Hello dear group friends. ( no need to reply . Just offloading )
Got the results of my latest scan on Friday and Mabel not quite as stable as she was..The lung mets (Papillary Renal Cell Carcinoma ) on my left lung still stable with amazingly a tiny decrease in a couple of them. I say amazing because I’ve had no active treatment for nearly the best part of 6 months now.. However not such good news on my right lung. Two of the nodules have grown by 3cm.. so basically my right lung is now in a pretty bad way..
I had quite a lengthy chat with my consultant about where we go from here if indeed we go anywhere.
During 2023 I’ve had 3 hospital inpatient stays because of breathing difficulties and inability to clear my lungs sufficiently of mucus buildup but we have now managed to get this pretty well controlled with an increase dosage of carbosisteine and 3 daily sessions on a nebuliser.. So in truth I haven’t really felt any impact of the mets growth.
Co-morbidity of osteoporosis has slightly worsened recently and my artificial hip has decided to act up so as a result my mobility is now pretty poor..
If things couldn’t get any worse then my darling husband who has been a pillar of strength for me both physically and mentally suffered a brain bleed stroke about 5 weeks ago..He has been very lucky and not suffered any physical damage but emotionally this has been a very trying time for us and I need to able to be there for him now just as he’s been there for me throughout my 15 year cancer journey. He will be having a series of tests and scans in early January .
In a nut shell the last thing I need right now is the trauma of treatment side effects so have made the decision not to resume treatment and let things take their natural course.. I will update my profile
My Consultant understands my motives and although he would prefer me to re-start treatment has accepted my decision and agreed to scan me in 4 months to see how things develop and whether I want to change my mind.. In the meantime I’m getting wonderful support from my Macmillan nurse and my GP ( who is also caring for Hubby)
Yes it is a trying time but I’m not feeling sorry for myself I’ve well out witted my sell by date and am determined to continue to do so..
OK I’ve offloaded (thank you for listening ) now I’ll get on with it..
Hugs to you all
Rojan
Footnote. Bought a wonderful book of poetry recently called Wild Hope written by Donna Ashworth. Can defo recommend it for all we incurables. One poem that hits home is called Don’t Lose Hope. The opening line is. “Don’t lose hope ,put it in a safe place”
my message to all of you x
Hi Rojan, Mable can have a few wobbles then come right again when you least expect it, so never give up hope. I can understand your decision to postpone treatment for a while so that you can support your husband. My husband was diagnosed with Bowel Cancer in September and our whole world was upside down. He had surgery to remove part of the Colon after tests revealed there were tumours there. It was the first time he had ever been in hospital, whereas, I have had numerous surgeries. We rode this roller coaster that is cancer, together for a while waiting for biopsy results etc. However when we saw the surgeon on 30.11.23 he assured us they had got it all and he did not require chemo! Like you, my cancer journey has been long but he will now be monitored for the next 10 years. Once every 3 months to start with, then every 6 months etc.
I found the strength to look after him when he came home from 16 days in a High Dependency Unit and my mobility is nil without aids. I had to manage on elbow crutches because he was not fit enough to push my wheelchair! Fortunately we have a stairlift. I would recommend speaking to your Occupational Therapist to find out if they can help with any aids for you both.
Keep outwitting your sell by date and I hope your husband will make a full recovery once he has taken it easy for a while! Remember we are always here for ne another, so let us know how you are doing!
Love Annette x
Thank you Annette for taking the time to respond. I said I didn’t need anyone to reply to my post but I know all too well that members of our less than desirable group automatically reach out to each other in difficult times so thank you again.
My husband is doing well and is recovering remarkably quickly and that is part of the problem. It is far too soon for him to be taking on the physical support he normally gives me so willingly. It’s not so much that he thinks of himself as super man more that he is just a man and men do find it difficult to acknowledge illness or frailty. Bless them. So my task in supporting him is quite simple really in making sure I don’t cause him to do anything stupid which I know he would if my needs became greater due to treatment side effects. If I’m really honest there is a great part of me that just can’t face treatment at the moment in fact I’m not sure I want to go down that road again. It’s the age old argument of quality over quantity. So perhaps I’m using my husband’s stroke as a cop out. I’m not sure and I think my consultant read the situation correctly that’s why he is happy to scan me again in 4 months to see how the land lays then. I’ve only had to make minor adjustments to my daily routine. The wheelchair is locked away in the boot of the car (the car that hubby can’t drive yet a while) and I’m restricting my walks to that which I can manage with sticks. I already have adaptions in the house that meet my needs And as for house work, I’ve always hankered after having a cleaner so now have the perfect excuse. Nothing is irresolvable .
I’m so happy to hear that your husband is recovering from the very traumatic surgery he has been through and hope his recovery continues with no need for further treatment.
Keep looking after yourself and each other
Rojan x
Hi Rojan
Thank you for updating us with all that's been happening. I'm sorry to read about your husband's health and your current situation. Thank you for the book recommendation, I'll look into that.
A x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007