waiting & feeling abandoned (with update!)

Former Member over 4 years ago

14 replies
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UPDATE

original post is under this…

first - thanks to all who responded much love to all xxxx

If you don’t want to read all / I’m in remission but may need preventative radiotherapy (waiting on that decision & am totally fine with that).

Happy but upset with treatment following scan and today’s appointment

**** UPDATE ****

PET CT was on Tues (21st sept) & i hadn’t heard anything by sunday (26th sept - original post) & here’s the update (bit long sorry!)

I called the specialist nurse team on the monday (27th sept) and told my team meets on tuesdays. She checked the list and saw I wasn’t in it for discussion the next day. Told to leave it with her and she’ll look into it.

she rang back in 10mins and said all good - results discussion tomorrow and they’ll be in touch within the week

Received appointment card in post the next day (28th sept)

= confused me

I left it as I figured I could ask them about this appointment when they called re my results.

NO CONTACT FROM THEM AGAIN

I called on that monday (4th oct ) but no answer- left a voicemail asking for someone to contact me,

NO CONTACT FROM THEM AGAIN (AGAIN!)

At this point my mental state is ridiculous so I decided, I have an appointment so i’m just going to leave it and wait till then.

I decided to call on the friday before (15th oct) as i wanted to check my mum could come with as coronavirus rules are sometimes in place.

All good - mum can come with thank goodness.

I asked if i would need a blood test (just so i could be sure to drink plenty of water in preparation - dodgy veins! ha ha). Yes I would need one and to come in an hour early so we can get in done and have results ready at appointment time. She would leave a blood card?? at reception for me.

I asked if she had my results but alas she couldn’t tell me anything.

TODAY - 18th oct appointment day!

got there an hour early but receptionist knew nothing of any blood card left.

Waited about 10mins and was called to be weighed, it hen waited the rest of the hour until my appointment with no calls for blood taking.

Went into appointment with mum and doc asked “how are you?”

Anxious for results says I !!

Doc responds very brisk Well you’re ok so I’ll check you over and you can be on your way! Not paraphrasing here… that’s how the info was given to me.

I had to get him to clarify that the chemo worked etc

It did and i’m in remission- yay!

He did a quick physical check and told me because the lump (that started it all) was large to begin with he needs to check with radiology that they don’t want preventative radiotherapy doing, I’ll know this week if that’s the case… I am confused (& honestly p*seed off) as to why that discussion hasn’t already taken place though!

I had questions! (lots!) but he didn’t have time for me.

Me & mum were ushered out of the room & told he’ll be in touch within the week and then if no radiotherapy needed then I’ll get an appointment in 3months as part of ongoing follow ups.

He was already on the phone about another patient before we left the room.

I spent a total of 4minutes with the doctor.

I know docs are busy but there wasn’t even a nurse with us who could then answer our questions afterwards - we were just left to walk out with no information.

I didn’t even ring a bell (not sure I would get to anyway as I don’t think I have the right cancer for the bell ringing).

I’ve spent most of this afternoon sobbing. Partly in relief knowing chemo worked but mostly bed cause there was no aftercare at all.

I still feel abandoned & lost (but so so grateful i have this community to help).

Anyway,

thanks again to all for listening / reading my little rant and for all your lovely messages and advice.

Hope everyone is doing well on their journeys xx

**** ORIGINAL POST BELOW ****

Hi all

this may seem like a pity party type of post but i don’t know where else to turn.

I’m 39 & just completed 6 rounds of chemo (r-chop).

I had my PET-CT on Tuesday (21st) and was told they would send results to my consultant that day and I should hear within 48hrs but I have heard nothing. Today is sunday (26th)

I just want to know if treatment worked or if I need more. I’m just in limbo again.

I know there is so much pressure on the nhs right now and I don’t want to be a bother but I feel like I’ve just been forgotten a bit.

I don’t even know who to call to chase for results as I don’t have a number for my consultant and the chemo ward basically told me after my last treatment to not call them now as they have done with me.

I’ve felt so alone throughout this. I live with my folks who have been fab but I don’t get a moment in the house alone so calling anyone for a chat is out of the question (plus I struggle with my hearing at times so it’s tough on the phone).

My treatment left me shattered so travelling 1hr to the hospital to see a nurse / doctor / mcmilllan staff to talk was also out of the question.

Right from the beginning I have had no real support it feels

From diagnosis to treatment I felt I was rushed through - I never even got a complete diagnosis (what stage I had - i never thought to ask to be fair because i was still just getting used to “having cancer”) and I felt that I was a bother when asking questions. Again, the pressure on the nurses etc means they haven’t had time to talk really… they have all been lovely and kind (especially putting up with my constant tears!) . This post is in no way meant to slate anyone - I know they are doing all they can.

Nobody even explained what happens during a chemo sessions or what i should wear / bring - I didn’t know If have to take 21 pills! and i struggle with pills but if if known i would have been mentally prepared

Im so sorry for just whining here and being all “woe is me”. People have it far worse I know. I’m just feeling lost and sad and tired

These boards have been great as I’ve been able to see people going through tempe same as me so I haven’t felt alone as much. Thank you to all for sharing stories xx

johnr over 4 years ago

Hi, do you have a specialist cancer nurse? if not you could ring the hospital switchboard and ask to be put through to the consultants secretary as they will know who it is. If you find you are still getting nowhere ring PALS at the hospital and they can help or call the helpline here at macmillan for advice. Sadly Covid has impact on how some patients have not had the quality of care and treatment we all grew to expect pre the pandemic but that should never be an excuse as many have had excellent care.

Now your at the end of treatment reading this paper will help you understand treatment and prepare to move on and learn to get back to life, its helped thousands over the years.

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

hope you get your results soon

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Sassy1234 over 4 years ago

Hi auntiek

I am sorry that you’re going through a tough time at the minute. The waiting must be agonising as it’s such a massive result. I can really relate to some of things you have spoke about. I will have my 6th and final session on the 15th Oct and I am already anxious about whether the treatment has worked.

You mentioned about feeling alone and not necessarily getting the support you really needed from the nhs. Like you, I appreciate how stretched they are and I am a massive supporter of our health service, but I’ve never seen my scans or ever been told what my bloods are doing. I get a 5 minute telephone call from a member of the team a couple of days before my next chemo, I’m ok with it, but I would have liked the opportunity to sit and talk through and see my recent CT scan, etc.

Finding this site has helped me more than anything. Just being able to chat to people who are going through/or have been through it is so supportive.

Can you call your consultant’s secretary tomorrow or drop an email?

Finally, you’re not whining, you’ve been through a tough time, I don’t think any of us really appreciate how difficult it is and no matter how lovely friends and family are they don’t truly know what we’re going through, so if you need to off load, whine, moan or whatever makes you feel a little lighter then do so….I’m happy to listen.

Take care and keep us all posted.

Sarah x

Thehighlander over 4 years ago

Hi again , the waiting is indeed hard and I see you have received some great support already.

The Lymphoma journey can be hard and lonely but there are places where you can connect in with others and talk with them.

Do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service….. this is different from the wider Mac Community as it is very Lymphoma focused.

I do hope you get word soon ((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

See my story

Sassy1234 over 4 years ago in reply to johnr

Hi John

Thanks for sharing that article with auntiek, which I have read, what a well written piece. I found it really helpful and it made a lot of sense. Thank you.

Sarah x

Former Member over 4 years ago

Hi Auntiek

I typed a long post earlier but then lost WiFi and it disappeared so I will try again.

Coming back to and re-reading you post again, the bit about not wanting to be a bother jumped out at me. One thing that this whole experience has taught me is just how valuable life is and therefore please don't ever feel like you are being a bother.

I am near your age (38) and also completed my 6th rchop recently on the 9th of Sept for primary mediastinal nhl. My treatments were only 2 weeks apart and the whole process has also taken a toll on my body. My hips ache something terrible along with a whole host of other symptoms so I'm just hoping with time it will get better.

I have started experiencing pain in the area of my primary mass since my last treatment so called my haem specialist nurse today. She is going to speak to my oncologist and call me back tomorrow. She said it was unusual to experience pain so soon after treatment and that she would be very surprised if it was the cancer getting worse again.

One tries not to panic but with not knowing what is normal any more it is hard sometimes. I just really hope everything will be OK. I also just read the link johnr sent which did put things in perspective and make me realise I am not alone in how I'm feeling. Thanks John!

I can relate to many aspects of your post... I have also never been shown any of the imaging/scans, nor was staging discussed. I did eventually ask but then wished I hadn't. At times I felt that I have been told very little which led my mind to think the worst on many occasions. I have always been such a positive person but going through this has proved a real mental challenge for me with many tears also being shed along the way.

I have my next telephone appointment with the oncologist on the 20th of this month. I haven't however been told a date for my PET scan and so I'm not too sure what is going to be discussed. I would have expected the PET first then the call to decide whether I will need radiotherapy. I suspect I will due to my mass having been bulky but at the moment I also feel that I have just been taken off the conveyor belt and put aside without really knowing what happens next and when it will happen.

All any of us want I'm sure is just to get some good news at the end of the gruelling treatment and unfortunately not knowing the time lines for how things run on the NHS very often leaves us feeling a bit in the dark or in limbo sometimes.

As it has been a few days since your post I hope that you have now received an update and that the news was very good.

For now I am sending hugs and prayers and wishing you all the best on this horrible journey that we are on together xx

Former Member over 4 years ago in reply to johnr

thank you so much for this helpful article ️

johnr over 4 years ago in reply to Former Member

pleased it has helped, when things become challenging or your having a bad day remember to read it again if it helps,

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Former Member over 4 years ago in reply to Sassy1234

thank you for your kind words

i’ve updated the post with news (but you don’t have to read !)

im hoping to somehow get more support but until then i have this great community ️

your chemo worked too xxxx

Former Member over 4 years ago in reply to Thehighlander

thank you so much for your words and support also thanks for the link to lymphoma action - a great resource xx

Former Member over 4 years ago in reply to Former Member

I have my fingers crossed for you that your journey also improves.

I’m still in the dark about a lot of things but I’m hoping someone plucks me from the darkness and helps me.

Until then, I’m going to lean on people here a little more and realise that I’m not completely alone in this xxxx

ps - I sympathise with the hip pain!!! no-one suggested that could be a side effect to me but I hope it disappears for us both soon!

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waiting & feeling abandoned (with update!)