It’s without doubt the worst Christmas present my wife and I had ever had. In fact it came early and we’re still unwrapping it. ‘Take a seat, this is the surgeon’. What?...Ohhhh. After the first piece of information his mouth continued flapping but nothing was reaching our ears. So hard to believe when you first start to take it in. The silence, the deafening silence. I know some of you have been there. So many people speak up and have been through it. And what can you do? What can she do? What can I do? Not that much really other than be here to support. Many well meaning people offer help in any way they can but what can they do? You can only put your faith in the surgeons and modern medicine and cross your fingers. Think positive. Here we are, on the eve of commencement of treatment. 18 moths of Chemo. 18 months! A year and a half! Then they operate. Then radiotherapy and various other things. That’s apparently the way they do it nowadays, so they can see how it reacts. Opposite to the way you and I would have thought, what do I know? When the Oncologist said there was something else that had shown up we braced ourselves. “Did you know you’ve got two broken ribs”? We just pissed ourselves laughing. He looked amazed but over Christmas and New Year we’d also had the worst flu bug that we’d suffered in 20 years. It developed into a long lingering cough, cough, cough. My wife had said she thought she’d cracked a rib and held it every time she coughed. I poo poo’d it, ‘Probably just bruised it’. She took one paracetamol two days running and got on with it. Two broken ribs, pah! What a relief. What a crappy fact of life it is. You think you appreciate each other but it takes something like this for you to really appreciate each other. Who’d have thought there was an upside to breast cancer. They can deal with this nowadays and although it’s a journey we don’t relish it’s one we have to go through. I don’t want loads of messages of commiseration and sympathy. Just get out there and ride. Get out there and do the tours. Post some pictures, take us with you. Because life is what happens to you while you’re making other plans.
My wife went through this recently too. 6yrs ago. She was diagnosed with a triple negative breast cancer, in one breast only, in the form of a lump. We had to sit there and listen to the surgeon giving us the diagnosis and options of treatment. The following week we had a lumpectomy done, incl removal of one lymph node, the sentinel node, which was cancer free thankfully. Then another minor op to remove some marginal material from where the lump had been. The surgeon at this point told us that as far as she was concerned, she had removed the cancer but the subsequent treatment gave her a 14% better chance of it not returning. Didn't sound like a big number at the time! After another six weeks or so the chemo began. We laughed as we shaved Jo's head down to the core and she rejected a wig in favour of scarves. The chemo makes you very sick, it is extremely toxic. In fact we were shocked at the level of safety gear the oncology nurses wore as the administered the Dositaxl, or Taxidosl as it can be known. Full face shield, waterproof overalls, elbow length rubber gloves and gumboots. Six infusions with a three week cycle. The last one she nearly wasn't fit enough to have! Then another three months and it was radiotherapy. This left her with burnt skin but at least didn't make her sick. It took a year before she even started to feel like she was getting back to normal... So the surgeon at the get go was great, she did not sugarcoat anything and made it happen, the operation, within a week. The shaved head and then complete lack of ANY hair was interesting and even entertaining at times. Your nose starts running and doesn't stop!... Her hair grew back with less greys in it and she smelt different, not a nice smell either, for a couple of years. Now six years later she still cannot have the one glass of Merlot she so enjoyed every night. She also gave up the one cigarette she had every night as well!
Wow, we’re not looking forward to the Dositaxl. Forewarned is forearmed though. The first 4 sessions are what’s called AC Chemo. Then after that the Dositaxl starts. She coped really well with the first one yesterday. So far so good but...it’s cumulative. Thanks for your input and glad you and your wife have come through it.
Sam You know my door is open to you both If you need an ear or have any questions etc etc I feel you both X
Sam I’m very sorry to hear your story. My wife and I have just been through exactly the journey you describe, following diagnosis on Christmas Eve 2018. I won’t sugar coat it. This journey will be terrible - for both of you. No one who has not experienced it can possibly understand. Please both of you go to a Macmillan centre ASAP and get advice on support (we didn’t until very late and looking back this was a mistake) PM me if you want a private chat. I won’t be offended if you choose not to though J
The worst thing I found was my friends avoided me because they didn't know what to say, I found it much better to talk about what I was going through, it helped me cope. Hope everything goes as well as possible. Steve
Sam, I don’t know whether you know but I had a malignant tumour removed from my back almost 15 years ago. It’s left me with a big hole in my back that looks like someone left an iron on it. I thought at the time it would mean I couldn’t do the things I loved to do like motorbiking and snowboarding. It’s not stopped me so far. A year ago I had another malignant tumour removed (for the second time as they didn’t get it all the first time) from my left shoulder. Again it’s not stopped me doing the things I love and I now do climbing and bouldering too. I guess what I’m trying to say is that they can do marvellous things nowadays when they catch any kind of cancer early enough. The only advice I can give your wife is to take things easy and to not try and push herself too hard. She will get tired easily for the next year so she needs to listen to the doctor and do exactly as she’s told. She will need your support. Make sure you’re there for her. My wife was and is there for me and I appreciate her all the more for that. If you or your wife feel the need to chat, then you know where I am
Hi Sam my Dad was diagnosed with collangio carcinoma last june and it is a very hard cancer to treat , basically its cancer of the bile duct and it had started to spread to his pancreas and haven't been to every meeting with him I can relate to the whole surrealness of the information that's being relayed to you !! My dad had to have a surgery called a Whipple's which is to remove the bottom of your stomach , remove the top of the bowl, remove the top of the pancreas and the gal bladder got binned with the bile duct then all the organs were replumbed !! 9hr surgery in total but the surgeon,s are amazing !! My dad is 4 months into precautionary chemotherapy but last month I had the pleasure of sitting with him when he was told he was cancer free !! One of the hardest things from a family point of view was the extreme bouts of negativity but we just had to support him and let him vent ! He's back working with me now at 72 taking it handy while he finishes his last few rounds of cheamo but hes getting back to himself !!! best of luck to you both on your journey and I hope the outcome is as positive as my Dad,s !!!
Wow that sounds really hefty and much more so than our situation. I’m very pleased for you about the outcome. Basically my wife’s situation is treatable but there are a couple of complications which will make the treatment a long, long process. She’s a strong girl though and not one make a meal out of things and of course I’ll support her all the way.
Second on the Macmillan above, they are bloody marvellous. Just don't forget to keep living your lives as best you can. This shit can shut you down. Talk about it as much as you can (you're already doing that, which I see as really healthy) but respect those that can't or won't (it's tough that one). You'll find out who your real friends are. Take care. Hugs.
I'm afraid I can't offer any wise words or experiences to relate to you. All I can offer is my best wishes to your wife for a speedy recovery, and to you.
None the less, thank you very much. To be honest, what can I do? Just be here and support and do as much as I can but it’s all small everyday stuff. Very nice of you to say tho. I wasn’t expecting this. I’d just like everyone to seize the day. Do the rides, do the tours. Maybe buy the bike that you feel you shouldn’t because if you don’t now maybe you never will. We did our first tour together last year and I’m so glad we did, we loved it. For the first time in our entire married life we’d planned and booked several trips for this year well ahead. We can’t do that now but when she’s better and during the in between good bits I’m going to make sure we rip the shit out of it. Just do it.
I don’t rate Macmillan they did nothing for me apart from letter correspondence and one at that no follow up after thankfully my brother helped with finances etc being a single parent My local hospice has done more for me than Macmillan If your offered the support of a clinical physiologist take it. You may not think you need it but you will at some point. Friends will stay and some will go Every day is a blessing We are all given a limited supply of time, use it wisely
My very best wishes to all that are having health issues at the moment, I was talking about this subject today to my little girl who isn’t so little any more ,she just qualified as a paramedic here in Hereford last week and we were talking about how none of us know what’s around the corner so I echo all the comments above!
You can use planning an impending holiday or similar as a distraction/incentive for the small theraputic value it has. Personally I think it is important to have something to be going on with. For my wife, the absolute best thing ever and I swear it was massive in terms of recovery and stamina, the arrival of grandchild number one was perfectly timed. We look back fondly on the photos of two little bald wrinkled up people, one in her late forties and the other about 9lb! My point is I think it is a big deal to have something important to be happening outside of treatment and recovery. The year after the treatment stops is also a lot harder than you expect, that chemo is wickedly strong and the effects are lasting, so be prepared for a few extra sick days and loss of energy. Also, if your wife suffers from anxiety and/or depression, make sure that she has compatible meds. Again, lucky for us, the baby was absolutely the light at the end of the tunnel for my wife. Well it seemed that way to me so I guess maybe that's just me being grateful? But all the best from me and my wife, you will get loads of great advice and help from a lot of people I'm sure.
I very strongly agree with all you have written My kids were my inspiration to keep going I didn’t want to leave them or miss weddings/babies etc I was too poorly for holidays my goals were to get through each day I also had daily visits from my friends/bro I never suffered from anxiety but I do now Yep the year after and when all treatment has finished hits you like a brick you suddenly find yourself in a place where your not sure where you belong.
A Hereford lass! Lovely, hope you and all the other folks having health problems are doing well ! Hopefully meet some of you soon!
