I have been regularly reading comments on the secondaries forum for about a year now and it has helped me a lot to come to terms with all sorts of issues as well as being a wealth of information. I decided to join and try to ‘put something back’ so to speak, I was beginning to feel a bit of a fraud and selfish. I do want to say, at the risk of sounding patronising, how I admire and am amazed your collective spirit, attitude, determination and strength in coping with the ups and downs of living with secondaries.
My wife, 39 years old, (who I love to bits), has been and still is a most amazingly strong person and has coped with breast cancer for over 9 years now, she has never once complained or been depressed and deals with ‘it’ by completely blanking it out of her mind, she is not interested in doing any research or indeed talking to anybody about it, except sometimes with me. She says, ‘I listen to my body, if I feel unwell I see the doctors, get fixed and get on with it’.
Originally diagnosed with large lump to breast at 30, underwent chemo first followed by mastectomy. 1 year later local recurrence removed followed by extensive radiotherapy. Tamoxifen prescribed for 5 years following which she was given the all clear, waited for a year then sought advice regarding starting a family and were assured there was no additional risk, I was not fully convinced however we decided to leave it in the lap of the gods, if it happens it happens so to speak.
2 1/2 years ago my wife gave birth to our beautiful baby daughter. The birth was natural however my wife was in a great deal of pain in the legs and pelvic region, she was then diagnosed with DVT in the lower leg, (she was never given or offered compression stockings in hospital despite her history being known, tamoxifen has a residual effect apparently of increasing DVT risk), and after 6 months of tests, not being able to walk properly our keen eyed GP sent her for xray and spotted an abnormality in the pelvis. It was a real roller coaster ride from then on, extensive mets on the pelvis, and some to the spine. Tamoxifen was prescribed again which worked well for 8 months or so following which she has had her lung drained, radiotherapy for spinal compression and mets to the base of the scull, (focused external beam), over Christmas because she was suffering from double vision. She had pretty much been in serious pain for months, having to take morphine, and a whole host of other drugs as well as steroids. A very small additional met is now lurking in the lung and liver but they are stable and not considered problematic as of yet apparently.
She is now on Letrozole which together with the radiotherapy is doing wonders.
She is not not in any pain at all, no drugs required!
There is no progression and her eyesight is normal and she feels and looks terrific.
Although my wife was able to take early retirement due to ill health she has coped with bringing up our daughter and going through all this, what a complete star she is! I am and always will be there for her no matter what.
We have learnt a lot over the last couple of years…
The health service is not perfect but dose a fantastic job especially if you take a proactive role and make a bit of a nuisance of yourself.
It’s still hard when my daughter looks at me and says things like ‘don’t worry daddy, mummy has gone to hospital for a bit of sleep to be better’
I have absolutely no doubt that women are the stronger sex.
I hope that my rambling has introduced ‘us’ to the forum and promise that future posts if I have anything useful to contribute will be shorter.
Great post!! I know what you mean about “women being the stronger sex”.
You may have seen my posts - My wife has just been diagnosed with secondary Breast cancer in the liver- for ease I summarise below:-
About 9 months (April 2007 I think) ago she found what everyone thought was a small lump. Her GP was surprised she’d even found it. She was referred to see a specialist who thought it would be OK but did a biopsy anyway. The biopsy showed up cancer cells but still everyone thought it had been caught early. A Mastectomy and removal of 4 lymph nodes showed that the tumour was bigger than thought and the lymph nodes were not clear. The rest of the lymph nodes were removed (20 odd) and these were all clear so we thought we’d established a starting point. Chemo followed (think it was FEC or “EC” x 4 and Taxoterre x 3 (should have been 4 but my wife was wiped out at end of it and they said that she’d been through enough, especially as only 12 months ago they would “only” do 6 cycles of the first chemo drug). Then radiotherapy was to follow and we hoped that that would give us some respite however when doing a routine scan pre the radiotherapy they found something they didn’t like the look of on the liver!! A CT scan has shown that there is secondary breast cancer in the liver. My wife is now on Tamoxifen as the cancer is oestrogen positive and we’re waiting to see how the tumour responds.
My wife is 44, We have 2 children, aged 9 and nearly 5.
At the moment we’re (actually it’s me at the moment but I am hopeful my wife will join me soon but she’s resting post recent radiotheraphy treatment) information gathering in readiness for our next meeting with consultant on 21st Feb.
Like you I’ve found the posts from the ladies in the secondary breast cancer category very inspiring and informative.
Just wanted to say you guys are terrific! Your wives and children must be so proud to have you by their side.
Don’t ever put yourselves down sometimes a strong tower appears strong on it’s own but it’s the hidden foundations that keep that tower standing.
My foundation was never there and proved it when he left during my treatment. However, although he isn’t there my children and the rest of my fantastic family; my circle of friens; AND this forum have been more than enough to keep me standing tall and fighting back.
Totally agree with the comment on the NHS and speaking up for yourself too. It’s amazes me sometimes when I realise it’s actually me who’s doing the shouting! Used to be soooo polite in those situations!
Wishing you all a very romantic valentines day with your loved ones.
Take care of each other.
Much love - Diane xx
What wonderful guys you both are. Your wives must be very proud of you for going into ‘womens’ territory’ to gather any info you can and a bit of support. This forum is wonderful. I only joined myself last week when my Sister went for a routine checkup and they found a tumour. She has already had breast cancer twice now, the 2nd dose meant the removal of both breasts in 2006 and although we knew it would come back, we were a bit shocked when it reappeared so quickly. She had just been for chest x-rays and a liver scan this week and we await the results next week. When I posted my first item last week I was so low and felt I had nowhere to turn. We’ve always battled it together, my Sister and I, I’ve always done the research, etc. so that when my Sister needed an answer to something I had something to give her but last week I was lost. I can’t tell you how it felt when I logged back on to the site and read the wonderful and heart lifting replies and wishes of ‘good luck’. I printed everything out and took them with me when I visited my Sister that weekend. To say they gave her a much needed lift is an understatement. Even my lovely brother-in-law (who is coping remarkably well this time round) read them and got the boost he needed to try and remain positive for my Sisters sake.
Words alone cannot thank the people involved for the time they take out of their lives to post these messages - many of whom are in a far worst state than we are going through at the moment. I also have a very close friend who is in the latter stages of terminal pancreatic cancer and only wish she could see the benefit of this site. I keep trying and will keep trying until her time runs out to get her onto something like this if only so that she can see she is not so alone. There are so many kind, as yet unknown friends out there, all sharing the same troubles. I only hope that one day I can post back something that will help someone out in the same way I’ve been helped out. Sometimes you just need to get the thoughts and fears out through whatever means is available just to feel better and anyone at all is welcome at any time to contact me for this alone.
Take care you guys and good luck to you both and your wives and families.
May you soon find the sun shining on your home and a rainbow at your door.
Thanks for your replies!
Nigel - Tamoxifen although its been around for years now as you know is a brilliant drug, it worked well twice for my wife which is unusual so I would have high hopes that it will give you a long and positive effect.
How do you broach the subject with the kids, totally honest approach, filtered or do you try to shield them from whats going on?
Diane - I am really sorry your other half left during your treatment, reading other posts this is not uncommon. I just can’t imagine how anybody could ever do this to anyone let alone someone they love. It makes me quite angry in fact. Yes friends and family are a great help, sadly BC tends to act as a kind of ‘friend filter’ its amazing how many disappear of the radar, the true ones remain however.
Lozzie - What a wonderful sister you are, I am really sorry for what your sister is going through and it will I am sure make her even more determined to find the right key to knock this thing on the head for a while knowing the support she has from you. There are loads of treatments available now, quite amazing what can be done and I take great heart in reading posts on how well others are doing on their treatment plans. My little girl loves rainbows, there will always be one at our door when she is around!!!
Thoughts with you all.
Dave
Re Tamoxifen - I hope you’re right. As with all treatments different people respond differently. We’re in the waiting stage at moment to see how the tumour responds as we’ve only just had the first CT scan
Re what to tell the children - difficult to know what is the best approach at moment as we’re seeking more information. On primary dx we gave something between an open and filtered explanation. Following recent secondary dx we’re not quite sure how much to tell them at the moment. We will probably review this after next consultation on 21st Feb. Suspect it’ll be a filtered approach whilst we wait and see how tumour responds to treatment but when the time is right we will have to be open (I’m not looking forward to that day!).
Thought I would join you guys. I have been here about two years now. My wife (44) had the cancer come back March 2006. We have two girls 17 and 15
Long story but she has lost 4 inches in height, only walks with a limp BUT she is still here. At first they said 6 months, well that was nearly 18 months ago !!
She has had 11 sessions of Taxoter and large doses of Xeloda, now she is just on Femara. She still sleeps 16 to 18 hours a day ( I would be interested ) if any of your wives are that tired ?
Hopefully as they say here " the brakes are on " and they remain on for a long time to come.
My wife is newly diagnosed with secondaries so I suspect we’re where you were in March 2006?
Currently she sleeps about 10 hours a day which is more than she used to but may be due to the fact that radiotherapy has only just finished and apparently results in ongoing weariness as body sets about using up energy repairing cells damaged by radiotherapy treatment (or something to that effect).
During previous chemo treatment she was sleeping a lot more, especially the first 7 days after treatment.
Just read your post and wanted to say that Macmillan have a booklet called ‘talking to children when an adult has cancer’ that you might find helpful.
Our son was 6 when I was first diagnosed and we’ve always been totally honest with him (he’s 20 now) but only told him what was appropriate for his age so at age 6 (nearly 7) it was that I had ‘bad cells that needed removing’ but now he knows absolutely everything on what’s going on for me with secondaries. We’ve chosen to do this because my father kept this information from me and my brother when my mum was dying (at 46 years old) although I know he did it with the best possible intentions but it created problems especially for my brother who was only 20 at the time
Thanks for the comments, will give the book some thought, my daughter a bit young yet think.
Terry yes thats odd, my wife has lost an inch, strange, she is not happy about this because she is only 5ft.
Regards
Dave
In my wife´s case it was a fall on to her coccyx that started her height loss, since then she has lost more with the cancer at work. She was 5 ft 11 but now about 5ft 7.
She has no pain because of the morphine patches which are wonderful.