Advice please.

Hi Harls  

I'm so sorry that you and your family are going through this. I know how hard it is to hear the awful news of GBM4 diagnosis. My husband was diagnosed in August 2019 so we are 16 months on. He too had surgery, 6 weeks chemoradiation and then monthly chemo cycles since. He's 50 now so a little younger than your dad but he tolerated the treatment fairly well to start with.  If your dad is fit and was otherwise well hopefully he will too. Trouble is with this diagnosis you just don't know. However, from experience the chemo got harder to tolerate the more my husband had. 

I really hope your dad copes well with his treatment and is there on your wedding day  I'm sure he'll be so proud of you. 

I hope you have support too as this is hard for family too as well as your dad.

Sending you love and best wishes x

Hi LC 50 

Thank you for your reply and I’m sorry your having to go through this! 
I worry that he will deteriorate as time goes on but I also can’t schedule anything  during his chemo as his immune system will be weakened and with the current climate of the world I couldn’t put him at risk. It’s so difficult. I know each individual case is different but am pleased to hear your husband is coping well with treatment, it gives me more hope. The one thing that terrifies me is that he will suffer. I wish I could be there to help but being a primary school teacher I don’t have the option to work from home. 
My fiancé has been amazing support. I am okay most of the time as I am generally a positive person and I try to keep very busy which helps a lot. 

Thank you again for your reply. 
I hope your husband continues to do well and you stay positive too. 

Hi Harls, 

I have just joined the group as strangely my husband was diagnosed on the 13th November too... I totally understand what you are going through and i know how our children are feeling about losing their dad..

Personally i think you should book your wedding as this will give your dad hope and something to strive for... Your contingent should be that if he weakens before then that you maybe have a very private ceremony arranged with wherever you decide to marry or a local church or a registry office who will perform a ceremony at short notice under the circumstances... That way he will be able to see you marry but without the stress and worry if he is unable to actually walk you down the aisle.

I am devastated about my husband and I know you are about your dad but we are trying to make as many happy memories together as a family in the time we have left and just planning your wedding with him i think will make him happy...

Always here to talk although can't commit to not crying xxx 

Hi JW54

Thank you for your advice. It’s such a tough decision. He is such a proud man and wouldn’t want people to know he was struggling. I’d hate to think I put the pressure on him if he’s so poorly at the time. I also want my wedding day to be a happy day and I worry if he is in poor health it will be a heartbreaking day. I also know we both want this more than anything and if he copes well with treatment and I haven’t booked anything it will be my biggest regret.  He starts chemo and radio on the 11th so I am just going to wait for a few weeks to see how he takes to treatment. (I know this won’t tell me how he will be by the summer but I feel like I should do this). I really feel for your children and you too. It’s important to make the times good times and although the odds aren’t in our favour, Some beat the odds and we have to believe we will be in that small percentage. I certainly do. Keep your children in the loop and reach out to them for help too. Me and my mum have butted heads recently as she has turned to drink as a crutch which is the opposite to what my dad needs. I tried being supportive and offering my help but she was in a vicious cycle. Last time we spoke (30th December) I was upset and angry that she had done exactly what I pleaded with her not to do (had too much to drink again) and we had a bit of an argument. I’m hoping she will see sense but who knows. I Understand this is devastating for her but my dad needs her and he said he feels as though he is fighting two battles because of what she is doing. I have always got on with my mom but my relationship with my dad is so special. I’m 27 and all of my happy memories are with him. I live about an hour away from them but I don’t have the option to work from home otherwise I would move back in. I am a primary school teacher and go back to work Monday. Even when the restrictions are lowered/ lifted I won’t be able to hug my dad or be close to him. I would be terrified that I would be putting him at risk with working with children and his immune system being weakened. 
My dad is doing really well at remaining positive at the moment (despite what’s going on and the extra stress from my mum) which is great. I hope there’s no snow so he can get to all of his treatment appointments. 
Is your husband due to start treatment too? I hope you don’t mind me asking and I also don’t mind if you would rather not say. I know each person is individual and no two people will react the the same to this awful disease but it just seems like we are at very similar points in our journey and may benefit from talking to one another. 

I can’t promise I won’t cry either. I know we must be strong but it’s ok to cry and be upset. We need that release too. 

Hi Haris 

I hope treatment is going well. I have come back to the blogs after first joining back in May 2018 when my husband (then 59) was diagnosed with  GBM4 (right parietal). I am back as he has just had another craniotomy following a scan result which showed some regrowth. So just checking out what has happened in the last 3 years as far as his treatment may be. He had the same gold standard treatment the first time, that your dad is facing. Obviously affected him (sickness, tiredness) but we also managed to go on safari during his chemotherapy phase (just picked the last two weeks of a cycle and lots of midday naps), he has seen his two grandchildren born (daughter married in September 17). So as people say, it is hard to know what is ahead as everyone is different. But I just wanted to say that if your dad handles the treatment well then you should hope that he will be there on your wedding day. The general prognosis is scary and I remember being obsessed with it - but it is an average and people beat it.  Sending you all my best wishes xx

Hi lindsayd did your husband try anything other than the standard of care?

My father has a GBM4 and we are looking at the COC protocol, have you heard of it?

Any advice on extra treatments would be very much appreciated

All the best,

Joseph

Hi Lindsayd 

Thank you for your reply. It has put a smile on my face this morning. It’s great to hear that you went in a safari! Dad is doing well so far. He is in his fourth week of radio and chemo combined and has a nap now and again the day. He has had one day where he slept most of the day but he’s still eating ok and going for a little walk. He hasn’t had any sickness so far, just felt queasy. We have decided to try and go ahead with the wedding for July... unfortunately we have Covid hanging over us too, as well as dads cancer. I mean... I just wish dad could be enjoying his life at the moment, do the things he wants to, see his friends and family, because he feels well enough! I think that’s what’s hard. I also feel guilty as he said he didn’t want to know the prognosis and now we have said we are getting married in July... he’s not stupid. But that being said he still seems to be being positive. (I know he’s scared but isn’t ready to talk or let anyone know that yet, not even my mum). 

I hope your husbands surgery all goes well and he handles the treatment just as well this time around! Thank you again for taking the time to reply. 

Take care. 

Ian was very similar in not wanting to know his prognosis. It took him a while to get to the point where he could ask the question and then always asks me, not the doctors! The pandemic is a real issue I think for all our BT sufferers - even more of an issue that they can't do the things they want to do. Ian's happy place is eating sardines at a beach bar on the Costa del Sol - so I just tell him he will have to hang on till September to make that happen. I truly believe that positive thinking aids recovery/prognosis (which he was also told by his surgeon this time around).

 There are quite a few people in the Brain Tumour Charity online support groups that use alternative treatment and people on that site are really helpful - I did find it a lifeline in the early days. You can find their website here. 

Sounds like you are a close family, as we are and together you will manage whatever gets thrown at you. Here's to weddings in July!  Lindsay x

Hi Jospeh - first time around we only did the gold standard and even then Ian's liver didn't really tolerate the TMZ so we had to give up the adjunctive TMZ with his radiotherapy after 2 weeks and then his separate 6 months of chemotherapy was at a much lower dose. Still waiting to find out what they are proposing this time as not sure they will offer radiotherapy again. He has been offered a clinical trial at the Marsden that we are waiting to hear about.  When I have looked at alternative treatments I think the COC is the one that I would try.  Take care and will let you know if they suggest anything today,  Lindsay 

Hi Lindsay. Reading your messages is like a breath of fresh air for me so thank you for taking the time to write. I facetimed my dad first thing this morning to tell him about you and your husband going on a safari, even during chemo and he was grinning from ear to ear! It made me realise, although we have been positive and not down in the dumps about it, we have most certainly avoided talking about the future which I am no longer going to do. My parents (usually) visit a different small Greek island every year and now I will speak to them about booking something when flying is given the go ahead. A July wedding for us and a September summer holiday for you both sounds good to me! Thanks again for your positivity.  Harlie x