Newly diagnosed mum of 2

Hello. Sorry to hear your diagnosis. I was diagnosed last July. As you say everyone is different, I had surgery, but I can tell you a little about my treatment. 
six weeks of radiochemo every Mon to Fri. Low does oral chemo every day for that six weeks, 

Then onto a much higher dose of oral chemo for 5 days out of thirty. That runs to May. 
I have not had any side effects. 
I had a small hair loss where the radio beam went in. Easily hidden by just combing my hair forward. 
llast consultation the oncologist mentioned a trial at the Marsden, for much later on. Eg if the thing cones back! 
good luck

Hi Sasha,

I'm so sorry to hear your diagnosis,my husband was diagnosed nearly 2yrs ago.

He was operated on then had 6 wks of radiotherapy,he has had chemo tablets for 5 days every month since then.

He hasn't had any side effects,no hair loss, sickness,nausea etc.

HI Sahaq

a warm welcome to the online community. So sorry to hear about your diagnosis but great questions that you have asked.

I supported my late husband through the 3 years of his GBM journey. He had surgery followed by the 6 weeks of oral chemo/radiotherapy. He declined all further treatment after those 6 weeks. At that point he had been told he had 12-15 months. In the end he got 38 months and a day. Where I'm going with that is that doctors give timescales based on best guesstimates and published averages and no one is average. Everyone's journey is unique to them.

When G was going through the 6 weeks of treatment he didn't suffer any side effects other than fatigue. That hit about week4 and lasted for a month afterwards. For the first week he was prescribed a strong anti-sickness drug to help with any potential nausea and was told to take it whether he felt sick or not. He was never actually sick but did say he felt a bit sick at times. His sense of taste also temporarily altered. He went right off creamy/milky things for a short period. He only lost a line of hair around the radiotherapy targeted site but it grew back in quickly once the treatment stopped. The new hair came in far darker than his original hair colour but eventually went grey along with the rest.

As for clinical trials, can I suggest that you speak to your medical team. They should be able to advise of the options there.

This is a safe and supportive space so please reach out anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of positive energy

love n hugs

Wee Me xx

Thank you for replying. How has chemo been? Also mentally how are you dealing with it? At the moment just feel like I can’t stop thinking about it all and just goi my down the gloom route. Trying to be positive just feels like I can’t get myself into a battle mindset. 

Any tips for chemo and radiotherapy? How is your husband mentally coping with it all? Also has he had many symptoms or is he living fairly normally at the moment? I’m sorry you are also going through this. 

Thank you so much I appreciate it. I think my main struggle at the moment is just being on edge about if I will or what I will have next. So far I have been okay apart from these random dizzy moments but no seizures. I am now getting off the steroids and yet to start treatment so the what’s ifs are taking up my mind. 

Chemo has been fine, no side effects at all in fact it finishes in May, then a discharge scan in June and as far as I know thats that. 
mentally…when first diagnosed I did the practical bits, will, power of attorneys, funeral arrangements etc. 

i went back to work the day after surgery and I have just kept busy. I dont have time to dwell on what ifs. I dont have children to worry about. 

im lucky, as far as anyone is, in that I have never felt ill. Its just another bump in the road of life!!!

That’s a great way to look at it. Maybe as I am off work at the moment it feels like this is all I am constantly thinking about. Appreciate your reply and great to hear you are feeling well and haven’t had any major issues. 

Hello Sasha,

My husband has coped well with the chemo, he's been on it over a year which is more than many.He usually gets his meds delivered to hom eafter a blood test once a month.

He works full time, exercises 3 times a week, it's all pretty much the same as before - he's going to try and get his driving licence returned in September.

We periodically touch on things like sorting pensions, power of attorney that sort of thing but don't dwell on it.

Travel insurance is incredibly expensive so we make the most trips away in the UK, Bath being thr last visit - lots of walking.

He has changed his diet and no longer drinks,his choice.

I think you just get into a new routine, I know the first few months feeling quite anxious and uncertain.

Good luck with treatment.