Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

@Nonotmenori work, me? Haven't done that for years! Before I had surgery, I was given a booklet of information which included a "trajectory of recovery", which suggested I'd be more or less back to normal after six weeks. I wasn't! And I started chemo before the six weeks were up, anyway. But I could drive . . I don't think I had loads of energy, and I certainly wasn't strong.

@DaisyBD - I'm now 14 sessions through my external rads (pelvic area), and have had virtually no side effects. Certainly nothing noticeable on the skin. I'm surprised at how well it's all going. I don't know what the recommendations are as regards swimming, but it doesn't necessarily follow that you will have burns or skin problems - they always give out the worst case scenario. I'm sure, for as long as you don't have any irritation, that you could continue, particularly as it sounds so important for your well-being, but do be guided by the experts.

Had my weekly meeting with the clinical nurse specialist, and she gave me a gift - a set of vaginal dilators. Apparently pelvic radiotherapy, particularly the internal sort, threatens to seal everything up. Oh, happy days.

@Nonotmenori - I've been eating loads since diagnosis, but I definitely comfort-eat, and haven't been denying myself much. Maybe your body is trying to tell you something? Just go with it, eat what you want.

Cointreau
I had no burning or anything on my skin, the horrible side effects were all 'down below'- damaged nerves, burnng urination and painful lumps on my vulva. all of which appeared after the 4 weeks and worsened after the sessions ended. The rads were specifically aimed at my bladder as that is were the cancer was or possibly still is.
I have another appt now for 4th Feb after the December one was cancelled yet again to be dug around in there under GA to see the results of the rads. Just hope my damaged nerves are not resurrected by it.
Are you on steroids?

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@digerd - that sounds horrible, i'm so sorry. I hope the appt on 4 feb goes ok.

@CointreauVersial it's great that you haven't got many side effects yet. I must admit I'm very apprehensive about how it will go. If I can carry on swimming for a little while at least I'm sure I'll feel better both mentally and physically. I've heard so many conflicting reports about radiotherapy - from it being completely fine and working full time all the way through to it being terrible with awful side effects, bone crushing tiredness and months to recover.

Sometimes it feels like having cancer is a full time job on its own.

Well my appointment yesterday was as good as useless! Bloods taken (stabbed 3 times to actually get some out).
Then saw Dr. Does anyone see the same oncologist/dr each time? This is the 4th one never seen the same one twice. He didn’t even introduce himself. The last one said they will probably lower dose of chemo as don’t want permanent damage to nerves in hands (can’t remeber official name of it) this one didn’t show any interest about hands said wouldn’t be lowering dose. Didn’t care about any side effects. Said it was working a bit. Was in an out within 5 minutes.
Just hate hearing different things from different people.

@DaisyBD it really is like a full time job. One of my friends who had breast cancer about 10 years ago now said you just need to give your life over to drs for 6 months (or however long treatment is) for appointments and then get your life back after.

@Nonotmenori I have been eating so much. Want to think it’s the steroids but I’m only on them for 4 days out of a three week cycle so things I’m just being a pig 🤣🤣

@DaisyBD Your cancer was in the lower back/arse area? Sounds awful and not heard of that- was/is it rectal/colon cancer? Sitting must be agony for you.
But I think it is of utmost importance that you do not put your arse area in contact with public swimming pools due to danger of infection in the water. Other people's/ children's urine for one.
Your oncologiists should know what other forms of exercise are suitable in your particular case.
I have lower back pain/.sciatica/slipped discs and know how soul destroying it is to be in agony on bending and how depressing it is too.
The Radiotherapy will be different for everyone depending on where , type and stage.
Good luck.

Good to hear that you are progressing well with the rads with no side effects so far, Cointreau. My rads side effects didn't start until half way through, although I had the (simultaneous) chemo horrors from the start. I tried to be thankful that I'd got half way through unscathed.
I have the dilators, and use them twice a week as requested. There are four sizes and I can only use up to the second one, but my consultant says that's ok. It's not fun, but it's doable.
I'm sorry to hear that you don't get to see the same oncologist Squiffy, it can't help and you won't be able to build up a relationship of trust. I see the same consultant at each appointment.
Daisy, I had no skin problems at all. I couldn't exercise during my treatment, but started a walking regime as soon as it was finished and could walk for 1.5 hours at a good pace after three weeks, which is when I went back to work. I can't help with the swimming unfortunately as it wasn't something I felt like doing.

Squiffy seeing a different oncologist every time sounds far from ideal. It would be bad enough if they were saying the same thing but when they are giving contradictory information that really does not help.

I had my chemo cut from 12 weekly sessions to 9 because neuropathy was starting. I was only having chemo though because I needed Herceptin and that is only licenced for use after chemo so that may have affected their decision.

@digerd i’ve got sarcoma - high-grade myxoinflammatory fibroblastic sarcoma to give it its full title - which presented as a lump in the connective tissue near my spine. unfortunately it had spread into the muscles and also the bone so they couldn’t get a good margin. i start radiotherapy on friday. the surgical wound has pretty much healed but there is a weird old dent in my back and arse. i usually do quite a lot of exercise including swimming three times a week and i’m finding it so hard to have had to cut back, especially now i’m feeling better after the operation. it sounds stupid but it’s really upsetting me

Well, what I'm learning on this journey is that everyone is different. Digerd - I'll try not to be too complacent as regards radiotherapy side effects, because they may be waiting around the corner. Or not! But I am chuffed to be over half way through, at least.

Oh Squiffy - I really hate it when you get conflicting views from a succession of seemingly unconnected medics. Presumably they are all part of the same oncology team?

@CointreauVersial I assume they are all part of the same team? Who would know!!

Anybody know general rules on cancelling chemo do they only do it if you are properly sick? I have got a sore throat and hoping it doesn’t turn into anything worse before Friday. They wouldn’t cancel for a sore throat would they?

I have had two sessions cancelled . One when I was proper poorly with raging chest infection and had been in A&E on the previous Saturday and the second when I knew I was brewing a UTI and although the tests came back ok the Dr was not willing to risk chemo that week . He said I obviously knew my body and put me on antibiotics again . ( 7th lot since August ! )
However ... I am having 12 sessions of paclitaxel and Herceptin .
The Herceptin is only licensed for use with chemo and the oncologist was happy enough to skip 2 sessions . I have heard of people finishing early because of side effects .
I must admit I dithered about mentioning the UTI but was glad I did . The Dr said that he did not want it to run amok !

Thanks @Trumpton it must be so frustrating to have them cancelled.
I will mention it on Friday. I’m sure they will go ahead as it hasn’t turned into anything but I just worry.

@Squiffy01 I had chemo at least once when I had a sore throat. They put me in a room on my own.

@Squiffy01
How did it go yesterday ?
Chemo #10 was fine . I really seem to have got away fairly lightly but it’s becoming a bit of a slog now .
We are taking MIL (96) out for coffee this morning and I have. Friend coming this afternoon . Saturdays are generally good for me but two things in a day might be pushing it !

Daisy How did your1st rad go yesterday? How many will you be having?
Cointreau Well done for reaching the halfway mark with your rads. There was another poster on here who had no problems at all with her pelvic external rads.

I had the same oncologist but only saw her to sign the agreement beforehand and after the 6.5 weeks. I have an appt with her later this month after my op now on 4th if that doesn't get cancelled yet again

New here but lurking.Went to my GP in December,My bowels had changed from daily to weekly.To get thing moving I tried massage and found a lump lower right side Quick referral,quick follow up CT scan.I have no other bowel symptoms,feel well,have lost weight intentionally(confirmed by Xmas increase).
It is over 3 weeks since the CT.
I have spoken to a college who works in the colorectal dept,since speaking to the the consultants secretary who tells me a letter to me hasn't even been written yet.College has got someone who can give me the info to call me on Monday but herself can only say that I have been referred to gynae and an MRI booked.
I have been seeing gynae for bleeding(which I thought mostly resolved), had an ultrasound 14 months ago which just showed fibroids/polyps in my uterus,ovaries clear had X3 hysteroscopys ,all sorted ,all clear.Follow up due in May.
Now ,I did suspect this was gynae but I'm a bit alarmed my the MRI since that indicates

Something sinister and I'm guessing ovary and spread(just ovary would be clear on CT+contrast).
What do I need to ask when I get the phone call.Im sort of ready for the news but the worry has been replaced by a numbness.What do I really need to know,be prepared for.
I've been looking on here since this started and feel it is full of understanding people who will get where I am.Thanks for reading.

@digerd first treatment was fine, think the hardest thing will be commuting up to the marsden in chelsea every day. i live in west sussex and it's a good three hours each way, if everything goes well with public transport that is. i'm hoping to carry on working around it, at least for a bit, but the time involved makes it difficult. i've got 30 treatments, last one is 5 march which seems ages away. the good thing is that i can carry on swimming, yay, as long as my skin is ok and i feel alright.

@TheHagOnTheHill sorry about what's going on with you - i'm afraid i don't have any answers but i know the waiting is horrible. it seems to be common here that you feel better once you have a diagnosis, even if the diagnosis is not what you want. certainly for me the worst bit was before i was diagnosed.

Hello TheHag, and welcome.
Many of us here will agree that the waiting for the diagnosis is the worst time. I really hope that you don't get the news you fear, but if you do there will be a plan and there will be treatment. At the moment all of the undefined fears will be flying around your head, and it's horrible.
Hold out until tomorrow, and keep posting here x.

Blimey, @DaisyBD - weren't there any closer hospitals they could refer you to?! I'm going to East Surrey Hospital, which is almost in Sussex; they also gave me the choice of Royal Surrey (Guildford) or The Marsden. My commute is only 25 minutes, and I thought that was plenty long enough! Glad your first treatment went well; you'll soon get into a routine, but boy that's a long way to go.

Wow @DaisyBD! Mine is 50 minutes but I (well my dh most of the time) drive so it's not too bad. My nearest hospital is a 5 minute walk from me but they lost their cancer unit in 2018. 3 hours is a nightmare. Wishing you luck x
@TheHagOnTheHill just echoing sentiments, the wait is the worst part. Keep busy, it will occupy you and help stop your mind running over all scenarios. It does feel better (at least for me) even when it's not a diagnosis I want. All the best xx

DaisyBD regarding your travelling time to your rads hospital. Mine was 30 minutes when DD took me there and back but up to 2 hours with the hospital transport in the rush hour to north London. As the furthest away I was always the first to be picked up at 8am and the last to be dropped off back home sometimes at 2pm.but it was free so very welcome. and always had company to chat with.

there's been no mention of any hospital transport - I didn't even know that was a thing. They did say I could have treatment under their supervision in a closer hospital but they offered me bournemouth, southampton or brighton but they weren't keen on brighton, which is the nearest, and it takes 1h15 to get there and usually another 30 minutes to park there. The others are even further away - bournemouth is at least two hours. My parents live in south west london so i'm planning to stay with them part of the time. One of the problems is that the marsden (the chelsea branch) has absolutely no parking. I could drive all the way there but then I'd have to find somewhere to park in the very strictly enforced residents only parking area, and it would only save about half an hour anyway. i'll see how it goes. My lovely boss has offered to pay for a taxi both ways from my parents every day but I'll see how I get on with public transport for now.

I did get the impression that they weren't keen for another hospital to do the treatment, and the marsden has been the first hospital to seem to know what they're doing and I just feel safer with them. There are hardly any sarcoma specialist units anywhere - my most local hospital wouldn't even do a biopsy, and brighton which did do it were useless so I didn't really want to go there anyway.

Second treatment today, it's at 12.40 so I'll be leaving here in about half an hour

Daisy. Just popping in to agree with everyone that the distance and travelling time you are facing is horrendous. How lovely of your boss to offer a taxi. As the treatment progresses you may find that the tiredness builds up to the point that you may need to take up that offer. I only had 18 sessions in a centre just half an hour away from home but towards the end of the treatment period O found that I was too wiped out to do anything much else on treatment days.

Not around much at the moment but best wishes to everyone especially those waiting for results or treatment plans.

Thank you for those replying.
I now have my MRI appointment.
Still no letter or word as to why from my consultant.If I didn't have a college in the right department I would know nothing.
Feeling unaccountably weepy.
I'm going to give the team time to contact me and if I haven't heard will not be fobbed of by the secretary this afternoon.
That's better, I'm feeling cross now.