Hello everyone
I'm not sure how to start but needless to say that when it happened, I felt like I had let him down. 40 years of a wonderful marriage and we know each other so well so why didn't I just frog march him to the GP.
I could see changes in him on his left side...his beautiful smile became crooked over the last few years; he started limping on his left leg; his foot would slap down on the ground when we went for our walks; his arm no longer straight hung straight and his grip was weaker when he held my hand. Over the previous few weeks, he had started suffering the odd headache and light headedness when he turned over in the bed... His colleague had noticed the limp but he put it down to arthritis.
So, 2 days into the lockdown, our lives changed forever. My darling husband came downstairs in the morning, made himself a cup of tea and without warning, he appeared to suffer a stroke followed within a minute or so, by a seizure. It was terrifying! CT and MRI scans ruled out a stroke but confirmed a diagnosis of a brain tumour, an 'Oligodendroglioma' on the frontal temporal region of his brain.
A few days later, we had a video consultation with a neuro-oncologist who believed the tumour to be benign. But he added ominously, "no benign tumour is ever 100% benign as they can have a tendency to turn nasty"! He thought the surgery could be postponed for 3 months allowing time for the dreaded virus to ease and ITU beds to become available. The tumour is/was slow growing and shouldn't cause him any further episodes. So,it was over to the drug Keppra to keep any further seizures at bay...and that they did and still do, touch wood.
Over those 3 months, I noticed a specific change in my husband's physical well being… his walking. He kept veering to the left. Ofcourse, he didn't notice a thing, bless him. When the neuro-oncologist video called us in early July, my husband used his favourite words to describe how he was..."I'm fine". Muggins was having none of that...not anymore!
The Neuro-Oncologist reckoned that the tumour must have grown as this particular symptom had deteriorated. Numerous scans were expedited. The results showed 'white spots'...It had turned malignant! On 4th August, he had his surgery. Sadly, they were only able to remove 20% as the rest was diffused with the brain.
He has just finished his 33 treatments of radiotherapy. He smiled through each one and the radiographers adored his positivity and his funky T-shirts especially the one that read, 'I don't need Google, my wife knows everything'.
Yes, he lost most of his beautiful silver hair with an immediate request for our boys to give him a 'Kojak'. 'What's a Kojak', was the response from son number 1. Luckily, he didn't suffer the skin blisters to his scalp because he would apply aloe vera gel post treatment and coconut oil before bedtime. One of our neighbours had bought them for him having read about the side effects.
Chemotherapy (PCV) starts on 23rd November....6 cycles, each cycle being 6 weeks long. I think he (and we) are ready to face it.
Like many others who are faced with cancer, we hope, we pray, and count on the support of our family and friends. We thank the doctors and nursing staff for their continued commitment and magnificent work.
We are grateful to Macmillan and Maggie for listening and for just 'being there' in our darkest moments.
We have no idea of the prognosis because we didn't want to know at the outset. Ofcourse, I've done a lot of reading and research so I have a fair idea. Even now, we want to wait for the treatment to finish 1st. My husband is gentle, sensitive and emotional...he would not cope. We do know that there is no cure but hopefully, it is manageable. He understands and accepts that. By God's grace, the surgeons were able to operate and are still giving him the best chance and for that alone, we are truly grateful!
Thank you for reading.
Pipcy
Well, I saw my oncologist on Friday 13th, she looked at my latest scan, and compared them with previous scans. She told me that my tumour is STABLE. I said " I will take that " .
She said she wanted to see me in 3. Months, with me having a MRI a week before seeing her
I asked her about resuming the chemotherapy, she said, not at this time, as the tumour was stable.
My WBC count is on the way up
I did ask her about, worming tablets and metformin , but she did not recommend these, as they were not NICE approved.
When we came out, we both had a little hug and a cry. It was emotional good news.
I use the analogy, the ship has sunk, I was just bobbing up and down in the water. Now I am on a lifeboat, but with no steering, and just drifting.
I hope my news gives others hope, and I also recognise that some people Will call me a " lucky bugger ". Like i said to the oncologist, I will take that.
That's brilliant news! Congratulations on the outcome and hopefully, some semblance of peace for you and your family. And yes...HOPE...hope for all who are in the same 'boat' as your good self. You never know, you may find a safe shore to moor.
Re: alternative treatments, thank you for asking your Oncologist. Much appreciated. I'm sure ours will be the same but it is something we can consider should the need arise.
Well done again.
Pip
Good morning pipcy
I also have a grade 3 Oligodendroglioma i was diagnosed with a mass on the brain just as lockdown started and have had six courses if chemotherapy tablet form and am currently on week 5 of radiotherapy it was a severe shock to both my wife and me as I lost the feeling in my left hand and foot which the doctors put down to gout, it wasn't until I had a mri scan that it was found on the right front hand side of my brain, I had a biopsy done and was advised if was a glioblastoma when we got the results back it was graded as a Grade 3 Oligodendroglioma tumour now 10cm by 6.5cm and also incurable they are just trying to manage it with treatment, it just feels like we are in a whirlwind of our own and no one truly seems to know what is going on
The macmillan team are great but we have meetings with the consultants and then get a letter stating different facts how did you get around this,
We just want some time scale facts as its gone from 6-9months when they thought it was glioblastoma to now2-4 years but to be honest they still don't know or have a idea for any surgery as the said if they try to remove it,it will paralyse me
Darren
Hello Darren
Thank you for sharing and I'm so sorry that you find yourself in the same position as my husband and many others on this site.
My husband has his treatment at Charing Cross Hospital in West London and we've found them to be impeccable in their communication, detailed information and treatment. They've literally stuck to their word and haven't faltered in any way. Everything has happened according to the timetable they were hoping to follow. So I guess we have been lucky with that side of things.
But if I was in your position, I would request a meeting with the Oncologist and air my concerns. Ask for a second opinion...you have every right. Though you probably don't want to waste too much time going down that road. Tell them how you're feeling and how much stress, anxiety and upset this is causing you and your wife. Please don't be afraid to ask them. They will understand. Having confidence, trust and faith in your specialists is so important at this time. Ask again and again if need be. It doesn't matter how silly you think the questions sound...ask. I've asked dozens and they've always been very obliging and informative. My husband just nods, God love him. But I feel I have to understand completely in order to help support him and if I don't understand, then I can't explain it to him.
Do you have access to Specialist Nurses at your hospital? They will have your details and will be able to help you. They can even get the Oncologist/Consultant to contact you.
This may be of help....Before the chemo yesterday, we had an appointment with one of the Oncologists. He was very calming and reassuring about the treatment that was coming up an hour later. So I bit the bullet and asked him about the prognosis of the tumour....not the prognosis of my husband! He informed us that of al the brain tumours, the oligodendroglioma has the best prognosis...even a grade 3. He said that the PCV regimen is hard on the body but it is manageable and adaptable if necessary, to get my husband through the course. So, they can reduce the dosage or even remove one of the drugs...most likely the vincristine (given by infusion) as it was lowest in the hierarchy of the 3 chemo drugs. He said if my husband can finish the treatment, he is looking at a decade or even longer.
Good luck. Let me know how you get on.
Pip
Hi pip
Thanks for the reply so quickly i hope all goes well with the chemo, what is pcv as I was put on tablet form of chemotherapy tmz before radiotherapy which I am now on week5 and only two weeks to go and lost my hair on the right side in week three as that is where the tumour is,
My wife suffers with severe anxiety and is on controlled drugs to help control it so she is battling with her own demons along with my condition it has been very up and down since my diagnosis and being in lockdown hasn't helped as I have become argumentative which isn't me either and I have put pressure on our relationship, I had to give up drinking back in July due to being prescribed the wrong type of tegretol and having a seizure which took two weeks to recover from, I also stopped smoking 6 weeks ago to help with treatment, this hasn't helped but its no excuse .
Have you any comment on the dog worming or alternative medication
Darren
Hi pip
We have a meeting on Friday with our oncologist consultant so my wife and me will be asking all the questions that's are rattling around our heads and thank you for asking your consultant on the prognosis on the tumour and not on your husband, maybe we should ask the same
Kind regards
Darren
I forgot to mention, that prior to seeing my Oncologist last Friday, we were given a questionnaire, it was about the use of CBD ( cannabis oil ) that had THC in it. I did not pay to much attention to it at the time, as my mind was on seeing the Oncologist .
But maybe they are going to trial going down that road.
Check it out on the Internet
Glenn
That's exciting Glenn! Read up on Olivia Newton-John and her battle with breast cancer and how she's been taking THC for years. Lucky for her, her husband has a Cannabis Farm!
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