We Talk Brain Tumours

Hello

and welcome but I'm so sorry that you have joined us ... I have find it really helpful and supportive. Im never really good with written words, (dyslexia i think) What iv learnt is that we are all similar but also different ..we all have our own story to tell

Personally i haven't been in work since the diagnosis in september, i have been off on sick leave for stress and anxiety due to my husbands illness, but i am now going to leave work as i can't see that i can return as he cannot be left alone. My life now resolves around him and this is how i want it to be, i want to be with him, initially we were able to go out and we did with our friends and family, we can no longer do this now.. I don't feel as if I'm coping but i do get through each day and try and stay strong for him and my sons. I do my crying on my own or at least try to. Iv found that we talk brain tumours helps in knowing that your not alone and the people on here are wonderful and caring even though they are also going through they own nightmare        

  love and strength to us all

xxx

Dear Joanna,

I will be thinking of you today, as you were for me last Thursday! I hope the winds calm for you and everything goes smoothly. Take very good care, Martyn XXXX

Joanna,  thank you for thinking of me at a time when you need all your strength and the offer to have you on speed dial, there may come a day when I need it.  I am thinking of YOU today and sending love & strength to help pull you through what is going to be an immensely emotional day.  I hope your Dad gets a fitting send off for the next part of his journey.  

Nikla, here you can say whatever you really feel you want to say.  We don't judge or ridicule and certainly will not think any the worse of you.  We all need an outlet, I am in your husbands position that I am the patient, but so far I am doing very well although I had to give up my beloved job of working with pre-school children.  I don't want my family to see my own despair/fears etc so am lucky to be at home alone (not quite like McCaully Culkin alas) between 8am and 3.30pm before the kids get home (although husband texts every bloomin' hour or so just to check on me and if I don't reply he starts phoning my mobile then the home phone in a panic!).

Shelly I had a cycle of Temozolomide put back a month after the very first monthly cycle because my platelets dropped from 286 down to 55.  There are all sorts of reasons why we need to wait longer during treatment, my friend has bowel cancer and he has had his delayed twice during treatment.  I am sorry to hear of the added diabetes, lets hope now its being treated you will see an immediate effect.

I am watching the post each day now, not for the dreaded bills but my MRI scan date for February, no doubt I will be chasing that up in a week or so!!!

Love & Strength to all who want or need it xxx

Morning All,

I can hardly believe how many new passengers have joined us in the past couple of weeks. Glad you have found us though.

Joanna..thinking of you today. It will not be easy but we know we can cope and somehow get through.

Debs..positive thoughts for your scan. From a virtual viewpoint, you sound happy and upbeat in your posts...good feelings about this scan. 

Martyn and Pete...somehow we get there. The Christmas cards are down but I still have the wardrobes full of clothes and every email and text.I was feeling pretty grim over Christmas ...but the cloud has lifted( as it always does)..and life goes on into this New Year ahead of us. Good to see you posting Naomi and Mrs G and delighted to read of your son's hangover Anne.

Pam( great photograph), Shelley, Nikia, Minty, Victoria ....i can only wish you strength in your respective journeys.

I could not have continued to work(teaching) when Mark was ill...the lack of sleep alone would have made it impossible..and I am sorry but try as they may ..the input from Social services would never have made a dent in the level of care needed. It is the hardest journey that any of you will undertake...but I can only tell you to take each day as it comes..dont think too far ahead..and take any and every bit of help offered. It is not like "real life " where we think we should do things for ourselves and it is impolite or a sign of weakness to ask for support. Take it , ask for it, fight for it....because by the time you do get the  support  you need,you will be at the next level and requiring even more.

i have said it before on here....i cant believe the differences in help offered throughout this country. I was always a bit vague about the"postcode lottery"..but it is nowhere more in evidence than in the Brain Tumour family. If anyone on here is from Scotland and needs a helping hand then please P.M me. Unfortunately.... from this site alone...it is beginning to look as though the North of England has more than its fair share of B.T patients.

Julie ...I am going to P.M you. You sound so down..which is not like you. Sending you huge hugs.

Love to everyone...especially if I have not mentioned you. This new site makes it difficult to trawl back.

Love Cathi xx 

Firstly can I apolygise for not being able to write any parargraphs here. Its only when I come on here with my PC...please bear with me. Firstly, Nikla79- I stayed off work for the first 3 months. Got him through the six weeks radio and chemo and then slowly did a stage return to work. A lot depends on how your husband is in himself. You will adjust yourself as to how you feel. Some carers only go back part time, some cannot go back to work. Its an individual decision. Just take it easy and do what you think is right. Jo- just to say how sad I was to hear about your father and I hope all things go okay on his funeral. You really have been through it. To Martyn, Pete, Cathi and everyone else who is on the other side of the journey, my thoughts are with you all. Debs- you reassured me when you said you get all grumpy and snappy leading up to a scan- Hubs has been incredibly anxious and snappy this month. He has had to wait a month for his scan results this time. The dark nights combined with the rain and wind haven't helped his mood bless him. To all the new comers that are reading on the thread, My hubby is 19 months down his journey and we hope is still tumour free. Please feel free to click on my profile and my husband- Mr T on here- and read our journey. Thinking of you all.

Ah, so much activity overnight.

My thoughts go immediately to Joanna.  I texted you last night, but I hope that today went smoothly for you.

Shelly.  Try not to worry too much about the diabetes.  It's just more drugs to take, but hopefully won't cause any problems.  My Ali had the same thing happen (as do many others).  While in hospital, I had a diabetes nurse tell me what I could and couldn't give her to eat.  I basically ignored the advice and gave Ali whatever she liked to eat (by that stage, enjoying her food was one of her few pleasures and there's no way that I was going to dehumanise her still more).  I elected to monitor her blood sugar on a regular basis and keep an eye on any adverse symptoms (which never happened).  Talk to your Mac nurse, who will give you appropriate advice, taking into account and compromises with palliative care and comfort.

Nikla.  So sorry that you've joined us, but rest assured that we'll all do our best to support you as long as you need it.  You will find that life caring for your loved one takes a different turn and will be completely different to how it was before.  My employers were fantastic to me and allowed me to take over 8 months off on full pay (although I need to pay some of that back now).  I spent every single day of that time closely caring for Ali.  Although this will seem distressing to start off with, you will come to view that time as the closest, most loving time of your life.  Again, your Mac nurse should be able to guide you in the practicalities.  Also talk with your employer and look at your insurance policies - you might have critical illness cover that might help you out.

With regard to second opinions, you'll need to talk to your oncologist.  With Ali's case, the diagnosis and treatment plan was formulated at a multi-disciplinary meeting where many people from various teams all had an input, so there was a consensus from many interested parties.  Forcing a second opinion wasn't really going to change anything at all.

But, do talk about the treatment plan and try to understand the reasoning and benefits for the treatments.  Our oncologist took the decision that treatment for Ali should be directed at giving her a comfortable period and opted against any aggressive treatment.  In our case, we opted for peace and comfort over unneccesary discomfort.

On a lighter note, I got a letter from Sue Ryder today which made me laugh out loud (and sums up my experience with them)

It says:-

"It is now some weeks since your bereavement and we are thinking of you.

We enclose a leaflet about bereavement, which we hope you will find helpful at this difficult time".

The said leaflet is a single sheet of A4 paper, printed on both sides, basically telling me how I should be feeling (most of it pretty negative).

So yes, palliative care seems to end abruptly upon the death of the patient.

Every day, I am thankful for WTBT for my sanity and emotional well-being.