Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
Top

@StolenCherries I was a GP before I got cancer now I am a lazy pensioner
Has your DH been tested for glandular fever? Also known as infectious mononucleosis or Epstein Barr virus. It causes throat pain swollen glands and extreme fatigue. I wouldn’t be at all surprised if he had it. Try to keep off Google and wait for facts before you panic. It’s hard to resist but it doesn’t often help. Try the NHS Choices site instead.

LFT still negative here and my hypochondria has settled a little!
Best wishes to all
Top

At my follow up appointment his evening ( had core needle biopsy last week), I was told I have got Radial Scar. I need to research it. My meeting was a bit confusing but I think I may or may not need an MRI and/or Vacuum biopsy. Doctors will discuss and get back to me. But I will definitely need an operation. This mass is about 2cm. The consultant said they don't see cancer at the moment but also I think he mentioned there may be some precancerious cells or hiding cancer. My breasts are dense and that makes the diagnosis more difficult perhaps. If anybody knows about Radial scars please advise. Have a good evening everybody !

@Cratos I hope you get some answers soon

My ex has finally agreed to sign the financial consent order for our divorce, we have been separated FIVE years!! My solicitor is applying for the decree absolute, it should all be finalised before I go into hospital.

And my boyfriend has dumped me!!

I'm really winning at life right now ffs

I feel old and lonely and unattractive and I'm not sure how I'm going to get through the next six months :-(

@Cratos Hopefully the news will be good and you just need an operation.

@MissSmiley A mixed bag there, I certainly hear you. All I can see are the scars, the damage to my chest, the hairdo that makes me look like my Auntie Pauline and her helmet perm.

Welcome to Cancerland.

I still don’t have an appointment with a plastic surgeon, I spoke to his secretary this morning and she called him then reverted with the news that I needed to contact my oncologist. I think she understood from my wail that I have spoken to him and he is now on a 3 week holiday.

I also had a meeting with the medical dosemitrist and senior radiographer to discuss my radiotherapy plan. It’s so difficult to know what to do when there is no information out there that fits my situation.

I have considered contacting Royal Marsden and Christie’s to see if they have ever dealt with this before.

For people that don’t know - I had an extravasation during chemo back in July. My port was accessed 4 times by a nurse at home, when the epirubicin started, I said it hurt so she called her manager who said it had to be given but just run it slower.
I kept saying that it hurts and eventually refused more treatment after the 5fu had been given.
My skin has thankfully not necrotised but my scar has developed a hole recently.

My cancer had advanced beyond the lymph nodes in my axilla, I had a full clearance done so radiating the lymph nodes is quite important but no-one has done this on an epirubicin damaged chest.

It might all be redundant anyway because there might be a skin graft needed to repair the hole.

Quick post - @MrsPnut are you still on chemo? When my wounds opened up (like holes in the scars) it was due to my platelets crashing on chemo which would have been clear if I'd had a blood test. When I had similar months later a & e established the problem and gave me a transfusion. Just wondering how your bloods are looking and if your blood has low e.g. platelets or other clotting or similar factors (my problem was clearly not just platelets as they are borderline normal now but I still bleed excessively). Just throwing that out there.

@Acinonyx2 I’m not on anything but can arrange a blood test. Last Taxol was end of October.
The hole has opened because the damaged tissue has been contracting but in opposite directions over the scar.

@MissSmiley Sympathy/empathy from me. I too feel old and unattractive and my husband I have decided to separate, so although I haven't been dumped I feel pretty shit about home life. Unfortunately for us it's going to be a painfully slow separation as we need to finish renovations before we can sell the house. Renovations he's been promising to progress for nearly 3 years.

So I do feel your pain. I'm just waiting for my hair to grow back - at the moment I have sparse white fluff and when I look in the mirror I see an old man looking back.

@SewingBees I'm sorry about your separation, I'm not sure how old you are, I'm 49 and I know I'm not actually unattractive but the cancer has definitely put my boyfriend off, I gave him plenty of opportunity to step back and it's his choice and I do understand but I had hoped he would think I'm worth the trouble.
My divorce has taken years, I asked him to divorce about 6 years before we did and then it's taken us five years to reach the stage where everything is finalised, we had been married 23 years last year despite being separated for five years. I have lived on my own with the kids for all that time and on the whole we are amicable apart from the odd bout of nastiness from him. I retrained as an accountant and was just about to start my chartered exams when this happened so I'm pretty fucked off about that. Now I'm faced with life on SSP and universal credit! It's quite a change.

I hope you can look forward to your single life, I'm much much happier now

@MissSmiley I'm also 49. Hoping to be separated at least by my 50th, but that may not happen. Things with my husband are also mostly amicable but the fact he didn't really care for me while I was having chemo has left me feeling very alone and resentful. Luckily I have always been resilient so I am looking forward to a different way of life one day, hopefully sooner rather than later.

Is there no chance of you completing your exams and working again? I'm sorry but I can't remember your prognosis. It is hard when life gives you a massive kick in the proverbials and you have to rethink the future you'd dared to imagine for yourself.

Hi everyone

Trying to catch up on the thread. I’ve had a lot going on irl but it’s all just tedious so won’t bore anyone with the details. I haven’t gone back far on the thread so just wanted to say hi and welcome to the newbies.

@MrsPnut - sorry to hear about the radiotherapy issues. I would definitely contact clatterbridge on the Wirral. They are a specialist radiotherapy centre.

@SewingBees you sound similar to me with your resilience, when are you 50? My birthday is in August, I don't have a good track record for big birthdays. My diagnosis is a very rare duodenal GIST (gastro intestinal Stromal tumour 24mm) that I need a Whipples to remove. Life changing surgery and fairly high risk of dying due to the portal vein. If I survive the surgery I've been told to expect at least a couple of stone weight loss and I'll have to take creon (pancreatic enzymes) with every single thing I eat for the rest of my life. Malnutrition and weight gain will be a life long problem, my surgeon has told me not to expect to return to work after six months or even a year and I may have the energy to work again. But I'm fit (thanks peloton) and relatively young and determined so hopefully I'll prove them wrong. If I have ten years left (duodenal GISTs tend to be aggressive) I'm not sure I want to spend three of those doing a really challenging post grad qualification. Cancer certainly makes you reassess what's important in life and being with my kids is what makes me happy. I have some great friends too that I don't see enough of but I'm very lucky.

Goals this week and next (before surgery):
Have sex! (I have options 😉)
Get pissed (might not be able to tolerate alcohol afterwards)
Get my decree absolute
Sign my updated will
Hug the kids a lot!

We can do this!!

@MissSmiley I'll be 50 in November. Like you I don't have a history of very good 'big' birthdays so I'm not expecting anything great, but I suspect my sister and mum will do their best to make it special.

Unlike you my cancer and treatment has been fairly straightforward and I'm expecting to make a full recovery with no major lifestyle changes as a result. I feel for you going into such a major risky operation, but cancer doesn't give you much choice does it? I like your list of short term goals - good to have a plan!

@SewingBees I don't know which part of the country you are but I'm up for a post cancer 50th birthday blow out! I'm East Midlands, but wiling to travel 😁

I'm in far north Northumberland, almost Scotland. I have absolutely no idea what I'll be doing or where I'll be living by the end of this year which is scary and liberating at the same time. @MissSmiley I commend your fortitude and determination to be dancing by the end of the year, that's the sort of attitude that got me through chemo, and who knows what we'll be capable of. We only have to look at @Top for inspiration!

can I have a seat here this week? I am awaiting biopsy results for a lump discovered during ultrasound (I had gone with another lump that was deemed fine). It has all been a big shock and I am really struggling with the wait. I have severe health anxiety due to a catalogue of past medical trauma and don't really know what to do with myself.

Pull up a chair @feettothestars the waiting is the absolute worst time.

@feettothestars do you fancy a drink? I'm just making one? I'm getting the booze in now while I still can. Waiting is hideous.

I have a couple of questions...
I'll obviously phone the hospital tomorrow but wondered what you guys think, I got my surgery letters emailed to me on Friday and one is about isolating beforehand, one part of the info says 14 days, one bit says 10 days and one bit says at least 3 days?? Op is two weeks tomorrow.

Also I vape (I know 🙄 started again after 18 years quit, three years ago, it was part of my post separation teenage rebellion phase! I was planning to just not start again after the hospital stay, I'll be too out of it to think about nicotine but I read something online that says it's the nicotine that isn't good for wound healing, do you think I should stop before? I know the obvious answer is yes but it's my only vice (apart from alcohol) and I know I won't be able to do either after the surgery. I might never be able to tolerate alcohol again (or food for that matter 🤣)

Sensible ladies what do you think?

I'd love one @MissSmiley - my mum just had surgery and isolated for three days... not sure if this is universal.

Thanks both for the welcome. I've read a little way back to see people's stories and I'm so sorry for all you've had happen and all you still have to go through. I'm very grateful to have this place to hide in. I've had an absolutely shit year with other health issues (including skin cancer amongst other things) and I feel like I ran out of brave already.

MissSmiley Isolation periods vary on risk assessment I think, mine was 3 days but can be up to 14 days. They also asked if whole family had been isolating or I had been distancing from them just before op which noone had mentioned before. I had actually been isolating and distancing from them anyway with rates so high in schools. Would check with your hospital but with breast surgery someone who got covid had their op delayed 7 weeks and they said it was covid rules so do be very careful. I would give up vaping as soon as you can, do anything you can to stay healthy your mental health permits. A bit of exercise is recommended to, all good fun here. Though exercise is currently the high point of my day and it does improve my mood.

My results are moved back a day to 8th and different surgeon, lovely female one again, unfortunately results wont be so lovely or treatment plan. Was hoping to go swimming and go away to hotel for few nights in Feb half term by Edinburgh though weather does not look too promising atm. But they said no holidays until treatment over and another 9 months or so so want to grab what I can. I would imagine they will say no to swimming, will be 3.5 weeks post second operation of redoing lumps in mastectomy and full node clearance, 7 weeks post 1 mastectomy so hope will be ok. I have booked hotel with pool for 2 nights so far but can do other things if not but love swimming. Or maybe could do 1 armed backstroke.

Sorry for those of you waiting as well, very anxious time, found distraction is best if you can do that. The whole thing is one anxious thing after another so best to try and do what you can to save energy for treatment but easier said than done and hopefully you wont need any or just minimal.

for those going through tough times, specially made to still taste nice if doing chemo.

Top Also love chickens. We have moved remaining silkie inside and bathed her for first time, she seemed happy with that and son is happy and cat and rabbit managed to sneak past in a box which is good as she is the silkie which has anxiety and rabbit is very bouncy. He was already hyper at the rearranging of living room. Cat is seperated by baby gate as she cannot deal with rabbits hyperness.

Waving at @MissSmiley & @SewingBees - I am also 49, big 5-0 in September.

@MrsPnut what a continuous carry on! Sending lots of good vibes your way.

To everyone else, sending you all buckets of courage & strength, cancer & its various treatments are such a shithole. And waiting for results. You are all in my thoughts.

@TopOfTheCliff I agree it’s no way to live, constantly worrying. I am just so desperate to be around my DS9 for a long as possible. When I was originally diagnosed I was completely fine after active treatment, worrying about recurrence had never entered my mind. With the recurrence that has completely changed.

@Silkierabbit Edinburgh, you say? Are you being treated at the Western General (I am). Good luck on 8 Feb., once the results are in and the treatment plan is discussed I hope there will be a sense of some sort of… well, relief is the wrong word, but I hope you know what I mean. Waiting is the pits.

I managed to get an appt. for a CT scan - my breast surgeon suggested it himself at the 6-monthly check up, after I poured my heart out to him with my continuing health anxiety. I was so relieved he listened to me and offered the scan for my peace of mind (his words). Of course, now that I have a date for the scan (8 Feb.) I am driving myself potty over “But maybe they will find something after all.” Well, if they do, hopefully it will be treatable for a long time to come.

I have also started hard core Pilates and twinges I get in my upper rib (right side, where the original BC occurred) are driving me to the blackest of despairs. Most mornings I wake up drenched in sweat from anxiety.

Time for Headspace before bed.

@Silkierabbit just as well you have decided to move the rabbit & remaining silkie chicken indoors, especially as this weekend the weather has been wild! 🌊☔️

Thanks Balkan. Good luck for 8th too. I am also very anxious, anxious about the treatment plan as it will be the one where they add in 4 to 6 months chemo they said last time which they said also means no holidays until all treatment over. But it is at least getting through to them how anxious I am. I am fine atm as ignorance is bliss so am opposite to a lot of people.

I am just going on holiday for a few days in Edinburgh (as they banned holidays thought would get one in quick and caught dh half asleep so he agreed), lovely city, and live in England. I am 48, thats the one good thing about cancer you suddenly become classed as young again.

The rabbit has always been indoors and very bouncy and lives with ds and the two are permanently glued to each other. The silkie has been moved in today, weather is fine here, well for mid winter but saw you have some terrible weather up there.

Ugh - cording after mastectomy and axillary clearance is driving me nuts. I do my exercises (and others Ive researched) religiously and yet I have cords in the lower arm. Yesterday morning (too damn early) the cat woke me up by jumping somewhere he shouldn't have and (not thinking) I waved my affected arm at him and must have finally broken some rather large cords in my upper arm as I now have bruises and its pretty tender in that area. Oh, and it hurt pretty bad too!

Ive got good range of motion in all but a few directions - PT can't get me in before Feb 17th, though. The literature all says this eventually goes away like in 4-6 months after surgery and I sure hope so.

Got quarterly scans (CT pelvis/chest and MRI full spine) today, which I don't mind so much other than the cannula bit for the CT. Its early appointments so at least that way Im in and out the door pretty quick. Hoping by the time I get home the postman will have delivered my new crafting wool!