Until now, I've been pretty upbeat and accepting of my diagnosis right from the beginning (oropharyngeal cancer, base of tongue, lymph node involvement). Had tumour (hp16+) surgically removed with good margins, as well as additional "satellite" primary that hadn't shown up on pet scan), plus neck dissection, 20 nodes removed, but only one affected. I felt fit as a fiddle when diagnosed and have recovered well, only symptom I had at the beginning was a persistently swollen lymph gland.
6 weeks of radiotherapy to both sides of neck is to start on 22nd. Dental assessment is on Tuesday, (front teeth are fine, but pretty sure I'll have to have most of my back teeth removed as they're in a bit of a state as I've been unable to register with a dentist since we moved back to Merseyside 3 years ago), followed by mask fitting.
However, after seeing the oncologist for the first time this week, I suddenly find myself plunged into depression and if I'm honest, not really wanting to go through with the treatment
This sounds extremely pathetic and ungrateful I know, but it all started when the nurse told me the radiotherapy wasn't going to be at Clatterbridge Aintree, a great place I'm so used to going to now. It's a straight forward 45 minute drive, and the car park is right next to the hospital. Instead I have to go to the Royal Liverpool Clatterbridge centre for the 6 weeks. I had to go there for a pet scan, and despite leaving with 2 hours to spare, we had an absolute nightmare finding the the way. Traffic was horrible, and we couldn't find the car park either, (haven't got a satnav). I nearly missed my appointment, and eventually, husband ended up dropping me at the door, dumping the van on double yellow lines and getting a parking ticket. I'm going to have to drive myself there most days for the first few weeks as my husband has to run our business (which I fear is going to suffer greatly as we'll need to pay extra staff to cover my absence ) and I just don''t feel I can face it. They said I could have transport, but that all the waiting around would probably make a 15 minute appointment last 4 or 5 hours.
Plus the oncologist told me I'm going to lose the bottom part of my hair, will probably end up with a mouthful of ulcers and most likely take months to recover. Also, she said that they won't give me sedation even if I do have to have at least 6 teeth extracted. Eeeek ! I'm not that scared of the dentist, but I've only ever had one tooth out and it wasn't pleasant.
The thing is, I'm not sure I want to go through all that, only to face extra financial strain and a life that, quite frankly is just one long struggle. (As well as everything else, the costs involved in running a small business are just going up and up and up)
It's a very long story, but husband and I have ended up in private rented accommodation, with rent and rates taking up all of our state pension (we'll both be 70 this year), so we have to keep our small business running just to keep our heads above water. Because of this extra income, we're not entitled to any benefits or help, so we're on a hamster wheel that I can't ever see us getting off. All my friends are comfortably off, and are retired or semi retired. (Yes, comparison truly is "the thief of joy"). We never have any disposable income to speak of, the last holiday we took together was 16 years ago, and we've found that banks won't help nowadays unless you've got money to start with. Boo hoo, whinge, whinge. So we've no chance of ever retiring, husband is getting a bit frail, he has COPD and asthma and is working 60 hours a week without a break. Last days off he had were Christmas Day and Boxing Day. I've been regularly writing freelance for card publishers for 15 years as well as helping him four or five days a week though, so at least I will still be able to do that. Things haven't always been like this, mind. We had a good life up until our late fifties, and have travelled and lived all over the world.
My poor husband gets all panicky when he thinks about my having cancer and if it wasn't for him and my 16 year old diabetic cat (we haven't any kids), I'd seriously consider refusing treatment.
The reason I can't though, is because I know how utterly selfish I'm being. I know how extremely thankful I should be and how lucky I am to have a cancer that's potentially curable. A lot of people on these forums aren't so fortunate and would no doubt give anything to be in my position, but despite my overwhelming guilt, I just can't help feeling the way I do. I also know from experience what it's like for loved ones living with cancer sufferers and the worry and helplessness I felt when my mum was dying of bowel cancer at 53. She'd been misdiagnosed for years and the treatment she got was terrible and non-existent back then. But, unlike me, she never complained once. Also, one of our friends died of mouth cancer years ago at only 38, when the fantastic treatment they have now sadly wasn't available. So who the hell am I to moan ?
Anyone who knows me wouldn't recognise the whinging, self-pitying author of this rant at all. I'm someone who always appears cheerful and extremely positive and I'm thoroughly ashamed and disgusted with myself for having written this, but I guess it's easier to sound off anonymously to strangers. Anyway, apologies to whoever reads it. Please forgive me, but I just had to get things off my chest.
But tomorrow's another day - and hopefully I'll be able to give myself a shake and will feel differently after the appointment on Tuesday ( If I ever get there, that is. ).
Wishing all of you the very best,
"Victoria Meldrew" a.k.a "Crying Annie"
But tomorrow's another day - and hopefully I'll be able to give myself a shake and will feel differently after the appointment on Tuesday ( If I ever get there, that is
It is and you will
You’re scared and can’t see a way out.
The truth is that the treatment doesn’t last forever and you will get better.
I managed at 68 and you will too so big girl pants on and crack on. It will soon be over.
This is a good place to moan. Better than keeping it to yourself.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hey Lindylou.
That's one of the best written rants I've ever read and I bet you felt better for getting it off your chest.
You've got an awful lot on your plate to deal with and the last thing you should be feeling is guilt. Like Dani said, it is a good place to have a right old whinge and I doubt any on here will begrudge you doing that.
H and me have had a rotten time of it lately and another lengthy A and E visit last night put the tin hat on it! Major meltdown for me this morning when worry and sleep deprivation finally took their toll. Better out than in and after I'd calmed down I felt better and got on with all my daily tasks till I'd caught up.
Hang in there girl and give the treatment your best shot if you feel you can do it. I reckon you will!
I find making a list of upcoming appointments and all the other gubbins helps us, then cross them off when we've completed them.
Maybe have a word with your team about your concerns? I'm sure they'd give you practical advice or point you in the direction of any help out there. Our team go the extra mile to help us if they feel we need it. Here's hoping you've got good back up too.
Wishing you all the very best for yourself, your husband and little puss cat.
Gill xx
They said I could have transport, but that all the waiting around would probably make a 15 minute appointment last 4 or 5 hours.
I had to travel two hours each way to Swansea from rural west Wales every day. The hospital has a hostel for people having daily RT who've to travel far. Maybe that is something you could ask about?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi sorry I’m late to the thread. As others have says you’re frightened it’s all become real tomorrow’s another day. You’ll get through this as the alternatives not worth thinking about. It’s going to be tough I can’t lie. But you will do it. We’re all here to help you. You might have to take up the option if patient transport it’s not ideal but if you can’t drive as it’s possible you’ll be on opiates where driving’s not a safe option.
It’s big girl knickers in you can do it and we will help you.
hugs Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Lola. I'm glad you could get your worries off your chest, it does help to get it all out and raise your concerns. This is a difficult time and the not knowing how things will go financially as well as the upcoming treatment concerns can be overwhelming. I thought that I read that Macmillan has financial advice so it might be worth ringing the helpline to make enquiries. There may be some ways to take the financial pressure off if they have suggestions. I used to worry about how we would manage financially when I retired but it is funny how there are savings you can make, benefits etc that are available to seniors so it worked out O.K. for my husband and I in the end.
Yes the treatment is hard but it will soon be over and then things will be on the way up for you. Take it a day at a time and hold in there.
Sending you positive thoughts
LYN
Sophie66
Hi Gill, what a lovely, kind, uplifting reply. Thank you so much. I wrote that rant after having a couple of drinks - oops ! (Alcohol has a lot to answer for). And now, after watching the latest news and all the suffering going on in the world, what with the bombing in Ukraine and people in Palestine going without food and basics, etc., and babies starving, I'm reminded of what an extremely lucky, complete cretin I am
Sorry to hear you've had a difficult time lately and so glad to hear you're feeling a lot better after your A and E visit. Many thanks again', especially for the handy tips !
All the best
Lindylou x
Thank you, Gill, for such a kind, uplifting reply. (I wrote that rant after a couple of glasses of wine. Oh, gawd - alcohol has a lot to answer for ).
Lindylou x
Thought my first reply hadn't been posted. So sent the second one, too
Thanks Hazel, I really appreciate you taking the time to engage in my pity party
It's weird, because I'm not frightened of the treatment at all really, it's more a case of how to cope with the aftermath of a long recovery.
Just laundered my biggest knickers and promise to wear them with positivity !
Many thanks again,
All the best to you,
Lindylou x
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