes it even more real.  Sadly hubby hasn't been well and his latest scan shows his tumour is back and bigger than ever.  Chemo stopped after cycle 4 as they said no point in going on.  he is back on steroids etc and we have been discharged to Community Palliative Care.  his symptoms are confusion and lack of short term memory so is very repetitive and frustrated and just overall not himself at all.  He is also very very tired.  These symptoms will all get progressively worse they say over the next few months.  we've had local Hospice Nurses visit the house to see how they can adapt things for him when they need to as they anticipate his mobility and energy will deteriorate.  but otherwise we have no regular visits we just sit and wait for things to get worse and then we call for help.  his symptoms came back almost overnight when the tumour touched something in his brain so i feel he is suddenly already almost lost to me there are only fleeting glimpses of who he was.  i need more support from his family who are struggling to deal with this in their own way as i am on my own with him coping 90% of the time and have so many emotions i don't have the space to process - heartbreaking, suffocating, exhausting, i could go on. i can barely have a phone conversation privately as hubby follows me so i am very isolated a lot of the time as he also doesn't want friends to visit, although sometimes he agrees and by the time they get here he has forgotten so i'm never sure whether to just organise visits anyway so i get a bit of a break and some other human interaction which i am desperate for.  i know there isnt anything anyone can really say to make this any better and i feel pathetic that i am struggling so much and know i need to get a grip on myself and be strong for him, but i needed to let it out so thanks for reading xx

I’m sure there are no words I can say that will really help. I’m so sorry that hubby has deteriorated and that you are back at the peak of the emotional rollercoaster. 
I want give you a hug, please accept a virtual one. You are certainly not pathetic, you are a strong wonderful person caring for hobby. I know we say “in sickness and in health” but we didn’t sign up to this! 
You really do need to arrange visits with people for your own sanity. Not sure where you live, I’m in Middlesbrough. I’d be happy to arrange to meet up with you if possible.  I could give you a hug in person. 
it’s a very cruel world we live in and I have started to resent these people who have never worked a day in their life and expect benefits and are fit and well!! 
Thank you for the update.

This is such a hard time for you both. Accept as many visitors as you can as you need it more than your husband.  You will feel so many emotions all in one day that it feels like you cannot do it but you will. My husband was told that his tumour had shrunk after his 6 cycles of chemo then two months later it had grown into his brainstem. It is a cruel illness. 

The hospice team will be a god send when you feel that you need them, do not hesitate to call them - they enabled my husband to die pain free at home with me and his dog at his side.

Sending you so much strength and hugs.x

Thank you for your kind words.  I am so sorry for your loss and hope you are doing as well as you can be and taking care of yourself.  I struggle with the long days having the same repeated conversations again and again all day with him as he can't remember.  His family pop in for a couple of hours every few days and then go off again saying how worried they are and how bad it is for them but they have no idea what it is like doing this alone full time.  This isn't a competition as to who is more heartbroken!  I am going to have to go against hubby a bit and get friends to visit more and see how it goes as i am struggling for more human interaction and support.  i don't want to upset him but it is so difficult as he doesn't want me going out and leaving him with anyone so i feel quite suffocated sometimes.  I feel bad saying all this but this is so hard.  You are right life is so cruel and I can't believe this is really happening to so many of us xx

thanks so much.  I am south of London so sadly a long way from you.  You are right i need more hugs and am going to try my best to get friends round more so long as it doesn't upset hubby.  Nobody deserves to go through what we are all going through.  your anniversary trip must be coming up soon.  cherish every special moment.  thanks again for your support xx