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Getting a Grip!

5 REPLIES 5
Member

Re: Getting a Grip!

Hi Verite, thanks for posting. I'm finding the debate stimulating and helpful, now there are signs of my intelligence returning following what I call my ' C Labotomy'. No offence to any reader, but I too am not getting much, if anything from the 'sugar coated, sweetness & 'light' approach to a patient (me) approaching end of treatment. Ringing a bell or attending a make up course, both suggestions have had a negative affect on me, despite the best intentions of the wonderful NHS staff who have treated me. I'm old and wise enough to understand healthy eating and exercise and I can certainly find the cosmetics floor in House of Fraser, when the urge arises, so am sceptical that a 'Moving On Session' , will help, and I'd just be taking up a place someone else may greatly benefit from. It's all rather surreal and frustrating and I worry I'm in danger of becoming bitter, or a 'diva', but it strikes me something is missing....

Member

Re: Getting a Grip!

I am new to the Forum, and have taken part in a Moving Forward Course.  It was fun (meeting others and having a laugh - lots) but it didn't answer the purpose, or tell us where to find all those lovely nurses in the ads that are supposed to be there for us.  I managed to sort out treatment for all the long-term conditions I was left with (osteoporosis, lymphoedema, neuropathy, hot flushes, skin problems, aneamia, etc.) but my darling GP tells me "I don't know anything about cancer", so was no help.   Although he was always able to refer me as long as I said who to.  GPs are GENERAL practitioners, not specialists.

 

It's taken me over a year to sort out where bone pain was coming from;  one thinks in the back of the mind that it could be cancer coming back, but trying to get this sorted was a nightmare.  Eventually it got so bad I had to lie down until this passed.  I live in the Oxfordshire area, the CCG admits (in writing) that cancer care is under-funded, and the Churchill (cancer hospital) hasn't answered 5 phone calls and numerous emails.  Finally I stumble across a visiting Spanish professor, who takes a great interest in my case and says "do you mind if I fight this on your behalf" giving me the impression that NHS won't give me treatment as budget is under-funded.  In a few days I am having a procedure which hopefully will give me pain killing injections in my spine.  He's warned me this might not work, but looking at all the evidence it seems by far my best bet - anything to get rid of pain caused by osteoporosis.  However, I don't have anyone to check this with and have to take his word.

This is not a sob story, but rather to show that 'moving forward' courses give you the NHS sweet-and-lightness message, but didn't give me any practical advice about fighting to get care when I needed it.  It took a visiting Spaniard to do this.   So take one of these courses, but don't expect trainer to tell you how to negotiate the NHS minefield. 

Member

Re: Getting a Grip!

Jaybro/ Jan, your reply really helped, its like you 'get it' from my perspective...no naughty words allowed on here but 'wtf' just happened to me and where did I accidentally misplace a boob? Why am I having ANOTHER menapause ( the Tamoxifen) for good measure....was one not enough ( ? ! ) . Heard about 'Moving Forward' courses but sceptical (synical), trying to come up with a plan of my own. Loved your frank post. W 

Member

Re: Getting a Grip!

Hi Wonky

 

I think I’m reaching the same stage as you - sh** isn’t it?  I got through the last 11 months in a state of denial, refusing to ask questions or look up stuff because I knew it would feed my anxiety. Now all the treatment has ended (apart from odd bit here and there) and the anchor of hospital appointments has gone, I’ve noticed I’m beginning to think about the what ifs... Scary. I’m planning to take myself off for the one-to-one counselling on offer via Macmillan or The Haven. I don’t think talking it through with a GP or a counsellor would help - it needs to be someone with understanding of the very specific worries linked to cancer. I’m also dragging my husband along as he’s way worse than I am.

 

As for the people who expect us to be better, I’ve only had one so far and I burst out laughing, reminding them I have one boob now, which is a bit of an unavoidable reminder, another menopause for 10 effing years, and telling them about the Moving Forward course that advises us to accept that nothing goes back to normal, only a new normal that includes cancer in some way. That was a conversation-stopper. I’d prefer to be assertive on this one than let indignation fester like I used to. I’ll happily turn into a harridan!

 

If you find anything useful, please let me know. The move from numb to what if is not something I’m enjoying. Good luck

Jan xx

 

 

Member

Re: Getting a Grip!

I have 15 rads to go having had 12 rounds of chemo and surgery - start 10 years of hormones Friday. I say to myself if it comes back it can be dealt with . That doesn't stop fear of secondaries but am going with the odds which are in my favour . That's all we can do really . Have also moderated alcohol intake massively and stopped smoking eight months ago .... was only five a day but all helps 

Member

Getting a Grip!

Hi all, being lazy as likely lots in old threads, but fancied starting a new one. So 9 rads to go, ( ignore 7 years of hormone therapy) and I'm done. Most traumatic three months of my life and I still have 1.5 boobs and didn't have chemo. So, inspiration please ladies, particularly on coping with the fear of it coming back which is starting to bed in. How do you stop it playing on your mind? And how best to deal with well meaning people who will be under the impression I'll " be better, all fixed" after rads.