Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Struggling with everything

Button16
Posted by

Hi

My new pain meds are really good and work which is amazing.  Now I can get back to building up my walking! 

I also saw the RT consultant who was brill and only diverted which bit should be treated first.  I wanted to cry considering how negative my consultant had been.  So RT booked in for next week! I'm really hoping things are picking up as it is taking me longer to pick myself up. 

I've even got used to asking for help! So thanks for the encouragement (nagging as Annette called it lol) to do this. 

Much love to you all

Maybug
Posted by

Good to hear that your pain meds are working and that you had a positive consultation. 

Maz59
Posted by

Really glad to hear this it makes such a difference when you feel listened to and someone gives you some positive feedback. Hope the pain relief continues and the RT helps also and you can look forward to and enjoy a nice summer with your family. 

I am off on holiday with my Grand children 6 and 7 years next week and am leaving all my troubles behind as my oncologist has not got back to answer any questions I sent about my treatment and what I need to do while awaiting surgery. However the Chemo nurses and his secretary are also having no luck either so perhaps I should not take it personally. The surgeon has taken the plunge and made a decision today and said for me not to continue the next cycle which should start tomorrow as he wants my bloods to hold (talk about leaving it to the last hour) and asked me to inform the chemo unit. 

Surgery is booked for 9th August hopefully someone will talk me through things before then as I am still not certain it is the best option or if it is the only option. 

For the rest of the week I am only going to hope the weather will be nice on the Northumberland coast next week. 

Love to you all

Maz 59 

daloni
Posted by

Hi

I am so relieved to hear your pain meds are working and that you’re in good hands with the RT. You sound a whole lot cheerier. Phew! 

Xx

daloni
Posted by

Hi

I think plan have a good holiday and not worry for now sounds like a good one. I do hope the weather is good for you and the grandchildren. Have a holiday to remember!

xx

Maybug
Posted by

Maz59. I live in the Northeast and the weather is looking great for next week. My daughter and granddaughter are coming to stay so we can both enjoy our beautiful beaches with our grandchildren. 

Maz59
Posted by

Thanks I am sure just being with the kids will make for a great time but if you get the weather there is nowhere better on earth than the northeast coast. Really looking forward to it and it will take my mind off the op.

I have done everything I can now to find out info so if I find they should have told me something they haven't it is not my fault. 

Maz 59 

anndanv
Posted by

Hi BUTTON, It's amazing the difference when something works to help with the pain and I'm so glad the RT department sounds as if the staff are on the ball and capable! It fills you with hope and confidence! Long may your meds work!

MAZ, Yes I know what you mean about just having your grandchildren around makes such a difference! It makes us happy! Enjoy spending time with them!  Can I ask what is the surgery for that you are meant to be having in August? I'm assuming someone has gone over things with you already and explained why it is necessary! If not, when you go for your pre-op assessment, that's when to ask all your questions. If they don't convince you that it is 100% necessary, then don't have it! Simple! I hope the weather is kind to you!

Love Annette x

Maz59
Posted by

It's a bit of a long story but I think it will explain why I am so concerned. 15 months ago I developed a second primary cancer in my other breast. At this time I had secondaries in bone and liver but was doing remarkably well. My oncologist wanted the surgeon to operate as it was very small and only one lymph node showing as possible spread. I was sat down and told that he would not operate as I did not have 3 months left to benefit from it. My oncologist did not agree with this but saw a funding opportunity for another treatment and decided he would try to shrink it then refer me again. 6 months later (Jan 19) scans were again favourable as the lymph node had shrunk but for some reason there was no mention of the breast lump. The oncologist said he would chase this several times but he kept forgetting. In May I knew there were changes and the oncologist sent me for scans and back to the surgeon. 

The surgeon on 25th July sat us down and explained again that he was not willing to even do a biopsy of the lump in light of the new scan result ,which we had not been told of yet, but the lump was much bigger had spread to the skin and i had secondaries in the lungs. Shock horror. He did say that it would be discussed at MDT but his vote would be no to any surgery. We saw oncologist the next day who was unaware of everything he had not even seen the scan results. At this stage we thought surgery was a definite no but he was looking at other options. RT, Chemo localised meds.  He was going to raise it at MDT.

On 9th July we were summoned back to hospital and this time sat with the surgeon who explained he had been convinced at MDT that he should operate and wanted me in the following week. As you can imagine we were totally bewildered. We did manage to ask a few questions as he had told us last 2 times he would not be able to close the wound and I did not want an open wound, he now felt he could do this. He was very clear that he did not think the op would do anything for me but had agreed as it was painful. This was also something he had maintained surgery was not used for in the past and quite honestly not something I wanted an op for as the pain I have is bearable. I was asked to let them know the next day about surgery the following week. All I know is he will remove the breast all lymph nodes in breast area, under arm and neck.

I managed to speak to a helpline nurse who explained a few things and we worked out next week was unrealistic as I would need to stop meds and have time to plan. It would have meant missing my holiday with the children. She also reminded me of something I had been told way back about the cancer breaking out of the breast and this was a very compelling argument for going ahead with the op. She was right about the meds the surgeon had not realised I was still on them and he wanted 2 weeks clear at least. However he was going on holiday the day after the planned op so could not then do it till August. 

I have sent a number of questions to the oncologist as I want to know my meds that are keeping the first cancer in check will not be stopped because I have surgery. Also is the little I have been told right. My next appointment with him is 2 days before the op so I would have liked to have so answers before then. Also when to stop my meds should I do it now at the beginning of the cycle or wait till 2 weeks before. The chemo nurses are chasing that now also as I should pick them up today. 

As you say though I am going to park it and enjoy my holiday my pre op checks are on 29th July so hopefully anything they cannot answer they will be able to find out. 

On top of all this I am terrified of hospitals and operations my poor husband will have to put up with a number of mood swings between now and the op. 

Sorry for the long reply. 

Maz 59 

Wee blonde
Posted by

Maz, ur story sounds v like mine. U may have read in my previous posts that 3 surgeons have all now said no despite my oncologist suggesting mastectomy twice in 18 months. Currently waiting 4 the RT which will now start this Mon (long rant...) but I have an alien boob with a fungating open wound (bleurghh), tumours in the other boob & a painful arm with a substantially enlarged lymph node in my armpit- all of these lumps & bumps are painful and/or unsightly.

Annoying as still at that "goes u look really well" stage. Aagghhh.

Enjoy ur break & try not 2 think about wot is 2 come

Luv

WB xx

Wee blonde

Hard working,  bubbly, positive

anndanv
Posted by

Oh Maz, I was so sorry to read your post, in some parts I got the impression the left hand doesn't know what the right hand is doing!!   For instance, the first thing that's usually asked by any professional is "what meds are you currently on"? So how the surgeon was not aware you were taking meds you'd have to stop before you had surgery is beyond belief! The fact you were told by the helpline nurse whom you phoned and not one of your team, just shows how on the ball, the McMillan nurses are. She also said the op is necessary and I believe her 100%. None of us wants surgery but sometimes it is for the best! I recently had spinal surgery that I had refused (and also the surgeon said no at first) but I was told by a physiotherapist that if I could manage the pain, that was fine but there may come a time when things escalated and I could find because of the squashed nerves, I could loose control of my bodily functions. The time did come about fourteen months later when I had no control over my bladder and knew I HAD to have the surgery before things were totally out of control. I discussed this with the surgeon who agreed the time had come to operate. The date came through for 2 days before we were due home from a three week break! Typical! I spoke to his secretary who agreed when I said the holiday would give me a boost and time to get my head round having more surgery! We had a great holiday and I can honestly say, I didn't start to think about the surgery again until the day before we got home!  You enjoy your holiday with your family and I'm sure you will be in a better place to cope with the surgery afterwards!  How long are your daughter and grandchildren staying for? It will be fantastic! Then once they've gone home, start to phone to find out about your meds etc and write down any questions you have to ask, before you talk to anyone, then you know you will not forget. Enjoy every minute! Take Care 

Love Annette x

tvman
Posted by

Hi WB 

I don't know how you keep upbeat most of the time. You're incredibly strong and brave.

Tvman xx

My philosophy is simple, love life and family.
tvman
Posted by

Hi Maz

I seem to have been reading posts from you for ever! Keep them coming, I've always time to read them. 

A lot for you to contemplate, and a lot of good advice from Annette and WB. Enjoy your holiday with your grandchildren, it'll be good for you to spend quality time with them. Children have this uncanny ability to help you to relax and see the world from a simple, straight forward point of view, like where's the next ice cream coming from? For them, you're the granny in a million and their cuddles whip you off to a place where you know you're loved and idolized. 

Take care and love being loved.

Tvman xx

My philosophy is simple, love life and family.
Wee blonde
Posted by

Tvman, most of the time I probably bury my head in the sand rather than think about life. I set little goals & then feel lucky when I reach them aka wanted 2 c daughter go 2 Uni, wanted 2 c her finish 1st year, then 2nd year, then 3rd year. Trying 2 c her graduate in July 2020 would b my ultimate goal but at the moment I'd b happy with seeing her get 2 her 21st at the end of August.

The accident prone child has had a visit 2 the ER whilst in the USA - hope I don't have 2 pick up the bill 4 that #wotachild #clumsy #typical

Off back 2 hospital 2morrow 2 c if I get 2 start my radiotherapy this time.

Good luck 2 me

Night all

WB xx

Wee blonde

Hard working,  bubbly, positive

daloni
Posted by

Good luck, WB. I hope they blast the alien to kingdom come 

xx