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  1. cancer and sex sorry if i make anyone cry not intended

    1515238723
    Fun Louise [sign in to see picture]
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    Hi me me me me I have not had cancer but as a Health Care Assistant working on a cancer ward I have seen quite a lot. I have cared for many people with brain tumours and sex is something that is nervously broached by some patients.

    Ok so this is just my opinion, and has no medical basis, just my experience.

    There are a lot of sexy things you can do and enjoy without full sex, but I wouldn't rule out penatrative sex. Intimacy is important and sexy massage by you on him might be a good place to start. He might be able to pleasure you with oral sex, in a less strenuousle way. Or with the aide of toys, penatratively for you, or maybe something like a tenga flip hole for him. The tenga fliphole can be used on a flaccid penis to assist him gaining an erection and enjoying the feelings of masterbation. My OH loves me to masterbate him and give him blowjobs. Both are less strenuousle on him but still really pleasure ful.

    Talk to him, it's tough, and really hard, but you need to. Rather than saying your not sure you should be having full sex because of how tiring it is for him, try the "would you like to try something different with me? " aproach. When he says what do you mean, then you can suggest the use of a toy or oral sex. Something different but will still feel good for him as well as you. He might feel that he has to have sex with you to please you no matter how tiring it is for him, this way you can show him there are far more ways to pleasure eachother.

    Working together is the only way, and hopefully these suggestions might help.

    1515240419
    LadySpider [sign in to see picture]
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    Hey me me

    So glad so many lovely people are offering you support and advice, and that it's helping.

    Sounds like you need a social worker or OT, my love; phone your local adult social services and ask to speak to the duty social worker or OT - they can offer so much, just advice on things like what benefits you are entitiled to... things like direct payments which could be used to get a helper to take your hubby to appointments, or to pay for childcare so you can go with him, the social worker can also get your children into nursery/daycare cheaper or even free (depending on the area you live) and adaptions/aids they can give you to help. They are there to keep you fit and well as well as help your hubby - the last thing they want if for both of you to get ill or hurt so they have you both to care for.

    We were in a similar situation - no family close enough who were able to offer much help - our kids were older though (17, 14 and 10). One bit of advice.... sod the housework!!! Really, my love, bugger it!! As long as it's clean in the kitchen and bathroom, the rest can wait and honestly, tidy doesn't matter! Don't put yourself under needless pressure to do it all. You have a sick husband and baby's to look after, the housework can wait! Those kinds of pressure won't help when it come's to issues with you getting out and about either.

    I understand now that you can't be spontaneous - so have planned sex. When he is over the 2 week period of not being able...plan a date night. If you can't go out...date at home. Get the baby's in bed, then dress up for him again...I'm sure he'd love it. Choose your time, when he's not too tired (sex can be horny when tired too though!) It's so difficult with such young kids though, they won't stay in bed, or keep crying for you... no easy answer there for you.

    Masturbation may be the main outlet for you at the moment - but things with hubby will get better I'm sure. Maybe masturbate beside him in bed... he may join in - ask him how he feels about that - tell him you need to do it so you can review a toy!.

    Try making him some smoothies with super foods in to help with fatigue and energy levels - I make them with soya milk, greek yogurt, banana, Kale, spinach, broccoli blueberries, ground flax seeds, and frozen mixed soft fruits like strawberry, raspberry, and blackcurrants. I also add Blackstrap Molasses to banana's on toast for an energy boost.

    Right...shall address your list of symptoms he's getting as they are so very similar to mine and I can help with a few suggestions.

    symptoms semantic memory not being able to describe and give meaning to our world. For example, naming a city or describing what a cat is. There is a program which is a professional tool that helps assess and improve access to our vocabulary, the more we use our neural circuit - the stronger it gets. It's full of interactive exercises and brain games to play online, after the session it provides a graph with the user’s cognitive progression. https://www.cognifit.com/

    episodic memory not remembering specific events and experiences you have lived through such as what happened at a relative's birthday. Start a diary or journal - before bed spends 15 mins writing down your day, what you did, where you went, who with - be sure to write down day and date at top of each page. This will help train the episodic memory part of the brain. The next morning read what you've written, and maybe the entries of a few other days as repetition help strengthen the memory

    retrograde amnesia Loss of memories formed before you had a brain tumour or treatment. This kind of memory loss is down to damage done to the memory storage area's of the brain, it may or may not get better and can get worse. I don't think there is anything you can do about it - I don't remember anything after going to bed the night of my brain injury until I woke up in intensive care 3 weeks later.

    anterograde amnesia Difficulty remembering memories formed after you had a brain tumour or treatment. Vitamin B1 can help - if there is a deficiency. Occupational therapy if it's offered in your area, I had some at a stroke hospital - we played all kinds of memory games like 'go fish' and posting items in a box then seeing how many I could remember. That's kids game 'I went to the shop and bought a...' then each person adds a new item to the list.... memory training games you can play online, using phone apps such as diary's as memory prompts or again, keeping a daily diary. I still can't remember stuff after 10 years - tell me today about an appointment I have tomorrow - I will be forgotten by tomorrow. Or I do somthing like go to my daughters and we go to the shops - the next day the memory can be almost gone! So a diary helps - I keep an art journal, also take lots of photos, upload to the computer and label them!!

    Dysphasia you forget the beginning of what has been said having difficulty understanding if there is background noise or several people speaking at once Also a huge problem for me. I tend to avoid situations that put me in this position. At group meetings, we have a rule that during group discussions only one person speaks at a time. This is mainly caused by poor concentration skills. If the TV is on here in one room, and music in another and I can hear both I go to pieces and want to rage!! So avoidance is the key. when we go shopping - especially to shopping centers, I tend to wear headphones, my Dre's block out all outside noise - it's the only way I can cope with sensory overstimulation. Mr.Spider tells me something - say and instruction of something he needs me to do, he has to make it as simple as possible, because if it's a long detailed explanation, I will forget most of what's been said. So, writing stuff down in numbered lists helps there. I also never go to appointments alone because I forget and become unable to understand what is being told or asked of me. I'm not stupid, but so many people judge me as stupid or thick because of this problem!! It's one of my most hated aspects of my brain injury

    being able to describe an object, but not name it Damn - I HATE that so much!! It can come across as cute or funny when you have to describe something rather than name it...so embarrassing if it happens in a shop and you get an impatient assistant!! Again - memory training games help - but not much - after 10 years I'm still like this most of the time. I have even sent MrSpider out shopping with a list full of drawn items cause I can't remember what they are called!! Concentration skills need improving, stuff like soduco, word searces and cross words sometimes helps with this.

    cognitive impairment Thinking speed may be slower, making it more difficult to keep up with conversations Reaction times may be slower Yup - my thinking speed - especially when it comes to decision making - people around him just have to learn to be more patient and understanding.... this does improve, he needs to help his brain build lots of new neuro-pathways by doing lots of different things....sticking to the same 'safe' day to day activities won't help...he needs to vary his days greatly. Game playing on xbox or similar can help believe it or not.

    Vision and perception I still have huge problems here - I have no depth perception so steps are dangerous as I don't see them as steps - everything look level to me so I could either step or wheel my chair over and hurt myself. I can try and put a mug on the table and miss as the floor looks level with the table. Lots of concentration needed here - I put my hand on the table near where I want to put something down, then I don't miss the surface. I also see things/ interpret wrongly all the time... again, poor concentration most of the time... and looking and watching things properly, not just 'skimming' as he probably did before the injury. Tiredness makes it worse.

    Difficulties recognising objects, people, words or sounds, such as recognising a pen on a cluttered desk Again this can be put down to poor concentration skills. We used to put several items on a table, let me look and memorize the objects, cover them, then see how many I could remember. then the same again, but MrSpider would remove one item and I had to say what was missing.

    Hope some of that helps a bit, Cariad. The Cognifit programs basic free features will help so very much - but if you can afford to buy the premium features it's better - not essential though. But its amazing how much that program helps with so many aspects of memory and concentration issues.

    1515242833
    Laveila [sign in to see picture]
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    me me me me:

    Thanks. I guess I get some idea how it feels seeing someone you care for get better, than worse. II had the infection coming back, and even had to have a surgery and I can understand how stressful it is not just for me, but also for the people round me. And its not a cancer, which makes it even worse!

    My friend was really down and really worried, and admited he does not even have a mood to masturbate alone, because he just is scared about me going through this. It is hard for the partner too. And it is hard for him too, because you have to believe you can beat it!

    I find that just hugs and kisses and cuddling made me feel bit better, even when not together, but discussin what we would do, if we could (I am staying at my parents atm, because I had no space orientation to start with). And it seems it is better than sex, which I seem to have no mood for.

    Also since I was soo scared at times, I actually even when just trying to masturbate, I had to keep thinking about things, which can go wrong - not helping your sex drive at all. And it is something that can be happening to you too?

    I would just focus on the present and try not to think about the future too much and do not. Maybe just enjoy hugs and some kisses when you are low?

    Fingers crossed things get better for you soon.

    1515254873
    me me me me [sign in to see picture]
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    Thank you all for being so kind i didn't fully go in to detail with everything as there's quiet alot to mention but some thing's may sound worse than what they are he's is fully able to do things but then they make him tired in the long run both our little ones are in nursery 3days a week we both do the school trips with kids all being at different places but these trips do make him tired he tends to spend most his time playing pc games and a little light work here and there when i need help the main reason i posted on here was for advise bedroom wise i do mastibate alot and by his side in bed take me back a year or two this wouldn't have been something i was comfortable to do but now i am he joins in when he's not to tired out if he hasn't had to go to bed early he does use toys on me but even this can be too tiring at times we do play with each other or he plays with just me if he lacks the energy or i give him a bj here and there but all the advise has been great love the oral idea but he's not into it so whats off the cards we do cuddly alot we are always cuddling and kissing and i do enjoy these moments my main concern was the after affect sex has on him he tells me it's worth it but for me it's hard seeing him so tired drained from something we both enjoy to bring him down the next day so much i guess im just overworrying and most likey doing as much as i can i do talk to him we don't keep anything from each other he fully knows im on here asking advice and he's truely thankful for the advice and support given i've shared this thread with him

    and your advice has been brilliant Ladyspider things such as the smoothes may trully help im not great with foods so knowing a little more on what will help his energy levels is a great start we've had advice benifit wise not really much else can be done for us in that department and he has free transport to and from hospital sorted out im also a carer for my eldest child

    1515255167
    Mr Pheebs [sign in to see picture]
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    me me me me wrote:

    Mr Pheebs wrote:

    Hi Me x 4, added you as a friend please accept if you’re comfortable too.

    Im a health care professional and I work with people with life threatening and life limiting illnesses. I’m guessing your husband has been diagnosed with Glioblastoma?

    Please don’t let my words frighten you but I think you need to ask your husband to be referred to your local hospice. Your husband, you, your kids and the rest of the family need support right now and although hospices have a stigma that people go there to die attached to them, this is a tiny tip of a huge iceberg, most of the work they do is about supporting people and their families at home.

    Your husband can receive very specialist advice about cancer and cancer medication related advice and specialist medication ad ice, also counselling and other psycho social services. You can ask for advise on intimacy and sex, there will be a professional there for this.

    When a younger couple is threatened, I often see the unaffected person experience a massive increase in sexual appetite with confusion and guilt for feeling this way, believe me this is totally normal. I believe it’s a species survival instinct (baby booms during and after wars are common).

    Try to remember, he’s not finding sex difficult because he no longer loves you or because you are no longer attractive to him, cancer related fatigue is totally overwhelming, as is trying to get to grips with like as and mourning of a life without these problems.

    I wish there was an option for private messaging as I could help you more but yes, be honest with the Dr you are asking for a referral from and get referred to a hospice.

    Also there is really great advice on sex and intimacy and loads of other stuff on the Macmillan U.K. website. My heart and thoughts go out to you all X

    Thanks Mr Pheebs my hubby isn't in a critcal state at the moment hopefuly he won't be he has

    Anaplastic Gemistocytic Astrocytoma grade III

    symptoms semantic memory not being able to describe and give meaning to our world. For example, naming a city or describing what a cat is. episodic memory not remembering specific events and experiences you have lived through such as what happened at a relative's birthday. retrograde amnesia Loss of memories formed before you had a brain tumour or treatment. anterograde amnesia Difficulty remembering memories formed after you had a brain tumour or treatment. Dysphasia you forget the beginning of what has been said having difficulty understanding if there is background noise or several people speaking at once being able to describe an object, but not name it cognitive impairment Thinking speed may be slower, making it more difficult to keep up with conversations Reaction times may be slower Vision and perception Difficulties recognising objects, people, words or sounds, such as recognising a pen on a cluttered desk

    You can still access the hospice.

    I know that the NHS and Clinical consortium groups outsource to hospices for specialist psycho social input. People that do not have a palliative diagnosis access them regularaly and are then discharged. They do this because this area is so specialised, it wouldn’t make sense to build a service with the complexity involved in training etc when a service is already available. Problem is a lot of health care professionals that should be referring on aren’t aware of this.

    Just some info so you can make an informed decision. People are known to the hospice for years and years, not just the 1 year to 6 month palliative period X

    1515257443
    Knight1119 [sign in to see picture]
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    Hi, I recently made financial donations to Great Ormond Street, the British Heart Foundation & Fight for Sight, it really made me feel good to hopefully make a difference, & appreciate the terrible plights people have to go through, it’s heartbreaking.
    My thoughts are with you & your family.

    1515258264
    me me me me [sign in to see picture]
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    Mr Pheebs wrote:

    me me me me wrote:

    Mr Pheebs wrote:

    Hi Me x 4, added you as a friend please accept if you’re comfortable too.

    Im a health care professional and I work with people with life threatening and life limiting illnesses. I’m guessing your husband has been diagnosed with Glioblastoma?

    Please don’t let my words frighten you but I think you need to ask your husband to be referred to your local hospice. Your husband, you, your kids and the rest of the family need support right now and although hospices have a stigma that people go there to die attached to them, this is a tiny tip of a huge iceberg, most of the work they do is about supporting people and their families at home.

    Your husband can receive very specialist advice about cancer and cancer medication related advice and specialist medication ad ice, also counselling and other psycho social services. You can ask for advise on intimacy and sex, there will be a professional there for this.

    When a younger couple is threatened, I often see the unaffected person experience a massive increase in sexual appetite with confusion and guilt for feeling this way, believe me this is totally normal. I believe it’s a species survival instinct (baby booms during and after wars are common).

    Try to remember, he’s not finding sex difficult because he no longer loves you or because you are no longer attractive to him, cancer related fatigue is totally overwhelming, as is trying to get to grips with like as and mourning of a life without these problems.

    I wish there was an option for private messaging as I could help you more but yes, be honest with the Dr you are asking for a referral from and get referred to a hospice.

    Also there is really great advice on sex and intimacy and loads of other stuff on the Macmillan U.K. website. My heart and thoughts go out to you all X

    Thanks Mr Pheebs my hubby isn't in a critcal state at the moment hopefuly he won't be he has

    Anaplastic Gemistocytic Astrocytoma grade III

    symptoms semantic memory not being able to describe and give meaning to our world. For example, naming a city or describing what a cat is. episodic memory not remembering specific events and experiences you have lived through such as what happened at a relative's birthday. retrograde amnesia Loss of memories formed before you had a brain tumour or treatment. anterograde amnesia Difficulty remembering memories formed after you had a brain tumour or treatment. Dysphasia you forget the beginning of what has been said having difficulty understanding if there is background noise or several people speaking at once being able to describe an object, but not name it cognitive impairment Thinking speed may be slower, making it more difficult to keep up with conversations Reaction times may be slower Vision and perception Difficulties recognising objects, people, words or sounds, such as recognising a pen on a cluttered desk

    You can still access the hospice.

    I know that the NHS and Clinical consortium groups outsource to hospices for specialist psycho social input. People that do not have a palliative diagnosis access them regularaly and are then discharged. They do this because this area is so specialised, it wouldn’t make sense to build a service with the complexity involved in training etc when a service is already available. Problem is a lot of health care professionals that should be referring on aren’t aware of this.

    Just some info so you can make an informed decision. People are known to the hospice for years and years, not just the 1 year to 6 month palliative period X

    Thank you Mr Pheebs i will look into it he's reading this thread as we speak thank you so much for your advice :) x

    1515259744
    me me me me [sign in to see picture]
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    Knight1119 wrote:

    Hi, I recently made financial donations to Great Ormond Street, the British Heart Foundation & Fight for Sight, it really made me feel good to hopefully make a difference, & appreciate the terrible plights people have to go through, it’s heartbreaking.
    My thoughts are with you & your family.

    lovely to hear we'll never know if or when we maybe in need in help from charities it really is heartbreaking that so many struggle and so many do rely on such surpport thank you for you kind words x

    1515260957
    Knight1119 [sign in to see picture]
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    Thank you me me me. You’re very welcome x

    1515435602
    me me me me [sign in to see picture]
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    YAY Good news for once!

    Results back today the 20% tumor that was left from the last surgery has significantly been reduced and all the puss/gel/stuff that the thing originally flooded his brain with has finally gone.

    So the PCV treatment of Chemotherapy may possibly be killing it off!

    The next MRI scan will be done after 3 more cycles of Chemotherapy (6 weeks x 3) so hoping by then it'll find nothing at all just the news we needed :)

    1515436287
    Fun Louise [sign in to see picture]
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    I hope the results are posative.

    1515440967
    Mr Pheebs [sign in to see picture]
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    me me me me wrote:

    YAY Good news for once!

    Results back today the 20% tumor that was left from the last surgery has significantly been reduced and all the puss/gel/stuff that the thing originally flooded his brain with has finally gone.

    So the PCV treatment of Chemotherapy may possibly be killing it off!

    The next MRI scan will be done after 3 more cycles of Chemotherapy (6 weeks x 3) so hoping by then it'll find nothing at all just the news we needed :)

    That’s fantastic me x4. Fingers crossed 🤞

    1515442690
    me me me me [sign in to see picture]
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    Mr Pheebs wrote:

    me me me me wrote:

    YAY Good news for once!

    Results back today the 20% tumor that was left from the last surgery has significantly been reduced and all the puss/gel/stuff that the thing originally flooded his brain with has finally gone.

    So the PCV treatment of Chemotherapy may possibly be killing it off!

    The next MRI scan will be done after 3 more cycles of Chemotherapy (6 weeks x 3) so hoping by then it'll find nothing at all just the news we needed :)

    That’s fantastic me x4. Fingers crossed 🤞

    Thanks not out the dark yet but it's a positive step a head im so happy for him

    1515442790
    me me me me [sign in to see picture]
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    Fun Louise wrote:

    I hope the results are posative.

    good so far im chuffed for him :)

    1515444920
    Knight1119 [sign in to see picture]
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    I really hope he’s ok :)

    1515446873
    me me me me [sign in to see picture]
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    Knight1119 wrote:

    I really hope he’s ok :)

    he's a little exhausted today with all the traveling about but worth the results such an improvment i was worried he seemed worse but that's me more settled knowing it's the treatments affects which are affecting him and not him getting worse :)

    1515448038
    Knight1119 [sign in to see picture]
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    That’s really good news. He’s very brave, it would so nice if they could find a chemo treatment that minimise s the after affects.
    Best wishes :)

    1515450747
    me me me me [sign in to see picture]
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    Knight1119 wrote:

    That’s really good news. He’s very brave, it would so nice if they could find a chemo treatment that minimise s the after affects.
    Best wishes :)

    Thanks Knight1119

    Yeah it sure would be hopefully things will continue to improve for him :)

    1515452989
    Knight1119 [sign in to see picture]
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    You’re welcome me me me me, fingers crossed :)

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