Appts, Alone or with someone??

Just wondering if you all prefer to go alone or with somone for appts.
I have gone alone to so many treatments when having chemo and actually got on better than when OH was there.
I find it a strain when someone comes along as i am concerned about them more than myself.
OH usually reads a paper, and with my next appt asked how long i thought i was going to be. I just decided there and then I dont need him there. If work is more important. Perhaps i am just on edge about this appt.
Our BC assessment unit is ridiculous they have one main waiting area and men have to wait there. You are then in another waiting area in your gown hence men cant come through and you sit waiting for mammograms ultra sounds etc on your own.

Always thought even if someone is with you and you get bad results ultimately you just have to get on with it.Think this cancer has made me hard.

Rx

Hi Liverbird

OH just drops me off - he prefers it that way so a least one of us is happy! I then nod off.

Having said that Monday I’m on my third attempt at Tax 1 and I really want him there - have dropped hints but no good.

Think it’s just a question of what works best for you.
FizBix xxx

I do prefer to go with someone else, although it is not always hubby, sometimes its a friend, I get very bored on my own with no-one to talk to. An it is always nice to go out for lunch when it has all finished before I start to feel like c**p the following few days

Linda
XX

Guess I have been rather spoiled at Derriford Hospital, Plymouth. A new breast care centre was built about 7 yrs ago, pleasant initial waiting area, then if you are having mammos/ultrasound/biopsies, another waiting room. Husbands/partners/friends are actively encouraged to be with you, except for the mammo room. A nurse went to get my husband when the radiologist realised I had a malignant tumour and asked hime to come in with me for the u/s and core biopsy. She even made my husband look at the screen whilst she showed us the tumour. We were then taken to another room, an office really, to meet the bc nurse, told I had a malignant tumour, given tea in china cups (all on the NHS) and given a choice between mastectomy with rads or WLE - both with sample node removal, as SNB was not available then. They even had a date 10 days hence for surgery. It was a whirlwind.

The Oncology Dept is in a different area, a pleasant waiting area with a WRVS coffee bar.
My husband came into the chemo room for all of my treatments and was given a comfy chair next to mine. The nurses even brought him hot or cold drinks. There were some 6 private chemo rooms with a t.v. and a visitor’s chair, but I preferred to be in the main room, although I often wished I dare ask to have the infusion on one of the two beds in there! Hubby just sat quietly with a good book, and ate the picnic lunch provided, which I couldn’t eat as I felt so sick (my chemo was always over the lunch hour), and as I had the cold cap (successful!) we were there about 3 hours. I just could not have done it without him. The journey was around 2 hours each way, including a ferry ride, so it was a long day. I would sleep, laid down, on the back seat of the car on the return home. We have no local transport at all within 3 miles, so it would have had to be a taxi at some £40 each way.

Radiotherapy was quite different as I was offered free volunteer transport. Hubby didn’t come to any of them and I was not allowed to take him or a friend in the car provided. Compared to chemo, this was duck soup, although as we had to pick up and drop off other patients in a very wide rural area, I was often out for 6 hours. I took a book and a cold drink, and was fine, although tired. I just looked on it as a magical mystery tour, seeing places in Cornwall I had never been to.

I cannot fault my bc treatment whatsoever and feel the Oncology Dept did more than my expectations. I did take large boxes of chocolates for the two elderly receptionists, which helped oil the wheels.

Some £250,000 was personally raised in the local community by my bc surgeon for this new facility and I feel very fortunate to have been treated there.

Liz.

My OH had just started our business 6 weeks before I was diagnosed and he works from an office at home as a web developer, so he is able to be very flexible with his hours of work as everything is virtual (although he does go out on business meetings and we have clients come to us). My diagnosis came as a complete shock, as I had already been told 4 weeks previously my test results were clear. The day the surgeon told me was the one appointment my OH did not attend - as I thought I was just having the dressings removed from the benign fibroid I had removed the week before, I told him to go for a coffee in the hospital cafe. I had to give the BC nurse a description of him and his clothes as the surgeon said he had better come in. There is a notice on the wall of my clinic that patients are actively encouraged to be accompanied for test results etc. When he came in he knew exactly the right questions to ask the surgeon, so I felt quite calm.

We are the sort of couple who have always done most things together, so my OH put his business on hold for 6 months until we knew how I was going to fare with all the treatments, also emotionally. He said he wanted to give me as much support as he possibly could to get me through this (and boy, did I need him there when I was on Taxotere as I was so ill). He has attended all my chemos and took me for rads every day. I was fortunate enough to have my Herceptin done at home, so he acted as tea boy when the nurse came.

He worked very hard to pick up the threads and build his business after I finished Taxotere in June last year, prior to that he just did the odd freelance job and studied loads of tutorials to hone his skills. As I was in bed for the best part of 3 months he would study into the early hours.

I don’t know what I would have done without him, this experience has made us even stronger and I know it has been difficult for him as his family are 450 miles away in London. I am now retraining and am about to become his business partner - my onc said last week she thinks it’s great we are going to be working together. My OH has a science background, so was also able to explain to me things which I did not fully understand. This all helped me stay calm and focused.

I dont have any family or close friends in the area so just had to put up with being alone. The worst was when in hospital I had no cards or visitors and the lady in next bed who had a large local family, kept telling the nurses you can tell the nicest people by the no of cards and visitors they get. She had 30 cards and six visitors every visiting time. I did wish I had someone but the advantage was I had noone to worry about.
Val

I had a very close friend (who sadly died last September) who had a husband and family but her husband was in complete denial about her illness.

I used to go with her when it was her appointments (but not into the consulting room as we both had the same consultant and it didn’t feel right for me to be there) but she said it meant a lot me just being there with her in the waiting room.

The same thing happened when she was in our local hospice - her husband would come for about 10 minutes and she never knew when he was going to go. So sad really because she was a lovely lady and all she wanted was her family there.

Really sorry to hear your experience Val in the hospital and it was very insensitive to the woman in the bed next to you re cards and visitors. No one knows our background and obviously, for some people, it’s so easy to make an assumption which can very often turn out to be the wrong one.

Pinkdove

hi ruth,
I always take OH but I leave him in waiting area when I go in…my choice, at our hospital you are encouraged to take someone with you, they can sit in waiting area with you and go in to Consultant/BCN with you, same with mammogram…except obviously they can’t come in whilst your having it done, and you don’t get changed until you get into the mammogram room.
When i had chemo, OH came with me and was welcome to sit with me when chemo was administered…again I wanted to do that bit on my own, he also came to all but one radiotherapy session with me…that one being one my friend wanted to take me to so she could see unit etc.,
I’m ok knowing he is just outside if I need him.
When I rang him on Friday to say I was going over hospital, he left work straight away to be with me.

I’m also sorry to hear about your experience whilst in hospital Val, it was a very insensitive comment, did she not think that perhaps you might like a bit of friendly support from fellow paitents.

karen x

I always had either one of my sisters [both came with me day of DX], my OH, daughter or my aunt for all appts up to rads stage. Did most of my rads on my own cos I felt well enough to and it was only half an hour max each day. Had an appt recently with my surgeon after all treatment finished and really wanted to go on my own to give me the chance to be really candid with him and ask anything I wanted without worrying about upsetting anyone with home truths.
I was admitted after 4th chemo cos blood count fell through the floor and my family made sure I had someone with me for pretty much all the aloud visiting time. I woke up one time to find my dad sitting there watching me quietly, very emotional moment.
AJxxx

I was diagnosed when I was on my own (I expected to have a cyst…the one that another clinic had misdiagnosed 7 months eralier.) Since then my partner has come to just about every consultant appointment with me. I have been to most of my chemotherapy appointments alone as I did to most radiotherapy ones. I usually take a newpaper or a book to chemo…I have private med insurance and sometimes wish I had other people to chat to (another thread on this).

Jane

I have no family other than my 18 yr old son in this area. I am also a non-driver so had to have someone drive me to all my appointments. Initially this was either a colleague or my son. My dx was officially confirmed after surgery because my core biopsy had shown a negative result for BC… Mam had come to stay and play nurse when I went into hospital so both she & my son were with me for that appointment… although I went in to see the consultant myself.

I did not need chemo but had 6+ weeks of rads - transport for this was arranged through a local voluntary drivers charity & I was allowed to take ppl with me if I wanted. My son came to my rads appointments if he had a day off work and most days after he was signed off work with a broken wrist.

Just wanted to say to Val that a genuinely nice person would not need to convince everyone else of her niceness by repeatedly telling them how nice she is (those poor nurses must have been fed up to the back teeth with her!). And a genuinely nice person does not deliberately make those sorts of snide comments about someone else.

Always want my hubby with me for consultations, when there is so much information to asssimilate. But prefer to have the chemo/herceptin/scans alone. It makes me feel as if I still have a degree of control over my life, and I also like to impact as little as possible on family life when possible. We’re aiming to live as “normally” as possible, when possible, so this works well for us. Have to say though, that I’m incredibly fortunate to live only a 5 minute walk from our unit, which makes this practical for us.

I usually take my hubby when I am due scan results and at normal clinics often friends come with me as the day can take upto 8 hours sometimes.
I find my hubby often falls asleep or just reads his book and is no company for me and often disappears just at the crucial moment!!!
My treatment is now over 3 hours long so it is easier if I have someone with me to get lunch, drinks etc as the chemo unit does not provide these.
The last time I went to challenge my consultant I took my sister in law and friend with me so they could help me argue the point but I quite like going on my own as then I can chat to others
VAL - that was a horrible thing to say. As someone else said a truly nice person would not boast about it and even have shared her flowers with you etc.
When I was in hospital in london for 4 weeks and my family were all in South Kent so to save fares etc, they all came singly. It must have looked as if we didn’t talk to each other but it meant I had someone about every 3 days then…
Kate

I always have my husband with me and it is useful to have someone else to hear what is said.i always seem to miss something.Our hospital encourages it and also provided comfy chair beside me and drinks for OH.I think it is disgusting that someone should make thaat comment re cards/visitors it says a lot about the type of person she is.Vx

I always had one of my daughters come with me when going to see my consultant as it helps. I never seem to register every thing that as been said to me. They have even taken turns taking me to the hospital to have my chemo.

when i had radio i would go alone unless one of my daughter’s offered as i felt well enough to do it a lone. But in a way you are not alone when you are at the hospital there is alway’s some one that you could talk to who is having the same treatment and cause it passes the time away whilst your waiting.

I now go to have treatment for Herceptin on my own as i feel ok to do so im only in my early stages of this. I feel i dont want to keep putting to much on my daughters they have been brilliant and very supportive.

oh and the comment about the cards/visiters is not a very nice thing to say. When i was in hospital i had flowers given to me They were to much for me to take home so i left them for others to have the benefit…

There is alway’s one…

When I was in hospital having my underarm cleared, I expressly asked for no flowers or cards as I can’t be bothered with all that stuff in hospital rooms (I was in a side room). I think my surgeon and the nurses thought I was Billy no mates lol! Another lady in a room along the corridor had a room full of floral arrangements and cards. The perfume just hit you when you walked in there and it reminded me of a funeral home.

I don’t even like TVs in hospitals as I am happy with peace, quiet, good reading material and my own company. My surgeon remarked he could tell I was bored as the pile of books at the side of the bed was taller every time he came in!

My dear Mum comes with me to some of my appointments - at her insistance, and it is nice to have her there but I feel guilty sometimes as my lovely Dad passed away in the same hospital and it must bring back sad memories for her - plus he was being treated in the same cancer unit.

My boss insisted I took a colleague with me to my Oncology appointments to make sure we got all the information necessary - don’t think he trusted me to catch everything, but after a couple of these accompanied appointments I used to sneak off on my own as I hated taking someone away from their work and plus one of them, who I adore, wouldn’t let me get a word in edgeways at times and I felt a bit of an idiot who couldn’t speak up for herself.

I know I am very lucky to have such a wonderful boss and work colleagues / friends and hope I don’t sound ungrateful.

Love to you all,

Tracy xxx

When I had my primary dx in 1997, my partner came with me to all my appointments, including 6 courses of chemo at the Breast unit in our local hospital, but I mostly took myself to the three weeks of radiotherapy at the Christie Hospital. I really appreciated her company during dx, surgery & chemo, but felt OK having radio on my own, and it meant she didn’t have to take huge amounts of time off work.

I now have very mixed feelings about having someone with me at hospital appointments – when I was diagnosed with bone & liver mets in October 2003, my partner and our friends decided I should have someone with me at all times for appointments/treatment at the Christie Hospital. So when my partner was away or at work, a friend would drive 20 miles to pick me up, then another 20+ to the hospital, followed by long waits in outpatients, and then another 40 or so miles home. While I liked the company, it did make me anxious about the long journey and putting someone else through the very long waits and the stress of Christie’s generally (it’s a specialist cancer hospital), so I eventually told everyone I was happy to go to onc appointments on my own. Now that my partner and I are both retired, she usually (but not always) goes with me to my nine-weekly regular appointments, and is always with me for my liver scans (ultra-sound, and I always get results immediately). While I do feel uncomfortable about exposing her to the very ill people at Christie’s – as someone with incurable/terminal BC, I always see “my future” when I’m there, and worry about how that affects her – I also appreciate her being with me, to ensure that I (a) get all the info I need from my onc/nurses, etc, and (b) don’t feel unsupported and isolated in a stressful situation. But I still have mixed feelings about her (or anyone) being with me . . .

Positive note: both the Breast Unit at my local hospital and my onc team at Christie’s have welcomed my partner’s full involvement at my appointments, scans & treatment – somewhat unexpected in 1997 (and even now) as we are a lesbian couple.

Marilyn x

My partner was with me when I received my diagnosis and may have been there for my first dose of chemo (can’t actually remember though). Since then I have been to my very many appointments, scans, chemos on my own and have no problem with this. There is usually someone or other that I know at the hospital to talk to, usually women I have met through this board or similar. The staff know me so well that often they do not even use my surname… On the other side of the coin, there is a lady I know who frequently arrives with about half a dozen family members and they are all accomodated and taken good care of.

Jenny