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.
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I feel a bit miserable complaining about the wait for my lymph gland to be scanned, but it's not for another month.

It all seems so long winded, but considering you all experience delays and waits, I'm sure I can hold my horses.

@RobertSmithsLipstick Moan away, if anyone will understand then we will. It’s the absolute worst part of all of this. Once treatment starts then you get a rhythm to to it and the time goes quickly.

@RobertSmithsLipstick waiting is one of the hardest parts, I get you

I got the CT scan results on Monday evening and the MDT meeting decided I need a Whipples (duodenal GIST). They said asap whatever that means. I'm seeing the surgeon a week tomorrow.

I'm currently off work for two weeks with scleritis in my left eye, have had blood tests for rheumatoid arthritis, feel like I'm falling apart at the moment.

[quote Acinonyx2]**@TopOfTheCliff I've just been looking into this myself - there just doesn't seem to be any kind of organised follow-up . Awful to leave your scan results so long - even if they are fine. I think the medical impact of our anxiety is overlooked and underestimated.

I was advised to get in touch if I had any pain that 'kept me awake at night'. That's it going forward. I should think if it got to that point it might be a bit late.

There are all manner of marvellous blood tests being developed - but not for the very near future.

I don't think it's a new thing. I read somewhere that regular scans are not recommended because 'they don't improve survival rates' but I like to think that advise is thoroughly out of date.

I am compiling a major diet overhaul for the household. It can't hurt - and I need to feel I'm doing something and not just drifting.[/quote]
Absolutely agree, @Acinonyx2, with the statement re: psychological impact. I have started grappling with this after my active/physical treatment had finished last March. Absolute nightmare is a mild description of what I have been going through mentally for the past 9 months! And that’s despite going to Maggie’s for counselling and making use of Headspace app. I suffered my first head on anxiety/panic attack last week, what a horrendous experience (I used to suffer them for a period in my younger days, nothing to do with cancer). I had to finally open a pack of beta blockers I was prescribed by my GP, an wow, it made a difference within 20 minutes. For whatever reason I am just so resistant to any medication for my mental well-being, thinking I have to do all this mental repair myself.

I have found a new spot to obsess with - liver area. No symptoms other than I feel a mild niggle in the area maybe once every couple of days. Coupled with the repeat blood tests I had to do a month ago (all fine) because of “marginal” elevation of liver function I have been stalking my liver ever since. Looking down the loo every time I go to the loo (checking on urine and poo colour ), examining my face in the mirror for any signs of jaundice, weighing myself daily, etc. Absolutely awful but I just can’t let go.

I have the usual 6-monthly check up at the breast clinic tomorrow morning where I plan to quiz them over the repeated blood test and what exactly were those “marginally” elevated levels. No mammogram for me due to double mastectomy, so just a chat really. Although all I want them to do is to give me a full body scan. I feel just totally consumed by it all. No signs that something is wrong but inventing them. I feel so weak mentally, like I can’t even accept I am now OK. For however long that may be.

@TopOfTheCliff Waiting is the pits mentally - I am keeping my fingers crossed you get the mammogram results ASAP.

@MrsPnut Roll on radiotherapy! I hope you suffer minimal side effects.

@Acinonyx2 yep, the waiting is the absolute pits and I agree 100% that the mental impact is massive. @TopOfTheCliff I hope your not waiting for too much longer xx

Thanks folks for the sympathy. Today I rang back to the BCN team and apologised for hanging up on them in tears yesterday. One of the lovely nurses rang back and sorted everything out. The mammogram was back weeks ago !! and normal. The visit I had in June with the enlarged lymph node that they biopsied was counted as my post op surgical review but they never told me that. I will get annual follow up next year but they are all in total chaos overworked and struggling she told me and apologised for the lack of communications. I think I will send them a card and some cake to say thanks and keep going! They are having such a tough time in the NHS currently.
More good news: I went and got my fourth Covid vaccine at the Walk in Clinic. I took an oncology letter and my third dose card and a text message but the nurse swept me in straight away and it was all easy.
Also my DD got an amazing dream job she wasn't expecting to be offered and my DS had an excellent end of year review with £££ in his bonus! So I am back to my usual sunny optimism.

@balkanscot I sometimes catch myself drifting into a downward slide (Ooh my back hurts perhaps its a bony metastasis and yes my rib hurts too...) but I give myself a shake and block those thoughts and go turn out a cupboard or something. I can't live my life worrying about this stuff. Cheerful denial is the way to go here.

@RobertSmithsLipstick it sometimes helps to befriend the secretary who makes the bookings. If you let them know how anxious you are and can be available at short notice for a cancellation they may be able to fit you in sooner. But if they can't help (and heaven knows they are drowning in work) then distraction and keeping busy helps the time pass. We understand only too well how anxious it makes you. Best wishes xx

@Acinonyx2 I had a breast cancer marker test (for Ca15-5 I think) as a baseline but they only measure it again if they think you have secondaries not as a screening test. I don't think it's very well understood yet. It all seems a bit random.

Best wishes to all. I'm going to have a day off tomorrow to celebrate my results. No cycling or gym sessions just coffee and a tiny sliver of cake!
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@MissSmiley sorry I forgot to add this to my message. When will you know the date for your Whipples operation? I know it’s a big op and only done in major centres with ITU back up. I guess you will be top priority in the current Covid situation but it’s still nerve wracking. Sending best wishes xx

Hope everyone had a good weekend, it was grey and foggy here so we didn’t venture too far (did go to the pub on Saturday afternoon though - the dogs wanted some crisps).
Of course now every is back at work and school the weather was glorious today.

I heard from the patient safety advisor who is investigating my complaint and though the nurse and her manager are denying everything, the company have discovered that a log of actions on the infusion pump can be downloaded and so the nurse’s pump had been collected and is on it’s way to the manufacturer to be done. I am so hoping it works because it has made me so cross that they are lying about what happened.
They were also being reinterviewed last week because I pointed out some discrepancies in the interim report I was sent.

That sounds like a positive move @MrsPnut. The worst kind of medical disaster is one where nobody will acknowledge it and tries to cover up what happened. It just compounds the initial injury with layers of resentment and rage. In my experience as a GP when I messed up the best thing to do was acknowledge my mistake with a humble apology and try to put things right. Admittedly my mistakes were more administrative like forgetting to send off an X-ray form or getting a sick note wrong, nothing on the scale you have been through!

Sending greetings to all. I was worried I had killed the thread
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[quote TopOfTheCliff]@MissSmiley sorry I forgot to add this to my message. When will you know the date for your Whipples operation? I know it’s a big op and only done in major centres with ITU back up. I guess you will be top priority in the current Covid situation but it’s still nerve wracking. Sending best wishes xx[/quote]
Thanks for asking @TopOfTheCliff
My head is absolutely mashed, I think I might be about to have an actual breakdown, it's all starting to sink in, I'm not sleeping, my worse nightmare now is that the surgery will be delayed because of Covid and I'll be in this dreadful limbo for months, I have no idea what the plan is, people keep telling me horror stories about how I may never work again, how painful the surgery and recovery is, and I have five kids at home and my mum next door but one with Parkinson’s to look after. What hit home the most is that I have no one who I can reasonably ask to be here with me after surgery, I chose to be single five years ago, I left my husband after 20 years and I'm happy with that decision but I feel really vulnerable right now. It's a complete disaster and that's even without thinking about the cancer

@MissSmiley you have an amazing amount to cope with, massive congratulations for just putting one foot in front of the other every day.

MissSmiley

Can I put in an oasis day in cancerland?
Yesterday started out grim with me having two appointments, one to get bloods taken and one to choose a wig. Neither terrible, but not normal life things. And I am so tired it seemed a massive effort.
The wig appointment got changed to not long after bloods so after walking to Drs I realised I was a chunk of the way to wigs so walked it gently in the half hour I had. Some of my walk was by a river which was lovely.
Then realised wigs were right near the Botanic Gardens so I could walk through them to get home. Lovely sunny, mild day. Peaceful and snowdrops coming out. From Botanics, my local park is over the road so could carry on walking gently and go round the pond before the final 10 mins to get home.
Got a load of vit D and just felt ‘normal’ (even tho was carrying wig ina bag!)
Has set me up for tomorrow, which will be chemo round 2 bloods permitting. (Had 2 fairly heavy nosebleeds once home yesterday).
Funny how the little things become so important.

@Podgedodge I'm with you. It was a foggy morning today in beautiful Northumberland (fog on the Tyne and all that) and as I was driving the school run the sun came up and everything turned an atmospheric pink. It was truly beautiful and I took a moment to really appreciate it, before joining back in with my daughter's enthusiastic signing of the songs from Frozen.

@Podgedodge I’m with you too. Collected my wig from lovely lovely hospital lady and went for a walk with dh at our local nt place. Beautiful driving through the sunlight and watching melting frost in the hedgerows.
These moments help. 🌺🌺all

@Podgedodge are we allowed to know what the wig looks like? Are you vaguely pleased with it?

I had a slightly more positive day today, it's been decided that because my case is quite unusual (very rare) we're going to ask for a second opinion from one of the big specialist sarcoma centres, Birmingham or The Marsden, I won't need to go, they'll just discuss my case at the correct MDT meeting. Hopefully then I'll feel more confident about the surgery. I can't get my head around being well at the moment and essentially "choosing" to have surgery that will completely fuck up my digestive process, meaning I will never be able to eat normally again and could mean I never work again because of malnutrition and fatigue. The only alternative is long term drug treatment that'll mean having the surgery further down the line IF it works but obviously there's a risk the cancer won't respond and might spread/grow meaning it'll become inoperable, just typing that makes me realise I have no choice really than to have the surgery now.
I've have taken diazepam (only 2mg a day) the last couple of days (I had some left over after a bad back from ages ago) it has at least meant I have slept but I hate that I have resorted to flipping Valium to cope ffs

I love the cold frosty days they are so beautiful.
@MissSmiley at the moment you just have to do whatever it takes to get through each day hour by hour. If Valium helps then use it!
I learned to take all the drugs for nausea, pain, allergies, constipation, diarrhoea, you name it I had stuff in my medicine cupboard for it.
Now I am trying to come to some sort of balance with my new broken body that will allow me to function.
Did anybody hear John on Radio 4 The Diagnosis this morning? He talked about his treatment for cancer of the penis. I sat and cried listening because it was so truthful and hard to bear, hearing my reality spoken aloud. Okay not the penis bits but the rest of it! My DH got a glimpse of my reality too, he was very moved. Worth a catch up on BBC Sounds.
Best wishes to all xx Top

Yes I heard John (Room 5, 9am radio 4) talking about the first symptom he noticed while at Peppa pig world.
He spoke so movingly top.
Did you hear the young lady last week, not cancer but a long time to get a diagnostic.

MissSmiley So sorry to hear you have been feeling so low, very understandable and sending you hugs. I also felt really low after my results appointment, which went in said I was anxious and they said DH still could not come, then gave me bad results, treatment plan lengthened 6 months and said to cancel my holiday which was the one thing I had to look forward to in 2022 and vital to my 2 kids, one of whom is mute apart from holidays and also the worst treatment part is over DDs GCSEs.

I found it quite hard to get any psychological help, GP was useless and also they took 4.5 months before referred and now I find it hard to deal with them but in a village so its the only option. I do at least have further surgery booked for tomorrow for lymph node removal, it was cancelled at the NHS hospital but I was very lucky they moved me to private on NHS and tomorrow. After that a few weeks wait for further results. I did get some psychological help from Samaritans (did not know much but just having someone answer esp as a volunteer was a start), Macmillan took a call and also second time I phoned 111 option 2 someone answered after 30 mins, no-one answered first call but it is worth holding on as they were good and could get me a further call that night. I can also apparently self-refer for counselling though maybe 6 week wait via NHS psychological well-being service. What I did found helped in the end was just taking it one day at a time, one problem at a time. If you find meds help MissSmiley use them. I do not know if I will work after either but if you can get financial side sorted then its finding other things and with 5 kids there should always be something, I only have 2 and 4 pets and there is always something and can work on house. Macmillan can give advice on financial side. I am lucky I saved a lot before. And its not inevitable won't work, just see how things go and do one issue at a time.

Hospital said I would only get a call today if covid positive and they don't say if covid negative. I have had 2 calls today and 2 near heart attacks but thankfully just going through another covid questionnaire for past 2 days and second one was reminding me could have excess fluid incase I had forgotten since Dec operation. Thankfully the second nurse did look up my covid test and confirmed was negative. Thought it would be as have been isolating but two kids in secondary, am isolating from them but also medical appointments and did dentist on Saturday. He was the loveliest dentist ever, had to go private but so kind, wish I could take him to all my treatments. He seemed to work on the basis I would be anxious about everything which is a good starting point with me.

Chemo cycle 2 starts tomorrow. Simultaneously delighted and dreading it. Cycle 1 has got rid of loads of ascites and, up until the last two or three days, left me feeling better than pre-diagnosis. The price of that was a BRUTAL first week (day 3-7, anyway) and I’m dreading going through that again. It’ll be easier this time, knowing it has an end date.
I still have some hair, though I chopped the length off early on, but it’s coming out in handfuls from a scalp that feels sunburnt -doubly annoying in a distinctly manky UK January when I haven’t even really been outdoors. I have decided against a wig so have a wardrobe of headcovers on standby. I may have to invest in a long cigarette holder to carry off some of the more ‘1930s dowager duchess’ turbans.

@Silkieschickens thank you for your lovely message, I'm feeling better today, I think I've come to terms with it and I'm ready to see the surgeon on Tuesday and do it asap

In real life I'm super positive, it's just you lit that have to hear my doubts and worries.

@MrsWooster good luck for round 2

@TopOfTheCliff thank you for your kind words, haven't actually felt the need for anything today, I put my contact lenses back in after two weeks in glasses while my scleritis was treated, I feel much more "me" (even though they told me not to wear them for 6 more weeks!!! What??)

I love you all, you're all so amazing

@Silkieschickens I just read your post. Sorry to hear it was bad news and your treatment plan has changed. It is seemingly endless crap while you are going through the mill and not having DH with you must have been hard.

I am in wilful denial today. I sat down last night with a cup of coffee after a lovely day out socialising and running errands, no energetic stuff, and had five minutes of fast heart palpitations. By the time I found a pulse monitor it was gone. My DPs and both my DBs have Atrial fibrillation so I am pretty sure it was that. I really don’t want this right now. I didn’t feel faint and ran upstairs to find a stethoscope so it wasn’t compromising me but fuck fuck fuck I really don’t want this. I’ll avoid coffee and see what happens next.

Thinking of you @MrsWooster. May the day pass smoothly xx
Love to all
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@Silkieschickens sorry to read your update and that you’ve had to cancel your holiday. It’s bloody rubbish isn’t it? Hope your surgery goes well, thinking of you x

@TopoftheCliff

Re the palpitations, it might just be a one off, or too much coffee.
I suffer from paroxsymal AF and when it starts I usually have a cough and it stops! Worth a try if it happens again.

Hi everyone, I'm worried about who will look after me after surgery when I come home, I think I'll need help for a couple of weeks just to get up and shower etc, what happens when you're single?