We Talk Brain Tumours

Pete

It sounds like you gave your Ali a wonderful send off.

My Sister is doing well, no more sickness except today she says she feels funny, that her head hurts, not a headache but almost like her hair is hurting. She has not lost any hair yet and shes wondering if it is that and that it will soon start to fall out.

I am having my hair cut next Saturday and i have so far managed to raise £470 which is so much more than I ever dreamed off and i have so many people promising to donate once they get paid. The support have been overwhelming.

Love to you all

TashaBtn -  Of course both mum and dad and no doubt you are incredibly worried.  Following RT (radiotherapy) there continues to be an effect on the brain around where the treatment occured, the brain tissue can continue to swell and because there is nowhere for it to swell to due to the solid skull structure it continues to cause a certain amount of pressure within the skull, symptoms can appear like tumour progression.  Scans are very difficult to read and sometimes the swelling around the tumour may make the tumour appear larger than it actually is.  Brain swelling can take many months to settle down so early scans after treatment aren't always that accurate.  Dad is also going to be anxious and that will probably make him a bit short tempered as well.  If the oncologist is continuing with chemotherapy which he clearly is then he must feel that there is a potential benefit for your dad, try to take the small positives that we are handed throughout this journey.  

Pete - was thinking about you, and kept an eye on the weather, glad you managed to get some sunshine even if very cold and that the service went well.  

Love to all 

Joanna xx

Hi TashaBtn

My hubby has a GBM IV and had an MRI scan on 7th November which they said is inconculsive too. We were told prior to the scan that MRI scans are notoriously unreliable for an accurate idea of what is going on with tumours - makes you wonder why they bother with them. Tony's consultant said he'd rather judge Tony's tumour by the external symptoms which are much more reliable. He explained that radiotherapy can knock the tumour around a bit which can make it look bigger, even if what has really happened is that it has changed shape and could potentially be smaller. I don't want to raise false hope but just wanted you to know what we have been told. Since the last scan they have given him a further cycle of chemo and are doing a second scan on Monday and he will get the results of this on Wednesday. Apparently, this is the only way they can tell conclusively if the radiotherapy has swollen it or if, in fact it is growing.

With regards to your Dad's temper. I have never associated Tony's tumour with his tantrums (of which there are many!). When Tony was first diagnosed in May his behaviour was horrendous and almost all of the negative feelings he was having were focused on me. He said some fairly horrible things and even, for a whole week, insisted that he was going to divorce me (we've been married for 27 years). He even sent out an email to all of his work colleagues announcing the end of our marriage - I was mortified! At the time I was completely unaware of what was going on, we didn't even know he had a tumour at that stage. I, like your Mum, was completely in the dark. We're obviously a lot further down the road now and I know a lot more of what is going on. The doctor eventually explained to me that his mood changes are much more likely to be due to his medication - at the time, he was on some seriously high doses of steroids. There are also the psychological and emotional factors involved with being seriously ill and the reality of discovering that you have a terminal illness. Unfortunately, it really is a case of hurting the ones you love the most. Fortunately, they do eventually get through that stage. Tony is much more consistent with his moods now, although we still do have the odd blip. You really do have to develop a bit of a thick skin and just keep reminding yourself that it's not him, it's the medicine.

If you pop over to the 'Carers Only' forum you will read stories from many carers whose partners have also experienced some negative personality changes and hardly any of them are brain tumour sufferers - so it really may be the medication. Maybe you should encourage your Mum to go on there. I felt very isolated, as my husband's full time carer, and got such love and support from everyone there. It really made a difference in the way that I now cope with some of the challenges associated with caring for my hubby. It's always good to know that you are not alone.

Love to everyone. Wishing everyone a peaceful day.

Pam

x

Hi Tasha.  Sorry to hear that you're going through such a difficult and stressful time right now.

I don't know if you've discussed this with your oncology team or not, but your father's moods might well be a combination of the tumour and the emotional trauma of dealing with a life limiting condition.

It might be an idea to ask if someone would be able to talk privately to your father about his feelings of his situation.

It really is awful not knowing the immediate future, so all we can really do is cope with the events of each day.

Somewhat miffed (not not at all surprised) that Sue Ryder's palliative care ended with Ali's passing.

Would have been nice to have even an attempt at some kind of after care for myself and the family.

Hopefully Macmillan are better at this.

well Pete from my experience - 6 weeks to the day you will get a phone call from your mac nurse....

Dear JMS, Pam and Pete, Thank you soo much for your replies. As you all know, this is such a dreadful and unpredictable train. 

My Dad was out walking with friends today (15-20 miles knowing him), so I took the time to visit my Mum with my girls (we have colds so didn't want to pass onto my Dad before chemo). She feels a little better and said my Dad has been better since the outburst. I haven't seen him for a couple of weeks, so it's difficult to judge any changes until I see him. 

His chemo starts Tuesday, hospital Monday though. I think I was going through one of those panicy moments when I posted, I honestly thought at the time that this was it (and still have and will continue to have those). I'm just hoping we manage to have a last Christmas together and to make more memories for the rest of us.

For me, I got my release this afternoon-nothing like a good game of footy to take my mind off things-without my beloved Brighton and Hove Albion, I really don't know how I'd have coped these past 4 months. Obviously family, friends and friends here have helped greatly too, but BHA are my escape from everything-a chance to scream and shout positively!!!! That's something my Dad gave me which this blasted cancer can't take away!!! 

Love to everyone here x

Pete I hope the weekend is kind to you and that you get all the support you should xxx

Hi Pete

Just read your post re aftercare. My mum did not have a brain tumour her cancer was a head and neck cancer.

I agree you are just left pretty much left to deal with the trauma following the passing. Unless you opt for counselling you are left alone. My mum had mac nurses involved when she was ill  but once she passed away we as a family did not get support. My mum was a second mum to my daughter and it hit her too . My dad died in his 40's of a muscle wasting disease around 17 years ago. When he died the district nurse who visited my dad at home came to see my mum on a regular basis.Got to admit his end of life care was not good but after he passed away i seem to recall the care was there.I think this was at a time when caring was caring and not outcome based health. 

Traceyxx

Hi Pam (and anyone else who can help) , I hope you don't mind sharing your experience with me as im seeking a bit more information on what I might expect in the very near future. My partner has grade 4 tumour and was given a 12 month prognosis. (Very fit 52 yr old who was never ill and therefore never needed to vist the GP). He collapsed in July and diagnosed as having a minor stroke and prescribed Sodium Valporate ( never had seisures of any kind prior to this). Appeared to be making an excellent recovery until he gradually became slow and confused, poor co-ordination,toiletting issues and extreme tiredness. Anyway at the end of September brain tumour diagnosis was given and he had surgery on the right side only ( tumour in both sides). Given steroids which were reduced and then ceased within 2 weeks. After he was discharged the symptoms returned and he very quickly deteriorated within 10 days of being discharged fron the Neurology Hospital in London.

Our GP referred him to the hospice for respite as we have 2 young children and he could see that my partners situation was so desperate that I could not manage to look after him without help (I also work). He remained there for nearly 4 weeks as the steroids brought on diabetes and his insulin levels needed managing. He's home now and expected to have 6 sessions of radiotherapy over the next 2 weeks (no chemo as the oncologist feels its not worthwhile.

Yes I've read the medical bumph about radiotherapy but im still really quite anxious and also scared of what is to come over the next few weeks. Whilst i know the purpose it to shrink the tumour - im also aware that it may not work and feel that this is make or break time. It doesn't help with my partner bottling up evrything and distancing himself from me and the kids and also being moody.

I'd like to hear from anyone who has anything to contribute to my experience positive or negative please.

Hi Aquarius, so sorry to hear about your husband.  Fingers crossed for him!

I have a benign brain tumour for which I had 6 weeks of stereotactic radiotherapy (slightly different to "normal" radio) back in the summer.  Unfortunately, I now have to wait until July 2012 for my next scan to find out if it has even worked - so I understand totally when you voice your concern over whether or not it will work.  However, aside from this, my feelings were that I had to give it a shot as my tumour is inoperable due to its location and chemo is not an option for my type of tumour.

I will keep my fingers crossed for you both - has he spoken to anyone about this?  I know from personal experience that it isn't always easy to talk to your nearest and dearest : even though we love them so much!!

Take care

Pilly :)