Hi Paul, I just came across your posts tonight. I just wanted to pass on a bit of hope to you both. I too was 39 when I was diagnosed with Breast Cancer and my daughters were 7 and 14 at the time. My tumour was 5.5cm and I needed to have chemotherapy before they would do the mastectomy. My husband who was a phychiatric nurse was wonderful while I was undergoing treatment, looking after the girls and me, taking them to school etc. He has been a huge support throughout all the treatments, although he is a shy quite sort of person who also suffers from bipolar disorder himself. Well TWENTY years have passed since then and my girls are now 27 and 34 have grown into beautiful young women…although no grandchildren for me yet! My hubby and I both retired early on health grounds but life has been good to us and we are both 59 now. Unfortunatly the cancer has spread to my bones now, this happened 10 years ago and the prognosis was not good at the time. However I am still here and enjoying life and grateful still to be here. I am on chemotherapy again but it is do-able and the side effects are not great but the tiredness is annoying as my head wants to do stuff but the body is just not able! My husband is still looking after me well ( and I care for him too) and we still enjoy life. I hope this gives you a little hope for the future and shows you that people to survive with cancer…and live with it too. Love to you both. from Val (Scottishlass). PS I have been to Chipping Norton many times as we own an Eriba Caravan which we bought from Mark at Lechlade and have camped at Burford. So know your part of the country well.
Time for my nightly rambling, Val-Thankyou for your post, we are all in this together.
We’ve just begun the process of applying for benefits for Lou, our plan was that she would start work about now, however something just got in the way!!!
We’ve applied for DLA before when she had M.E, I mean she was bad at times, I used to give her a firemans lift to get to bed some nights (queue various head injuries on the bannister etc - I wasn’t beating her honest m’lud), and the buggers turned us down each time - and we really needed help too!!
Now, after the mx, Lou needs help getting dressed, lifting pans and generally all the other stuff everyone else takes for granted.
Will we be turned down again?
Who saw the news today? that 70 stone bloke who brought it upon himself is gifted enough benefits to fat himself to death whilst we all try to get some help with babysitting costs.
Makes me sick to the pit.
Hi Paul,
Re your comments about the “How are you doing” type questions. My husband (also a Paul!) has found that the male friends that ask don’t really want to hear an honest answer unless they’ve been in a similar position and understand the emotional roller coaster you’re on. He also generally answers them with a “fine” type response. Given time you’ll recognise those who can deal with the truth and those who can’t. Make sure you seek out at least one who you can let off steam to. My biggest concern has always been that my Paul has someone he can express his anger, frustration, sadness and fears to because I know that he wants to be as positive as he possibly can be when with me (although I do make him talk to me too!).
The only suggestions I can make on the onc front is to try to build a relationship with him/her. Go prepared with a list of written questions and take notes of his/her answers. Seems daft but it seems to work if you can give the impression of taking bit more control at appointments. Got to be worth a try at least!
I’m glad to hear you’ve got the first chemo date now. Hopefully it will help you both feel slightly more in control of the situation and that you are doing something to fight back.
In the mean time (until you learn about the life of a blogger anyway!), please continue to voice your feelings here, anything that helps is worthwhile.
Claire (& Paul!) x
“How are you doing?” it’s a question to deal with isn’t it. Pregnant pause. Do they really want to know? Do you really want to tell them?
I’m just reading David Watson’s book “Fear no Evil” and in it he says (a while afer his daignosis and surgery) he got to a point of being able to say quite cheerfully, “Well I feel fine thanks but actually I’ve got cancer”, and I thought that was a really useful way to look at it.
Here we are 12 hours or so post FEC No.1 - guess what? No side effects except a bit sleepy -
Fingers crossed 2mrw is just as good.
Cold cap was refused - felt like a “concrete motorcycle helmet” so, one hour of “jacking-up on skank” and then home for tea and a nap!
Nastys getting pwned along with hair and other essential white blood cells etc.
Was posted a link by a friend pointing to the use of medical hemp (cannabis) earlier - sounds very interesting and very potent and effective!
Would anyone like to PM me any experiences if they have tried it?
Love and light to all going through this.
It doesn’t seem too bad so far.
P
An update - Chemo done!!! from my point of view “not so bad” from Lucie’s - it was ok.
Anyways we survived, and to all of you out there dreading your first Chemo, take faith in the fact that most people only post bad experiences.
Not many people are going to make posts “Had my first Chemo today, and do you know what… It wasn’t too bad…”
I do hope you understand.
Right… onto the next step…
For all intents and porpoises, Lou has been massively over-treated, including surgery and drugs for what was just “an odd lump” in her boob.
We now don’t need to see the Onc for a couple of months.
Are we cured…?
Are we ill but medicated??
Do we have better survival rates than Joe Shmoe down the road??? (93% for 5 years if your interested)
I might get run over by a bus 2mrw…
How do you ladies that have been thro similar experiences progress from this point???
Many hugs 2 u all who have come this far but now feel … what?..
Hi Paul,
Glad to hear things have gone so well for you and Lucie.
Chemo was OK for Janet as well (her words). She had a very bad time after the first Docetaxel in November and also still has some peripheral neuropathy, but otherwise not so bad at all. There is a hint of hair returning now. It does seem never ending, mind you; now on Letrazole (5 years) and Herceptin (1 year).
Janet’s survival rates look relatively good as well (and should be even better given that, say, a 10 year study released today must be for people who were diagnosed more than 10 years ago).
We have noticed a dramatic improvement in Janet’s energy levels (walking, stairs, etc.) since chemo finished.
The latest thing is going back to work. I think lack (absence?) of preparation and communication on the part of the employer is a real downer. There is a current thread on the topic in the Employment and financial issues forum. Going to see the occupational health people was very useful, though we have yet to see actions emerging from that. (It is only a few days yet, though.)
Another great thing is that in her first week back at WeightWatchers, she has lost 4 pounds of the weight put on during chemo. That’s a real boost.
congrats to the pair of you for finishing chemo - its fab that lucie has someone at her side.
Her circumstances sound similar to mine in that there was no evidence of spread but the chemo is just a back-up. I’m not complaining tho - it wasnt too bad for me either.
i finished my chemo end of dec, then rads at the end of feb and just started hormone therapy now. So far i’ve had a bit of the post-treatment blues, but plan to go back to work next week to cure this - too much sitting around watching jeremy kyle would do anyones head in!
It is normal to feel at a loss at this point tho - also if you have just started the hormone therapy your bound to get a little ratty and weepy with your hormones going bonkers! Even without this the chemo has given the body a fair battering so i wouldnt expect too much too soon.
the most annoying thing for me so far is people saying “so now your cured its back to normal then!”…erm no, not exactly cured and wot the hell is ‘normal’ when you have cancer???
People mean well, but its a tricky disease to understand unless you lived through it yourself.
Just keep on doing wot your doing for lucy - support, patience and encouragement.
Best wishes